Public hearing 4: Health, Sydney - Day 7

COMMISSIONER SACKVILLE:   Good morning, everybody.  And welcome to this hearing in Homebush and also welcome to those who are following the proceedings remotely.  I’m sorry for the delay in starting.  That sometimes happens with hearings.  There are matters that need to be attended to.  Before asking Ms Eastman what will happen, I wish on behalf of the Commission to acknowledge and pay our respects to the traditional custodians of the land on which we’re meeting today, the Wann-gal people, and we also pay our respects to First Nations elders, past, present and emerging, as well as to all First Nations People who are present today or who are following the proceedings.  Yes, Ms Eastman.
MS EASTMAN:   Commissioners, you asked me yesterday what was going to happen today and I said I would tell you in the morning.  We have a very busy day and it’s likely that the hearings will go beyond 4.30 today.  But what we will seek to do is to structure the day so that there’s breaks between the witnesses.  We have seven witnesses in total giving evidence today and the order of those witnesses may be subject to a range of issues that arise during the course of the day in terms of timing and the like.
So we’re going to start this morning with Kathryn McKenzie and Lyn Porter who will give evidence in relation to the Community Visitors Scheme.  Ms Wright will be taking that part of the evidence.  And Commissioners, if you could excuse me for the next hour or so.  What we hope is this evidence will take about an hour, and then there will be a break for the morning tea adjournment, which should be close to or shortly after 11.  So if the Commissioners can excuse me, thank you.
COMMISSIONER SACKVILLE:   And thank you for that.  Yes, of course, we do excuse you.  Are there any further appearances to be taken for today?
MS McMILLAN:   Good morning, Commissioners.  My name is McMillan, initials K.A.
COMMISSIONER SACKVILLE:   Would you mind speaking into that microphone.
MS McMILLAN:   Good morning, my name is McMillan, initial K.A., Queen’s Counsel.  I appear on behalf of the State of Queensland for the – in relation to the two witnesses, Ms Barnett and Ms Nash.
COMMISSIONER SACKVILLE:   Thank you very much.  Yes.  Sorry, is there something else that someone’s       
MS HUNTER:   Yes, Commissioner, I appear       
COMMISSIONER SACKVILLE:   Someone’s leaping up.  Yes.
MS HUNTER:   Hunter.  I appear for Karen Barnett. 
COMMISSIONER SACKVILLE:   Thank you, Ms Hunter.
MS McKENZIE:   McKenzie, Commissioner.  I appear for Tracey Nash.
COMMISSIONER SACKVILLE:   Thank you.
MR HEALY:   May it please the Commission, Healy, I appear for AAJ, witness.
COMMISSIONER SACKVILLE:   Thank you very much.  Do we have enough room at the – what is a notional Bar table?
MR HEALY:   Arrangements have been made, thank you, Commissioner.
COMMISSIONER SACKVILLE:   Otherwise you can kneel or something and… all right.  Yes, Ms Wright.  Yes.
MS WRIGHT:   Yes, Commissioners, I call Kathryn McKenzie and Lyn Porter.
COMMISSIONER SACKVILLE:   Please do sit down and each of you make take the oath or affirmation as you wish.  Thank you.
<KATHRYN McKENZIE, AFFIRMED    [10.17 am]

<LYN MAREE PORTER, AFFIRMED    [10.17 am]

COMMISSIONER SACKVILLE:   Thank you very much.  Ms Wright will now ask you some questions.  
MS WRIGHT:   Ms McKenzie, I will start with you.  Could you state your full name, please, to the Commission.
MS McKENZIE:   Kathryn McKenzie.
MS WRIGHT:   Are you the Director of Disability at the Office of the Ageing and Disability Commissioner?
MS McKENZIE:   Yes, I am the Director of Operations at the ADC.
MS WRIGHT:   I see, thanks.  And you’ve been in that role since the creation of that office in about August of last year; is that right?
MS McKENZIE:   Yes, I transferred in July last year from the Ombudsman’s office to the ADC. 
MS WRIGHT:   And what was your role at the Ombudsman’s office?
MS McKENZIE:   Director of Disability.
MS WRIGHT:   You’ve prepared two documents for the Royal Commission.  One is a short summary summarising the New South Wales Official Community Visitors scheme.  And did you also prepare a submission in response to the Royal Commission’s issues paper in relation to health issues affecting persons with intellectual disability?
MS McKENZIE:   Yes, that’s right.  Which drew heavily on the work of Official Community Visitors, including Lyn.
MS WRIGHT:   And those documents, Commissioners, are behind tabs 1 and 1A of tender bundle C.  
COMMISSIONER SACKVILLE:   Thank you. 
MS WRIGHT:   Now, Ms Porter, could you state your full name for the record, please?
MS PORTER:   Lyn Maree Porter.
MS WRIGHT:   Are you an Official Community Visitor in New South Wales?
MS PORTER:   I am.
MS WRIGHT:   Do you hold your appointment under some New South Wales legislation?
MS PORTER:   Yes, I do.
MS WRIGHT:   And are you – do you work in a paid capacity?
MS PORTER:   I do.
MS WRIGHT:   All community visitors in New South Wales are paid as opposed to volunteers?
MS PORTER:   That’s correct.
MS WRIGHT:   And that’s a difference with the Victorian scheme; is that right?
MS PORTER:   That’s right.
MS WRIGHT:   You were first appointed as a community visitor in 2001; is that right? 
MS PORTER:   Yes.
MS WRIGHT:   Under the legislation, your appointments can’t exceed six years in consecutive appointments; is that right?
MS PORTER:   That’s right.
MS WRIGHT:   And so you’ve had a number of breaks between six year consecutive appointments, is that right?
MS PORTER:   That’s right.
MS WRIGHT:   So you’ve held appointments between 2001 and 2007, and then between 2011 and 2017?
MS PORTER:   Yes.
MS WRIGHT:   Is that the case?
MS PORTER:   Yes.
MS WRIGHT:   You were most recently appointed again in 2018?
MS PORTER:   That’s correct.
MS WRIGHT:   What areas of New South Wales do you look after?
MS PORTER:   I visit in the Blue Mountains, western Sydney, south west Sydney and the Hawkesbury.
MS WRIGHT:   How many visitable services, as they’re called under the Act, do you visit?
MS PORTER:   Currently I’ve got about 50 homes that I’m responsible for.
MS WRIGHT:   Do you visit each location twice a year, is that how it works?
MS PORTER:   Yes, that’s minimum visits.
MS WRIGHT:   Okay.  And you haven’t prepared a statement for the Royal Commission because you weren’t asked to, is that the position?
MS PORTER:   That’s correct.
MS WRIGHT:   Okay.  Now, Ms Porter, could you just describe briefly the nature of your role and what your particular responsibilities are?
MS PORTER:   So Official Community Visitors have the power to enter a visitable service, supported accommodation service, at any reasonable time, and we do that unannounced.  And we – when we enter, we speak to any person there, including staff members and, of course, residents, check any documentation in written form or electronic, and then we do a report, an electronic report, to the service, raising issues of concern, and they have a particular timeframe for a response.  And then if there is no adequate response then we have ongoing dialogue with the service.
MS WRIGHT:   Okay.
MS PORTER:   So the role of a visitor is to try to – we’re the voice for people in care, and we try to raise issues on their behalf to improve their circumstances.
MS WRIGHT:   All right.  So you’re ears and eyes on the ground, so to speak.
MS PORTER:   Exactly, yes.
MS WRIGHT:   And you have the right to speak to anyone there, residents, the staff, to look at records and to enter at any time unannounced.
MS PORTER:   Yes.
MS WRIGHT:   Now, just before I ask you about health related questions.  Ms McKenzie, you have provided some data in your submission to the Commission.  How many Official Community Visitors are there in New South Wales?
MS McKENZIE:   There’s 32 Official Community Visitors.  The scheme can support – budget-wise can support a maximum of about 40 visitors.  We’re currently recruiting to fill some of the vacancies but yes, about 32 at the moment.
MS WRIGHT:   All right.  And the information you’ve provided to the Commission is that there are 2051 visitable locations in New South Wales falling under the scheme;  is that right?
MS McKENZIE:   That’s right.
MS WRIGHT:   And 86 per cent of those are accommodation services where an adult with disability or older adult resides in full-time care;  is that the case?
MS McKENZIE:   That’s right.  So, yes, vast majority have intellectual disability, yes. 
MS WRIGHT:   And so the remainder – the 14 per cent are out of home care residences for children.
MS McKENZIE:   That’s right, and assisted boarding houses.
MS WRIGHT:   Thank you.  Now, the data you have provided to the Royal Commission in your three page summary is that in the 2018 to 2019 year, community visitors raised a total of 6125 issues.
MS McKENZIE:   That’s right.
MS WRIGHT:   Arising out of visits.
MS McKENZIE:   That’s right.
MS WRIGHT:   And 77 per cent of the issues related to disability supported accommodation.
MS McKENZIE:   That’s right.
MS WRIGHT:   Is that the case?  And then if I switch to your response to the issues – the Royal Commission’s issues paper, which is the longer document, you say that health care issues accounted for 20 per cent of all issues raised by community visitors in 2018/2019.
MS McKENZIE:   In relation to disability supported accommodation services, that’s right.
MS WRIGHT:   Okay.  So that was about 950 issues about health care.
MS McKENZIE:   That’s right.
MS WRIGHT:   Now, that covered a range of issues, is that the case, including access to timely and appropriate health services, and the adequacy of support provided by health staff?
MS McKENZIE:   Yes, that’s right.  So it covers – within the scope of, you know, issues relating to health care, it’s quite a broad scope.  It includes where the visitor identifies concerns about the extent to which a resident’s needs – health and related needs have been identified and the extent to which their – action has been taken to address those needs.
MS WRIGHT:   And one of the first issues you raised in your submission is about access.  And you refer on page 3 to disability support staff being the gatekeepers for residents’ access to GP and health services.
MS McKENZIE:   That’s right.  And I think – I mean, part of what – part of the point that we were making there as well, OCVs certainly see that disability support staff – in relation to some of the issues that I know have already been canvassed in the hearings relating to diagnostic overshadowing, it definitely happens in health services, but what OCVs see is that it also happens within disability accommodation environments, and very much people with disability in residential care are, for the  
most part, heavily reliant on disability support staff to be able to identify where there’s a need for them to access or gain health support, and in a range of matters OCVs have identified that some health issues weren’t sufficiently or – or weren’t identified in a timely way because the issues were seen as being part of the behaviour of the individual or part of their disability, rather than recognising that there was a health concern that needed to be – that they required some health support.
MS WRIGHT:   So it’s not only health services who are – or who engage in diagnostic over shadowing, it’s the disability support staff.  And that’s something community visitors have reported.
MS McKENZIE:   That’s right.  And overall – I mean, OCVs – and Lyn will obviously be able to talk to this in some detail, but OCVs, most of their contact is with – other than the residents, that’s a heavy focus for them.  Other than that, most of their contact is with the support staff.  They are able to see really clearly the critical role that support staff play and – in enabling access to necessary health supports.  But also the critical role they play in providing support to individuals to help them to better access health services to overcome some of their resistance to treatment or to assessment, to facilitate their access but to provide appropriate support in accessing those services.  
OCVs are in a really valuable position of being able to see – they’re not visiting health services but they’re able to very clearly see the impact on individuals of their limited access to health services.  Where there are issues in the support that they receive with health services, they can see very clearly the impact on those individuals.  And what they also see and report on really regularly is they’re in a really useful position of being able to see how important that coordination is between health services and disability providers.
MS WRIGHT:   And just to give an example, you’ve provided some examples of that sort of problem which has been raised by community visitors.  You’ve said, for example, recurrent – there was a case involving recurrent urinary tract infections and the person’s confusion was put down to their disability, rather than a treatable cause.
MS McKENZIE:   That’s right.
MS WRIGHT:   And it delayed treatment in that case.
MS McKENZIE:   That’s right.
MS WRIGHT:   And you also gave an example of falls – recurrent falls being attributed to progression of ageing and disability rather than something that required       
MS McKENZIE:   Treatable, yes.
MS WRIGHT:         a health service.
MS McKENZIE:   Yes.
MS WRIGHT:   Do you see that, Ms Porter, in your visits, that kind of issue?
MS PORTER:   Yes, I do.  And particularly around behaviour that – sometimes in services where the person’s primary diagnosis, if it’s a mental health diagnosis, and the staff generally are very clued into a person’s mental health needs, but there may be some emerging physical health concerns that are completely missed because staff are so focused on the mental health.  And that’s where their training is.  
MS WRIGHT:   I see.
MS PORTER:   Equally, in the group home model with the disability support workers, their role is absolutely critical in relation to a person’s health.  And actually recording and ensuring that the relevant documentation and appointments are completed for a person.  Time and time again I see out of date plans, out of date assessments, recommendations not being implemented.  So people are falling between the cracks because nobody’s connecting the dots.  There’s no – at the group home setting, the – all staff are assuming that somebody else has done it.  Nobody is actually checking the documentation.  And that is critical to ensure a person’s health needs are being addressed, that they are – the recommendations that come out of any appointment with a GP initially are followed up.
MS WRIGHT:   What have your observations been about how well staff identify or recognise health issues?  What sort of systems are there in group homes for monitoring health issues?  When you say things are missed and fall behind and are out of date?
MS PORTER:   Yes.  I think in particular for people with autism who have – you know, tend to have a very high pain threshold, or if a person’s non-verbal and has – you know, has some behaviours of concern, that could particularly be in relation to pain.  It could be pain-related quite often, you know, with – with dental pain, and it’s put down to pain – it’s put down to behaviour, and they’re given PRN for their behaviour to manage the behaviour.
So they’re – they’re not looking at the person and they’re just saying that it’s – that that’s just their behaviour and they’re not looking further, and they’re not making records, and they’re not taking a person to a GP which, you know, is – is what any of us would do, reasonably, if – if a family member had pain or – or appeared to have pain or was unwell, you would do something, but it’s just – or relevant handovers, you know, staff aren’t saying to the staff coming on, “Look, just watch Johnnie because he’s had a bit of a temperature”, or whatever.  It’s not – the concern on the ground isn’t there, that sometimes disability support workers are just not supporting a person and their health needs the way that they should.
MS WRIGHT:   Or even recognising that something is a health issue.  How do residents access general practitioner support or other medical health?  Is it through home visits or are they required to be taken to a GP?  How does that work?
MS PORTER:   Look – well, I would expect if a person’s living in the community and they’re integrated into their community that they would be – first there would be choice around the GP that they would access, and that would be around a whole range of things, and what I generally see is a GP selected for convenience, and that’s staff convenience.  So it may be that – when you go into a group home, it’s very common to see all – all residents in that home seeing the same GP.  And that is because that GP is local and will come into the home to do home visits.
And so there – there’s not – sometimes there’s just not choice.  Families aren’t even consulted.  It’s – it’s a phone call to say, “Well, we’re seeing this doctor”, and it’s – I see it consistently and I see it concerningly in relation to women who have a complex trauma past, and are living in an all-female group home and that group home is staffed by all females because of that complex trauma of sexual abuse, and yet the – the staff have elected for those women to see a male GP because the GP’s across the road from the group home.
MS WRIGHT:   I see.  And the GP either comes to the home or they’re taken.  And the choice of GP is made by the staff.  And you’re saying that’s a matter of staff convenience?
MS PORTER:   Mmm.
MS WRIGHT:   And is that an issue that you’ve raised       
MS PORTER:   I have.
MS WRIGHT:         with that particular home?
MS PORTER:   Yes, I have, many times.  I’ve raised the issue with the service to ask what choice – what choice did the – the person have in relation to that doctor being chosen.  I can give an example, if you like, a very recent one       
MS WRIGHT:   Yes, please.
MS PORTER:         from last night when I did a visit.  A resident had been moved from a supported accommodation home into a complex health home because the health needs had increased so much.  And part of the recommendation and the transition plan was that that resident needed to continue to see the GP, the GP of 10 years or 15 years because of the person’s complex health needs.  So then I turned to the next page to see that the GP that visits the house is now that person’s GP.
MS WRIGHT:   And that’s a different GP?
MS PORTER:   Yes.  Yes.
MS WRIGHT:   Yes.
MS PORTER:   So, obviously, I’ve raised that, and similarly, that that person needed to see particular specialists and a dentist, a specialist dentist.  All of that has been disregarded because they – there has been an action by the staff to choose the – the GP that goes to the home, the dentist that all the residents go to, the neurologist.  So there’s – I mean, it’s       
MS WRIGHT:   Yes.  So you’ve raised that with the staff at the home.
MS PORTER:   Yes.
MS WRIGHT:   And how are you able to escalate that, if at all?
MS PORTER:   So in my reports – I do a report to the service and that’s an electronic report, and that goes to, generally, the – the manager of the service, and sometimes the CEO.  And I raise that in relation to that resident to say, “How was that choice made and why, and what involvement did they have, and what involvement did the family have?”
MS WRIGHT:   Would you expect to receive a response from management?
MS PORTER:   Yes.
MS WRIGHT:   And if the response is not satisfactory, what mechanisms are there for you then to escalate?
MS PORTER:   So I communicate – and I have dialogue with the service in – it might be over the telephone, I might meet with the management, I might do a follow-up visit and ask that the manager come to the house and – and meet me so we can have a discussion there.  And, I mean, we – the idea and the whole philosophy of community visitor is to try and raise issues at that grass roots level but you also want to make sure that the – that the person’s rights are being expected and that they’re having choice that I could have, you could have, the person with the disability should have that, as much choice as possible.
MS WRIGHT:   All right.  Now, to what extent are Annual Health Assessments       
COMMISSIONER GALBALLY:   Excuse me.
MS WRIGHT:   I’m sorry.
COMMISSIONER GALBALLY:   Just before you go on.
MS WRIGHT:   Yes.
COMMISSIONER GALBALLY:   So what’s the next step if they absolutely refuse to do anything about it?
MS PORTER:   I’m – as a visitor I’m a bit hamstrung in – in how I can pursue that issue.  So what I would do is talk to the community visitor team and ask for some guidance, suggestions as to how to progress the issue.  And that’s really as much as I can do as a – as a visitor.  And it’s very frustrating because you do see time and time again where people aren’t having choice around the health practitioners that they access.
MS McKENZIE:   So there’s a number of mechanisms, I suppose, that visitors can pursue.  As Lyn said, it is – it is designed to be that mechanism to try to achieve local resolution.  But where the visitor feels they’ve gone as far as they can, the response is still inadequate or is missing the point or the service just isn’t taking action, as Lyn mentioned, should raise that with the Ageing and Disability Commission, the Community Visitor team.
In a number of matters, and depending on the nature of the issue that’s being raised, we facilitate the referral of those issues across in the legislation, it refers to visitors being able to refer matters – matters of concern to other appropriate bodies.  So the NDIS Commission in relation to some of the NDIS providers, which is – which are the services that the visitors are going to, there’s the – the ability to raise – refer matters of concern across to them or, indeed, the visitor to – to be the complainant to make a complaint to the Commission.
MS PORTER:   And I have done that in relation to other matters generally around violence and abuse.
COMMISSIONER SACKVILLE:   The Ageing and Disability Commissioner has certain powers under the Act, does he not?
MS McKENZIE:   Yes, we do – the Commissioner does, but primary jurisdiction over NDIS providers sits with the NDIS Commission.  And, in fact, our legislation requires us, where we receive a report that could be the subject of a complaint to the NDIS Commission, we must refer it across to them.  So the role that we play is essentially facilitating the referral of that information across to the NDIS Commission, and where there are issues in – in the response that visitors receive, we – we seek to escalate that.
COMMISSIONER SACKVILLE:   What proportion of your visitable services involve people who are on the NDIS?
MS McKENZIE:   So of the 2051 visitable services, 86 per cent are disability supported accommodation setting.  So the vast majority of the services that – visitable services that OCVs are going into are disability supported accommodation settings involving adults with disability.
COMMISSIONER SACKVILLE:   And would they all be on the NDIS?
MS McKENZIE:   Yes, all of those – sorry, all of those services are NDIS-registered providers, yes.
COMMISSIONER GALBALLY:   And the boarding houses?
MS McKENZIE:   And separately – so there’s a small number.  There’s 17 assisted boarding houses with a mix of adults with disability and adults with other additional needs relating to age frailty, mental health or other kind of additional needs, some of whom are – some of the residents are NDIS participants but not all.  Some are over 65 and ineligible for the NDIS.
COMMISSIONER SACKVILLE:   What is your experience with complaints made to the appropriate body within the NDIS?
MS McKENZIE:   We’re having some issues at the moment in relation       
COMMISSIONER SACKVILLE:   Tell us about the issues.
MS McKENZIE:   Yes.  So there’s a number of matters that we’ve facilitated, either complaints to be made by the visitor to the NDIS Commission, or, indeed, the referral of information across to the Commission.  In relation – and we do have some agreed arrangements in place between the Community Visitor Scheme and the NDIS Commission for the provision of that information, requests for further information from the visitors, and the interaction between OCVs and – and the Commission.  We’re having some issues at the moment – and Lyn, you know, has – is one of – of the visitors who have made – has made a complaint to the Commission raising concerns about circumstances for individuals but also raising concerns more broadly about particular providers.  And in – in a number of those cases the advice back to the visitor – well, one visitor didn’t receive information back from the Commission, it was only when they followed up.  But two received advice back that they couldn’t provide information about what action had been taken or the outcome due to privacy concerns.
From experience in handling complaints at the Ombudsman’s office including complaints by OCVs, there is information that can be provided that doesn’t breach any privacy issues or barriers on disclosure of information by – by the Commission.  So at the moment, we’re seeking a meeting with the Commission to seek to resolve these issues so that the complaints that are made by OCVs, one they get a timely response but also they get information back about what action has been taken on those matters.  Importantly, you know, the matters that OCVs are raising and certainly those that they’re seeking to escalate to a complaint are only after – either they’re really significant issues that the visitor always provides an opportunity for the service to respond first, but they’re either really significant issues that they want to get before the Commission or the other kind of complaint or oversight bodies, or  
they’re matters that – that the OCV’s sufficiently concerned about and they’ve gone as far as they possibly can within the scope of – of their role.
So the point at which we’re making a complaint, they’re not – by no means, they’re not trivial matters and they’re not matters that, in the main, OCVs are just referring across for information.  They’re generally matters that they’re seeking some action on, or consideration at least by the Commission to take action on.
COMMISSIONER SACKVILLE:   And what’s the procedure?  Is the OCV contacted by the Commission in order to understand more about the complaint, or does       
MS McKENZIE:   That is       
COMMISSIONER SACKVILLE:   Or is it just a matter of filing a written complaint and then it is up to the Commission.
MS McKENZIE:   So the process is that the OCV in the first instance comes to the OCV team.  We do kind of initial conversation/screening, really, of those matters, primarily to make sure that the visitor has raised it with the service first and provided an opportunity for them to respond.  And then we facilitate, so we will pool that information together on behalf of the OCV and send that information in written form across to the Commission so it’s clear what the key issues are, and also indicates – provides the contact details for the specific OCV, indicates whether they hold other relevant information that could be of use to the Commission in relation to those matters, but also the process then once that’s received is the Commission is to contact the OCV directly to discuss that matter and how they wish to proceed, so whether the OCV wishes to be the complainant in that matter, whether they wish to be identified as the complainant, or whether they just wish to provide information for the Commission to be able to – to take whatever action it sees appropriate.
COMMISSIONER SACKVILLE:   Are there circumstances in which the person with a disability himself or herself is the complainant?
MS McKENZIE:   There’s – not generally via the ones that OCVs make.  There have been – actually, sorry, there have been some where the – the adult with disability has raised the issue, particularly with the visitor.  The visitor has raised it with the service on their behalf, still hasn’t had any traction on that issue, so then has raised it and it’s gone as a complaint to the Commission.  So it’s – it’s by the visitor on behalf of – of the resident, yes, certainly.
COMMISSIONER SACKVILLE:   Thank you.
MS WRIGHT:   You mentioned access to GPs and some issues around that.  I just want to ask you both about the CHAP tool, the Comprehensive Health Assessment Program tool.  The Commission heard yesterday from Dr Lennox, who designed it.   
Do you see evidence, perhaps starting with you, Ms Porter, of it being effectively used or used at all       
MS PORTER:   I       
MS WRIGHT:         in disability-supported accommodation?
MS PORTER:   I see examples of it being effectively used, and I see staff very proactive, and I see instances where that CHAP tool is – has become a tick box exercise, and when you actually go through the – the booklet, you see that time and time again it’s – it says the person’s refused, not applicable, particularly in relation to women’s health.
MS WRIGHT:   When you say “person’s refused”, that the resident has declined to accept treatment?
MS PORTER:   To be examined or – yes.
MS WRIGHT:   And it’s noted in the CHAP tool that that’s the case.
MS PORTER:   Yes, but there’s no follow-up.  So it’s recorded that that hasn’t been addressed, so the person’s refused or they’ve said that that’s not applicable, but there’s no follow-up.  So it becomes – instead of it becoming, you know, a living document and a document that is enduring and people are looking at that and making sure that any recommendations or any outcomes are addressed, is just filed.  And some group homes I go into, they’re out of date.  You know, they’re two years out of date.
MS WRIGHT:   Yes.
MS PORTER:   Plans are out of date.  It’s not unusual to see health records that are out of date and nobody at that grass root level in the group home taking responsibility for driving that through to – you know, to the point where you and I would address our health concerns, they’re not being addressed.
MS McKENZIE:   I think in some instances too, you know, what OCVs particularly have raised concerns about also are, you know, for example, women’s health screening as part of – is a key part of the CHAP tool relevant, obviously, for women.  But often, you know, what visitors will raise is that, as Lyn is saying, it either will have NA on it or there will just be a big line through it, despite it being a woman with – a woman with disability but a woman who should be having the same health screening as any other woman in the community.
MS WRIGHT:   And so that is an issue raised more broadly by community visitors, about the use of the CHAP tool in particular or you’re talking more broadly about       
MS McKENZIE:   Yes       
MS WRIGHT:         barriers to or the lack of support given to residents to access medical treatment.
MS McKENZIE:   Yes, I mean, some of the issues, I think, with the completion of the CHAP tool by the GP, rather than by the service provider, are just recognising the need for – for example, women with disability to have access to the same screening and assessments.  I think there’s a number of kind of factors that play into that, including, as Lyn was mentioning, you know, where they record that the person refused to have it.  I think there are a range of people with disability, including those in residential care, who don’t like being touched, who don’t like having assessments, who, you know – who don’t like being in contact with people they’re not familiar with, or in settings they’re not familiar with.  But the concern, though, that has been raised is – and particularly by OCVs, as well as, I know, through the Ombudsman’s Death Review reports, is that it’s really difficult for OCVs to see that any work has been done with the person with disability to help them to be able to address those issues of resisting access or resisting treatment or resisting necessary health assessments.
MS WRIGHT:   And that would include exploring alternative options.
MS McKENZIE:   Exactly.
MS WRIGHT:   For example, I think one of you has given an example of a resident refusing mammograms, for example, and there may be alternatives, such as ultrasounds, that should be explored but you don’t see evidence of that kind of thinking.
MS McKENZIE:   Yes, it’s not – so those kind of, I suppose, reasonable adjustments.  So what other options are available for the person to still enable them to access necessary health assessments and treatment.  I think – I mean, the – where that becomes – it’s an issue in terms of accessing the health screening and the services they need to treat, the health concerns that identify and treat the health concerns that they have, but it particularly becomes an issue at the – I suppose, at the other end, where treatment limitation decisions are being made based on a perception that the person will object to having that treatment.
MS WRIGHT:   Right.  
MS McKENZIE:   So individuals who have been diagnosed with cancer, who anyone else in the community would have the option of – where it was appropriate, would have the option of treatment, chemotherapy or other treatment, you know, there will be information recorded to indicate that it wouldn’t be appropriate for the person because they wouldn’t be able to stand, either wouldn’t be able to sit still or they wouldn’t be able to – they would be too distressed by the treatment.  And I think they’re not without validity.  You know, some people would be distressed by that  
and some people would find it difficult to remain seated, but – and I think particularly what OCVs see and particularly ones like Lyn who have visited over a long period of time, is that no work – in most cases, no work has actually been done with those individuals to give them the best chance of being able to access and receive that treatment.  
So their resistance to medical treatment, you know, the way that that’s responded to, is the prescription of an antianxiety medication to have immediately before having a blood test or similar treatment, but it won’t – you know, that kind of resistance to medical treatment won’t be – won’t form part of a behaviour support plan.  So there’s no – you know, the opportunity to actually work with the individual, to assist them to minimise their resistance to treatment, to make it easier for them to receive the treatment that they need is effectively lost.
MS WRIGHT:   All right.  And Ms Porter, what sort of adjustments or actions, in your experience, could be taken to assist those persons to access medical treatment?
MS PORTER:   I think a person – a participant in the NDIS has support coordination, and I know that those dollars are limited, but if there could be some additional funding for support coordination, specifically to look at a person’s health needs, and to ensure that these things are taking place.  The – as far as support workers being engaged at that level, and supporting a person to go through a particular – for an appointment or through a procedure, there’s tools and resources out there.  They’re there for staff to access.  But when I ask that question, the staff just – they stare at me blankly because they don’t – they’re not aware that these tools and resources are there.  COD have tools.  
And that’s the frustration, is that the staff could have access and could have better support to support the person and I don’t see that.  And I see no planning in relation to a person having to have a medical appointment.  It’s made two and three months ahead, mostly.  If you’re seeing a specialist or a dentist, you know, it’s much longer.  And there’s no care or concern around the staffing and the rostering.  So sometimes it might be a casual staff member that turns up or agency staff member to take a person to a medical appointment that’s highly anxious, and of course they don’t go, and of course the appointment’s lost and there needs to be a follow-up appointment.  
That is so fundamental to supporting a person.  You know when the appointment is, but somebody at that level, at that group home level, needs to be oversighting that and making sure that the person is prepared, to the best of their ability, to undergo that appointment, to go to that appointment, to understand it, social stories.  And I see good evidence – don’t get me wrong, I see good evidence of support workers doing a lot of good work with people and supporting them, but equally I see really poor evidence of support workers not supporting a person and they have to go through that all again.  And meanwhile, the person’s health needs are just not being addressed.
MS WRIGHT:   You mentioned social – sorry.
 
COMMISSIONER GALBALLY:   Can I ask – can I just come in here?
MS WRIGHT:   Yes.
COMMISSIONER GALBALLY:   Where you see good practice compared with not such good practice, do you see that relating to the supervision and the management and the lines of – you know, the lines within the group home?
MS PORTER:   I do.  
COMMISSIONER GALBALLY:   Yes.
MS PORTER:   I do.  And it’s not necessarily that you need even a team leader or a manager on site.  You need somebody that’s oversighting correctly and supporting their staff to make sure that these things are done, and accessing social supports.  I see a service that do this really well, and the – and they don’t actually have a team leader on site but the team leader’s very mobile and is available to the staff, they access the tools, they get the right staff member that knows that person well and they take them to the appointment, they change the rosters, they do all of those – all of that pre-work to make sure that the appointment is a success.  So       
COMMISSIONER GALBALLY:   And the others?  The not       
MS PORTER:   Just no – there seems to be – it’s just chaotic sometimes in group homes.  You go in and it’s – there’s an appointment in the diary but no one’s turned the page to see that that appointment – no one’s done any preparation around that.  It’s just a surprise.  So whoever is coming on shift – and then they take that person from the home, put them in a van and drive them to a hospital or to a doctor’s surgery, with no preparation.  And you see it time and time again.  They say, “Well, we’re – we just have to transport them”.  Well, actually, no, you don’t.  You’re a support worker and it goes beyond that.  So I think in some services, it’s working fantastic.  And, you know, the line managers are across it and the staff, they know the expectation.  The service are very clear about what the expectation is.  So – and it’s not fair and it’s not equitable that people – it’s – you know, your health outcomes are dependent upon the attitude or the quality of the support workers.  And it’s enormously frustrating.  And – because I do see good evidence of it and it should be across the board.  And it’s not.
COMMISSIONER ATKINSON:   You mentioned that you saw a particular service where this is done well.
MS PORTER:   Yes.
COMMISSIONER ATKINSON:   Could you tell us which one that is?
MS PORTER:   Afford.
COMMISSIONER ATKINSON:   Thank you.
MS WRIGHT:   And you mentioned       
COMMISSIONER SACKVILLE:   Who are the service providers in general?  I don’t mean to identify, but what – can you give us an indication of whether they’re typically running a number of homes, group homes, are they individual service providers?  I would like to get a sense of who you’re dealing with.
MS McKENZIE:   Yes.  So most of the providers operate – so it would be – so it’s quite rare to see a provider only with a very small number.  There are some that only have a few houses, but, yes, it’s a mix of providers of really long standing, and the really huge service providers that go across multiple states and territories, to others that are just within New South Wales but equally have existed for a long period of time.  There’s also some providers that have come into the market only since the NDIS started, and some of them – I know OCVs, including Lyn – have had a range of concerns about, that they haven’t – they – their understanding about actually what needs to be done to meet the needs of individuals, what kind of compliance with practice standards looks like, just isn’t at the same level as the other – as the other providers, and presents a risk to some of the residents that they’re seeing.
MS PORTER:   I think on that, some of the new providers that have popped up with the NDIS, they’re very small, and they’ve required only a third party verification to launch into service provision, and that is very problematic because their policies and procedures are quite inadequate.  The staff – I have one service where the staff are – they’re not even support workers.  They come from the community.  The very – you know, very good hearts, but they have no understanding of people with disability and their needs.  So they just can’t even meet that fundamental – that very low level bar.  So there’s some emerging service providers who have come into the market with NDIS, but mostly the services that I visit, they’re long-term providers, and they’re very big.  
So – and it’s good.  As a visitor, if I visit a service and I visit five or six of their houses, I’ve got breadth within that service, I can see the quality or not.  Is it particularly – is it a systemic issue across the service or is it particularly in one home?  When you’ve only got one service it is difficult to, obviously, make that call.  But the – it’s variable and it shouldn’t be.  And that’s the frustration that I see, in that, you know, I will be in the same suburb and I can go to three homes and I can see such variable service provision.  And in relation to health, I can see, you know, the same.  It’s – some services do particularly – they may just do complex health, some services do complex behaviour, you get some services who think they can do it all, and sometimes not very well, if they’ve got – if you see a health model predominantly trying to take on a person that has got behaviours of concern, it’s problematic because the compatibility of the people living together is just not good.
MS McKENZIE:   I think – I mean, what visitors have also – which picks up some of Lyn’s points.  Some of what they’ve pointed to is, you know, where you’ve got a  
provider that has a really good culture and a good – and from leadership down, really puts an emphasis on health needs and identifying the needs of individuals and good – as Lyn was mentioning earlier, good monitoring system for how they stay on top of some of those issues to make sure the person’s needs are being met, you see better practice on a range of fronts, including, you know, in some of the matters I know that Lyn has raised previously and other OCVs, where there are particular providers who have put in place local arrangements with their local hospital.  
So have put in place arrangements for, you know, when one of their residents is admitted to hospital, the process that will be followed, arrangements around discharge planning and the communication between the service provider and hospital staff.  There’s requirements at the moment in health policy that – that they set up local arrangements with – with disability providers, but that as a rule doesn’t happen.  There’s very few of those that are – that are currently in place.
The ones that have kind of been put in place are – have really been led by the – some of those more proactive disability providers who have taken the leadership and ownership to reach out to particular hospitals to say, “this is the client group that we have or the people that we support”, and to seek to put in place some of those – those local arrangements.
MS PORTER:   And I think – can I just say, in relation to involving the person with a disability, so many times you see that they’ve had a communication assessment.  That tool is there and that’s for everyone that interacts for that person to utilise.  And generally you will see it in the filing cabinet or – and it – it’s not – the fact that the dollars have been spent to do a communication assessment tool to enable that person to have a voice and to communicate, and then to see it not being utilised, even that for – you know, when a person goes to hospital, if you see a really good hospital plan it has got all of that information, it has got the, “How do we communicate with the person?  What’s –” you know, what works, what doesn’t.
It’s there, and it’s just – even for the ambulance officers, if you see a good hospital plan, it sets out, you know, what the diagnoses are for that person, medications, how to communicate with them.  It’s got the critical information just in a few pages.  And then the staff – you know, good staff will support that person completely.  But you hear of cases where a person is simply put in an ambulance with a – with a staff member they don’t know and taken to a hospital they’ve never been to.
COMMISSIONER ATKINSON:   Well, one of – we had a hearing about group homes in Melbourne, and one of the matters that came out of that was the question of choice, people with intellectual disability or other disabilities having a choice as to what group home they went to.  Now, what you’re telling us is there’s a few things you need to know in order to make an informed choice about where you live.  So how does a person find out those – the things that you’ve been referring to?
MS McKENZIE:   I think that’s a really good question.  I mean, ultimately, I mean, I know the NDIS Commission obviously is – is doing audits and doing checks of – of  
the providers.  You know, I suppose there’s a question about the extent to which key information like we’ve been talking – you know, that actually makes a difference to people’s lives, things around not just, I suppose, culture and how the service operates, but – I know one of the things that Lyn and other OCVs have really highlighted is, you know, you will find a range of providers that have excellent policies in place, and – and really good guidance for staff, but OCVs repeatedly see that’s not implemented.
So you can have fantastic policies but actually not the kind of follow-through on the ground.  And I think some of that – that information, how do you make that information available to people with disability and their family to be able, as you say, to make an informed decision about – about the services that they would choose to – to use.
COMMISSIONER ATKINSON:   So what’s your suggestion?
MS McKENZIE:   I think the – I mean, part of it relates to the extent to which those audits pick up qualitative information, not just – I know in the past quality checks have been primarily about, well, whether key policies are in place, which – which doesn’t provide the – the full story.  So I think ensuring that the views of – of residents existing – people with disability are heard as part of that quality assurance process.  But I think it’s also about looking at, well, what information can actually be made public.  I just – yes, sorry, I don’t know what – what currently is made public by the NDIS Commission or – or what that focus is, but certainly I think, you know, some of that more qualitative information that actually gives a fair and accurate reflection about what’s happening in that house and how that service operates is the valued information.
COMMISSIONER SACKVILLE:   I think we should probably give Ms Wright an opportunity to ask a question or two.
MS WRIGHT:   That’s quite all right, your Honour.  Just – you both raised a lot of – a lot of points.  Just picking up on something that Ms Porter, you mentioned, you said, “In some group homes, some of the staff aren’t even disability support workers.”  Is there no – and perhaps it’s not a question you can answer, but, to your knowledge, is there any mandatory minimum requirement for training or qualifications for a person who’s a disability accommodation support worker?
MS PORTER:   It’s dependent on – on the service.  I mean, routinely, staff had to have a disability certificates to be – Certificate IV in Disability or a Cert III and working towards a Cert IV.  But what I have seen in the – particularly in one new service – two new services, the staff did not have any qualifications.  One had – one had an Aged Care and Nursing AIN certificate, and the other – the other staff did not.  So my question to the service was, “Well, what – what is the minimum qualification and what are you doing around that?”  Because – and even ongoing training for staff is very deficient.
MS WRIGHT:   You referred to complex health models       
MS PORTER:   Yes.
MS WRIGHT:         in some group homes.  Does that mean group homes where there is a registered nurse or enrolled       
MS PORTER:   Yes.
MS WRIGHT:         nurse on staff?
MS PORTER:   Yes, I’ve got       
MS WRIGHT:   Is that essentially what that means?
MS PORTER:   Yes.  So the complex health is the high medical needs.  The – and they’re staffed by a registered nurse and two AINs generally in the group home.  I have services that have gone from – they were a complex health model and with funding were not able to sustain that model so they went to a DSW model, and that model operates with a mobile clinical nurse consultant that might go across five of the houses.  So daily there is a nurse just oversighting if there are any concerns, any medical concerns, but – and there’s also complex behaviour models as well, and they – a lot of the staff that model – that staff those homes have a background in mental health nursing.
MS McKENZIE:   So I should just flag, I mean, we certainly wouldn’t be saying group homes need to be staffed by – by nurses.
MS PORTER:   No.
MS McKENZIE:   It’s about having access to that kind of more specialist support when that’s needed.  I think that part of the critical thing that visitors across the board have commented on since – I mean, a range of these issues have existed well before the NDIS, but one of the issues certainly since the NDIS that visitors have – have noted is – is reduced access to staff – to training for – for staff, that they just don’t see evidence of team meetings, they don’t see evidence of kind of regular access to training by staff, that it’s more kind of online modules that – that staff access.  But it’s not a regular feature of – of what staff can access.
MS WRIGHT:   Is that a consequence of the changed funding model post-NDIS?  Is that the issue?
MS McKENZIE:   Yes, I think it’s – pre-NDIS, obviously, services – the same services were – were funded by block funding so generally had a bit more leeway with the funding to be able to allocate some of that to staff training and to be able to take people offline and backfill those roles to be able to have training.  Certainly feedback from the visitors and from the providers is that that doesn’t exist – well,  
certainly the model is individualised funding and that there isn’t that scope to be able to provide the same access to – to training.  Whether – whether that’s accurate or not, but certainly that’s the feedback from providers to visitors.
MS PORTER:   Yes.
MS WRIGHT:   You both also touched on the question of hospital admissions, and also discharge and transfer of care back to the group home.  Ms McKenzie, at page 7 of your submission, you say that a strong theme raised by community visitors concerns the importance of good working relationships       
MS McKENZIE:   Yes.
MS WRIGHT:         between health services and disability accommodation services.  So I just want to explore that with you.
MS McKENZIE:   Yes.
MS WRIGHT:   About hospital admissions and then discharge home.
MS McKENZIE:   Yes.
MS WRIGHT:   What problems, if you could provide the Commissioners with an overview, do community visitors report associated with hospitalisation of residents of disability group homes?
MS McKENZIE:   Yes.  So – so there’s a range of – there’s a range of issues.  One – you know, majority of hospitalisations are unplanned admissions.  They’re in response to critical health issues that have – have emerged.  So the ability to do some of that preplanning generally isn’t there.  But – but what – what is really critically important is that at the time that the person is admitted to hospital or presents to hospital, that they’re – as Lyn has flagged, that they’re supported by disability staff that know the person, that are able to provide, you know, quality information across to the health staff, to hospital staff, that they have access to a hospital support plan or similar that – that provides a really simple, easy-to-read brief information about the critical – the critical information that hospital staff need to know to meet the person’s support needs in hospital.
MS WRIGHT:   And just – sorry to interrupt you there, but who is responsible for preparing a hospital support plan?
MS McKENZIE:   So many disability providers have – have done that work, whether it’s called a hospital support plan or there’s also a program that the Ageing, Disability and Home Care – the Department rolled out some years ago that still exists, to some extent, called Hospital to Home, I think it’s called.  Sorry, I’ve forgotten the name of it off the top of my head, but it’s a package of information that the provider has ready to go when the person is admitted to hospital that they can  
hand over.  There’s a number of – of hospital health policies that already exist that kind of point to the importance of that communication between the disability service staff and hospital staff at that point of – of admission.
MS WRIGHT:   You’re referring to New South Wales Health’s hospitalisation policy       
MS McKENZIE:   There’s       
MS WRIGHT:         with respect to people with intellectual disability?
MS McKENZIE:   That’s right.  So hospitalisation of people with disability policy.  There was also, a number of years ago, in response to the issues that have existed for some time about people with disability not having adequate support or the support that they need within hospital – a hospital setting.  Work was done to develop what was called a joint guideline between health and ADHC, Ageing, Disability and Home Care, but also applied to the non-government providers.
And essentially what that joint guideline set out was one provide a template for a hospital support plan for both sides to use, so for disability services to fill out with, “this is the critical information about the person’s support needs, and this is, you know, the key things that need to be put in place in a hospital setting for them.”  Hospital staff were then to use that to fill out the next bit which was through discussion with the person with disability, the service provider and – and other relevant parties, families or others to look at, “Okay. Based on those support needs, what – what needs to be put in place for the individual?, and to work out roles and responsibilities at that point.
That – that joint guideline was rolled out, was rolled out by ADHC and also rolled out across health services but wasn’t mandatory for health services, and generally there was an evaluation done a couple of years ago that found really poor uptake in – in health services, also generally poor uptake in disability services.  But that – but that work to, at the point of presentation or the point of admission, to enable the person’s needs to be understood and clearly communicated and things put in place to – to help them to meet those needs is – is fundamental, but – but on many, many occasions you don’t see that – that happening.  There are – you know, similar to what Lyn was saying before, there’s – there’s a range of tools that exist both for disability providers and also for health providers that provide guidance around things that can be done, so reasonable adjustments that can be made, ways in which information can be clearly communicated to hospital staff about the key issues for the person, and what supports that they need.
Those – those tools – and we’ve referenced a number of them in our – in our submission – are freely available.  And I know the Agency for Clinical Innovation Intellectual Disability Network in health has been responsible for developing a range of them and pooling them together to provide guidance to Local Health Districts.  But it’s – it’s that challenge of – of the health needs of people with intellectual  
disability being recognised enough as a priority for – for that to be not just rolled out across health services, but, you know, critically rolled out but also monitored.
So compliance with – with that guidance and compliance with, you know, health policy mechanisms to be put in place to – to look at – compliance with it, to look at – importantly, to look at the health outcomes of – of people with intellectual disability in – in hospital.  And I know Commissioners have heard already, as – as part of the hearings, some information about that, so I won’t go into that in too much detail.  But the need for there to be kind of performance indicators, and outcomes/measures associated with the access of people with intellectual disability to hospital and broader health services is so critical and isn’t there at the moment.
MS WRIGHT:   Okay.
MS McKENZIE:   The other key bit – sorry, really quickly – is that discharge planning.  So again, there are really good policies that exist in health around discharge planning, including specific reference to discharge planning for people with disability, but again, really variable practice on that front, and I know – you know, there’s some examples in our submission and examples I know that Lyn has also had, where they will see examples of a hospital ringing a disability service in the early hours of the morning to say, “We’re discharging someone”.  You know, that’s not an insignificant thing for a disability service, who may only have one staff there.  They can’t leave to be able to collect the person, but also it’s – what the policy and the guidance makes clear is, again, there’s supposed to be that conversation about an assessment by health about whether the person’s needs can be met back at their original setting once they’re discharged and       
MS WRIGHT:   Could I       
MS McKENZIE:   Yes.
MS WRIGHT:   You’ve raised a number of things.  I just want to seek Ms Porter’s input on the use of hospital support plans, and what your experience of that is, conducting community visits, whether you see evidence of hospital support plans.
MS PORTER:   Mostly they are there.  The quality’s variable.  The – and, obviously, I only see – I mean, I see the plans there and then I might go to a follow-up visit and see a person has had an admission and ask how that has gone.  The – I hear – even though it might – it will say clearly in the hospital plan how the person should be managed, time and time again you hear of a person in hospital that needs support to be able to eat their meal, and the meal just is placed in front of them and then taken away because there’s no support.  And I know that the NDIS funding has to pay for the staffing when a person’s in hospital, but it’s variable.  
And I don’t know if – if that could somehow be a master document that’s – that services – so that it’s consistent, and the information that’s contained in the plan is consistent.  And then it’s – again, it’s the implementation.  So it might say some  
really helpful things in there, but you need the resources that go with that.  So communication aids and anything else needs to be attached to that.  So, yes, for the most part I see hospital plans now, you know, years ago, no, they weren’t there, but they are there now, so everyone has a hospital plan.  It’s about the service provider informing the first responders, you know, the ambulance, and to be able to provide the critical information that’s necessary, and they go to the hospital with the person, and then once they’re discharged, then it’s handed over.
MS WRIGHT:   You don’t visit residents in hospital       
MS PORTER:   No.
MS WRIGHT:         when they’re hospitalised, and nor do you have access to hospital records.
MS PORTER:   No.
MS WRIGHT:   Is that the case?  Do disability       
MS PORTER:   It may be if there’s – obviously the discharge letter and things, anything that contained in the person’s documentation at the group home, I have access to, and more often than not it’s got discharge notes or reports from the hospital admission.
MS WRIGHT:   Okay.  And just on discharge, how effectively is that dealt with?  Have you ever had instances where, you know, there has been a lack of information from the health service or a lack of planning which has meant the person has had problems being taken back into care in their group home or had to be readmitted to hospital?
MS PORTER:   I have, where there has been no ownership.  So staff will – there needs to be really clear discharge planning, and there needs to be a handover.  It needs to be transitioned.  And staff need to be made aware of what the person’s needs are post-discharge.  And they need to have adequate training.  And I do see some good evidence of staff having to have particular training.  When a person’s coming out, they might have a stoma.  So they need to know that the staff are able to support them, does a community nurse need to come in.  It’s variable, and it’s – and I apologise for that but it’s – it shouldn’t be variable.  It should be the same across the board but for – it’s really dependent on the service provider having that communication with health, with the hospital.
MS WRIGHT:   At page 5 of your submission, Ms McKenzie, you’ve said that Official Community Visitors advise that there’s a continuing misconception among hospital staff that disability accommodation settings are medical models staffed by nurses and other health practitioners.  And so that’s a common issue that’s raised.
 
MS McKENZIE:   That’s a common issue and a really, really longstanding issue.  So that has been around for a long time.
MS WRIGHT:   And which predates the NDIS.
MS McKENZIE:   Predates the NDIS and, you know, is – I think, you know, reflects the medical model that used to be reflective of disability support but, you know, I will say, despite a lot of evidence to the contrary, that that perception, you know, continues to be there.  So despite health services having a lot of contact with people that clearly aren’t nursing staff, despite health policy indicating exactly that, that most of the residences are not – or most of the support staff are not nursing or health professionals, that that perception is really persistent.  And it affects things like discharge planning.  
So there’s an assumption that the person can be discharged back home despite kind of a significant change in their health needs, because once they’re discharged home they will be supported by nurses, when in fact that’s not the case and, as Lyn was mentioning, you know, critical need for support staff to have really clear guidance around the support that’s needed back at the group home, based on potentially changed needs during the hospital admission.  There has been, you know, numerous examples where that information hasn’t been adequately imparted to disability support staff with adverse outcomes for people with disability, including things relating to swallowing issues, where the swallowing function of the person has declined during that hospital admission but that hasn’t been adequately conveyed to disability services staff and – yes.
MS WRIGHT:   And       
COMMISSIONER SACKVILLE:   Ms Wright, we don’t want to incur the wrath of Ms Eastman, so perhaps another few minutes.
MS WRIGHT:   Yes, yes, thank you, Chair.  I just wanted to touch, if I could       
COMMISSIONER SACKVILLE:   Yes, sure.
MS WRIGHT:         on dental care, given that it is an issue that the Commission is interested in and looking at.  I think, Ms Porter, you have some particular observations to make about access to dental care for residents in disability supported accommodation.
MS PORTER:   I think the – it’s appalling the access to, in particular, public dental system, Westmead Dental, the waiting list is very long.  The staff at the group home tend to not do good dental care, oral care with a person, especially if they’re resistant to that, which mostly they are because they don’t want something shoved in their mouth, so they’re very resistant to that.  The – I’ve seen oral hygienists be employed to deal with that very issue, to actually work with staff to assist them to know how to best provide oral care to a person, do – you know, to look for any cavities or  
concerns, or is the person in pain, and then to facilitate access to, you know, you may be able to see a private dentist.  
There are a lot of dentists now that – not a lot, but there are dentists out there that have an interest in people with intellectual disability and treating them.  The – a lot of people that live in supported accommodation have – they have funds because the residual of their pension is not spent, they have tens of thousands of dollars that could be spent accessing a specialist dentist, but again, staff just say, “Well, they’re on the waiting list for Westmead Dental”, and what – and I mean, oral care – oral health is connected to our physical health.  
MS WRIGHT:   Yes.
MS PORTER:   And again, it’s just – it seems to be dismissed by support staff to say, “Well, they’re on a waiting list and that’s all we can do”.  They’re not doing – they’re not proactive, and they can be.  They could try to get, at the very minimum, an oral hygienist.  Because I do know – and I know that sometimes I will talk to residents, and you can clearly smell that they’ve not had their teeth cleaned that day.  And they – the staff – some staff just don’t seem to consider that a concern.  You know, “I tried and that’s all I will do”.  The same as I think I raised in here too and I know it’s completely off issue, but recording weights for people with intellectual disability, critical to health if anything’s emerging, if there is any concerns around their health, and people aren’t being weighed for two years, people aren’t seeing dentists for two years.
MS WRIGHT:   And you’ve seen cases where residents have lost weight progressively over time because of an overarching       
MS PORTER:   And they’ve had a cancer diagnosis, yes.
MS WRIGHT:         issue and that hasn’t been picked up because weight hasn’t been routinely done.  Ms McKenzie, just finally, do you have anything you wish to add in relation to dental care and access to dental care?
MS McKENZIE:   No.  Basically, the broader visitors going into services have said consistent information to what Lyn has imparted, just really significant waiting lists for those specialist dental clinics, public dental clinics, inadequate kind of exploration of other options for individuals, and that applies also to people in assisted boarding houses, you know, can also be significant dental issues and also waiting long periods of time to access that health support.
MS WRIGHT:   Yes.  Thank you very much, both of you, for your time this morning.
COMMISSIONER SACKVILLE:   Ms Porter and Ms McKenzie, thank you very much for both your submission to the Commission and for coming and giving evidence today.  Both have been very helpful.  Thank you very much.
MS PORTER:   Thank you.
MS McKENZIE:   Thank you.
<THE WITNESSES WITHDREW    [11.26 am]
COMMISSIONER SACKVILLE:   Ms Wright, shall we take a 15 minute adjournment?
MS WRIGHT:   Yes.
ADJOURNED    [11.26 am]

RESUMED    [11.49 am]
COMMISSIONER SACKVILLE:   Yes, Ms Eastman.
MS EASTMAN:   Commissioners, I understand from the evidence that was given just before the break that we need to formally tender the submission and mark that as exhibit 4.26.
COMMISSIONER SACKVILLE:   Thank you.
EXHIBIT #4-26 NSW OFFICIAL COMMUNITY VISITOR SCHEME PREPARED BY AGEING AND DISABILITY COMMISSION DATED 12/02/2020 (ADC.9999.0001.0001)
EXHIBIT #4-26.1 SUBMISSION FROM AGEING AND DISABILITY COMMISSION IN RESPONSE TO ISSUES PAPER DATED 1/02/2020 (ISS.001.00038)
MS EASTMAN:   Thank you.  Commissioners, we now have evidence from a witness who will have a pseudonym, AAJ.
COMMISSIONER ATKINSON:   Sorry, Ms Eastman, there were two documents referred to by the last witness.
MS EASTMAN:   Now you’re tricking me because I wasn’t here.  So I understand that the documents which would be found in       
COMMISSIONER SACKVILLE:   I think they’ve probably been gathered together.
MS EASTMAN:   All right.
COMMISSIONER SACKVILLE:   Yes.  There is a nodding that suggests that they’ve been dealt with together.
MS EASTMAN:   So I think there’s two documents but together they will be marked exhibit 4.26.
COMMISSIONER ATKINSON:   Thank you.
MS EASTMAN:   All right.  Thank you for that.
COMMISSIONER SACKVILLE:   Very good.
<AAJ, AFFIRMED    [11.50 am]

<EXAMINATION BY MS EASTMAN

COMMISSIONER SACKVILLE:   Thank you very much.  Ms Eastman will now ask you some questions.
MS EASTMAN:   So, Commissioners, our witness is subject to some directions made by the Royal Commission in relation to the pseudonym to be given to this witness, who will be known as AAJ.  And I’m going to call her Dr J for the purpose of the giving of the evidence.  If anyone needs a copy of the relevant orders, then arrangements can be made for those orders to be available.
COMMISSIONER SACKVILLE:   Thank you.
MS EASTMAN:   So, AAJ, you have prepared a statement for the Royal Commission?
AAJ:   Yes, I have.
MS EASTMAN:   And it is dated 8 February this year.
AAJ:   Yes.
MS EASTMAN:   And you’ve read the submission, and the contents are true and correct to the best of your knowledge and belief?
AAJ:   Yes, they are.
MS EASTMAN:   Now, I just want to just check that we’re picking you up in the microphone and that it can be heard.
AAJ:   Is that okay?
MS EASTMAN:   That’s even better.  Thank you very much.
COMMISSIONER SACKVILLE:   And don’t hesitate to speak nice and loudly.
AAJ:   Okay.
MS EASTMAN:   Right.  Now, I’m calling you Dr J, because you are a qualified medical practitioner?
AAJ:   I am.  I’m a specialist at – in palliative care.  I’m a senior staff specialist.  And I’ve been practising as a specialist for over 20 years.
MS EASTMAN:   And over the past 20 years, you’ve developed an interest in the management of patients with intellectual disability, both within the field of palliative medicine and general medicine; is that right?
AAJ:   That’s right.  When I – in my first specialist job, I worked purely in the community so I saw quite a few people in group homes.  I’m now a specialist in a teaching hospital, and, obviously, I see people through that domain.  So I’ve seen people at home and I’ve seen people in hospices, I’ve seen people in acute – acute facilities, and I also do outpatient clinics.  So they’re the sort of – you know, all the domains in health.  I’ve worked in all of those.
MS EASTMAN:   Right.  And for the purpose of the evidence for this Royal Commission, is it right, as you say in paragraph 12, that what you seek to do in this evidence is to provide a description of some of the poor decision-making that you have observed by clinicians looking after people with intellectual disability in a health system over the past 20 years?
AAJ:   Yes.
MS EASTMAN:   And you acknowledge that patients with intellectual disability have a life expectancy 20 years lower than their age-matched peers, and you welcome the opportunity to engage directly with the Royal Commissioners as to how patients with intellectual disability have been undertreated, mistreated, abused or ignored by the health system on occasions; is that right?
AAJ:   That’s correct.
MS EASTMAN:   I think you are guided by a saying that’s recorded in paragraph 14, and that is:
How a society treats its most vulnerable is always a measure of its humanity.
AAJ:   I think so.  I think if we treat the weakest in society, we will always be treating people well.
MS EASTMAN:   And you have a particular concern about the experience of adults with intellectual disability, and the perspective from palliative care is that you often see adults with intellectual disability towards the end of their lives.
AAJ:   I think my experience has been that sometimes people are actually inappropriately referred too early to me, which goes against the grain in – in my specialty.  We actually want people to be referred early so we can help them as much as possible.  And so I’m frequently seeing people years before they die.  But on several occasions in the case of people with intellectual disabilities, I’m actually – they’re referred to me before they’ve been offered any treatment for what is usually a cancer.  And this, you know, has greatly concerned me because, you know, those patients have – have been able to have treatment with what we call – you know, we obviously may have to modify that treatment, but it’s often not even being considered.
And if you’ve got someone with an intellectual disability, well, then, they obviously don’t realise that’s the case.  Or if they have a parent or guardian, they may have been told, “Well, you know, this is too much for them.”  And there are times when treatment for a cancer with somebody with a disability may not be the right option in terms of active chemotherapy or radiotherapy, but there are times that they should be treated, and I’ve come across times when they haven’t been, and this has been very concerning to me.
So in reality, yes, I do want to – I want to look after people with intellectual disabilities, but at the right time and the right place.  I don’t want them to be referred to me when other treatments might be appropriate.  And the patients that have had treatment, I’ve continued to see them, but it’s – I have recommended they have more active treatment.
MS EASTMAN:   Well, is it the case – and I think you deal with this in your statement – that often someone may present with a fairly advanced disease at the local emergency department, and if at that moment in time we look backwards, some of the underlying issues are, first, how did a person come to a point of having an advanced disease with a presentation in emergency.  That requires us to look back and ask the question, what was happening in terms of primary health care, both preventative care, regular check-ups, access to GPs, access to a range of other allied health services.  Is that right?
AAJ:   Yes.  And I think the – the prior two ladies who gave evidence really spelt that out a lot, in that they really sold the message that people are not getting – always getting primary health care services.  But I also think that you cannot have the onus completely on disability support workers to know what to do next.  So, you know, I –  
I feel that the current system of general practice is just very much a very quick in/out.  You know, where – where I work there’s lots of bulk-billing places, you would be in and out in – in five minutes.
And if I may give an example, a colleague of mine who’s a GP in Adelaide said that she often goes to see someone who has seen several doctors very, very quickly, but no one spent the amount of time you need.  You are going to need more time.  I’m not going to say that this can be done in the same amount of time, but I don’t think that general practice is looking after the needs of people with intellectual disabilities very well because they are often very time – pushed for time.  And also the whole issue of doing home visits, some of these people will need home visits.  It may be actually too difficult to get them to go to a surgery and stay there, but we – we – if GPs do that, they know they’re losing money, so they don’t do it.
MS EASTMAN:   All right.
AAJ:   Or they rarely do it.  I shouldn’t say they don’t do it;  it’s uncommon.
MS EASTMAN:   So the approach that you’ve taken in your evidence is to provide some particular patient examples where you’ve been involved in the care of a patient that has come to you in a palliative care context.
AAJ:   Yes.
MS EASTMAN:   And you want to illustrate, I think, some of the issues that arise through the examples of the patients.  So, Commissioners, this starts at paragraph 19 of Dr J’s statement.  And we will deal with case number 1.  So a few years ago a woman in her 60s came to the emergency department bleeding heavily from her cervix.  There were some initial investigations done at the emergency level.  And do you want to take up from here what happened?
AAJ:   Yes, she came in and she was bleeding so heavily that she went into an abnormal heart rhythm.  She had lost so much blood.  And that’s when the sort of disagreements started, because if a patient is new and not known to a previous service, they have to be admitted under somebody.  And there was some disagreements about who she should be admitted under.  And initially, she was admitted under cardiology, but then it became clear that the cause for her abnormal heart rhythm was her bleeding cervix, so she should then be under gynaecology or specifically gynaecology oncologist, so someone who deals with cancers in – in women.  And there was toing-and-froing, and – and she – she – she ended up being put in put in under a general gynaecologist, which wasn’t really the right place.  She should have really been under a cancer specialist.
But nonetheless, they were doing the right things.  And she was going to go for a biopsy, and the notes – the person who came – somebody came to see her and just in a – would get a referral sheet.  So if you’re referred to another specialist, you get a  
little referral sheet, and on it, it just said, “Social issues, plus, plus, plus, for biopsy, then home.”
MS EASTMAN:   So you – were you called in at some point in time?
AAJ:   I was called in when a colleague of mine was asked to see her because she was going to be sent home, and it was specifically stated that she must come back in under palliative care should she re-present.  Well, there’s several issues with that because she didn’t want to go to a nursing home.  She had a home.  And a colleague of mine was a – had just started, she was a junior specialist, and she said, “I just don’t feel right about this.  I’m not sure about the decision-making.”  And then so I did go and see, and nobody had spoken to the GP.  She obviously – it just said – it said, “Mental age of five.”
MS EASTMAN:   So when you say that –and you deal with this in paragraph 22 – you went to the notes and someone had documented that the woman who was in her 60s had a mental age of a five-year-old.
AAJ:   Yes.
MS EASTMAN:   And you were surprised by this statement, and you queried whether or not the person who had written the statement may have had any experience or training in assessing       
AAJ:   No.
MS EASTMAN:         an adult with intellectual disability?
AAJ:   No.  I’m sure it was just a random statement saying she has a disability, an intellectual disability, but there was no looking at – no one had rung the GP, people said the number wasn’t in the notes.  So what I did is I – I changed the number.  Sometimes the numbers are wrong.  And if you change the number – and I got through to the GP by just changing the last digit of the phone number.
MS EASTMAN:   And what happened when you spoke to her GP?
AAJ:   He said that he didn’t see her that often, but despite being institutionalised for much of her life, she had been discharged to – she lived with somebody who was really – was a friend who also had some – some problems, but somehow they had really managed to make this work.  They lived in their home, they were happy.  And so that – obviously, that’s where she wanted to go back to.  He told me what medication she was on.  He didn’t have – many people have been moved to South West Sydney because of cheaper housing.  There was actually no record of her earlier – her earlier life.
MS EASTMAN:   But I think part of what you were able to find out was that this patient had been on antipsychotic       
AAJ:   Yes.
MS EASTMAN:         medication for a number of years.
AAJ:   Yes.
MS EASTMAN:   And you say that might have been common for people who had been institutionalised in the 1950s       
AAJ:   Yes.
MS EASTMAN:         and 60s if one had an intellectual disability.  And so this then required managing some aspects of her treatment.  So after speaking to the GP       
AAJ:   Well       
MS EASTMAN:         finding out about the medication, you say in the statement that there had to be some behavioural adaptions to her manager on the ward.
AAJ:   Well, we put her back on her medications because you wouldn’t suddenly cease it.  Then what – the most important thing from my perspective in terms of managing a cervical cancer is what were we doing for it, and it’s – it’s very well known that bleeding can be very well managed with radiation.  So every cancer has its own staging, and for this stage of cancer, the treatment would normally – would either be radiotherapy alone or chemotherapy and radiation.  And I’ve got some – the radiation department I work in I think is very, very good, and they planned once I said I think – you know, they were very, very happy to treat her.  They thought that was very appropriate.  And everyone was saying, “Oh, she won’t make radiation.  It will be –” anyway, she went down every day, had about five minutes of radiation, kept still, and – and it was – and it actually went very, very smoothly.
MS EASTMAN:   And that resulted in the bleeding       
AAJ:   Yes.
MS EASTMAN:         being under control.
AAJ:   Completely – completely under control.
MS EASTMAN:   Which, in turn, meant she was able to be discharged from hospital.
AAJ:   Yes, she went to a subacute facility in – in another part of – in another part of our district.  And she did quite well.  She did, in the end, go to a nursing home because it was deemed that her physical health wasn’t well enough for her to go home, but that was all done in a planned way, and met with – met with her friend  
who she had lived with for several years, and he just continued to visit her in the nursing home.
MS EASTMAN:   So lessons learnt from this patient you’ve set out in paragraph 26.  So you say it’s hard for you to understand why this lady was initially not offered any treatment for her cancer.
AAJ:   Mmm.
MS EASTMAN:   She had some form of intellectual disability that had probably never been diagnosed, and – but she had managed well over the 20 years living in the community with the help of her friend and an attentive GP.  You think that if the doctors maybe had slowed down or taken time with the patient, then that extra time would have been vital, you say, for good decision-making.  And I take it by “good decision-making” is really thinking about what appropriate options might be for this patient given the nature of her disability, the extent of the cancer, and how any modifications could be made to ensure that the treatment was appropriate;  is that right?
AAJ:   I think that when patients go through the health system, it’s pretty much – it’s – most hospitals are very busy, and you go on a conveyor belt and you see this person, then you see that person, then you see the occupational therapist, then you get discharged home.  But people with disabilities can’t go on that conveyor belt in the same way.  And – and – and not enough time – more time needs to be spent, obviously, in terms of communication, in terms of planning, deciding what’s appropriate.  Like, this – this woman didn’t have standard treatment, but she had a modified treatment.  And, in fact, one of my colleagues from radiation, she had actually noted that this was the only patient not talked about at an MDT, and she followed it up because she wanted to know why one particular patient, because we all talk about each – every patient has to go through an MDT process which is where a specialist from every discipline is there to make       
MS EASTMAN:   You might have to explain what that process is.
AAJ:   Okay.  Okay.  So maybe 10 people in a room – so for cancer, it would be a medical oncologist, a radiation oncologist, a palliative care doctor, a surgeon, somebody – a radiologist, and you present all the information about that patient that – that you have, so all the images and the history.  And – and you talk – so it’s to talk about every new patient that comes through the service to make sure there’s equity and that it’s not a random doctor deciding to do this or to do that.  So you say – you sit there and you make a decision.  It’s all recorded.  And – and so it’s just for new patients to get – to make sure there’s some quality control in decision-making.  But the radiation oncologist I knew who was one of – who – who was interested in – who did gynaecological oncology noted that this woman was the only one that was not talked about at the meeting.
MS EASTMAN:   All right.  Can I turn now to case number 2.
COMMISSIONER SACKVILLE:   Just before you get to case number 2, is it an inference from how you’ve described case 1 that if this person had not had an intellectual disability, the cancer would likely to have been picked up much earlier?
AAJ:   I don’t know if she had screening.  It was a very late presentation.  And most cervical tumours are picked up much earlier than that.  So it is very likely that she wasn’t screened.  But I – I don’t have evidence of that.  I didn’t ask the GP.  He seemed to – you know, he was very caring and, yes, she may not have – as we talked about, she may not have agreed, but it’s likely that she didn’t have cervical screening that’s available.
MS EASTMAN:   So turning to case number 2, so about two years ago you saw a new patient at the palliative care clinic.  He was a man of about 40 years of age, and he also came to the clinic with advanced cancer.  He had a mild to moderate intellectual disability and he lived with his sister, who was also his carer.  The sister had taken her brother to the GP several times over the course of a year because he had bleeding from what was described as a back passage.
She was told numerous times – that’s the sister – by the GP that the patient had haemorrhoids, and there was no need for further investigations.  So about a year later the patient was found to have had extensive cancer in the liver which had spread to his bowel, and the bleeding had been the first sign of the cancer being present.  So you say, based on your professional experience, it would have been impossible for the GP to say for certain that the problem was related only to haemorrhoids.  And you say: 
Every doctor should know that bleeding, as in this situation, needs further investigation to eliminate the possibility of cancer.
So the sister felt that the matter hadn’t been investigated because her brother had an intellectual disability.  And it was then for the sister to have to tell her brother that he was likely to die soon.  So with respect to the observations that you made in relation to this patient, and what should have been done before, and the influence of the patient’s intellectual disability maybe masking some other symptoms, what opinions did you form?
AAJ:   Well, the fact was, just to slightly change it, that the bleeding would have been the source of the primary cancer, and then a year later, because it has not been investigated or treated, he has now got rampant disease and he’s going to die.  She had – she told me she had persistently said to the GP, “Well, it might be something more than haemorrhoids”, because, obviously, bleeding from the back passage is a common cause of bleeding.  And so when it did turn out to be cancer, she was so upset with herself for not pushing it harder, or maybe going to another GP, but she shouldn’t have had to do that.  She should have just been – and why wouldn’t you investigate a 40 year old with a – you – if bleeding settles down, you maybe leave it, but most doctors would be very keen to rule out a malignancy in that situation in a young person.
MS EASTMAN:   Right.  Can I turn now to case number 3. So this is a very recent case.  And is it the case it’s an ongoing case for you? This is a referral of a man who is 37 years old.
AAJ:   Yes, yes, yes.
MS EASTMAN:   He has a background of intellectual disability, but he has a job and you say is very content with his life.  He lived at home and travelled widely with his parents.  So he has had a diagnosis of a very rare skin tumour; is that right?
AAJ:   Yes, he       
MS EASTMAN:   And he was referred to you by a haematologist who had decided not to offer this young man any treatment for his cancer.  All right.  So you then pick up the referral.  What happens with this patient?
AAJ:   Well, this man, as you say, is a young man with a nasty tumour which is a superficial spreading tumour but really you end up being covered in tumours.  It’s well known to not be curable, but treatment can – you know, chemotherapy can palliate it and keep it at bay.  But the parents were told that, you know, he wouldn’t really be able to tolerate treatment.  And I feel that that decision was made without really knowing what was available, because there’s various forms of chemotherapy.  You can have gentle chemotherapy from which you get very few side effects, you can get aggressive chemotherapy, which is designed to – obviously to try to cure you, and there’s other treatments in between.  
And I felt really uncomfortable about this.  I just didn’t feel they really understood the sort of variation in treatment, you could have a more gentle treatment, if you like, than a more aggressive treatment.  And I was put in a hard situation, because this is a public health system where somebody is on call, that person goes and sees somebody, that’s their decision, they call me, I don’t agree with decision 1.  And I don’t want to – and I felt there had been very, very little discussion between the consultant and the parents because the parents didn’t want him involved in any complex decision-making.  So what I did is I used – I asked someone else to see him.
MS EASTMAN:   Yes.  You had to do a bit of engineering, didn’t you?
AAJ:   I engineered – I had to do       
MS EASTMAN:   You got a second opinion; is that right?
AAJ:   I got a second opinion without offending number – person number 1, by telling her and saying, “This person may have a little bit more experience”, and anyway, they – he did have a bit more experience.  He saw the patient, the patient’s had some treatment and, in fact, a drug came on the market in this year which is a new immunotherapy which he has responded to really, really well, and he’s – as I was told the other day, like a new man.  So he’s not just alive, he’s a lot better.  And  
I cannot prove it, but I really feel that first decision was made on the basis of him having an intellectual disability.
MS EASTMAN:   Case number 4. So recently you’ve become aware of a patient when a palliative care colleague wanted to discuss this particular case with you.  A man has an intellectual disability and he required an indwelling catheter in order to urinate properly.  Unfortunately, all the catheters over time had become infected and needed antibiotic treatment.  So I think you note that a person can become unwell fairly quickly if there is a bladder infection.  So the patient spent a period of time in the hospital, is that right, together with some emergency presentations?
AAJ:   He had come back       
MS EASTMAN:   So what was the sequence?
AAJ:   When you have a catheter in, you always get infections.  You can’t get away – it just happens.  So you end up, if it’s after hours, coming into emergency, or you end up coming into emergency if you’re very unwell.  And he came in with a recurrent infection.  Before, he had always been treated and sent back to the group home.  But on this occasion, a doctor working there decided that maybe he had had enough, and he felt that his quality of life would be better if he was at home.  Which I do not agree with because if you have an infection, you feel unwell.  He doesn’t have a palliative care diagnosis.  The way to treat him is to give him – to give him more antibiotics.  Now, this is an inconvenient thing for him, but it’s a necessary thing.  But on this occasion it was decided, without any discussion with family or – well, certainly not with the doctor that knew him, not with the manager at the home.  The family were given a call to say he was going home but they weren’t clear what was going to happen.  And he was sent home with a bottle of morphine because       
MS EASTMAN:   Back to a group home.
AAJ:   Back to a group home.
MS EASTMAN:   And were there any instructions given as to the administration or use of the morphine?
AAJ:   I can’t remember.  They – the group home would not have been able to administer it because they’re not registered nurses.  And also, you can’t – if you are going to administer to get authority, it has to be in a Webster-pak.  It can’t be a liquid like that which can be opened and tampered with.  So the nurse – the group home get him back with a bottle of morphine and are told       
MS EASTMAN:   Well, what’s the purpose of sending him back to a group home with a bottle of morphine, if no one can administer it?
AAJ:   Because some people equate palliative with morphine, which is not necessarily the case.  I do not know.  I do not know.  It just seemed to be – this  
person said they deserve the dignity to die – or to continue – it’s not clear.  They said that he should stay at home.  Here’s the morphine.  He didn’t have pain, by the way.
MS EASTMAN:   Was it the case – his patient’s notes read something to the following effect:
It is not in his best interest to have repeated emergency department presentations.
AAJ:   Yes.
MS EASTMAN:   And so you’ve interpreted that that somebody has made a decision as to what is in the patient’s best interests with respect to receiving antibiotics for a life-threatening infection.  And your sense was that that decision was that he would die without further treatment;  is that right?
AAJ:   It’s possible.  Now, in – with people with intellectual disabilities, if there’s a cause for an infection that can never be eradicated, then there may be a time when you don’t treat them anymore, but this was a case of someone with a clear cause for the infection, a clear remedy, and so even if the person felt that it was inappropriate, that’s the sort of thing you would get your family around, you would talk to them, you would try and ascertain the patient’s wishes.  You wouldn’t, in the middle of the night, decide not to give someone antibiotics.  It’s the wrong place and the wrong time.  And as it stood, he – he’s, you know, got over that infection, and I’ve suggested that they try and put in a suprapubic catheter which much less likely to get infections.  So that’s another thing that may help with his readmissions.
MS EASTMAN:   You say at the time that you prepared this statement, this patient is stable in his group home, he has enjoyed Christmas with his family, and you feel that he has got a future;  is that right?
AAJ:   I feel that, you know, nothing really had changed in his life.  He had just needed to have another infection treated.  If there are other problems that come to light that will need treatment, I don’t – the person who asked me to see him, I had said we don’t actually need to see him.  He’s not needing palliative care, he’s needing good primary general practice care.
MS EASTMAN:   All right.  Case number 5.  And this is where you want to give some examples of patients who you describe as being shunted in the system; is that right?  So this is an incident in 2018.  And an adult palliative care ward looked after a 16 year old boy with severe developmental delay and respiratory infections.  So this young man was not your patient but you discussed his case with a colleague.  And the issue that arose here was that this boy was extremely unwell, and he was on life support.  And you say but against the odds he was weaned off his ventilator and then needed to go on to a ward for ongoing care.  The issue was whether or not he could be managed in the paediatric ward; is that right?
 
AAJ:   Yes.
MS EASTMAN:   And you say that the paediatric ward would not accept him because they felt that his needs were too high for a paediatric ward.  The adult respiratory ward would also not accept him for his care.  And you weren’t part of the conversation, but how did this situation end up being resolved for this 16 year old young man?
AAJ:   Well, the paediatric ward said they couldn’t do the suctioning.  As I said, that wasn’t my conversation, but they felt they couldn’t manage him.  The respiratory ward felt that that was more an ethical thing.  They didn’t feel that it was necessarily appropriate, because these issues, obviously, are very, very delicate, very finely balanced.  And this young man was very unwell with chest infections, but the mother’s specific request was that he not die from a choking episode.  She acknowledged that if his heart and lung gave out and – or he developed overwhelming infection, so he wasn’t actually going to be resuscitated, okay, but she had a specific request about suctioning him and not seeing him choke to death.  
And that needed a ward to agree to that set of care.  He did actually need suctioning quite soon after admission, but continued to improve.  And, I mean, we actually didn’t necessarily expect him to improve, but we did go – we did say we would follow this plan, which was at the request of his mother.  And he got better.  And he went home.  He was home for a year.  And just at the writing of this, he came back into hospital with another chest infection but we haven’t been asked to see him, so he’s not a – he’s not an ongoing palliative care patient in the hospital.
MS EASTMAN:   So these six case studies that we’ve looked at, I think you would say, are just examples of what you’ve seen in practice over the course of your 20 years; is that right?
AAJ:   And also I would like to say, I haven’t seen as many people as I should do.  I worked out last night on the – with the instance of intellectual disability being, say, one per cent or just less than one per cent in the population, times the number of people I see a year, times the number of years I’ve worked in practice, I should have seen at least 200, and I’ve not seen that many.  
MS EASTMAN:   You’ve not seen – all right.
AAJ:   I’ve seen quite a few, but also that is because people send people my way.  I’ve become a little bit of a – if there’s somebody in palliative care with a disability, I see them.
MS EASTMAN:   Now, autism was a particular topic that you wanted to address, and you’ve addressed this in some detail in your statement.  You say at paragraph 50:
Autism needs special mention, and most clinicians do not appreciate the underlying cause of deterioration in behaviour of a patient who has autism,  
    presents with autism.  And not appreciating, perhaps, different responses to pain and a combination of problems raise some significantly – significant difficulties on occasions for patients with autism receiving the right care.
So partly, that could be diagnostic overshadowing.
AAJ:   Mmm.
MS EASTMAN:   Partly, that could be having an understanding about the way in which behaviour might be indicative of pain or present other symptoms.
AAJ:   Yes.
MS EASTMAN:   Is that right?
AAJ:   Yes.
MS EASTMAN:   And you say in paragraph 52 that your personal and professional experience has led you to conclude that in terms of hospitalisation, there are virtually no services to support acutely unwell children, adolescents and adults with severe autism.  So that’s a pretty significant conclusion to reach.  Can you assist the Royal Commission as to why and how you’ve reached that conclusion?
AAJ:   Well, I do have a child with severe autism and intellectual disability and epilepsy.  So on a personal level, I’ve had several presentations with my son to Accident and Emergency.  He also goes to a school for people with severe autism, and I’ve seen all the parents in a similar predicament – predicament to me.  And I know there is nowhere to go if my son is agitated and I might not know the cause for that.  At the weekend it was a rolled ankle, but I didn’t hear about that till Monday.  So he was in severe pain and, hence, he was very distressed.  And the times I have taken him to be – the times he has been admitted has been a very traumatic experience, because there is no – there’s no specific place so there’s a higher incidence of psychiatric problems.
But my experience – and this was being told face-to-face to me – is that my son couldn’t be admitted to the child psychiatric ward because his autism was too severe.  And that – I will never forget that.  And I was told if his autism was not coupled with an intellectual disability, he could be admitted, so he couldn’t be admitted.  And that was on New Year’s Eve 2017.
MS EASTMAN:   You are a medical practitioner.
AAJ:   Yes.
MS EASTMAN:   And you’ve had to take an advocate with you to secure his admission in emergency; is that right?
 
AAJ:   Yes, because he       
MS EASTMAN:   Why do you – so people might be watching this and say, “Well, at least the doctors should be able to navigate the system – a system that they know.”
AAJ:   Because they say       
MS EASTMAN:   Why did you need to take an advocate?
AAJ:   They say it’s a behavioural problem without – obviously, it is a behavioural problem, but why is it a behavioural problem?  And then I’m not – then there is nowhere for them to go.  In the end, the advocate came in and made it quite clear that he couldn’t go home with me because he was going to be a danger to me in that heightened state.  So I was told he couldn’t be admitted to the child psychiatric ward.  And so they did put him into a medical ward with a security guard.  And, you know, obviously, that’s not the right thing to do, but they were trying to make sure everybody was safe.
But the reason I’m saying we need proper beds that would – would actually accommodate a child with autism.  So at his school if he gets agitated, there’s a – there is a room which they call a sensory room so he can lie down, he can just relax, and – and, generally speaking, you don’t need any drugs.  But the presence of a security guard for three weeks didn’t – didn’t help him.
MS EASTMAN:   Was he in hospital for three weeks?
AAJ:   Yes.  And the – the trouble is that there was a different – this is quite often the way specialists work – I don’t work like this, and my department doesn’t, but it’s quite common for a specialist to be on for a week, and then it’s the next one.  So we had a rotating specialist.  And the last one said, you know, “Well, he’s got to go.”  And he had no idea that a respite home had to – didn’t have any medical personnel.  So when – when he – so when he was more agitated, they – they – they pushed discharge more because they didn’t know what to do.
MS EASTMAN:   So where did he end up?  Did he come back home or in respite?
AAJ:   Well, he ended up in – in a respite home for a couple of weeks – well, no, maybe just – maybe just a week before he came home.  But even then, I was told there was one point, the day – two days before he left, I said, “He can’t go to the respite home tomorrow because they’re worried about another child there being aggressive towards him.”  And the paediatrician said, “I’ve never heard of a child being aggressive to another child.”  I said, “Well, you’re not – you’re not in the same – you’re not moving in the same circles”, and made a big fuss about that extra day just for my son’s safety.  He went there, and then he came home.
 
MS EASTMAN:   I want to ask you now about some solutions.  And these are informed by your personal experience but also what you’ve observed in the health system over many years.  If you need a moment, let me know.
AAJ:   It’s okay.
MS EASTMAN:  The solutions you start to discuss at paragraph 64 of the statement.  And I think you pose a very important question, and that is what can general – what can the general health system in Australia do to treat children and adults with intellectual disability humanely and equitably?  And so that simple question then informs the solutions that you think would make a difference; is that right?
AAJ:   Yes.
MS EASTMAN:   So, first of all, there’s education.  And you say:
Go back to the beginning.  The education of doctors and nurses needs to be overhauled in relation to training in intellectual disability.
So part of the training, you say, is to develop the tools to look past the disability and not become trapped in the diagnostic overshadowing.  Is that the first one?  And the second is that doctors and nurses, you say, really need to understand the quality of life is subjective, and that patients with disabilities can lead active and contented lives.  They need to reflect their attitudes – and that’s the medical practitioners and nursing staff and others, I assume – may be biased due to their own expectations as to what a full life looks like.  And you say:
If we do not instil these values and reiterate ethical principles to young students, they will rarely develop these values and principles later in their professional life.
Now, one might say reading that evidence and listening to you, that’s a very sad state of affairs.
AAJ:   It is.  I worry for the future of my son and for other people with disabilities.  I feel that I – I don’t feel hospitals are safe for people with intellectual disabilities, especially when they’re non-verbal.  I’ve seen – if I might just digress, I once went into a local hospital and there was a man screaming loudly so that everyone in that ward could hear him, and there must have been at least a hundred people around, and no one questioned it.  And I said, “What’s wrong with him?”  And they just said, “Oh, that’s the man with a disability.”  And I said, “But there’s got to be something wrong.  That’s a – that’s a cry for help.”  And so no one did anything about it.  So I rang the consultant up and I said, “This isn’t my patient.  One of your patients is screaming at the top of his voice, and everyone has just learnt to ignore it.”
Anyway, I called the – I called a support worker in.  They calmed him down.  I don’t know what it was.  My point is that everyone was happy – or everybody could just  
listen to that without acting on it, other than just saying “he has a disability”.  So I do think we have to start very, very early on.  We do work in a very fast-paced system, and I think that we don’t stop and reflect enough, and that’s maybe not just for – it’s not always for people with disabilities.  It may – it may be other things as well, but doctors really know nothing.
And I don’t know what the – I don’t know what the undergraduate course is like.  I didn’t get any training whatsoever.  There might be an occasional lecture, but there’s certainly not enough.  So you’re trying to teach people when the sort of – the horse has bolted and people are practising.  It needs to be instilled when they’re more malleable.
MS EASTMAN:   So you have noted that there are some excellent resources available, you say, and that includes the Intellectual Disability Mental Health Core Competency Framework:  A Manual for Health Care Professionals.  And that’s been produced by the University of New South Wales, together with New South Wales Health.
AAJ:   Mmm.
MS EASTMAN:   So you would like to see – and I think that’s partly some of the work done by Professor Trollor       
AAJ:   Yes, but I don’t       
MS EASTMAN:         who gave evidence last week.
AAJ:   I wouldn’t – I – I wouldn’t like to guess how many people are aware of that training module.  I think – I think there needs to be mandatory training, like there is for Respecting the Difference, how to treat Aboriginal people when they come in the health service.  We are given so many modules to do that unless it’s mandatory, it won’t be done.  We’re overloaded with – with things.  So I – I think – I think it’s – I think it’s important enough to make it mandatory.
MS EASTMAN:   Other things that you’ve mentioned as solutions are legislative change, and that it might be helpful for Australia to look at a model used in the UK with the UK Autism Act; is that right?
AAJ:   Yes.
MS EASTMAN:   And that sets out some legislative standards in relation to, in effect, doing an audit of whether or not a particular health system or other system addresses the rights and the needs of people with autism.
AAJ:   Mmm.
MS EASTMAN:   So that’s a suggestion you would like       
 
AAJ:   Yes, I’m a bit       
MS EASTMAN:         someone to look at.  Is that right?
AAJ:   I’m a bit out of my league, but there’s lots of lawyers in the room so they can have a look at that.
MS EASTMAN:   Then you would like to see some services that specialise in looking after patients with intellectual       
AAJ:   Definitely.
MS EASTMAN:         disability, and so addressing the need for specific clinics not only in the cities but also in regional areas.
AAJ:   Mmm.
MS EASTMAN:   One of the other issues that you raise – and I think you’ve talked about having to attend a hospital with an advocate.
AAJ:   Mmm.
MS EASTMAN:   And that was a lawyer, wasn’t it?
AAJ:   Yes.
MS EASTMAN:   So you had to take a lawyer to a hospital.
AAJ:   Yes.
MS EASTMAN:   Right.  Okay.  Well, that might not necessarily be ideal, but you have talked about       
AAJ:   She – she was an advocate.  She’s also a lawyer, but she went in as an advocate.
MS EASTMAN:   Okay.  But you talk about the role of advocates, and you say the development of a disability liaison role within hospitals to assess people with intellectual disability needs urgent consideration.
AAJ:   Mmm.
MS EASTMAN:   So this is this way of being a bridge for people coming into an acute setting, that there’s somebody       
AAJ:   Well       
 
MS EASTMAN:         who can assist, navigate through some of the systems.  Is that right?
AAJ:   Well, I learnt a couple of days ago that New South Wales is putting some money into intellectual disability health teams, but I think someone needs to be in the hospital, especially in a large hospital, or somebody to cover a few hospitals, but it’s almost like to help that patient through, because everything’s more difficult.  Everything’s more prone to error.  You’re always having to deal with the NDIS because there’s the argy-bargy about who should look after them, should it be, you know – so someone who’s just there as, really, an advocate.
MS EASTMAN:   To have that.  You also address specifically palliative care.  This is paragraph 74 to 76 of your statement.  And so you would like, I think, to see the health care system better address when and how a person with intellectual disability might find their way into palliative care.
AAJ:   Mmm.
MS EASTMAN:   And is it fair to say that your view is they can slip between the cracks without an advocate, and that they may come to your attention in circumstances that you’ve illustrated in some of the case studies where they don’t really need to be managed at an end-of-life phase in palliative care if appropriate steps were taken earlier on?  Is that right?
AAJ:   I just think there’s a whole hidden of community of people who are never seen by specialists, and those people come to me by specialty referral, not general practice referral.  So it would be largely trying to find out where those people are in the community, and Julian Trollor, myself and some very clever people that deal with big data are going to track what services people are getting because I just think they’re not known about.  They’re – they’re just never getting in – far enough into the system to get the right referrals.
MS EASTMAN:   And particularly patients with intellectual disability in group homes is an area that you think requires some specific attention.
AAJ:   Well, something like 85 per cent of people in group homes have an intellectual disability.  So that’s largely – group homes are mainly four children with intellectual disabilities, and getting them to interface well with primary health care is a challenge.
MS EASTMAN:   All right.  Now, you say in your statement this hasn’t been an easy statement to make, and – but you felt it’s very important for you to give evidence from the perspective of somebody who works within the health system.  I wonder if you want to read paragraph 78 and 79, to the final two paragraphs of your statement.  I think you reading them will be a little more powerful than me trying to summarise what you say there.
 
AAJ:   I was worried about coming.  You know, I’m the breadwinner for my three children.  And I didn’t do this easily and not without fact-checking my statement several hundred times.  But the last – the last statement:
My statement may shock those who read it, as they may not expect the incidents I have described to occur in a developed country such as Australia.  Sadly, it is because people with an intellectual disability may not understand they are receiving inadequate care, nor have the ability to report it.  Even if they are able to report instances of poor care, they will not have the higher cognitive function to advocate for themselves.  Patients with an intellectual disability face a profound struggle within the health care system from the moment they are born to the moment they die.
As the former Chief of Army David Morrison famously said, “The standard you walk past is the standard you accept.”  We desperately need health care professionals to stop walking past patients with an intellectual disability.  They and their families deserve so much more.
MS EASTMAN:   Dr J, thank you very much for your evidence.  The Royal Commissioners may have questions.
COMMISSIONER SACKVILLE:   Thank you very much.
AAJ:   Thank you.
COMMISSIONER SACKVILLE:   I would much prefer to thank you by your proper name, but I understand why you prefer not to use that.  Thank you so much       
AAJ:   Thank you.
COMMISSIONER SACKVILLE:         for your statement and the care you took in preparing it and coming and giving your evidence today.
AAJ:   It’s a pleasure.
COMMISSIONER SACKVILLE:   Thank you very much.
AAJ:   Thank you.
MS EASTMAN:   Commissioners, AAJ’s statement is found in part A of the tender bundle behind tab 39.  If I could formally tender that and be marked as exhibit 4.24.

EXHIBIT #4-24 STATEMENT OF AAJ DATED 8/02/2020 (STAT.0051.0001.0001)
 
MS EASTMAN:   So, Commissioners, I know we’ve not really stuck to time, and my apologies.  I thought it was important that you heard all of AAJ’s evidence.  But if that’s a convenient time to adjourn.  I will check with those who deal with the arrangements for the Royal Commission, but maybe if we’re able to have a slightly shorter lunch adjournment and then resume in 45 minutes.
COMMISSIONER SACKVILLE:   So we will resume at 1.30.
MS EASTMAN:   Thank you.
COMMISSIONER SACKVILLE:   Yes, thank you very much.  We will adjourn till 1.30.

<THE WITNESS WITHDREW    [12.43 pm]

ADJOURNED    [12.43 pm]

RESUMED    [1.33 pm]

COMMISSIONER SACKVILLE:   Yes, Ms Eastman.
MS EASTMAN:   Commissioners, the next witness is Jayne Lehmann, who you will see is sitting and ready to take the oath or affirmation.
COMMISSIONER SACKVILLE:   Ms Lehmann, if you would be good enough to take the oath.  Thank you very much.

<JAYNE ANN LEHMANN, AFFIRMED    [1.33 pm]

<EXAMINATION BY MS EASTMAN

COMMISSIONER SACKVILLE:   Thank you.  And thank you for coming today to give evidence.  Ms Eastman will ask you some questions.
MS EASTMAN:   So Commissioners, a copy of Ms Lehmann’s statement can be found in part A of the tender bundle, behind tab 40.  And there are some accompanying documents that are reproduced at tabs 41 through to 43.  And the evidence will become exhibit 4.25 in due course.
 
COMMISSIONER SACKVILLE:   Thank you.
MS EASTMAN:   So you are Jayne Ann Lehmann?
MS LEHMANN:   I am.
MS EASTMAN:   And you are a diabetes nurse specialist, but also a director of a business in relation to diabetes education; is that right?
MS LEHMANN:   Yes.
MS EASTMAN:   And you’ve made a statement for the Royal Commission on 13 February this year?
MS LEHMANN:   Yes.
MS EASTMAN:   And there are two corrections that you want to make to the statement.  They’re not so much corrections but just clarifications and additions; is that right?
MS LEHMANN:   Yes.
MS EASTMAN:   So the first is to paragraph 6.
MS LEHMANN:   Yes.
MS EASTMAN:   And you would like that paragraph to read as follows:
In 1988 I graduated with a Bachelor of Nursing, majoring in education, at Flinders University of South Australia, and published the first of many peer review articles in 1992.
And then the rest of the sentence is right.
MS LEHMANN:   Yes, thank you.
MS EASTMAN:   So that’s the additional words after the word “published”.
MS LEHMANN:   Yes.
MS EASTMAN:   To add, “the first of many”; is that right?
MS LEHMANN:   Mmm.
MS EASTMAN:   And the next amendment is to paragraph 19 on page 4.  And that first sentence should read as follows:
We realised, when Sarah was 11 months old she had a 65 minute seizure at Victor Harbour during holidays, that we were in uncharted waters with her health.
So that’s the addition of the words after “Sarah”, the words “was 11 months old”.
MS LEHMANN:   And if you can add “and”       
MS EASTMAN:   “And”.
MS LEHMANN:         had a 65 minute seizure.
MS EASTMAN:   All right.  We will add that in.  With those just clarifications, the contents of the statement are true and correct       
MS LEHMANN:   Yes.
MS EASTMAN:         to the best of your knowledge and belief.  All right.  Now, Ms Lehmann, I think we might start in this way:  when you came to give your evidence and prepare a statement for the Royal Commission, you wanted to talk about your daughter Sarah’s life and her experience with the health system and your experience with the health system.  And Sarah passed away between Christmas and new year, just before – a couple of days before her 26th birthday; is that right?
MS LEHMANN:   Yes.
MS EASTMAN:   And notwithstanding that very significant loss to you and your family, for which on behalf of the Royal Commission I express our deepest sympathy and condolence       
MS LEHMANN:   Thanks.
MS EASTMAN:         you wanted to give your statement.  
MS LEHMANN:   Yes.
MS EASTMAN:   And I think many people have said to you are you sure you want to make a statement to the Royal Commission and give evidence; is that right?
MS LEHMANN:   I think more people have asked me that than, “Are you providing evidence?”
MS EASTMAN:   But you have decided that this is particularly important for you at this time, for this hearing.
MS LEHMANN:   Yes, and I’ve been Sarah’s voice and will continue to be. 
MS EASTMAN:   And so even after Sarah’s passing, you want to make sure that her voice is heard.  And also your own experience, as both her carer and advocate       
MS LEHMANN:   And of her family.
MS EASTMAN:         over the course of her life.  All right.  So can I start a little bit with you, because you come to look at these issues from a perspective of experience in the health sector yourself.  So in 1984 you graduated from Flinders University with a Diploma of Applied Science in Nursing, and that in your early stages of your career you worked as a registered nurse at the Flinders Medical Centre; is that right?
MS LEHMANN:   Mmm.
MS EASTMAN:   And over time you’ve developed a particular expertise and specialty in the area of diabetes?  And you no longer are practicing as a clinical registered nurse; is that right?
MS LEHMANN:   No, I am.
MS EASTMAN:   You still have that – you are still practicing?
MS LEHMANN:  Yes.
MS EASTMAN:   Okay.
MS LEHMANN:   So I have my own clinics as well.
MS EASTMAN:   All right.  But you have become one of the leading credentialed diabetes educators in the country in your capacity as a nurse; is that right?
MS LEHMANN:   Yes.
MS EASTMAN:   So you’ve set out in the statement some detail about your history and also the nature of the work that you’re doing.  And your husband is also a general practitioner; is that right?
MS LEHMANN:   Yes, he is.
MS EASTMAN:   And so from time to time he has had to step in and manage the care of your daughter Sarah; is that right?
MS LEHMANN:   Mmm.
MS EASTMAN:   So you have three children, three girls.  Your eldest daughter, Rebecca, was born in November 1991, and she lives in Sydney.  And she’s a scientist, is she?
MS LEHMANN:   She’s doing her postdoctoral work at the moment.
MS EASTMAN:   Okay.  Your second daughter is Sarah, and she was born in January 1994.  And your youngest daughter Charlotte was born in 1999.  And she still lives with you; is that right?
MS LEHMANN:   Yes, and she starts nursing on Monday.
MS EASTMAN:   Okay.  Starts nursing.  Okay.  
MS LEHMANN:   As student nurse.  Yay.
MS EASTMAN:   So the statement that you want to give to the Royal Commission and your evidence this afternoon is to talk about the experience you have accessing health care and services for Sarah during her life.  And we wanted to start by perhaps getting a little sense about Sarah and who she was.  And if at any time you want me to jump in and read any part of the statement let me know, but I know you can speak about Sarah very powerfully, and we also have some photographs – and at an appropriate time, and if or not let me know       
MS LEHMANN:   Yes.
MS EASTMAN:         if you would like me to put up some of the photos of Sarah.
MS LEHMANN:   Yes.
MS EASTMAN:   So tell us about Sarah.
MS LEHMANN:   So Sarah was my middle daughter.  And I do remember, when she was about four months old, sitting outside on a rug, and my two little girls were there and thinking I was the luckiest woman in the world.  And that changed a little bit later because the trouble with Dravet’s is that these children start on medications for their seizures so early, and so my initial response when I was asked this, when we were doing this, was I’m not sure what Sarah was like because her behaviour and herself was always influenced by her medications.But I did read something that was lovely that someone had sent and it was about the fact that Sarah was beautiful.  She was beautiful looking.  And she was – she came to the world with a lot of challenges for which she relied on everybody around her to help her engage, like her sisters could without that help.  And Sarah could oscillate between being grumpy and head down, to then laughing her head off and everybody would laugh with her.  And she had – her toys were her friends.  Because she was developmentally younger, she trusted them.  They couldn’t hurt her.  They were unconditional in their love.  And same with her books and videos.  So Sarah loved The Wiggles.  I was a bit worried for the Wiggle when he had his health issues.  It was a few days after Sarah as death.
MS EASTMAN:   She’s the old Wiggles, isn’t she?  Not the new Wiggles.
MS LEHMANN:   Yes, I thought she may have wanted him to come with her, but fortunately he’s still on this earth.  
MS EASTMAN:   Right.
MS LEHMANN:   So she loved the original Wiggles.  She would talk to them.  Same with all the ABC characters and things.  And so she was very much – my husband coined the phrase she had an enchanted life.  And she loved Snow White and the Seven Dwarfs and lived her life, really, around those characters in many ways, which is what we got to enjoy with her as well.  So she was complicated person because of her communication issues.  She could only communicate via her behaviour, and Dravet’s has a long with it a lot of oppositional behaviour, because of the communication issues.  She had to use other ways to communicate.
MS EASTMAN:   All right.  So just to help the Royal Commission understand about Dravet and that diagnosis.  As you say, when she was about four months old – this was a time where you said, “I’ve got these beautiful girls”.  But this was the first time, when she was about four months old, that you noticed that she’d had a seizure;  is that right?
MS LEHMANN:   Yes.  So she was in her bassinet – bouncinette and had a seizure.
MS EASTMAN:   And then there was a very significant seizure when she was 11 months old.  So this is a little matter that we just added in to paragraph 19.
MS LEHMANN:   Yes.
MS EASTMAN:   And you were on holidays at the time and you remember that you had to drive her to the emergency.  And then from the emergency, I think, what, in the Victor Harbour area       
MS LEHMANN:   Yes.
MS EASTMAN:         she then had to be retrieved by helicopter and taken to the Flinders Medical Centre, and that’s where you worked at the time.
MS LEHMANN:   So I was actually having a holiday before going back after my maternity leave, and the 65 minute seizure landed us in ICU, yes, in that hospital.  But we were very lucky that someone saw us coming in, the doctor was just leaving and being a country hospital, we were very fortunate to have that doctor realise there was something wrong, turned around and came back.  And it’s often the case for those of us who are health professionals, we knew him as well, and so, yes, that was life-changing.
MS EASTMAN:   But she didn’t receive a clear diagnosis until she was 11 years old.
MS LEHMANN:   No.
MS EASTMAN:   And why was that the case?
MS LEHMANN:   So Dravet’s syndrome was only identified really later in the 80s, 90s, and so there has not been widespread testing.  A lot of it initially was research – under research arm.  And so the first lot of – when they first suggest it – we actually think our health professionals were a bit in denial around her condition.
MS EASTMAN:   Was there a thought maybe she had a form of epilepsy?
MS LEHMANN:   They actually were saying – the neurologists were saying she had febrile convulsions.  
MS EASTMAN:   Right.
MS LEHMANN:   And we knew that it was more than that, just from what we were seeing.  And we were describing it – one day she had a seizure in the neurologist’s rooms.  What’s interesting about neurologists they haven’t always seen a lot of seizures because they see people after.  And so this is the first one he had had in his rooms.  And he had just finished saying, yes, it’s febrile convulsions.  She starts fitting, we hold off the Valium and he says, “I think we might revise that diagnosis”.
MS EASTMAN:   Okay.  Do you want me to put the photos of Sarah up?
MS LEHMANN:   Yes, please.
MS EASTMAN:   Okay.  We might do that now.  All right.  So you might sort of see just on the screen       
MS LEHMANN:   No, I can’t look.
MS EASTMAN:   Okay.  All right.  So we’ve put them up.  Can I describe them then?  
MS LEHMANN:   Mmm.
MS EASTMAN:   So the photos that you’ve provided to the Royal Commission include a photo of Sarah when she was just a little toddler; is that right?
MS LEHMANN:   Yes.
MS EASTMAN:   And then you’ve got a photo of her in her favourite yellow wheelchair.  And so we can see that she has received a visit from Snow White.
MS LEHMANN:   That was when her wish was granted with Make-A-Wish.
MS EASTMAN:   Okay.  And there’s a photo in the middle of the page where she’s in a hospital bed.  And this was – this is going to be something we will talk about in a moment in terms of that occasion.  And she has got a really big beaming smile.  And this was because this was an example where you had to intervene and find out what was wrong.  And we will come to this later.
MS LEHMANN:   Yes.
MS EASTMAN:   But she had bitten her tongue.  And then finally, you had worked out what the problem was and you were able to calm her down. 
MS LEHMANN:   Yes, she had had 12 seizures and no one had checked in her mouth.  God bless them.
MS EASTMAN:   And did you say you put a bit of a filter on this one?
MS LEHMANN:   That one.  Yes, I was playing around with filters to make her laugh.  And just by chance it ended up being a beautiful photo.  There were others with bunny ears.
MS EASTMAN:   Okay.
MS LEHMANN:   But I thought they weren’t appropriate for the Commission.  Or maybe so.
MS EASTMAN:   And then you’ve got some photos of yourself and your husband       
MS LEHMANN:   Yes.
MS EASTMAN:         with Sarah, and also some photos with her sisters.
MS LEHMANN:   Yes.
MS EASTMAN:   And the photos – she’s holding some of her precious toys; is that right?
MS LEHMANN:   Yes.
MS EASTMAN:   And these are relatively recent photos.
MS LEHMANN:   Yes, they were.  I think those ones were about a year ago because they were a wedding of our God family.
MS EASTMAN:   Okay.  Thank you for sharing the photos with us.
MS LEHMANN:   Yes.  That’s all right.
MS EASTMAN:   So I want to ask you a little bit about Sarah’s communication because one of the features of your evidence is that it’s Sarah’s ability to communicate and the way in which you had to learn and those around her had to learn what her communications needs is a very important thing that you think the Royal Commission should be aware of.
MS LEHMANN:   Yes.
MS EASTMAN:   All right.  So paragraph 27.  Can you explain to us what was Sarah’s communication challenges, and what was her mode of communication, particularly around her health issues or if she was feeling unwell?
MS LEHMANN:   Sarah didn’t have the capacity to have a conversation like other people.  She had to use practiced sentences that she had picked up when she was younger that she would then place a meaning on.  So it’s called echolalia.  And so as a historian, if you like, telling someone about her health, she could not do any of that.  She also couldn’t really provide any input around her pain.  I don’t – I only remember her having a headache once in her life, and that’s because I think the seizure medications impact on pain perception, and Sarah’s pain relief – pain threshold was very high.  So much so that she could walk from one end of Adelaide Women’s and Children’s Hospital day 6 after a spinal fusion to the other, and that’s unheard of.  Usually you can only hobble around a bed.  
So you couldn’t trust, in some ways, what she was saying, but she was communicating.  And so things like she would say “not a doctor” or “eat doctor”, meaning – it wasn’t necessarily about a doctor, it meant that she was really uncomfortable.  So one of the positives of the NDIS for us – and I had, I guess, what I would call an NDIS smile moment, and I think we need to be celebrating those smile moments because lots of people are getting them when they see the impact of those services doing something positive for your person, and it was when I started understanding Sarah’s communication.  
And so last year we had spent a lot of time working on that.  Her face wouldn’t have the same expression as what my other children, for example, or myself would have.  And so you really had to focus on the context of where she was, how she was reacting.  So within a health context, that makes it challenging, especially around, you know, picking up symptoms, because it could be that her behaviour changed rather than talking about a sore tummy.  And you had to be very vigilant with someone with a high pain threshold, pain is there to alert you to an issue, but if you lose that, then your first line of defence – so she could have easily had a burst appendix, for example, prior – before it would have been operated on.
MS EASTMAN:   Okay.  So you deal with Sarah’s living arrangements, and she lived with you and your husband until she was about 19.  And in 2013 she was placed in emergency respite care; is that right?  
MS LEHMANN:   Mmm.
MS EASTMAN:   By this stage she had completed school?
MS LEHMANN:   Yes.  And I think that was part of the problem, is that when children who are, I guess, lower functioning, leave school, quite often the final years of school have been problematic in that they’ve just been babysat.  And then they leave school, and guess who they come back to?  Mum.
MS EASTMAN:   Okay.
MS LEHMANN:   And so equally, with her behavioural stuff and being scared of moving from one thing to another – she had also been physically abused at her school, been pulled from one classroom to another, by her hands and legs.  And so there was a fear for Sarah that people will hurt her.
MS EASTMAN:   So it meant a very difficult decision, didn’t it, to – for Sarah to leave home.  And she went to live in a group home; is that right?
MS LEHMANN:   So I have a problem with the word “group home”.  I think if we’re going to talk about accessibility and – sorry to do this.
MS EASTMAN:   No, please.
MS LEHMANN:   But it was her home for that amount of time.  And if people are living in a group set-up like uni students, we don’t call it a group home.
MS EASTMAN:   That’s very true.
MS LEHMANN:   So we need to be careful how we use that term because it immediately disables it.  So I think she moved out because this was the only place she could go to.  We had to essentially make her homeless in order for her to leave home, when I had hit the wall, from having had lots of input from the special behaviour unit.  I had nothing else.  I just couldn’t do another second.  And so she went to live in a place which was actually a respite house.
MS EASTMAN:   Right.
MS LEHMANN:   So not appropriate at all.  And it was an hour away.  And what’s meant to be an emergency housing option, she was there for two years.
MS EASTMAN:   Right.  You say in the statement, though, that she developed good relationships with a core group of her support workers, and she had a roommate who did things with Sarah such as colouring in, painting nails, hairstyles.  So is that later on?
MS LEHMANN:   So that’s when she moved to her house.  So after the two years in emergency housing – there were people coming and going within that service because they were there for a respite service.  And then she eventually got a house,  
which she shared with another girl until she died, who had also an intellectual disability, in a small group of little homes.
MS EASTMAN:   All right.  Can I turn now to what quality health care looked like for Sarah, and you say in paragraph 38 that quality health care for Sarah was one that was delivered with respect, an open mind and where Sarah was the centre of everything.  And it was enhanced by health professionals who were able to use their knowledge and skills around the causes of intellectual disability and the conditions associated with it.  So critically, it was very adaptive and non-judgmental;  is that right?
MS LEHMANN:   Mmm.
MS EASTMAN:   And I think you say in your statement that there are some examples that you would like to talk about, about good quality health care for Sarah and one was the relationship with her GP when she lived in the supported accommodation.  So you found a GP who understood Sarah and her needs.  And what was it about the way in which the GP engaged with Sarah that you say has the qualities of good health care?
MS LEHMANN:   It was around the fact that she respected the role that we had.  Now, remembering my husband’s a GP and I’m a nurse.  And so we had to have a much higher involvement in her health care because at times it would take two hours for Sarah to decide to move from the floor into the car.  So I couldn’t get her to appointments or anything.  The GP I found was working in a clinic where I was providing a diabetes service for people with intellectual disability as well.  And so she involved us, she was thorough.  So she had a lot of experience with looking for the cause of issues.  She did the annual screening using – I think she was using the CHAP tool.
MS EASTMAN:   The CHAP tool.  So just pausing there.  The Royal Commission heard some evidence yesterday from Professor Lennox       
MS LEHMANN:   Yes.
MS EASTMAN:         who developed the CHAP tool.  And you’ve referred to the CHAP tool in paragraph 125 of your statement as well as a helpful model that general practitioners can use.  So this is the annual health assessment.
MS LEHMANN:   Yes.
MS EASTMAN:   So Sarah’s GP used that tool.
MS LEHMANN:   Which is more detailed than the one that’s available with Medicare with the intellectual disability annual review things.  And it meant that the support workers and ourselves could have input into that before she went to the doctor.  So it consolidates that group approach of information gathering and provides  
much richer information.  The other thing is that she would organise bloods and referrals and things that were appropriate.
MS EASTMAN: …the other thing you identify as part of good quality health care is tools that can assist, and you have identified in your statement that you have developed some tools for people with low literacy, so picture-based resources.  And this comes to the incident that’s the subject matter of the photo.  So you say in paragraph 54 that during a hospital admission last year, Sarah bit her tongue, which caused considerable pain and damage to her tongue.  And her behaviour and the seizures were very problematic.  But you created a low literacy resource to communicate with Sarah for the source of her pain.  And you included that in the material.  I don’t think we need that to come up on the screen but Commissioners will see that behind tab 42, in part A of the tender bundle.  And so it was using a series of photos and pictures to help you identify what might be the source of the problem.  And that meant being slow, patient       
MS LEHMANN:   Yes.
MS EASTMAN:         and giving Sarah the time to be able to tell you what was wrong.
MS LEHMANN:   And it also meant being a clinician to pick up the problem.  So the difficulty is that it was clear that the doctors were out of their capacity to be able to care for her, because no one – even though she came in after 12 – she had 12 seizures at least.  And no one looked in her mouth.  And – so there’s a lack of assessment other than what’s right in front of people.  So if you don’t pick up these other issues that are not going to get identified maybe till later, firstly, you can’t get pain relief in place.  And equally, Sarah was not happy.  She was clearly in some pain.  She had stopped eating and drinking.  No one had started a drip yet.  
And when I said, I think, “Did they use a tube in her mouth or something?”  Like I thought they might have damaged her throat with a tube when she was having a seizure or something.  So it was the bitten mouth.  So because no one had looked – and then she wouldn’t let them – and I don’t think they would have looked in her mouth anyway.  And so the – I got a – I said, “Okay, give me a torch.  I’m going to have a look and see what it is”.  So I had a look and it was very obvious, both sides of her tongue were mangled, and we all know what a small ulcer on a tongue feels like, but if you’ve got it both sides, that’s very, very painful.  
And so I said, “Okay, we need to get fluids in and we need to get pain relief on board.  And I’m going to have to explain this to Sarah”.  So that picture was inadvertently after I had explained it to her, but I then also went home and developed, just with board maker symbols, a thing saying, you know, “Sarah had bitten her tongue, Mummy knows it’s sore.  We can do something now to help, we can stop the pain.  And we know now.  It’s okay”.  And so that smiling face was because she understood that I knew, or at least someone knew, and we could now do something about it.  And it was very obvious it was linked to that communication.
MS EASTMAN:   The other tool that you have found to be very helpful for Sarah is a set of documents that you call the hospital passport.  And, Commissioners, again, I don’t need this to come up but a copy of the hospital passport is behind tab 43, in part A of the tender bundle.  And the passport is a document that sets out all of Sarah’s health information, but also a guide to communication, her likes, her dislikes, it gives you a sense of who are the family members.  And so it gives you a pretty good overview about Sarah.  So she used this passport in working with her GP;  is that right?
MS LEHMANN:   And also the dentist.  The thing with people who can’t communicate is no one gets to hear their voice in the first person.  And so for years, I had been developing different things that were written in the first person.  And it’s very interesting when you do that, the different reaction the health professionals have when they come in.  And this version was one I found via the disability organisation, and it’s from the UK, which I’ve put the reference in       
MS EASTMAN:   The Life Raft.
MS LEHMANN:   Yes.
MS EASTMAN:   I think in your statement you’ve got a reference to the website for The Life Raft.
MS LEHMANN:   And it’s also the way it’s written.  You have to write it in the first person in simple language because people are reading things quickly, as health professionals.  And so to make it easier for them to understand – it also means that you can read it to the person.  So you might think it’s weird that I say things like, “Mummy knows”, and – but with Sarah, with echolalia, we had to talk like that for her to understand and didn’t misinterpret words.  It was just the way that worked the best.  So that document changed things.  And we got told in that last hospitalisation, both in resus, the acute medical unit, and also the ward, they wished everybody with intellectual disability came in with that information.
MS EASTMAN:   And that’s something you prepared yourself over a period of time;  is that right?
MS LEHMANN:   Yes.  So I would write a lot of the information, and then the organisation would take some of that.  I mean, one good thing about Sarah going into care was that I had a chance to write all of her – what I knew about Sarah, I got to write that down.  And so if I died, it was all there.  I actually felt I wouldn’t be leaving her without her having and her sisters having the benefit of that knowledge.
MS EASTMAN:   Okay.
COMMISSIONER SACKVILLE:   Do you know of any similar document that is available in Australia or in use in Australia?
MS LEHMANN:   I’m not sure what happens here in New South Wales.  They’ve done some work in this area.  The reason the UK has progressed so much is because of their Equality Act that was put into play in 2010.  And that has meant that all health services, and there’s eight other groups of services, they have to be accessible to people with intellectual disability, physical disability, around age, gender.  So what that did was change things overnight because there was a responsibility for every service to be accessible in its communication to people with intellectual disability.  And that’s what has fuelled the UK’s positive movement in the development of these sorts of resources, I believe.  And one of the recommendations I am making to the Commission in this hearing is that that’s what we need in Australia.  We’ve got Discrimination Acts.  We’ve all signed the UN       
COMMISSIONER SACKVILLE:   Convention.
MS LEHMANN:         convention.  You’ve heard – I heard some of the stories before.  You’ve heard how hard it is for health professionals to get people with intellectual disability.  Even the NDIS Quality and Safety Framework, they don’t get people with intellectual disability either.  So if we have a law that puts the onus on all public and private services – I just talk about health services in this moment – (1) we start to open up access to private health insurance for people with intellectual disability.  There was no point in having private health insurance for Sarah because we would have been told, “No, we won’t admit her.  She needs too much care”.  So we’re going to need an overarching legal framework that brings the voice of people to a point where it’s just taken as being appropriate business to have accessibility for people with intellectual disability.  
So you will see a plethora of things being produced.  In South Australia we have just been remodelling our health service for people with intellectual disability, and I’ve been involved with that quite actively.  I think it will come out in the recommendations that we will be introducing a health passport in South Australia for people.  And, you know, there’s – we now have ways of doing these things in a coordinated manner.  So I will talk about that more maybe when we talk about the solutions.  So there may well be more out there but it’s never – we don’t know everyone or everything.  This is part of the problem.  There’s pockets of things happening.  We have to look over the world at what’s happening, not just in our backyard, for the positive things we can then adopt, I think.
MS EASTMAN:   All right.  So the next part of your statement deals with some of the barriers in terms of communication and listening to parents.  And some of this comes back to the incident about you identifying the injury to Sarah’s tongue.  But if we take that incident, in terms of what you had to do to address the fact that she was becoming dehydrated and she wasn’t swallowing, can I ask you to jump to paragraph 86 of the statement.  And on this occasion you were saying to the Royal Commission that during this incident of hospitalisation the support workers were also essential for Sarah.  And you say in paragraph 86: On day 6 of the hospitalisation Sarah’s support workers were told by their disability support organisation that they could no longer provide support in the hospital.  And this was due to the NDIA staff telling them that Sarah’s NDIS supported independent living funding couldn’t be used to pay the staff while she was in hospital.
So this is a big issue for you, isn’t it?
MS LEHMANN:   Huge.
MS EASTMAN:   So you contacted the NDIA and you were told that Sarah’s funding could be used to pay for support staff in hospital.  And so you wanted to have some clarification around this issue and you say in paragraph 89:
There is a desperate need for clarification on who pays for the support workers to provide support while a person is in hospital.  
So on this, could you help the Royal Commission have an understanding about the importance of the support workers whilst someone’s in hospital.  Because the assumption might be, “It’s not necessary.  You’ve got all of the doctors, nurses, and all of the supports that come with being in hospital during a hospital stay.  Why would you need to also have your support workers?”  So can you help us understand how this is critical, in your view, to the delivery of good health care outcomes.
MS LEHMANN:   Yes.  So Sarah would not let the nurses or the doctors touch her.  And so even though the hospital passport is a great tool, it’s not the answer.  So hence why it was me who did the assessment and things like that.  This was the first admission where we had been able to use our support workers.  And because we had to have an urgent review in order to get more funding through NDIS for the ongoing budget to pay for the extra care, I had, without realising that the organisation was getting involved – asking for clarification about the funding in hospital, I had done that separately.  And so I was quite shocked when they told me that they were being pulled out.  
And I guess – we had previous hospitalisations where, as usual, it was always me doing all of the support.  This time having the support workers meant that Sarah was showered.  Now, she probably wouldn’t have been showered.  They were able to make her feel more at ease.  They were able to assess and give more information around the fact she wasn’t eating or drinking.  And in fact, that hospitalisation, she lost a lot of weight that no one even realised – you know, they just weren’t even listening to.  They were also able to make me feel more reassured that she would be safe.  So when she moved from the acute medical to the ward, she was in a ward with people who had all had strokes.  
So there was no one in that room who could speak.  And then they were moving to removing the one-on- one nursing care as well.  So the support workers or I were there all the time.  Once they were talking about that, I said, “No, you can’t.  She’s  
too vulnerable.  She could try and get out of bed and fall out.  She doesn’t know how to push a button.  If someone approached her, she wouldn’t know how to stop them from harming her.  You have a duty of care to provide her with ongoing supervision, medically at the moment.  She has just had 12 seizures.  And that would not be safe”.  And so they got the nursing – head of nursing at that time up.  And so what we did was had her in a room with three other high – highly dependent people and they had one nurse in the room.  
So we were able to negotiate the health side of it, which is different to the disability.  So even with that extra support, she needed her people there who knew her.  She can’t communicate.  And so that was all fine.  When I had rung to get the emergency review of her plan, no one told me that it would actually take a number of weeks or even a month, firstly.  So there’s a huge deficit in being able to get an emergency review in hospital.  I happened to call our health and wellness Minister’s adviser and said, “This is what’s happening.  Can you tell me what the funding situation is?”  And they said, “No, it’s been a problem ongoing.  We don’t know”. 
And I said, “How can you not know?  Like, it must be someone’s responsibility”.  So there hasn’t been, it seems to me, a decision made on one level, maybe a holdup in the COAG load of things, as to who pays for support workers.  Now, my thinking is that she had NDIS moneys for disability support that would have been provided if she was not in hospital.  Why can’t they just give that in hospital, when it’s not health support, it’s disability support.  Why was I getting different information to what the provider was getting and why was my voice not listened to in another call being made to question that?
MS EASTMAN:   So this issue about – which the Royal Commission has heard, about the integration of health and disability services, is that it – the disability services shouldn’t stop at the door of a hospital;  is that right?
MS LEHMANN:   Well, the person doesn’t.  
MS EASTMAN:   Even when       
MS LEHMANN:   The person walks into the hospital.  They still can’t talk.  Unless something magic happens through A and E, they still can’t talk, they still can’t tell someone if they’re in pain, they still can’t, you know, eat their dinner on their own.
MS EASTMAN:   All right.  Even when Sarah died, this issue for you about communication remains an important issue;  is that right?  So because Sarah died in the care of a disability support organisation, there was an obligation to report her death to the NDIS Quality and Safeguards Commission, and that had to be done within 24 hours.  And a further update provided in five days.  And we’re now towards getting close towards the end of February and you haven’t had any contact from the Quality and Safeguards Commission, and no       
MS LEHMANN:   Nothing. 
MS EASTMAN:         request from the Commission for any information related to her death, and what you should do in following her death in terms of the arrangements that should be made.  Is that right?  And so I think when you get to your recommendations, you talk about       
MS LEHMANN:   Yes.
MS EASTMAN:         bereavement and grief counselling and a bereavement package from the NDIS as well.  But just touching on this, and then we will turn to the impacts and, more importantly, all of the recommendations that you want to make – I don’t want to overlook that at all – but what did you want to say about your experience of a family member who has had a very recent death and still trying to sort out collecting the right information?
MS LEHMANN:   It dawned on me when I had heard a number of times that the – the service had to provide notification within 24 hours, and then five hours.  Now, remembering I’m an NDIS provider so I’m aware of the quality and safety framework.  And I thought, “Okay.  Well, why haven’t they asked me?  Why hasn’t anyone asked me about her death?”  Because if a disability organisation is providing the notification of what’s happened, how does anyone know that it’s accurate?  We’re not safeguarding them at all.  And death is actually one of the biggest triggers for looking into what’s happening around that person.
Now, I also happen to be on the advisory board of the Community Visitors Scheme in South Australia.  And we’ve had – as soon as the Quality and Safety Commission’s legislation came in, immediately plans were put in place for the rolling back of the role of CVS in the review of what’s happening with people with intellectual disability.  So I’ve seen a rollback of that.  And I felt safe when the CVS were visiting.  The other thing is that if we’re still getting conflicting information and we don’t have a safety and quality framework that’s sophisticated enough yet to capture the experiences of people with intellectual disability – for example, how do you make a report?  An email, phone call.  Well, Sarah couldn’t do either of those things.  And I asked someone from the NDIS Commission the other day, “So what are your plans around making it accessible for people with an intellectual disability to be able to give feedback on their concerns?”  I think they just looked at me a bit stunned.
Well, the Community Visitors Scheme is doing that.  But we – we’ve had it rolled back.  So why would you go and reinvent something new, which isn’t even on the radar, I might add, of the NDIS Commission, and use what’s already working and accepted and successfully picking up.  Those people are the eyes of quality standards.  At the moment, there’s not even a forum being held for people with intellectual disability to come and talk about what’s going on with their quality and safety of their services.  So it’s inaccessible.  Even the service that is designed specifically for the needs of people with intellectual disability, the largest group within that service, they are not providing an accessible way for them to complain.
MS EASTMAN:   So this is one of the areas that you want to say needs some change or some careful attention;  is that right?
MS LEHMANN:   Yes.
MS EASTMAN:   Right.
MS LEHMANN:   And it also links with the stuff around death.  You know, you – you can’t have only the organisation being asked.  I’ve provided and saved the country thousands and thousands of dollars in care, and I’ve been there – I had to become, basically, an advocate in order to be able to talk to CEOs and Ministers and influence their thinking, and have them around my kitchen table for what we called kitchen cabinets in order to discuss and explore issues with the impact of change.  I’ve done that all willingly.
MS EASTMAN:   But then do you       
MS LEHMANN:   But if they don’t get it right, I’m going to also be the one pricking their side.
MS EASTMAN:   All right.  In your statement you deal in some detail of the impact of Sarah’s disability but also her recent passing on you, your husband and Rebecca and Charlotte;  is that right?  The impact has been profound.  It has affected your health, it has affected your decisions about your own employment and the work that you do.
MS LEHMANN:   Mmm.
MS EASTMAN:   It has affected decisions about such small things as to whether you and your husband can take holidays.
MS LEHMANN:   Mmm.
MS EASTMAN:   But you’re not grizzling about that.  You’re just saying that to understand the impact of Sarah and how complex her needs have been, that it has a ripple effect, and a fairly significant one, on the whole of the family;  is that right?
MS LEHMANN:   Even as a family when we would go out, the staring that you get when your child is in a wheelchair, and – and she looks like Sarah carrying Big Bird and Wiggles and – you know, the scrutiny you get as a family is immense.  And people would actually stand in front – you would probably have this experience if you use a wheelchair – mouth open.  And I’m not talking just children, I’m talking grandmas.  And it’s like – and you think, “Okay.  Well, I know you’re processing this, but could you close your mouth at least because it’s actually very rude.”  So my daughters would come up with lots of ways to manage those situations to get the power back a little bit.
MS EASTMAN:   When Sarah died, you said to your daughters:
We are strong women.  Sarah has made us strong.  And I hope that part of the legacy that she has left us is this.  I help those –
You said:
I hope those words pop into their heads when they face difficult situations in the future, and you know it will for you.
You say Sarah taught you and your family how to be patient, how to listen, how to watch for clues during conversations.  And so this is a skill that you’ve found when you’ve been her - I think - nurse, physician, advocate, ministerial adviser, as you describe in the statement, that you’ve learnt a lot from Sarah.
MS LEHMANN:   Mmm.
MS EASTMAN:   So it’s not – the impact is not entirely negative, is it?  It’s a very       
MS LEHMANN:   I’m a better clinician.  I’m a much better health professional for having had Sarah teach me, and that’s why I developed the services for diabetes around people with intellectual disability.  We have to stop discriminating against these people, and we don’t even know when we’re doing it.
MS EASTMAN:   All right.  So can I turn to the suggestions for change.  So training and education is something that you identify.  Commissioners, this starts at paragraph 110.  And do you think that if there is greater training, greater knowledge and greater skills, then you create the potential for people to become a disability champion?  And having champions can be very important in terms of changing attitudes and sharing their knowledge in workplaces.  So am I right in understanding that when you’re talking about a disability champion, you’re not just confining it to the health environment but across the board in all areas of life?  Is that right?
MS LEHMANN:   We have people with lived experience of intellectual disability all through our services.  What often happens is that that expertise is not celebrated or utilised or shared.  If we had a way to include their learnings into committees and ideas around how to address issues for people with disability, you would get, for example, I think, more low-literacy resources being developed.  You would get people who could actually review things, as well as those with lived experience of actual intellectual disability.  But there are some people whose experiences won’t be represented by people with intellectual disability who can speak up for themselves.  And so you still need this dual representation.
So, you know, instead of them feeling like they need to hide their experience, we should be utilising it in a way that it’s celebrated, and opening up accessibility within services.  And I think it could be a very powerful change agent.  And instead of being  
seen as someone who has to maybe have a day off here and there because of the needs of their person, it actually becomes a value that they’re bringing back.
MS EASTMAN:   One of the other changes that you suggest is the use of equipment and technology.  And we’ve touched on this.  This is the Hospital Passport and using pictures and developing appropriate resources for low literacy.  So we’ve touched on those things, and also using the CHAP assessment tool or something akin to that which ensures that you’ve got reliable health information and also appropriate annual checking;  is that right?
MS LEHMANN:   The other thing we need is a USB with a video of what the person looks like as their normal baseline.  What clinicians don’t have is a sense of what that person looks like, for example, before they have their seizure or before they have a critical incident.  So their assessment is challenging because they don’t know what they’re meant to get back to.  And with all of our technology, we have cameras on all of our phones that can videotape.  And if that information is then popped on a USB, together with other pertinent information, that would set – I have this mantra.  You set people up for success.  If we have a system that lets us set people up for success, we will stop discriminating because we will be looking after the needs of the clinician who needs to know what someone looks like before they had the seizure.  We will have people wanting to develop resources, because they want to communicate with them.
And during Sarah’s hospitalisation, I asked the doctors if that would be useful, and I said “could you play it?”, because I wanted to know if their computer systems would enable them to play it, and it would.  And it’s something so simple.  And it would, you know, be very easy to do, but it would actually assist a lot of people in doing that.
MS EASTMAN:   So the next area is legislative reform.  And you’ve touched on this already with the Royal Commissioners, talking about the Equality Act in the UK.  But what you would like to see is stronger laws so if there was to be an implementation, for example, of a Disability Action Plan or Inclusion Plan, that there would be legal targets that would have to be met by health providers;  is that right?
MS LEHMANN:   I – I – I think that the end game is to have something that speeds up the necessity of organisations and businesses to need to provide accessible services.  Funnily enough, when you address the needs of people with intellectual disability with their communication, you’re also addressing the needs of people with English as a second language, people who have been through trauma, people who have Alzheimer’s, who have got memory issues, people who are stressed.  We also have a support worker population who often come from outside of Australia, or many will have learning disabilities not picked up.  And so it’s easier for them to read information like that as well.  And I’m not saying that they’re stupid or not able to.  In fact, it’s easier for health professionals as well to read easy language so you don’t have to decode so quickly.
MS EASTMAN:   Right.  Data collection is something you mention in your statement, about the importance of accurate data collection and data collection that allows people to undertake research but also to ensure that you’ve got some accurate material for the development of policy.  So you’ve talked about that.  You’ve also talked about some of the issues which we’ve touched on with the NDIS and your very strong views about community visitors.  But I’m interested just in terms of your very recent experience – and this is towards the end of your statement at paragraph 149 and 150 – is that even at the end of somebody’s life, if they’ve been an NDIS participant, is what is available for families in terms of bereavement and grief counselling.  And do you want to say something about that?  And then I’m going to ask you just to read the final three paragraphs of your statement.
MS LEHMANN:   I think the NDIS is still young, and it hasn’t got a mature approach yet to quality and safety for people with intellectual disability.  And that’s obvious when you look at this gap around when someone dies.  I – I don’t see how you can set a process up where you have one bit of information that isn’t corroborated in a system like that and also take the CVS out at the same time.  That, and also the inconsistent information, that sort of thing.  And what doesn’t surprise me, sadly, is that the needs of the people who have been that person’s main provider and carer is forgotten yet again.  And it’s like they get a message saying, “Number X394 has died.”  And that’s it.  They cease to exist as far as the NDIS is concerned.  And we’ve put in a lot.  We – we have suffered enormously.  And we also have then just left our previous tribe.  We’re no longer the parents of a disabled child.
MS EASTMAN:   But you are, aren’t you?
MS LEHMANN:   But we’re not – we’re not the other either.  And so there’s no thought about how you transition back to not having that child, and it just – you’ve got all this equipment that we had just bought – I think it was an $8000 bed through NDIS.  It’s a month old.  Why are they not asking me about what’s going to happen to that?  I don’t know, maybe it will help pay for her funeral, I’m not sure, but they have not asked about any of it.  They haven’t sent us a condolence letter.  They haven’t said, “Thank you for what you’ve done in being her nominee.”
Frankly, it’s bad manners, I think.  But as far as a quality and safety system, you’ve got to be joking.  There’s no accountability around the equipment, there’s – there’s no accountability around the fact that Sarah had a valued life, and maybe I could have then told them about the number of NDIS smiles I had last year because they might have actually heard some really good stuff that they could start to promote as well in doing that.  But they don’t – they don’t get the good bits.  They don’t care.  No, it’s not even that they don’t care – they haven’t even thought of it.  That’s the thing that boggles my mind, is that these people have paid a lot of money, and I wish I could just get in there – I tried as a diabetes nurse specialist to get to someone in the Commission and the framework to talk to.
I have never seen an organisation hidden behind so much secrecy.  It is a planned approach that there is nobody’s name.  You never get a person to call back.  You  
don’t have a phone number.  There is no email to respond to somebody, even when I was asking about the emergency review.  It is a strategy in order to hide behind a wall of secrecy.  How did we let that happen in a place like Australia where we’ve spent government money putting all this money in place and we don’t have a person to call?  We don’t have a person with accountability.  It lacks accountability at every step.  Every step.  And that’s how it’s been set up.
And I have to say, it must have been set up like that on purpose.  That is criminal.  That is, I think, discriminatory because it’s people with an intellectual disability, the very people who cannot communicate their message, they’ve made it even harder for them to tell their story.  Sure, on the little pamphlets that come out it’s all about their story, but only if the Commission wants to tell you.  So how can we have a government instrumentality that is providing a service with taxpayer money with no accountability?  I don’t know.  And it – I’m relieved on one level not to have to deal with that any more.
MS EASTMAN:   That’s what I wanted to – you say that in your statement, and I wondered if you wanted to read just those final three paragraphs, or even just that final paragraph.
MS LEHMANN:   From the 49 – 149?
MS EASTMAN:   From 152, just under the heading Conclusion.
MS LEHMANN:   I don’t even know if I’ve got that page.
MS EASTMAN:   All right.  Would you like me to read it?  You say this:
In conclusion, it has not been easy preparing this witness statement in the wake of Sarah’s recent death.  We loved our Sarah Kate dearly, and we tried to give her a life that had the same opportunities as our other two daughters have as Australian citizens.  However, I am relieved as well that I no longer need to worry about what happens to Sarah if I die.  Her sisters are no longer left with the onerous responsibility of stepping in as her protector if my husband and I died.  We live with these fears because of the number of times the systems, like health care systems, have failed our intellectually disabled family members.  It is time to relieve us of that fear by delivering recommendations that ensure equality of access to health for all, and in so doing, sharing Sarah’s health experiences will not have been in vain.
Ms Lehmann, thank you for coming to give your evidence.
MS LEHMANN:   Thank you.
MS EASTMAN:   Again, I express on behalf of the Royal Commission our deep condolences for your very recent loss, and I thank you for the courage to come and speak to us at the Royal Commission at what is a very difficult time.
MS LEHMANN:   Thank you for the opportunity.
MS EASTMAN:   Thank you.
COMMISSIONER SACKVILLE:   I thank you too on behalf of my colleagues and express our profound sympathy       
MS LEHMANN:   Yes, thank you.
COMMISSIONER SACKVILLE:         for your loss.  I know it’s only two months since your daughter passed away, and I know how difficult it must have been for you to prepare this statement.  And we thank you for doing that and for sharing your experiences.  It’s a wonderful way to honour Sarah’s memory that you’re       
MS LEHMANN:   Yes.
COMMISSIONER SACKVILLE:         prepared to do this and to keep fighting.
MS LEHMANN:   She and others deserve it.
COMMISSIONER SACKVILLE:   They do.  And thank you so much for doing that.
MS LEHMANN:   Thank you.
<THE WITNESS WITHDREW    [2.37 pm]

MS EASTMAN:   Commissioners, we might take a short adjournment.
COMMISSIONER SACKVILLE:   Yes.

ADJOURNED    [2.37 pm]

RESUMED    [2.53 pm]

COMMISSIONER SACKVILLE:   Yes, Ms Eastman.
MS EASTMAN:   Commissioners, we have two witnesses who will give evidence together.  So Karen Barnett and Tracey Nash.  And I will just ask them to come up.
COMMISSIONER SACKVILLE:   Please do sit down and if you wouldn’t mind taking either the oath or affirmation as the case may be.  Thank you.
 
<KAREN LORRAINE BARNETT, AFFIRMED    [2.54 pm]

<TRACEY NASH, SWORN    [2.54 pm]

<EXAMINATION BY MS EASTMAN

COMMISSIONER SACKVILLE:   Thank you very much.  Yes, Ms Eastman.
MS EASTMAN:   All right.  Can I call you Karen and Tracey or would you like me to be a little bit formal, Ms Nash and Ms Barnett?  What’s your preference?
MS NASH:   Tracey is fine.
MS EASTMAN:   All right.
MS BARNETT:   And Karen is fine.
MS EASTMAN:   All right.  Thank you.  So let me start with each of you in turn, but we’re going to be dealing with the evidence together.  So Karen, you are Karen Barnett.
MS BARNETT:   Yes.
MS EASTMAN:   And you are a teacher.
MS BARNETT:   Yes.
MS EASTMAN:   And you’ve prepared a statement for the Royal Commission.
MS BARNETT:   Yes.
MS EASTMAN:   And that’s dated 12 February this year.
MS BARNETT:   Yes.
MS EASTMAN:   Commissioners, a copy of the statement can be found in part A, behind tab 37.  And I’m going to deal with issues of exhibits and the tendering, perhaps, at the end of the evidence, if that’s convenient.
COMMISSIONER SACKVILLE:   Yes.  Thank you.  We have those statements.
MS EASTMAN:   Then now, you are Tracey Nash.
MS NASH:   Yes.
 
MS EASTMAN:   And you are a carer.
MS NASH:   Yes.
MS EASTMAN:   And you’ve provided a statement to the Royal Commission dated 10 February 2020.
MS NASH:   I have.
MS EASTMAN:   And Commissioners, you will find a copy of that statement behind tab 38.  So can I just acknowledge to you both, I’m sorry about the delay in giving your evidence today.  I think you were ready to go first up, and we’re very pleased that we’re able to take your evidence this afternoon.  So Commissioners, during the course of the morning there’s some additional documents which are relevant to this part of the evidence that have been very recently included in the tender bundle, and they are marked 38A through to 38H.  And if I need to come to some of those documents and identify them in the course of the evidence, I will do so.  So for both of you, I think it’s fair to say that when you prepared these statements for the Royal Commission, you did it based on your memory.  And at the time, you didn’t have copies of clinical records or copies of letters and copies of documents;  is that right?
MS NASH:   Yes.
MS BARNETT:   Yes, very minimal.  Part of the grieving process, because it is nearly five years since Grant died – since Butch died.  I call him Butch.  Childhood nickname.  I’d sort of decided that it was time to let some stuff go, and so I unfortunately had deleted emails and other correspondence that I had received from people.
MS EASTMAN:   And so I think you acknowledge, don’t you, both, in your respective statements that you’ve done your very best to remember particular dates but if you’ve missed out a date or a date range, that that wasn’t intended.
MS NASH:   That’s correct.
MS EASTMAN:   But you’ve done your best to remember dates and times.
MS NASH:   Yes.
MS EASTMAN:   And I think you’ve been shown some documents during the course of the morning.
MS BARNETT:   Yes.
MS EASTMAN:   And those include some of the hospital records;  is that right?
MS NASH:   That’s correct, yes.
 
MS EASTMAN:   And that might have identified some dates which might be a little bit different to your statement.
MS NASH:   Yes.
MS BARNETT:   Yes.
MS EASTMAN:   And you’ve also been shown some documents, haven’t you, that might give a slightly different perspective on some of the issues you want to raise in your statement.
MS NASH:   Yes.
MS EASTMAN:   Because you’ve seen what the hospital has to say about those things.
MS BARNETT:   Yes.
MS NASH:   Yes.
MS EASTMAN:   So you’re both nodding.  But the evidence that you’ve set out in your statements, when you both made your statements, was really that you sat back and, I think, Karen, you say you learnt that the Royal Commission was starting and you thought, “Even though I tried to put behind me the death of my brother”, that just hearing about the Royal Commission made you think, “I think I need to come to the Royal Commission and tell the Royal Commission what happened to my brother”, and that was part of the motivation in preparing the statement that you have.
MS BARNETT:   Yes, that’s right.
MS EASTMAN:   And Tracey, as a carer and a supporter of the family, that you also wanted to bring your perspective to the events a number of years ago as a carer;  is that right?
MS NASH:   That’s correct, yes.
MS EASTMAN:   So Commissioners, I think it’s important to understand the context of the evidence, and as we have said on a number of occasions during the course of this hearing, this is not a hearing where the Royal Commission is stepping into the shoes of the Queensland Coroner.  It is not a hearing where the Royal Commission is stepping into the shoes of the Queensland Health Department to undertake clinical reviews.  It is not the role of this Royal Commission to make any particular findings as to whether anybody was negligent or that anybody did any wrongdoing in relation to relevant Queensland policies and the like.  The purpose of your evidence is that you want to share your brother’s story.  And you want to share the perspective that you have of his experience towards the latter part of his life;  is that right?
 
MS BARNETT:   That’s right.
MS EASTMAN:   Okay.  So now I’ve done all of that introductory work, let’s get into hearing about your brother.  So, Karen, you had a brother.  His name was Grant.
MS BARNETT:   Yes, yes.  You want to know about him?
MS EASTMAN:   I want to know about him.
MS BARNETT:   You want to know about him?  He was a smartarse bastard.  He was a loveable rogue, with quick intelligence that could take you down – like people often stared at him and thought he did – he lacked intelligence but he was very quick-witted.  I will give you an example after Mum died.
MS EASTMAN:   Hey.
MS BARNETT:   Sorry.
MS EASTMAN:   I am going to slow you down.
MS BARNETT:   All right.  Okay.  So I will give you an example.
MS EASTMAN:   So just the interpreters have got to follow.
MS BARNETT:   He is supposed to be intellectually disabled but he had a quick wit.  And after Mum passed away, my sister moved into the house to help Dad out, because Dad was grieving quite severely for the loss of his partner, and he was also trying to lose a bit of weight, very big family, and stuff like that, and he – Dad said to my sister at dinner time, “I’ve lost five kilos”, and Butch whispered under his breath, “Still a way off”.  But Dad didn’t hear it because he didn’t have his hearing aids in.  So you know, he wasn’t stupid.  He loved travelling.  Lo and behold, if you didn’t have coffee, tobacco and scratchies in the morning, Commissioner, you would hear about it.  He loved machinery.  He collected cans and would crush them to make money.  He was – travelled extensively with my parents.  
And he also – just a couple of weeks before he had the accident that ended up breaking his leg and then setting on the process of his death, he actually had just been to my place in – just out of Newcastle.  He had flown – like, he used to fly from Longreach by himself.  And that’s no – you know, he needed assistance to seat shift, to get transferred from one seat to another.  I would meet him in Brisbane and then he would come out to Alice Springs for a month with me and stuff like that, you know, like – so this was a man who was very active, very clever, very out and about.  
He had lots of friends that were – he made friends himself.  When my parents moved to an outback town in Queensland, in Barcaldine, he somehow struck up friendship with the people who owned the smash repairs there and they loved him coming and visiting.  He made friends with lots of truckies driving through the town.  He was just  
– he was just interested.  He asked questions all the time.  I remember driving past the catchment up near Newcastle, and there’s a big lake there.  And he said, “Where’s the boats?  There’s not a boat on there and not a bird on there”.  And he had noticed that.  Now, that’s – you know, that’s not intellectual disability to me.  That’s how I grew up with him and – yes.
MS EASTMAN:   But he did have an intellectual disability.
MS BARNETT:   Yes.
MS EASTMAN:   And he had a genetic condition, which you’ve described in the statement as XXXY syndrome but sometimes that       
MS BARNETT:   No, XXXXY syndrome.
MS EASTMAN:   XXXXY syndrome.  Okay.  All right.  Need to change       
MS BARNETT:   Sorry, that’s a typo.  That should be XXXXY.
MS EASTMAN:   All right.  So four X’s and a Y.
MS BARNETT:   Yes.
MS EASTMAN:   But sometimes that’s called a form of Klinefelter syndrome;  is that right?
MS BARNETT:   Yes.
MS EASTMAN:   And the nature of this condition meant that it can affect cognitive development.
MS BARNETT:   Yes.
MS EASTMAN:   And it can cause some physical abnormalities.
MS BARNETT:   Yes.  He went to a special school and he had to be – in Tasmania – we grew up in Tassie.  He had to be assessed as educatable.  And so he did, he was, apparently, and he spent a lot of time – we lived on a farm so he spent his weeks just in Launceston. 
MS EASTMAN:   Slowing down a little bit.
MS BARNETT:   He spent his weeks in Launceston at school and then came back at weekends.  He always was home at weekends, Mum and Dad made sure of that.  Other children from the farming areas didn’t come home on weekends very often.  So, yes, we – he grew up as part of the normal family.  He was disciplined just like us.  If we were playing up in the car and we were driving home from the township  
and mucking around and stuff, we were kicked out and made to walk home and he would be too.  And he did used to walk.  It took him two and a-half years to learn but he was a very determined person as well, and he walked, he rode a bike, he did a whole heap of things doctors weren’t expecting him to do, and the doctors said that.  You know, when he was a child and he walked into the office, they didn’t expect that to happen.  I don’t think they expected him to live past Christmas, actually.
MS EASTMAN:   And your parents, Frances and Norm, took responsibility for Grant’s care for more than 40 years.
MS BARNETT:   Yes.  And us – Naomi, my sister, and I.
MS EASTMAN:   You and your elder sister       
MS BARNETT:   Yes.
MS EASTMAN:         were also involved in his care.  And Tracey, you’ve observed that the Barnetts are a very tight family, aren’t they?
MS NASH:   That’s correct, they are.
MS EASTMAN:   And can I ask you, Tracey, you’ve come into Grant’s life in about June 2014.
MS NASH:   That’s correct.
MS EASTMAN:   And you came in to work as his carer.
MS NASH:   Live-in carer, that’s right.
MS EASTMAN:   And so Norm interviewed you, didn’t he?
MS NASH:   Yes.
MS EASTMAN:   He wanted to check how you’d be as a carer for Grant.
MS NASH:   Yes.
MS EASTMAN:   Because there had been a few ups and downs with other carers.
MS NASH:   There had been, yes.
MS EASTMAN:   Including one who stayed for a day;  is that right?
MS NASH:   That’s correct, yes.
MS EASTMAN:   But you managed to get through the first day.
 
MS NASH:   Yes.
MS EASTMAN:   And you eventually ended up being a live-in carer with Grant and Norm;  is that right?
MS NASH:   That’s right.
MS EASTMAN:   And so once – and we’re going to get to the particular issues in relation to Grant’s health but, Tracey, can you just tell the Royal Commission what were your responsibilities as a carer, and we will preface it just this way:  that you started in June 2014, but a few days after you started, Grant had a fall which resulted in a hospital admission.  So perhaps when you started the job you had an expectation of your responsibilities, but they changed pretty quickly in the first week.
MS NASH:   They did.
MS EASTMAN:   Can you tell the Royal Commission what were your responsibilities and what did you do as a carer?
MS NASH:   I was responsible for Grant’s health and wellbeing, his personal care, some cooking and cleaning and make – cleaning his room and making his bed, and taking him out on social outings, and also to doctors’ appointments, and anything else that he really wanted to do.  
MS EASTMAN:   Okay.
MS NASH:   Basically that was my role.
MS EASTMAN:   And you developed a fairly close relationship with Grant as his carer.
MS NASH:   The whole family.
MS EASTMAN:   And the whole family.
MS BARNETT:   Yes.
MS NASH:   Yes.
MS EASTMAN:   And so you’ve heard his sister talk about Grant.
MS NASH:   Yes.
MS EASTMAN:   But what’s your recollections of Grant and the person that he was?
MS NASH:   Well, my – as you said, my first day on the Monday, I showered him.  And that was fine.  By the third day, I showered him and he was due to go out to the  
service provider, and I went off on my merry way, thinking I’ve got a bit of respite.  And I was given a phone call that Grant had fallen out of his chair while he was out, and had broken his leg.  And what else did – I can’t remember.  And, yes, I thought my job was over when Norm rang me and said that, “I’ve got some bad news for you”.  And I’m thinking, “Uh-oh, they don’t want me, Grant doesn’t like me, I’m probably sacked”.  But it wasn’t that.  I went straight up to the hospital to be with Grant, to make sure that he was okay, and Norm said, “Yes, come up, see what happens, yes”.
MS EASTMAN:   And it took you a while to learn the best way of communicating with Grant       
MS NASH:   Yes.
MS EASTMAN:         is that right?
MS NASH:   I remember       
MS EASTMAN:   Sorry, just pausing there, I think obviously, as a sister, you had worked out your forms of communication.  And this was       
MS BARNETT:   We grew up like twins.  I was younger than him, so – we often didn’t communicate at all.  I was actually his translator at the dinner table for the whole family for a long time so – and I did his personal care from a very young age because my parents were busy on the farm and my sister had no patience, much.  She was good but, you know – like, she was better doing the games and stuff, I was better with the personal care and stuff.
MS EASTMAN:   Okay.  So in terms of communication, when you came to work with Grant in June 2014, it took you a while to learn the right communication;  is that right, Tracey?
MS NASH:   He was very hard to understand at times.  When you first met Grant, you didn’t understand the words straight away, and he wasn’t born with a gift of the gab like this one – sorry.  He talked in short sentences but he got his message across.  Like if he didn’t like something, “Don’t like”, you know, or if it was just a yes or no answer, “Yes, Tracey.  Yes, Norm”,  you know, whatever.  Or “no”, depending on what the answer was.  He knew how to get across so you could understand him.  He would never do, like, sentences, long sentences.  And a little bit garbled sometimes like when he was saying his name.  He never said when you asked him his name it wasn’t Grant Barnett, it was Ant Barnett.  
MS EASTMAN:   Okay.
MS NASH:   When his birthday, it was 4 July, he would say 4 of Uly, but he never, ever said the year, you know, that sort of thing.  So you had to get to know 4 Uly is 4 July.
 
MS EASTMAN:   And once you did get to know him and you developed a good communication with him.  How did you, Tracey, get to understand whether he experienced pain or he had particular health needs?
MS NASH:   Well, most of the time I could see it on his face, and I would say, “Do you hurt, Grant?  Have you got a pain?”  He would say, “Yes”.  And I would say, “Where?”  And he would either say, “tummy” or “head” or something like that.  You know, “Do you want something for it?”  “Yes”.  Then I would talk to Norm about it and we would discuss what the treatment was, yes.
MS EASTMAN:   Okay.  So I want to now turn to the occasions where Grant had to have an admission to a hospital.  And just your recollections about what happened during those various admissions.  So the first that you were involved with, Tracey, occurred in June 2014, or thereabouts.  And Grant had suffered a fall while out with a day program service provider.  And the diagnosis was a broken femur;  is that right?
MS NASH:   That’s correct.
MS EASTMAN:   And this is Norm telling you the bad news.  But you went up to the hospital.  And Grant was in the hospital for a number of weeks;  is that right?
MS NASH:   I think so, yes.
MS BARNETT:   Yes.
MS NASH:   I remember, yes.
MS EASTMAN:   And to the best of your memory, you spent most days at the hospital with him?
MS NASH:   Every time he was in hospital I was there every day, all day.
MS EASTMAN:   And you – your recollection of that time in hospital was that the doctors and nurses would never speak to you directly, they mostly spoke to Norm, Grant’s dad.
MS NASH:   If I was the only one there, then it would be me, but if Norm was there, being that he was the guardian, he was the – he was the one they spoke to, but I was there.
MS EASTMAN:   And you recall that there were some times where the hospital staff wouldn’t even talk to Grant if he needed an injection in his stomach.
MS NASH:   That’s correct, yes.
 
MS EASTMAN:   And when the hospital staff did speak to Grant, do you recall how they engaged with him?
MS NASH:   When they did?  It depended if they knew him or not and if they got to know Grant.  Example is, if it was a wardie and they got to know Grant from previous interactions with him, they had learnt that he liked aeroplanes, and he would say, “Virgin Blue”, or, “Virgin coming”, and that meant a Virgin Blue plane was coming in.  And they got to know him by that and they’d go, “I know you, you’re the aeroplane man”.  Grant always know when one of the planes was coming in and what plane it was.
MS EASTMAN:   So there was different experiences in the hospital.
MS NASH:   Depending on whether they       
MS EASTMAN:   It wasn’t everyone didn’t speak to him.
MS NASH:   No.
MS EASTMAN:   But some did, some didn’t.
MS NASH:   Yes, it depended if they knew him or not.  And if they – I remember of a morning, when they come in first shift, I was always there before breakfast and the nurses that come in when they did the shift change it was never, “Hello I’m the nurse for the day, my name is and I will be looking after you”.  It was nothing like that.
MS EASTMAN:   Just coming in and out.
MS NASH:   Just coming in and you would see them giving a handover, standing at the end of the bed, not even acknowledging Grant saying, “Good morning”, or anything like that.  They would just give their handover, which is fine, but after they did that, they didn’t come and introduce themselves, like you do when you see them – you’re sitting there in the ward, somebody else across the way, “Good morning, Mrs or Mr So and So.  I’m Nurse, I will be looking after you today.”  They didn’t do that with Grant and I was noticing the difference there.
MS EASTMAN:   All right.  And prior to Grant’s discharge, you noticed that he started to develop a cough.  And Norm knew from his years of experience looking after Grant that there was a risk that if Grant’s cough was left untreated that he might develop pneumonia and the concern was that that could come on quite quickly;  is that right?
MS NASH:   That’s correct.
MS EASTMAN:   So you remember Norm talking to you about that, Tracey.
 
MS NASH:   Yes.  Remembering that I was still getting used to him and getting to know him and I learnt a lot through Norm and what he told me about what would happen.  And he used to say to me, “If ever you see that Tracey, if he starts a cough you must let me know because he’s susceptible to pneumonia and it will go to his chest”.
MS EASTMAN:   Okay.  And do you remember Norm noticed the symptoms and he tried to raise the concerns that he had with the doctor;  is that right?
MS NASH:   That’s correct.
MS EASTMAN:   Before Grant was discharged.
MS NASH:   Yes.
MS EASTMAN:   And you recall a discussion – so this is something you heard with Norm and the doctor – about the doctor giving antibiotics;  is that right?
MS NASH:   This is correct, yes.
MS EASTMAN:   Okay.  And in terms of what you remember about whether he was or wasn’t given antibiotics, have you had a chance to look at some documents to help remember whether he was given the antibiotics?
MS NASH:   I believe he was at some stage but I can’t remember on what occasion Grant was more – that may have been the first time but there were other occasions when Grant – over the time that I was with him that developed, so I can’t remember exactly what time       
MS EASTMAN:   Okay.
MS NASH:         at which occasion he was given antibiotics.
MS EASTMAN:   All right.  So in terms of what occurred after Grant left hospital with having spent time with the broken leg, there was a series of physiotherapy appointments;  is that right?
MS NASH:   That’s correct.
MS EASTMAN:   Did he have to attend a physiotherapist?
MS NASH:   Yes.
MS EASTMAN:   And your recollection is that there was a problem with the physiotherapy;  is that right, Tracey?
 
MS NASH:   Yes, I believe in the way that she spoke to Grant in a very harsh tone – you’ve got to know Grant – that if you speak to him in a rough way that he doesn’t like, he will not be cooperative, he won’t listen, and he won’t do what’s asked of him.
MS EASTMAN:   Right.
MS NASH:   He’s got to like you to do anything.
MS EASTMAN:   And did you have to do anything yourself to assist him in terms of the rehabilitation?
MS NASH:   I had – I was trying to cajole him into doing what the physiotherapist wanted by enticing him and saying, “Look, we will go and get a scratchie when you finish.  Just do what the physio wants you to do.  We’ll go and get a scratchie.  We’ll go down to Bargara, we’ll go and – you know, go and get a Coke”, and whatever that he wanted.  But the way the – that I perceived the way she was acting and talking to him was exasperated, which annoyed Grant, and he was not going to do that.  You know, I tried my best, but if he got it in his head that he – she – he didn’t like them, he wasn’t going to do it.  But there was no other way that she tried to do it, and she didn’t try a different method or, you know, didn’t ask if you are in pain , “is that why you couldn’t do it?”, or anything like that.
MS EASTMAN:   Okay.
MS NASH:   It was just, “You’ve got to do it.”
MS EASTMAN:   And you say you took Grant home after one of the physiotherapy sessions and you said to Norm, “I don’t think we’ll have any more of these physio appointments.  She doesn’t seem to like Grant very much.”
MS NASH:   Yes, before I left that appointment and there was no – like, it was obvious that he wasn’t going to do anything, I asked the physiotherapist, “Do we have to make another appointment for – for any more – appointment, you know, for any more physio?  And she goes, “What’s the use?  He’s not going to do as we ask.  There’s – we can’t work for him if he’s not going to do what we ask.”
MS EASTMAN:   Okay.
MS NASH:   So that’s when I said to Norm, “I don’t think we’re not going to get any more appointments.”
MS EASTMAN:   All right.  And, Karen, you weren’t actively involved in this       
MS BARNETT:   No, but I know from       
MS EASTMAN:         part of care.
 
MS BARNETT:         personal experience that if you made a game out of stuff – like, I have a long history of working with people with disabilities.  I was a residential care worker myself in the ’80s.  I’ve maintained friendships with client – with people that I – 25-year friendships with people I used to look after.  I am now a teacher that works with children with disabilities all the time.  So I sort of get it.  You know, if you make it fun, Butch would do stuff.  Just to get him to have a bath when he was young, and even later, was you had to make it into, like, a song or a game.
And I just couldn’t believe it when Tracey told me about that, and I went, “Hang on a minute.”  You know, like, anyone knows that people with disabilities might need to actually have an alternative way of – they’re not going to do as they’re told, especially with certain conditions and things like that.  So I was a little bit disappointed that something – such a serious break – and, you know, you only have to read the data to know that people who have breaks who are – have breaks like that, that are wheelchair-bound, if they – they’re likely to be dead within 12 months.  He was, you know, if they don’t get the proper care, and that’s – that’s the reality, he was dead within       
MS EASTMAN:   Okay.
MS BARNETT:         less than 12 months of that break.
MS EASTMAN:   Well, before we get to his passing, there were a few other occasions where he had to be admitted to hospital.  So can I come back a little bit.
MS BARNETT:   Yes.
MS EASTMAN:   And so, Tracey, in August 2014, Grant suffered a stroke and he was again admitted to the hospital.
MS NASH:   That’s correct.
MS EASTMAN:   And you recall this occasion, don’t you, because he had been sitting in a chair at home, and you observed that he had something that looked to you like a seizure.
MS NASH:   That’s correct, yes.
MS EASTMAN:   And you were at home at the time.
MS NASH:   Yes.
MS EASTMAN:   You called an ambulance.
MS NASH:   Yes.
 
MS EASTMAN:   And then you travelled with the ambulance and Grant to the hospital.
MS NASH:   That’s right.
MS EASTMAN:   So after you arrived at the hospital, the medical staff conducted some tests.  And you were told that he had had a minor stroke;  is that right?
MS NASH:   Yes.  Yes, a TIA.  Yes.
MS EASTMAN:   Okay.  And, again, he remained in hospital for a period of time;  is that right?
MS NASH:   Yes, that’s correct.
MS EASTMAN:   And, again, you spent every day at the hospital with him?
MS NASH:   That’s right, yes.
MS EASTMAN:   And on this admission, your memory is that there were many instances where the staff didn’t listen to Norm or when Norm wanted to raise issues about Grant’s care or they ignored him;  is that right?
MS NASH:   That’s right, yes.
MS EASTMAN:   And you felt that the hospital staff didn’t attempt to communicate with Grant in a manner that was appropriate for Grant;  is that right?
MS NASH:   That’s correct.  It happened more than once, every day, you know, a nurse who didn’t know him or some medical staff that didn’t know – did not address him at all, not, “Hello, how are you, Grant?”, or anything like that.
MS EASTMAN:   Okay.
MS NASH:   It was – yes.
MS EASTMAN:   Some nurses, you say, were good, and they realised that there was a way to communicate with him, but others you found       
MS NASH:   Once you pointed out that Grant could talk and could answer “yes” and “no” questions, like, “Are you in pain, Grant?”, he could say “yes” or “no”, they realised that.  So the next time they came to visit they would ask him.  But if they didn’t know, I was the one they asked.  You know, “Do you think Grant has got any pain, or –” “Ask him”, you know, that sort of thing.  And that’s how they learnt.
MS EASTMAN:   So you haven’t addressed this in your statement, but the Royal Commission has heard evidence last week about a person with intellectual disability  
having a stroke, and that occurred in a New South Wales hospital.  And there was something called a stroke protocol, so which dealt with rehabilitation following a stroke.  You haven’t made any mention of that.  Do you have any recollection at all of a stroke protocol?
MS NASH:   That’s why I haven’t mentioned it.  I don’t have any recall of any of that.
MS EASTMAN:   All right.  Okay.
MS NASH:   That’s why I haven’t mentioned it.
MS EASTMAN:   Right.  So when Grant came home after suffering the stroke in August 2014, what was the difference for him in terms of his care and his care needs or any changes that you noticed?
MS NASH:   After the first one, the TIA?  What was the difference?  I can’t remember.
MS BARNETT:   Slower.
MS NASH:   Well       
MS BARNETT:   Slower to understand.
MS NASH:   I’m just trying to think what – what my – he – because of the broken leg, he could no longer transfer.
MS BARNETT:   That’s right.
MS NASH:   And we were hoping to get him to transfer from the bed, and we managed that with Norm buying a slide – a bed slide so he could go from the bed to the chair, but he was never – because the bed was a little bit higher than the chair, he could never go the other way.
MS EASTMAN:   Right.
MS NASH:   So he was hoisted.  And, yes, he was a bit slower to respond to things, and – and his speech wasn’t as clear as it was before that, but, you know       
MS EASTMAN:   But you wanted to try to get back to whatever the normal was       
MS NASH:   That’s right, yes.
MS EASTMAN:         before he was in hospital.  Is that right?
MS NASH:   That’s right.
 
MS EASTMAN:   Okay.  And, Karen, did you see or speak to Grant during this period of time?
MS BARNETT:   Yes, we rushed up, 15-hour drive from Maitland to – to be there, and overnight and walked in, “Oh, you’re here.  Oh, you’re here too, beautiful.”  All right.  Okay.  So he responded really well.  We had brought our dogs with us, and I remember being in the – we had taken him out for a walk to get him out, because he was finally out of his bed because he progressed quite well once my sister and I had arrived, he seemed to like – to love us, for some reason, and come back from the dead many times.
So he – we were out with – in the courtyard with the dogs, and stuff, and coming back in, ran into the head doctor, and she looked – she just stopped in her tracks and looked at me and looked at him and went pretty much, “Wow, what a change”, because she hadn’t seen him for a couple of days or something, like, “Wow, what a change”, and that.  And, like, Butch had picked flowers and he was trying to hand them to her and he just – she just completely ignored him and stuff.  And I actually had to say her, “He’s trying to give you flowers and say thank you.  He’s trying to give you flowers.”  And then she sort of looked down and went, “Oh, okay.”  And then she acknowledged that Grant was there, like, Butch was there. 
And I just found just that really disappointing.  I – I really did.  I thought, “Okay.  He’s your patient, he’s trying to talk to you.  How about listening?”  You know, like, yes, he might not be able to – you might not be able to understand him, but, you know, he’s actually a nice bloke, you know, and it’s not just a piece of meat on a bed.  So       
MS EASTMAN:   Okay.
MS BARNETT:   Yes, it was a bit       
MS EASTMAN:   But you weren’t there when he went back home after being discharged, were you, Karen?
MS BARNETT:   I think I – I think       
MS NASH:   I believe, but I       
MS EASTMAN:   You were still there?
MS NASH:         can’t remember.
MS BARNETT:   I – I was there for a few days, and I think I might have left when he went home, yes.  I think – I think once he was discharged from hospital we went home       
MS EASTMAN:   Okay.
 
MS BARNETT:         and stuff like that.  So       
MS EASTMAN:   All right.  So things travel along until October 2014.  And this was a fourth admission to the hospital.  And in October 2014 Grant had suffered another stroke, but this was a stroke that was far more severe.
MS NASH:   That’s correct.
MS EASTMAN:   And it also ended up with him developing, as you both say in your statements, life-threatening pneumonia;  is that right?
MS NASH:   That’s correct.
MS EASTMAN:   And, Tracey, again, you attended hospital every day while Grant was in hospital, and you spent most of the day with him?
MS NASH:   That’s right.
MS EASTMAN:   And you say that you remember both Karen and Naomi travelling to have a bedside vigil.
MS NASH:   That’s right, yes.
MS EASTMAN:   So it was pretty dire, wasn’t it?
MS NASH:   It was.
MS EASTMAN:   All right.
MS BARNETT:   I was staying overnight for the first three nights.  My sister and I were – Naomi and I were on – were for the first pretty much four or five days we stayed overnight because we thought he was going to die and we wanted to make sure he had a family member with – with him because, you know, I – I wouldn’t want to die alone in a hospital, if you get my drift, you know.  Who wants to die alone in a hospital and not have people that love you around?  And they were sort of saying that we couldn’t, but I said, “Well, try removing me.  I’m staying.  This – this man needs me.  He’s my brother.  And would you do that to your family, you know?  Like, I’m staying.”  I know it wasn’t policy for them to have family overnight and probably there has been problems, but I slept in a chair or sat in a chair and made sure he was okay, swapped with Naomi at some stage one time.  So       
MS EASTMAN:   How was Norm during this time?
MS BARNETT:   Devastated.  Devastated.  Found it very difficult to come to the hospital in some ways, you know, because he was like, “Oh my God, what’s – what’s happening?”, you know.  Dad wasn’t in the best health.  He’s – the reason why we had to employ Tracey was because he – he’d had his own – he’d put off his own  
medical conditions because he had looked after Grant and my mother, and he’d put off his own medical condition.  So he had had a twisted bowel and couldn’t do full-time care of Grant any more, you know, so we employed Tracey, which was just a godsend because Naomi and I actually spent four and a half months in Bundaberg.  Like, I live in New South Wales.  Naomi was living eight/nine hours’ drive away.  That year we spent four and a half months each.
MS EASTMAN:   Going back and forth.
MS BARNETT:   Going back and forth.
MS NASH:   And can I       
MS BARNETT:   Being there, to give respite to Tracey or being there initially for periods of time to make sure Grant got the appropriate care, because even though Mum and Dad had looked after him for so long and were so astute when he turned 18 when he got the disability pension that they put money away, I’m going to say that there was no – what I got told by disabilities in Bundaberg is, “We didn’t realise the extent of his disabilities because he had been looked after by your mum and dad for so long.”  All right.  So – I said, “So are we going on a waiting list just when Mum and Dad – well, Dad needs you?  There’s nowhere – no one to help us, you know.  Like, Dad can’t care for him anymore.  We can’t leave our jobs and stuff.  You know, like this is – this is a terrible system.  How does this work?”
So Dad – and I will say – I will put it there too.  During that time, those hoists and wheelchairs and – that were bought by my father, not provided by the government.  That house was modified and the bathrooms were modified at my parents’ expense so he – they could accommodate my brother.  When he had that final stroke, my father, who wasn’t well himself, travelled to Darwin to get a wheelchair bus and drove it back to Bundaberg so my brother could still have outings even though he could only just move his head and the one – one arm.
These are people that had thought about what was going to happen as Grant got older.  These were people that basically saved millions of dollars – millions of dollars to the governments in Tasmania and Queensland and wherever else over the years because they refused to have residential care, they refused to overload the health system, and they refused to – they knew what their responsibility was.  And they did get some help, and I – it was actually me who said – because when Dad had to have a hip replacement I said, “Mum, we need to get somebody in to have – to shower Grant”, you know, because Dad had been showering him.  And then Dad – and that was the best thing, because it meant Dad could go off on his mornings again and do gardening and stuff like that.
It gave Dad a bit of freedom in the day.  You know, I – I just don’t get it.  I don’t get why that system means that the people when they need it most, when they’re getting older, they have to go on a waiting list, and they – and they’re – they’re killing themselves to care for their disabled children.
 
MS EASTMAN:   Karen, can I bring you back       
MS BARNETT:   Yes, sorry.  Sorry, yes.
MS EASTMAN:         to the hospital admission.  So this is - Grant had suffered a very significant stroke.
MS BARNETT:   Yes.
MS EASTMAN:   And he was in the hospital until December 2014.  And there’s a few issues that you wanted to raise about your both respective recollections about the time that he was in hospital.
MS BARNETT:   Yes.
MS EASTMAN:   And both of you say in your statements – respective statements that when he was in the hospital he didn’t receive a proper shower for 21 days, and you both have a recollection about that.  But you do say that you did observe that if he didn’t have a shower, that he might be rubbed down with body wipes       
MS BARNETT:   Yes.
MS EASTMAN:         while he was in the bed.  Now, I think someone has drawn to your attention the hospital records in terms of showering and hygiene issues generally;  is that right?
MS BARNETT:   Yes.
MS NASH:   Yes.
MS EASTMAN:   And so is it the case that both of you recall that he went for a period of 21 days without a shower, and that’s your recollection?
MS NASH:   That’s correct.
MS BARNETT:   That’s definite.  It’s – it – like, a man the size of my brother – now I’m short, he was nearly six foot.  He was obese.  He was difficult, where – even when he was moving, he was difficult to shower or wash or give a bath – a sponge bath to because he had lots of creases and places where it was difficult to get to, and it was like that – he was incontinent.  You can’t go three weeks or a number of weeks without a shower.  You smell.  You can’t – and on a bed, you can’t get into those places where you need to get into, and just wiping somebody down, you know, it’s – I don’t know, there should be designated teams that come – when there’s – that are called into hospitals when people like my brother are in there, that actually go around showering them because you can’t put that on the nurses.  
 
I mean, I know the nurses there, they were doing the best they could.  They had some horrible infection in the next ward that they were trying to keep out of every other ward and they were having to gown up all the time and things like that.  So putting that on to the nurses and that – and I think most of the nurses were trying to do the right thing, you know.  They just didn’t have the time.  They were underloaded.  So having a designated team there actually comes in and feeds people and showers people would be a really good idea.  And what did you       
MS NASH:   Yes.  Why – my understanding was whenever I asked on numerous occasions, “Could Grant have a shower today?”, it would be either it depends on what the wardies are doing, the wardies are busy.  Their policy was two wardies and a nurse just bed sponge him and basically the same with a hoist and, you know, full swing hoist into the shower.  But I kept trying to tell them that, “If you could get him on to the chair, I could do it, because I do it all anyway”.  Hoist him on to the shower chair and into the shower by myself, occasionally with assistance from Norm and eventually when he did come home, with another person helping.
MS EASTMAN:   But you’ve seen, haven’t you now, the hospital said Grant did receive some full showers, some sponge baths, and his hygiene was cared for in relation to his incontinence.  You’ve been shown some records or told about that today;  is that right?
MS BARNETT:   So why did he have bits of gunk stuck between his fingers and in his groin that stunk?  When Tracey and Dad were finally were allowed to take him home to shower him, why were there stinky grimy grotty bits in the creases and between the fingers which obviously weren’t properly cleaned?
MS EASTMAN:   All right.  One of the issues for you, Karen, was that you wanted to see whether he might be able to come home during the period of the time that he was in hospital, and I think this might be referred to as gate leave.
MS BARNETT:   Sounds like prison, doesn’t it?
MS EASTMAN:   But you – so your recollection is that you and Norm thought that the best prospect for his recovery was to be in a familiar environment outside the hospital.  And you advocated that he be able to come home during the day, and your recollection is that there was resistance to that, that it would be against the medical advice to do that.
MS NASH:   It wasn’t the done thing at the time to take a patient home to shower and to have some sort of respite from the hospital, yes.
MS EASTMAN:   All right.  Yes.  
MS BARNETT:   Yes.
MS EASTMAN:   So a respite from the hospital and       
 
MS NASH:   Yes, for Grant to flourish.  Grant didn’t like hospitals, didn’t – yes, it wasn’t very       
MS EASTMAN:   It wasn’t the done thing, but you advocated.
MS NASH:   Yes, Norm did.
MS EASTMAN:   And your strong advocacy resulted in Grant having what is described as gate leave.
MS NASH:   Gate leave, that’s correct.
MS BARNETT:   Yes.
MS EASTMAN:   You agreed, don’t you, that it wasn’t simply that you asked and the answer was no.  It might have been challenging, but eventually you got there.
MS NASH:   With persistence from Norm, yes, it was agreed to.
MS EASTMAN:   But during that course of his period in hospital from October to December, he was able to come home       
MS NASH:   That’s correct.
MS EASTMAN:         during the day.
MS NASH:   Yes.
MS EASTMAN:   And then returned to the hospital at night for care;  is that right?
MS NASH:   Yes.
MS BARNETT:   It appeared like they were trying to delay that at times.
MS NASH:   But yes, there were – on some days       
MS EASTMAN:   That was your feeling?  Yes. 
MS NASH:         instead of it being – like, Norm wanted every day, they may have wanted it not to be every day.  So some days there were issues put in front of us, barriers, if you like.
MS BARNETT:   Or appeared to be, anyway.
MS NASH:   Appeared to be, appeared to be, yes.
MS EASTMAN:   That’s your perception.
 
MS NASH:   Yes.
MS EASTMAN:   And the hospital might say, “Well      ”
MS NASH:   Yes.
MS EASTMAN:   “      you know, it is a bit unusual and it was against the medical advice      ”
MS NASH:   Yes.
MS EASTMAN:   “      and we suggested it wasn’t a good idea but eventually we agreed with the family”.  
MS NASH:   Yes.
MS NASH:   You accept that?
MS NASH:   Yes, that’s correct.
MS BARNETT:   And he did.  He improved drastically once he was allowed home.  And the other thing about that none of them were asking him.  None of the medical staff were asking him.  
MS NASH:   He was always       
MS BARNETT:   He was going, “I want to go home Dad, I want to go home Karen, I want to go home, Tracey, I want to go home”.  I don’t know what was wrong with understanding that very simple statement by a human being, but according to, you know – that was not allowed and I don’t know, as a child he was sent home from place – hospitals to recover because they knew – the medical staff in Tasmania knew that he would recover better in a familiar environment with his family, and I just don’t understand why that was       
MS NASH:   Yes, and       
MS BARNETT:         hard – a more difficult issue in Queensland.
MS EASTMAN:   It was frustrating for all of you, wasn’t it?
MS NASH:   And the inconsistencies, too, when one day they would say, “We don’t have a sling or we can’t get the sling just yet”, Norm would have a sling there and bring it up.  And one day we were allowed to use it, then the next time we wanted to take him out someone would say, “That sling is against hospital policy”.  It was like it was all right yesterday but it’s not right today.  Those sorts of things.
 
MS EASTMAN:   All right.  So Tracey, one of the other matters you deal with in your statement was Grant’s diet during the period that he was in hospital.  So he was fitted with a feeding tube;  is that right?
MS NASH:   That’s correct, yes.
MS EASTMAN:   And that was because he was having difficulty swallowing due to the stroke.
MS NASH:   Yes.
MS EASTMAN:   And as far as you understood, in terms of what his nutrition was, that that was a pre-mixed food out of a carton.  That’s your memory.
MS NASH:   Yes.  Initially it was a nasogastric tube.  And we were told that – because when we were taking him home, Grant was attempting to feed himself.
MS EASTMAN:   When he was at home.
MS NASH:   When we took him home from the hospital he was attempting to eat something but it got in its way – in his way.  
MS EASTMAN:   Right.
MS NASH:   And then they said, “Well, if he was to go home, he would be fitted with a gastronomy tube through the stomach”.  Okay.  
MS EASTMAN:   And that’s what happened.
MS NASH:   We understood that’s what happened, yes.
MS EASTMAN:   So this process of the gate leave, when he was going home, having a shower at home, but also you wanted to have some variety in his diet, and I think your concern and Norm’s concern was that the nutrition and the particular pre-mixed food used for feeding him through the PEG feeding was high in sugar.
MS NASH:   That’s correct.
MS EASTMAN:   And so you were worried about what effect that might be having on his blood sugar levels.
MS NASH:   Yes, both Norm and I were, because whenever his blood sugars went up really high he was injected with a drug to bring them down.
MS EASTMAN:   Okay.  So you were worried about that.
MS NASH:   And he was – yes, very worried.  Norm was. 
 
MS EASTMAN:   And you and Norm thought, “Well, look, maybe we might be able to do something different in terms of his overall nutrition”.
MS NASH:   That’s correct.
MS EASTMAN:   And am I right in understanding that Norm wanted to push for a change in Grant’s diet and you made some inquiries with his GP about what might       
MS NASH:   Well, before       
MS EASTMAN:         or was there something that happened before that?
MS NASH:   Before he left hospital Grant – Norm wanted to know why we couldn’t put real food, as he put it, down the tube.  It’s not the done thing.  It’s not very common.
MS EASTMAN:   Do you remember the hospital saying it’s not the done thing?
MS NASH:   Yes, that’s       
MS EASTMAN:   And if you do this       
MS NASH:   Can’t be done.
MS EASTMAN:   Can’t be done, but if you do this, there’s a real risk that this might cause some harm to him or that there might be a block in the feeding tube.
MS NASH:   This is correct.
MS EASTMAN:   And this could be dangerous.
MS BARNETT:   Yes.
MS NASH:   The tubes       
MS EASTMAN:   Something like that.
MS NASH:   The tubes weren’t made for it and all that sort of stuff.
MS EASTMAN:   The tubes weren’t made for it.
MS NASH:   But Norm had an argument for that.  
MS EASTMAN:   Right.  What was Norm’s argument?
 
MS NASH:   Norm’s argument was that he had a sister who had throat cancer and for nearly 15 years or so she fed herself real food through a tube.
MS BARNETT:   In the stomach.
MS NASH:   And he couldn’t see why it couldn’t be done for Grant.
MS BARNETT:   Yes.
MS NASH:   Even though we knew and we’d researched it and from Norm’s personal experience that as long as the food was blended up with a – we had a NutriBullet – to the consistency of pouring, so we could gravity feed it through.  And Norm did the cooking, made the soups and stews, and I blended it up to what was consistent with that.  We would flush the tube beforehand, gravity feed it through, flush the tube afterwards to make sure everything was great and then do the same thing the next time, and it was – well, for that time while we were at home until the next incident, I believe it was very successful.  Not only did the – we went – first of all, after he came out of hospital with all this carton food, we went to the GP and asked can we try it, the doctors in the hospital don’t like it.
MS EASTMAN:   That was after he had left.
MS NASH:   This is after he had left the hospital.
MS EASTMAN:   Right.  Okay.  Not before.
MS NASH:   Not before.
MS EASTMAN:   I just wanted to clarify that, yes.
MS NASH:   Yes, yes.  And the GP said he couldn’t see why not.  And Norm stated to the GP that his aim was to – for Grant to lose weight, feeding him real food and to get his blood sugar levels under control.  
MS EASTMAN:   Okay.
MS NASH:   And if not, get him off the medication altogether, because he was told while Grant was in hospital that he would be insulin dependent for the rest of his life.  Norm would not take that as a       
MS EASTMAN:   Norm was pretty determined, wasn’t he, on this one?
MS NASH:   He was a very determined man, yes.
MS EASTMAN:   All right.  Okay.  So by December, Grant returns home.
MS NASH:   That’s correct.
 
MS EASTMAN:   And then I just want to go to the next issue and the next admission.  So Grant had the feeding tube, but that did need to be changed from time to time;  is that right?  
MS NASH:   Yes.  We were led to believe that after three months after it was put in it was to be removed by the doctor that put it in, and then have another one put in, but later on the gastronomy nurse, stoma nurses they call them, I think, now, could then teach me how to, if there was any issues, to change it or if it came out, if I wasn’t comfortable with it I could ring her and she would come and have it done at home, that I – you know, with this new one, yes.
MS EASTMAN:   All right.  So you took him up to the hospital for the – what you believed to be a routine procedure.
MS NASH:   That’s correct.
MS EASTMAN:   And at the end of March 2015, what happened on that day from your recollection was far from being routine procedure.
MS NASH:   That’s correct, yes.
MS EASTMAN:   Okay.  Can I summarise the evidence this way       
MS NASH:   Yes.
MS EASTMAN:         your recollection is that when Grant came to the hospital, that a doctor came in to the room and in quite a sort of forceful way, pulled the feeding tube out;  is that right?
MS NASH:   That’s correct.
MS EASTMAN:   And you observed Grant experiencing some pain.
MS NASH:   That’s correct.
MS EASTMAN:   And then that resulted in Grant – so you say having the tube removed in that fashion and the attempts to replace the tube caused either Grant’s bowel to be perforated, but you later have learnt that the perforation was in relation to his stomach;  is that right?
MS NASH:   That’s correct.  
MS EASTMAN:   Okay.
MS NASH:   After all that happened, somebody came in, a medical student, I presume, and talked to Norm and I, saying that Grant needed an operation for a perforated bowel.
 
MS EASTMAN:   That’s what you remember being told.
MS NASH:   That’s what I remembered, yes.  And Norm didn’t quite hear, after explaining that he needed to go under anaesthetic, what the risks were, and that it was a perforated bowel, he needed to sign something.  Norm didn’t hear it, so I had to then tell Norm what he was saying and clarifying that Norm – Grant had a perforated bowel and he needed an operation to repair it, and Norm signed the form to give the permission to operate.
MS EASTMAN:   So Grant had to have an operation.
MS NASH:   That’s correct.
MS EASTMAN:   And       
MS NASH:   It wasn’t the right – the simple procedure that I’d led Grant to believe that it was going to be.
MS EASTMAN:   So you had assumed from what you had been told that the operation would be straightforward and it would be to just repair a perforated bowel.
MS NASH:   That’s correct.
MS EASTMAN:   But you now understand that the surgery might have been a little more complex;  is that right?
MS NASH:   That’s right, yes.
MS EASTMAN:   And that he needed to have a repair in terms of his stomach;  is that right?
MS NASH:   That’s correct.
MS EASTMAN:   But the operation resulted in Grant then being admitted to the ICU;  is that right?
MS BARNETT:   Yes.
MS NASH:   Yes, that night.
MS EASTMAN:   And       
MS NASH:   About midnight that night.
MS EASTMAN:   And that once he was in intensive care, his position was quite grave;  is that right?
 
MS NASH:   Yes, that’s correct.
MS EASTMAN:   Enough to call Naomi and to call Ren to come again.
MS BARNETT:   Yes.
MS NASH:   Norm did, yes.
MS EASTMAN:   So Norm did that.
MS BARNETT:   Yes.
MS NASH:   Yes.
MS EASTMAN:   And from what you both recall of watching Grant following the surgery was that he was becoming distressed and that his behaviour indicated that he was experiencing pain;  is that right?
MS NASH:   Yes.
MS BARNETT:   Yes.
MS EASTMAN:   You had to make a difficult decision;  is that right?
MS NASH:   Yes.  Did you want – who is answering, me or Karen?
MS EASTMAN:   Who wants to talk about that?
MS NASH:   Do you want to       
MS BARNETT:   Difficult decision, you were with Dad when you made the difficult decision.
MS NASH:   Well, after the operation, he went back to the normal ward.  That night at about midnight, I got woken up to a phone call to say we have to go back to the hospital, Grant’s going into ICU.  Okay, so up we went.  There’s Grant on a breathing machine and all these other machines, he had to have blood.  I was led to believe he was given two lots of blood in the ward, and then two lots in ICU.  And Karen arrived the next day, I believe.  And I got some respite from being up there all the time because Karen took overnight shifts and I went as a normal visitor, like a family member would, rather than staying with him.  And it was a couple of days later, all this happened within       
MS BARNETT:   He was back in surgical.  So ICU staff were amazing.  They talked to Grant like he was actually human.  I guess they were used to having people that were not able to necessarily respond as – in a normal way but, yes, that – they – ICU was great.  When we got back to surgical, that’s when we had to model again for  
nurses to not just come in and lift the covers and start jabbing and doing treatment, you had to say, “Butch, the nurse is here.  Is it okay for him to do the blood pressure or whatever”.  It was quite horrible to watch.  
They just sort of thought that – and sometimes Grant was sleeping, and they would just lift the covers and start working on him.  It was like who does that, you know?  For me it was a stark contrast because 14 months later, my father was in the same ward for an operation.  And so Norm, the determined person, was in the ward for the same operation being nursed by the same nurses and they were completely different to him.  They treated – they said, “Mr Barnett, we’re here to give you your medication or take your blood pressure.  Is that okay?”  You know, and those type of things and it was like a completely different thing.  Anyway, getting back to the difficult decision. 
MS EASTMAN:   Well, I think the difficult decision – sorry to be oblique about it, but it was by 7 April, Grant’s condition is not good, but as a family you decided that you were going to take him home.
MS BARNETT:   Yes.  Well, we wanted to take him home at the beginning of Easter, which was – and we were told that there wasn’t enough patient transport available to take him home.  We sort of said, well, we’ve got a bus.  We can stick him in the wheelchair and take him home, but that wasn’t okay.  So Dad waited until after the Easter period, give them a bit of leeway.  But again, went up to the hospital and they basically said, “No, it’s against” – and this is in a public ward.  No privacy.  And we found – in that conversation –  I think, Tracey, you should talk about it because you were there.
MS NASH:   Well, I didn’t believe it was as grave as what it was until they kept telling us that Norm kept saying he wanted to take him home, Grant kept asking to go home, “Want to go home, Dad, want to go home”.  And he says, “Yes, mate, going to get you home”.  And as soon as he said that to Grant, the doctor is going that’s against doctors’ orders to do that.
MS EASTMAN:   So the medical advice was that it would be very unwise       
MS NASH:   To take him home.
MS EASTMAN:         to have a discharge and to go home at that point in time.
MS NASH:   Yes.
MS EASTMAN:   And – but there had been discussions about what his arrangements might be if and when he left the hospital, around aged care and the like.
MS NASH:   Yes.
 
MS EASTMAN:   But Tracey, during this conversation which was going back and forth between Norm and the doctor, Norm saying, “I want to take him home”, and the doctor saying, “No, I would counsel against that very strongly”, you heard the words that made you think that his situation was one where he may not live       
MS NASH:   Yes.
MS EASTMAN:         to survive the hospital visit.  And you raised whether or not he could be discharged and into palliative care.
MS NASH:   That’s correct, yes.
MS EASTMAN:   So you had picked up from the conversation that something was quite serious.  And within half an hour of raising the option of palliative care you say things swung into gear.
MS NASH:   That’s correct.
MS EASTMAN:   So what happened?
MS NASH:   When the doctor said the words, “There’s nothing more we can do for Grant”, I sort of thought, well, what is it when you can’t do something for someone?  I turned around and I said to the doctor, “Can we take him home on palliative care?”  And the doctor looked at her underling, as I call them, but another medical student and said, “Yes, that can be done”.  And next thing you know, palliative care are there organising it, what do you need.  Within half an hour I’m ringing Karen saying       
MS BARNETT:   Less.
MS NASH:         less – “Get Grant’s bed out, there’s a bed arriving.  There’ll be suction and anything else we need, he’s coming home under palliative care”.
MS EASTMAN:   All right, and       
MS BARNETT:   The bed arrived in less than half an hour and the oxygen, etcetera, arrived in less than half an hour.  It was unbelievable.
MS EASTMAN:   I think, Tracey, you say in your statement the palliative care team were extremely empathetic, helpful and efficient.  You couldn’t fault them.
MS NASH:   They were wonderful.
MS BARNETT:   Amazing.
MS NASH:   Wonderful.
MS BARNETT:   Both times.
 
MS EASTMAN:   So they arranged for Grant to have a morphine self-injector.
MS NASH:   That’s correct.
MS EASTMAN:   And they came to the home and helped you.
MS NASH:   That’s correct.  They explained all the medications, they drew up all the medications and if I needed them what I had to do and all that sort of stuff, how to sign off on it and       
MS BARNETT:   Very supportive.
MS NASH:   Very, very supportive.
MS NASH:   Amazing service.  I can’t fault palliative care or ICU.
MS EASTMAN:   So those       
MS BARNETT:   They were amazing.
MS EASTMAN:   So those final two days for Grant to be able to come home, and you knew you had the palliative care, but he passed away, didn’t he       
MS BARNETT:   That’s correct.
MS EASTMAN:         a couple of days after coming home?
MS NASH:   Karen and I beside him.
MS BARNETT:   We didn’t leave his side.
MS NASH:   No.
MS BARNETT:   And       
MS NASH:   We slept by his bed.
MS BARNETT:   Yes.
MS NASH:   One on each side.
MS BARNETT:   We – we – in the ambulance on the way home, a plane came in and he was able to see the plane, which was great because Dad and Mum had actually bought the house near the airport so he could actually watch the planes as he got a little bit more immobile and stuff.  And then that was really cool when I watched him, you know, because he had been – he had been cramping himself up in the ward.  He had been like – and he was almost – he was cutting off his windpipe.   
He was cutting off his windpipe.  And I actually called a doctor at one stage and said – you know, he said, “Well, you know, there’s not much we can do.”  And I said, “Yes, but, you know, do something about this right now.”  And what he needed to do was come home because he – we put him in his bed and he actually physically lied back and went, “Ah”, and then went, “Get mail.”  That was his duty from a very young age, and I had to go out to that mail box and get the mail because otherwise I was in deep strife, basically.
So, you know, he – he remembered his responsibilities all the while from that but, yes, that was – he – he just wanted to be at home with us.  And you could see him.  By the bed he was just listening, Dad and Remy – Dad’s partner, Remy, and other people around the place would be out having a cuppa or come in and visit and stuff like that.  The tele was on or, you know, kids would be around and he was just be like – you know, he was in and out of consciousness by that stage, but he was happy and he was interacting and – yes, he was home with us.
MS EASTMAN:   His       
MS BARNETT:   Where he needed to be.
MS EASTMAN:   Notwithstanding that it’s close to five years, his death still causes both of you, personally and your family, a great deal of distress.
MS BARNETT:   Dad’s dead because of it.  He left – Dad – Dad died 18 months after Grant.  So he had palliative care again.  And I directly believe that – well, he put off his own health conditions to       
MS EASTMAN:   Look after him.
MS BARNETT:   Yes, because he had to constantly fight and constantly be an advocate.  He’s – you know, one of my last conversations with my dad was I said – and it was, “Dad, you know, you could have gone off and had a holiday or something like that.”, And he said, “I would do it all again.”
MS EASTMAN:   All right.  So       
MS BARNETT:   “Do it all again.”
MS EASTMAN:  So both of you decided after Grant’s death that you were concerned you wanted to follow a few things up.  So, Tracey, you wrote a letter to the Coroner because you wanted to have an autopsy conducted.
MS NASH:   Norm did, and he       
MS EASTMAN:   Norm did that.
 
MS NASH:   Norm asked for an autopsy because he wanted to know what went wrong.  And he asked me to write my version of what I saw, and, yes, I wrote it to the Coroner because I thought, “I will do what Norm wants.”
MS EASTMAN:   And in your statement you say that you never received a response from the Coroner after writing the letter, but you’ve been told, haven’t you, that the Coroner’s office has done a search to see whether there was a response and there may have been an administrative email sent to you in response to your letter, but you don’t remember seeing that.
MS NASH:   I don’t recall getting a response, but it was very difficult times and not long after Grant’s funeral and that I was given some respite, some time off, and then Norm sent me to Tasmania to look after his 92-year-old sister who had had a stroke in Tasmania.
MS BARNETT:   Yes.
MS EASTMAN:   All right.  But you’re aware, aren’t you, that an autopsy was conducted?
MS BARNETT:   Yes.
MS NASH:   Yes.
MS EASTMAN:   And you’re aware, aren’t you, that an autopsy report was prepared?
MS NASH:   That’s correct, yes.  We are now.
MS EASTMAN:   And are you – Tracey, is your best recollection that Norm received a copy of the autopsy report?
MS NASH:   Of the autopsy.
MS BARNETT:   Yes.
MS NASH:   That I remember him showing to me, yes.  But       
MS EASTMAN:   And, Ren       
MS BARNETT:   Yes.
MS EASTMAN:         you’ve seen a copy of this as well.
MS BARNETT:   Not – the first time I saw the extended findings was the other day when – the legal team rang up.  I hadn’t seen the three or four pages or whatever  
else.  And I have to say, I haven’t read it yet because I was leaving it till after today because I found it too distressing.
MS EASTMAN:   Okay.  So the autopsy report – and, Commissioners, this will be part of the exhibits – says the cause of death was, first, congestive cardiac failure.
MS BARNETT:   Yes.
MS EASTMAN:   Secondly, hypertensive heart disease, and then also Klinefelter syndrome and obesity.  So has anybody told you that your brother’s genetic condition was a cause of his death?
MS BARNETT:   No.
MS EASTMAN:   You’re now aware, aren’t you, that in addition to the autopsy report, that the Coroner also made some findings?
MS NASH:   Yes.
MS BARNETT:   Yes.
MS EASTMAN:   And neither of you have seen a copy of the Coroner’s findings until you’ve been shown some of the documents for the hearing.
MS NASH:   Last week, yes.
MS EASTMAN:   But you’re now aware that the Coroner issued some findings on 10 June 2015.
MS NASH:   That’s right.
MS EASTMAN:   And the Coroner’s findings, in terms of the cause of death, repeat what is in the autopsy report, and that includes a finding that Klinefelter syndrome and obesity were the cause – were one cause of death.
MS NASH:   That’s correct.
MS EASTMAN:   You’re aware of that.
MS NASH:   Yes.
MS EASTMAN:   And in addition to making inquiries in relation to an autopsy and the work of the Coroner, Norm also made a fairly extensive written complaint to the hospital;  is that right?
MS BARNETT:   Actually, the family did.
 
MS EASTMAN:   The family.
MS BARNETT:   He signed it, but       
MS EASTMAN:   He signed it.
MS BARNETT:   But I worked with – I worked – I actually wrote that.
MS EASTMAN:   And so       
MS BARNETT:   Was that to the Coroner or the hospital?
MS EASTMAN:   This is:
To whom it may concern.
And so this was to the hospital.
MS BARNETT:   Yes, that – that       
MS EASTMAN:   And I understand       
MS BARNETT:   That was co-composed by the family.
MS EASTMAN:   And it says the Barnett family and Tracey Nash, and Norm       
MS BARNETT:   Yes.
MS EASTMAN:         has signed it.  And you had lost a copy of this document.
MS BARNETT:   That’s right.
MS EASTMAN:   But you’ve been shown that in the course of       
MS BARNETT:   Yes.
MS EASTMAN:         preparing your evidence.
MS BARNETT:   No, I actually had a copy of that, or       
MS EASTMAN:   You did have a copy.
MS BARNETT:   Or a draft of it somewhere on my computer I found – I found a draft of that.  But I couldn’t find the emails that I had attached that to.
 
MS EASTMAN:   All right.  Do you – do you remember, either of you, Norm receiving a letter from Queensland Health dated 7 September 2015 in response to Norm’s letter?
MS NASH:   I don’t.
MS EASTMAN:   Were you aware of that?
MS BARNETT:   I – I – I do.  I remember – I remember getting a copy of that.  Dad sent me a copy.
MS EASTMAN:   All right.  So – and have you read this letter       
MS BARNETT:   Yes.
MS EASTMAN:         recently?
MS BARNETT:   Yes, I skimmed over it today.
MS EASTMAN:   Right.  And do you recall that in the letter the author of the letter says that there had been improvements to the service, including the adoption of what’s called Ryan’s Rule?  Do you remember that?
MS BARNETT:   Yes, well, that was in place – that was in place prior to.  There were signs up all over the place.  So it should have been in place already.  So I think training about Ryan’s Rule might have been a much better idea, and I guess training on how to relate to people with disabilities and to talk to people normally.  And – and if you can’t – if somebody doesn’t respond in one way, then do it another way because Butch wouldn’t respond to people.  You know, like, he – he needed Tracey to go or Dad.  He needed people he knew to get a response.  He – he – played – we called it playing possy.  And that’s one of the reasons in recovery that – after that operation, that emergency procedure, that they – they left him all day in recovery.
MS EASTMAN:   Do you recall in this letter that the author says the following:
I appreciate that communication processes can always be improved.  And although our professional and many of our administrative and operational staff complete studies on this topic, I sincerely apologise that you felt at times staff did not portray these attributes to an acceptable standard.  I admire your commitment to advocate on Grant’s behalf in his dealings with our hospital and health service.
Do you remember that part of the letter?
MS BARNETT:   Yes.
 
MS EASTMAN:   And you have become aware in very recent times that as at February this year, that the hospital has undertaken another review.
MS BARNETT:   Mmm.
MS EASTMAN:   But you haven’t read that document.
MS BARNETT:   No, I haven’t read that document.  It would have been nice to know so we could have – contribute, but, you know.
MS EASTMAN:   Did anybody from the hospital inform you at any time       
MS BARNETT:   No.
MS EASTMAN:         from 6 February onwards that a       
MS BARNETT:   No.
MS EASTMAN:         review was undertaken?
MS NASH:   No.
MS BARNETT:   No.
MS EASTMAN:   And other than the documents that you’ve been shown this morning, you were unaware of this review at all;  is that right?
MS BARNETT:   That’s right.  And I checked with my sister today as well, and she hadn’t received anything anyway.  And I don’t understand that, because they had – because of communications, they had my email, they had my mobile number.  There’s no reason why at least I shouldn’t have been contacted.
MS EASTMAN:   All right.  And have you read this document at all yet?
MS BARNETT:   No.
MS EASTMAN:   All right.
MS NASH:   No.
MS EASTMAN:   In the document, the hospital sets out some quality improvement initiatives since 2015.  And one of them – and there’s a number of them, so I’m not going to summarise these, Commissioners, but I just want to draw attention to one.  One of the initiatives since 2015 is this:  the adoption of, in inverted commas, “Hello, my name is… is an initiative to ensure that staff introduce themselves and their roles to patients, families and their carers”.  You’ve said, Tracey – you’re giving me wry look there.
 
MS NASH:   I was just having a smirk, sorry.
MS EASTMAN:   You have said, Tracey, that one of the things you noticed is that people didn’t introduce themselves when they came in.  And so it appears that one of the adoptions of new initiatives since that time is a direction to ensure that staff say hello and say who they are.
MS NASH:   Yes, that’s       
MS EASTMAN:   Is that a welcome improvement?
MS NASH:   Yes, it is.  It makes me happy to know that.
MS BARNETT: That’s a great - - - 
MS EASTMAN:   All right.  Commissioners, you will have the benefit of the whole of this document which is a fairly detailed account of various things.  And this is part of the material that the Queensland Health Department wishes to tender in relation to the documents.
COMMISSIONER SACKVILLE:   Yes.
MS EASTMAN:   Finally – and I’m just conscious of the time, Commissioners.
COMMISSIONER SACKVILLE:   Yes.
MS EASTMAN:   Both of you have said in your statements about the impact on you and some of the things that could be done better in terms of suggestions for change.  Can I just briefly run through some of those with you both       
MS NASH:   Yes.
MS EASTMAN:         to make sure that we’ve captured them all.  So, Tracey, you think doctors and nurses should be trained as to how to interact and engage and treat people with intellectual disability.
MS NASH:   That’s correct.
MS EASTMAN:   And you say this in paragraph 99:
Health professionals should make themselves known to their patients and make known the role they are going to have with the patient’s care.  Even if this is as simple as, “Hello, I’m going to be your nurse for the day”, or, “Hello, do you remember me?”
And do you perhaps agree that maybe that suggestion has been taken up?
 
MS NASH:   Yes.
MS EASTMAN:   You think medical staff should get to know their patients first before they commence their duties.  And you look there to be helpful engagement, so asking patients questions in a way that the patients can be able to answer;  is that right?
MS NASH:   Yes.  And get to know how does that patient react to a comment or, you know, how do they answer so I can then – or they can then adjust their answers or their questions accordingly to what they could respond to.  Does that make sense?  Yes.
MS EASTMAN:   And you think there should be more transparency across the hospital system, that patients and families should have the right to know the outcome of complaints and incidents involving the people they care for;  is that right?
MS NASH:   That’s correct, yes.
MS EASTMAN:   And up until the information that you’ve been shown today or over the past couple of days, you were unaware that the hospital had undertaken the review, albeit almost five years after       
MS NASH:   I only found out today, yes.
MS EASTMAN:   Now, Karen, for you, your suggestions for change are at paragraphs 68 through to 70.  And you also identify training and the need to follow basic protocols;  is that right?
MS BARNETT:   Yes.
MS EASTMAN:   And you say that you would also like to see doctors and nurses trained in recognising the meaning and significance of Ryan’s Rule, so that they can recognise that family members know the uniqueness of their own       
MS BARNETT:   Yes.
MS EASTMAN:         family member in terms of the care.
MS BARNETT:   Yes.  Grant       
MS EASTMAN:   You would introduce Ryan’s Rule.  Do you accept I’ve just read to you       
MS BARNETT:   Yes.
MS EASTMAN:         that the letter that went to Norm specifically noted Ryan’s Rule?
 
MS BARNETT:   Yes.
MS EASTMAN:   And that you received an apology that maybe that the process hadn’t been followed.  And I’m paraphrasing there.
MS BARNETT:   Yes.
MS EASTMAN:   But you’ve got the exact words that I’ve read out to you.
MS BARNETT:   Yes.
MS EASTMAN:   And you also say you think there should be greater information sharing between the palliative care teams and the paramedics and this related to just the circumstances of calling the ambulance after Grant passed away. 
MS BARNETT:   That was the most – I think for me that was the most distressing thing.  We had been looking after Grant, Butch, overnight.  We were very stressed, we had had no sleep, and because Dad wanted an autopsy, we couldn’t have the funeral directors that we wanted, we had to wait for the others and we had to wait for the police.  Luckily, Tracey had been informed by palliative care if you do – the paramedics might arrive like storm troopers, do the - give them the do not resuscitate. 
And the inference constantly was through by the paramedics, while we waited for the police and then the police, was that, “Why have you got a body here for two hours?”  Well, actually, I rang palliative care because it was after hours because palliative care - and so I had to show them the phone.  And the inference was that we had murdered him and that we had used morphine, the morphine to drug him so we didn’t have to deal with him and that was quite       
MS NASH:   That was the first thing they noticed when they walked in was the morphine in the syringes on the table.  
MS BARNETT:   Yes.
MS NASH:   It’s like, “Who administers those?  What’s that doing there?”
MS BARNETT:   “Why have you had a body there for two hours?”
MS NASH:   And it’s then bag it all up, you know, it was like what do they think we did?
MS BARNETT:   And then asked for statements.  That’s the last thing we needed as a grieving family was that – you know, I just feel like the paramedics arrive they come out of Bundaberg Hospital.   Palliative care is based in Bundaberg Hospital.  There should be some – fair enough the police mightn’t have known, but the reality is that somebody should have known that – everybody on the palliative care list  
needed to be told because you don’t know if they’re going to need an ambulance or something like that.
MS EASTMAN:   So that was something that you had in your recommendations.
MS BARNETT:   Yes.
MS EASTMAN:   Finally, because you haven’t read this and you may not know, a final sentence of the review report which was finalised on 14 February this year says this:  
The reviewing team convey their sympathies to the family and the carer for their loss 
But no one has told you that, have they?
MS BARNETT:   No.  
MS EASTMAN:   Commissioner       
MS NASH:   He was healthy.  He was the healthiest he ever was.  He couldn’t raid the fridge, he wasn’t on diabetic medication.  When he went in for that routine procedure, we were thinking months, years.  He was dead 10 days later.  That was premature for me.  And that’s like, “Oh my God, what happened?  What happened to cause that?”  Yes, he may have had heart conditions and stuff like that, yes, he was on medication for those things.  He was on medication – well, he was off medication for diabetes because he was on the healthiest diet he’d ever had, through a tube.
MS NASH:   He had lost weight.
MS BARNETT:   He couldn’t actually raid the fridge or biscuit cupboard so – and he couldn’t have tobacco any more.  God.
MS EASTMAN:   Ladies, thank you very much for your evidence today.  There may be some questions that the counsel representing Queensland Health may wish to make, and I just, Commissioner, wanted to give the opportunity, if an application’s to be made, can we deal with that now and complete the evidence before we have a short break.
COMMISSIONER SACKVILLE:   Yes.  Are we going to have time to deal with the next witness?
MS EASTMAN:   Can I – when we finish this evidence, we might have a very short adjournment and then I can give the Commissioners an update on where things are travelling.  I’ve just been in the hearing room obviously, so I will need to make some inquiries.
 
COMMISSIONER SACKVILLE:   All right.  Thank you very much.
MS EASTMAN:   But I want to make sure if those representing Queensland Health, if they have an application to make, this would be the time to do it.
COMMISSIONER SACKVILLE:   That’s fine.  Can I thank you both, Karen and Tracey, for your evidence.  I know it’s not easy to come and talk about the experiences that you have had and your experiences with Grant.  So thank you very much for coming and sharing your story, and Grant’s story, and for the statement that you have made.  What I suggest, if you don’t mind, would you mind just – perhaps rather than stay there, if you just go down and sit, perhaps, in the first row and we will just see what’s going to happen, if anything.
MS McMILLAN:   I don’t have any – I don’t have any application.
COMMISSIONER SACKVILLE:   Thank you very much.
MS EASTMAN:   Then that completes the       
MS McMILLAN:   Providing the documents are tendered, no.
MS EASTMAN:   The documents will be tendered.
COMMISSIONER SACKVILLE:   Yes.
MS EASTMAN:   But that completes the evidence.  Thank you.
COMMISSIONER SACKVILLE:   Thank you very much.
MS BARNETT:   Thank you.
MS NASH:   Thank you.
COMMISSIONER SACKVILLE:   There will be no further questions. 

<THE WITNESSES WITHDREW    [4.09 pm]

COMMISSIONER SACKVILLE:   And Ms McMillan, we have the documents, I think, that are to be tendered, in fact.  Insofar as one can, one has been reading them in the course of       
MS EASTMAN:   I’m happy to read the documents to be tendered on the transcript, so it’s clear as to what documents are to be included.
 
COMMISSIONER SACKVILLE:   I’m sorry, I’m not sure if Ms McMillan wants to say something. 
MS McMILLAN:   No, I hadn’t finished.  And we will want to put a supplementary statement in because there are things that might have emerged in timelines that we will want to address when we produce documents, etcetera.  Thank you.
COMMISSIONER SACKVILLE:   All right.  Thank you very much.
MS EASTMAN:   Perhaps if we have the break, Commissioners, and I will come back and I will check the exhibit numbers are correct.
COMMISSIONER SACKVILLE:   We will take a break for a few minutes and perhaps someone could let us know when you are ready to proceed.
MS EASTMAN:   We will.  Thank you.
COMMISSIONER SACKVILLE:   Thank you.

ADJOURNED    [4.09 pm]

RESUMED    [4.26 pm]

COMMISSIONER SACKVILLE:   Ms Eastman.
MS EASTMAN:   Commissioners, I thank everybody who is in the hearing room, those who assist us in the logistics of the Royal Commission, and those watching the webcast.  It has been a long day and the Commission has covered a lot of evidence.  So I’ve made a decision that we won’t call the witness who was scheduled to give evidence now today, and she will give evidence on Friday morning.  And we have sufficient time on Friday to complete the evidence.  So all I need to do now is just formally deal with the tender of the material which I indicated earlier.
COMMISSIONER SACKVILLE:   Yes.
MS EASTMAN:   And then if we can adjourn till 10 am tomorrow.  So can I formally tender and have marked as an exhibit Karen Barnett’s statement which will be exhibit 4.22.
COMMISSIONER SACKVILLE:   Yes.
EXHIBIT #4-22 STATEMENT OF KAREN BARNETT DATED 12/02/2020 (STAT.0054.0001.0001)
 
MS EASTMAN:   The statement of Tracey Nash will be exhibit 4.23.  Then we jump a little bit.  So there is – which is tab 38A in the tender bundle, which is a letter from the Queensland Coroner to the Royal Commission dated 14 February 2020.  That will become exhibit 4.35.
MS EASTMAN:   The document which is behind tab 38B, which is the autopsy report of Grant Geoffrey Barnett, that will become exhibit 4.36.
COMMISSIONER SACKVILLE:   Yes.
EXHIBIT #4-23 STATEMENT OF TRACEY NASH DATED 10/02/2020 (STAT.0050.0001.0001)
EXHIBIT #4-35 LETTER FROM QLD CENTRAL CORONER TO DRC DATED 14/02/2020 (QLD.9999.0024.0001)
EXHIBIT #4-36 AUTOPSY REPORT OF GRANT JEFFREY BARNETT (QLD.9999.0024.0002)

MS EASTMAN:   The document at tab 38C, which is Form 20A, Coroner’s Finding and Notice of Completion of Coronial Investigation, will be exhibit 4.37.
COMMISSIONER SACKVILLE:   That document is dated 10 June 2015.
MS EASTMAN:   ’15, yes.
COMMISSIONER SACKVILLE:   And just for completeness, the autopsy report is dated 1 June 2015.
MS EASTMAN:   Yes.
COMMISSIONER SACKVILLE:   Yes.
EXHIBIT #4-37 FORM 20A CORONER’S FINDINGS AND NOTICE OF COMPLETION OF CORONIAL INVESTIGATION DATED 10/06/2015 (QLD.9999.0024.0007)
MS EASTMAN:   The next is the document behind tab 38D.  That is a letter from Queensland Health to Norm Barnett.  That’s dated 7 September 2015.  And that will become exhibit 4.38.
COMMISSIONER SACKVILLE:   Four-point-three-eight-D?
MS EASTMAN:   No, 4.38.
COMMISSIONER SACKVILLE:   Four-point-three-eight.
 
EXHIBIT #4-38 LETTER FROM QUEENSLAND HEALTH TO NORM BARNETT DATED 7/9/2015 (QLD.9999.0022.1307)
MS EASTMAN:   The next document, which is behind tab 38E, which is Clinical Case Review of Grant Barnett, 6 February 2020, that will become exhibit 3-point – sorry, that will become exhibit 4.39.
COMMISSIONER SACKVILLE:   Is that actually sixth of February, or is the date 14 February which appears on the last page       
MS EASTMAN:   I       
COMMISSIONER SACKVILLE:         of that document?
MS EASTMAN:   I thought the document was a sign-off on 14 February, but we’ve got in our notes 6 February.  I think the document itself refers to a meeting date on 6 February 2020.  But either date, I think the document’s readily recognisable.
COMMISSIONER SACKVILLE:   Yes, I think 14 February is the date of what is referred to as a case review sign-off by the Director of Medical Services.  Yes, thank you.
MS EASTMAN:   Then the document at tab 38F, which is Letter of Complaint to Bundaberg Base Hospital, it’s undated but is referred in the material as a complaint made on 3 August.
COMMISSIONER SACKVILLE:   Yes.
EXHIBIT #4-39 CLINICAL CASE REVIEW OF GRANT BARNETT DATED 14/2/2020 (QLD.9999.0024.0009)
MS EASTMAN:   That will become exhibit 4.40.  And then finally, I think I indicated that after we came back from the break I would deal with the formal tender of Jayne Lehmann’s statement.  And that is tab 40 in the material.  And that also includes the documents behind tab – when I say “the material”, part A of the tender bundle.  That also includes some documents at tab 41, 42 and 43.  And together, all of those documents will become exhibit 4.25.  Sorry to labour that, but I just wanted to make sure that’s clear for the transcript.  So that otherwise concludes the proceedings for today.  Thank you, Commissioner.
COMMISSIONER SACKVILLE:   Yes, thank you.  Just let me check something if I may.  Ms McMillan, is there anything else that       
EXHIBIT #4-40 COMPLAINT LETTER TO BUNDABERG BASE HOSPITAL (QLD.9999.0022.1302)
 
EXHIBIT #4-25 STATEMENT OF JAYNE ANN LEHMANN DATED 13/02/2020 (STAT.0060.0001.0001)
EXHIBIT #4-25.1 PHOTOGRAPHS OF SARAH LEHMANN (IND.0014.0001.0015)
EXHIBIT #4-25.2 LOW LITERACY RESOURCE (IND.0014.0001.0014)
EXHIBIT #4-25.3 HOSPITAL PASSPORT FOR SARAH LEHMANN DATED 18/05/2018 (IND.0014.0001.0001)

MS EASTMAN:   Ms McMillan’s       
COMMISSIONER SACKVILLE:   She’s not there.  All right.  In that case, there won’t be anything more from Ms McMillan.  All right.  Thank you very much.  We will adjourn until 10 o’clock tomorrow.  Thank you, Ms Eastman.
MS EASTMAN:   Thank you.

MATTER ADJOURNED at 4.31 pm UNTIL THURSDAY, 27 FEBRUARY 2020