Public hearing 4: Health, Sydney - Day 2

COMMISSIONER SACKVILLE:   Good morning, everybody.  Today, as on each day, we wish first to acknowledge and pay our respects to the traditional custodians of the land on which we are meeting today, the Wangal people.  We also pay our respects to First Nations elders past, present and emerging and to any First Nations People who are here present today.  I will now take – we will now take any appearances that have not already been made.  Is there anybody who wishes to announce an appearance?  Yes.

MR B. FOGARTY:   May it please the Commission, my name is Fogarty, F-o-g-a-r-t-y.  I seek leave to appear for Mrs Rachel Browne.

COMMISSIONER SACKVILLE:   Yes, thank you, Mr Fogarty.  I think that leave has already been granted.

MR FOGARTY:   May it please.

COMMISSIONER SACKVILLE:   Thank you very much.  Yes, Ms Eastman.

MS EASTMAN:   Commissioners, we start the hearing this morning by perhaps giving a little overview to the Commissioners and those in the hearing room and those watching live feed.  The evidence that will be heard today will be distressing.  It will involve the death of a child and it will involve some very sensitive information.

So I want to say this at the outset so that if any time anybody has any distress or concern, to be aware and alert to those issues, and the numbers that I provided yesterday are available to contact the Royal Commission or any of the counselling services.  So we have prepared a little note which may go up on the screen now of some of the relevant numbers.  And we will repeat those numbers if needs be during the course of the day.

COMMISSIONER SACKVILLE:   Thank you.

MS EASTMAN:   The first witness this morning is Rachel Browne.

COMMISSIONER SACKVILLE:   If Ms Browne would be good enough to come forward.  Thank you very much.  Please do sit down.

<RACHEL BROWNE, SWORN                                                                                                                    [10.05 am]

<EXAMINATION BY MS EASTMAN

COMMISSIONER SACKVILLE:   Thank you very much.

MS BROWNE:   Thank you.

COMMISSIONER SACKVILLE:   Ms Eastman will now ask you some questions.

MS BROWNE:   Thank you.

MS EASTMAN:   Good morning.  You’re Rachel Browne.

MS BROWNE:   Yes, I am.

MS EASTMAN:   And I’m going to deal with some formalities first.  So can we confirm that you have prepared a statement for the Royal Commission?

MS BROWNE:   Yes.

MS EASTMAN:   And have you got a copy of the statement with you?

MS BROWNE:   I – I do.

MS EASTMAN:   And are there any changes or corrections to that statement?

MS BROWNE:   No.

MS EASTMAN:   And the contents are true and correct to the best of your knowledge and belief?

MS BROWNE:   Yes, they are.

MS EASTMAN:   Right.  If the Commission pleases, a copy of the statement can be found at part A of the tender bundle behind tab 16, and there are some documents that accompany the statement which are found behind tab 17 through to 20.  And I will deal with the formal tender of those documents and marking the exhibit at the end of Mrs Browne’s evidence.  Are you ready?  So the focus of your evidence today is going to be on your second son, Finlay.

MS BROWNE:   Yes.

MS EASTMAN:   You wanted to be his voice in the Royal Commission.

MS BROWNE:   That’s correct.

MS EASTMAN:   And you want to tell the Royal Commission about the circumstances of his death ‑ ‑ ‑

MS BROWNE:   Yes, I do.

MS EASTMAN:   ‑ ‑ ‑ on 10 December 2016.

MS BROWNE:   Correct.

MS EASTMAN:   But you also want to talk about his life ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ the person who he was ‑ ‑ ‑

MS BROWNE:   That’s right.

MS EASTMAN:   ‑ ‑ ‑ and also the various interactions you’ve had with the health system in New South Wales ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ over a period of time.

MS BROWNE:   That’s correct.

MS EASTMAN:   And in giving the evidence today, you understand that the Royal Commission doesn’t step in the place of a Coroner.

MS BROWNE:   I do.

MS EASTMAN:   And that you understand that the evidence that you give to this Royal Commission will not be used by the Royal Commission to make findings of the kind that a Coroner would make.

MS BROWNE:   I most certainly do.

MS EASTMAN:   But the purpose in sharing your experience and Finlay’s experience is to provide a perspective on the way in which you’ve navigated the health system.

MS BROWNE:   Yes.

MS EASTMAN:   And you want to share the issues that arose for you and your family during that process.

MS BROWNE:   Yes.

MS EASTMAN:   And you want to share with the Royal Commission some of the things that you’ve learnt and suggestions on how things might be a bit better.

MS BROWNE:   Correct.

MS EASTMAN:   All right.  Now, can I check that you’ve got a glass of water there?

MS BROWNE:   I have.

MS EASTMAN:   And if at any stage you want to stop or have a rest, please let me know.

MS BROWNE:   Thank you.

MS EASTMAN:   All right.  So can we start with you before we talk about Finlay.  So you are a registered nurse.

MS BROWNE:   I am.

MS EASTMAN:   How long have you been a registered nurse?

MS BROWNE:   A long time.  Since 1997.

MS EASTMAN:   All right.  And ‑ ‑ ‑

MS BROWNE:   1996, actually.

MS EASTMAN:   1996.

MS BROWNE:   Yes.

MS EASTMAN:   So where did you do your nursing training?

MS BROWNE:   So I went to university at CSU in Bathurst and ‑ ‑ ‑

COMMISSIONER SACKVILLE:   CSU is Charles Sturt University.

MS BROWNE:   Charles Sturt, sorry, yes.  During my final year of nursing I worked as an assistant in nursing in a residential aged care facility in Bathurst.  When I graduated, I went and worked in Burke, and I worked in Burke for an aged – aged and disabled care.  So I worked in the community and then went back to Narromine and worked at Narromine Hospital for six months and returned to Bathurst Base Hospital.

MS EASTMAN:   Now, just reflecting back on your training, which you said is a number of years ago, during the course of your training, did you have any training in relation to disability and, in particular, cognitive or intellectual disability?

MS BROWNE:   No.

MS EASTMAN:   None at all?

MS BROWNE:   Not that I can recall, no.

MS EASTMAN:   And during the course of your time working as a nurse, did you have any occasions where any of your patients had cognitive/intellectual disability?

MS BROWNE:   My word I did.  So when I went to Burke to work as a community nurse working as an age and disability care nurse, a community nurse, I worked with some clients who did, in fact, have disability and were cared for by their parents at home.

MS EASTMAN:   All right.  And so I think you’re aware that the Royal Commission is hearing evidence this week from people whose family members or people having experiences in the health system, but from your perspective on the other side as involved in the health system and looking after patients and providing treatment and care, what perspectives do you have standing on that side?

MS BROWNE:   There’s a chasm lacking in knowledge in the preparation that’s done in terms of being at university and equipping you to go on then post-university and work in health and deal with the complexities of different people, marginalised people.  It’s a bit of a one-size-fits-all, I guess.  And as you traverse through your career, you sort of – you go on a journey as to what interests you and what field you might work in, and you might have more education – it’s mainly self-directed, really – about learning about these things.

I went on to work as a rehabilitation nurse, and I think, for me, we certainly had a greater understanding about the diverse needs of our patients, including people with acquired brain injury, people who had had a stroke, people who were not only culturally and linguistically diverse, but from marginalised areas and families.  And the beauty of rehabilitation nursing is that we had time, we generally had those patients for longer than an acute care stay.  So sometimes you might have them for three months, six months, or several weeks.  You’d develop a rapport with them.  You were part of enabling them to do things for themselves and recover their independence as much as possible, which is basically the ethos of a rehabilitation nurse.

Fortunately, I worked for a physician who was a wonderful lady and she said that in the silos of health not a lot of people understand what it truly is to advocate for a person, and that people – all medical nursing staff should rotate perhaps through rehabilitation at some time in their career.

MS EASTMAN:   All right.  So the last formal nursing role that you held was the clinical nurse educator in rehabilitation at Bathurst Hospital?

MS BROWNE:   Correct.

MS EASTMAN:   And at around the time of Finlay’s death, that was a job that you had held for a period of time, a couple of years;  is that right?

MS BROWNE:   So when I had my first child, I actually worked night shift.  So I worked permanent part-time nights.  So when my first child was born, and then Finlay was born, and my third child was born, so I stayed on night shift after I had Finlay.  And also with three little children, nursing is not very conducive to family life.  You work rotating shifts, they’re long hours, and I felt that I needed some balance and it allowed me to be there to get the kids off to school, and it allowed me to be there in the afternoon to pick them up.  And they were my priority.  But as they grew older and became more independent, I felt that I was ready and I was keen to re-engage in nursing in a – in a different way, and I secured the job of clinical nurse educator in rehabilitation.  So that was in 2015, towards the end of 2015 that I commenced that role.

MS EASTMAN:   Okay.  I now want to turn to Finlay.  So can I ask you some questions about Finlay?

MS BROWNE:   Yes.

MS EASTMAN:   I think you say in your statement that he was born on 15 July 2000.

MS BROWNE:   Correct.

MS EASTMAN:   And you say that he came into the world very quickly.

MS BROWNE:   He did.

MS EASTMAN:   And in terms of his birth, he was born at Bathurst Hospital?

MS BROWNE:   He was.

MS EASTMAN:   And if one reads your statement, you have a very clear recollection of the circumstances of his birth and the immediate aftermath?

MS BROWNE:   I most certainly do.

MS EASTMAN:   So I want to ask you about that in a moment.  But before we get to what happened shortly after Finlay’s birth, can you tell us a little bit about the boy that he was and what he meant to you.  And I know you’ve set this out in your statement, and I know you have a photo.  And if you would like to show the Royal Commission a copy of the photo, we can put that up.

MS BROWNE:   Yes.

MS EASTMAN:   But you let me know at what time you would like that to happen.

MS BROWNE:   I’m happy for you to put it up now.

MS EASTMAN:   So we will put the photo of Finlay up.  And this is because you want the Royal Commissioners to understand that this is Finlay’s story rather than you just putting it from the perspective of his mum;  is that right?

MS BROWNE:   Correct.  I’m just the custodian of his story.  He’s not here, unfortunately, to tell his story.  So I hope I do him the justice of adequately telling his story.

MS EASTMAN:   All right.  And so in your statement – and, Commissioners, these are matters that Mrs Browne has dealt with from paragraph 11 through to paragraph 17.  Do you want to say a little bit about Finlay and who he was as a boy, and how he was as a member of your family?

MS BROWNE:   So Fin, when he was born, I found out the diagnosis postnatally.  And my husband was ecstatic because he had another son.  And he was just a beautiful-looking baby.  He had very blonde hair.  He just had a lovely face.  And he was a relatively easy baby.  He just fitted in with our life.  You couldn’t ask for a better baby.  The diagnosis, of course, was a shock, but it didn’t define him.  It didn’t define who he was certainly in our family.  He was loved by his elder brother, and later joined by his younger sister three years later.

He was the better version of us.  He was funny, incredibly funny.  Even when he was unwell, he was funny.  If you knew Finlay and he liked you, you had a friend for life.  If he didn’t like you, you would never win him over.  He didn’t suffer fools.  He loved his mates.  He loved his teachers.  He loved his school.  In that picture, he’s in his school uniform, Carenne School in Bathurst, which he attended from four and a half until his death.  And he used to say when he had that uniform on, Carenne School, he was so proud of his uniform.

MS EASTMAN:   And that’s the same school as his brother and sister?

MS BROWNE:   No.  So Finlay – all my children went to different schools, based on what suited them.

MS EASTMAN:   And what suited ‑ ‑ ‑

MS BROWNE:   And Finlay, early on when we were exploring the option of schooling – when he was at preschool he went to a fantastic preschool, West Bathurst Preschool in Bathurst.  So inclusive.  Learning was about play.  And I realised that for Finlay, he needed suitably qualified people to assist him in his journey through life and to help with his development.  So Carenne School is a specialist education centre for children from pre-preschool to year 12.  And they were his family.  They were more than a school.

MS EASTMAN:   And what about other things?  I think you say Finlay loved music.

MS BROWNE:   He ‑ ‑ ‑

MS EASTMAN:   And he was in the ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ school eisteddfod.

MS BROWNE:   Well, he was in the School Spectacular.  So this young man, who didn’t like change, who didn’t like things that were out of the norm in 2015, was part of a group of four children from Carenne School that appeared at the School Spectacular in Sydney, the last one that was held at the entertainment centre.  And he accompanied some teachers and – and four other children.  And they stayed in Sydney for four days, and he performed – I think they did four performances in all, and it was unbelievable.  No one knew, hand on heart, how Finlay would go with this.  No one knew how he would cope with the rigour of practice, with being in unfamiliar surroundings, with performing in front of an audience that was so large.

MS EASTMAN:   So how did he go?

MS BROWNE:   Amazing.

MS EASTMAN:   It’s the case, isn’t it, that his passing remains a source of very deep and profound grief for you and your family, and that you still suffer the loss of him in your family each and every day?

MS BROWNE:   Definitely.

MS EASTMAN:   And for you, each and every minute;  is that right?

MS BROWNE:   Definitely.

MS EASTMAN:   So it’s going to be difficult to give the evidence.  You wanted the Royal Commissioners to know that.

MS BROWNE:   Yes.

MS EASTMAN:   But you feel that this is an opportunity to be able to be Finlay’s voice.

MS BROWNE:   Most definitely.

MS EASTMAN:   All right.  So can we now move to the issues that you wanted to talk about, which is to take Finlay back into a health model.  And I want to start by understanding a little bit of his medical history and his conditions.

MS BROWNE:   Sure.

MS EASTMAN:   So in your statement, I think you say – and this is at paragraph 31 – that he wasn’t a sickly child throughout his life.

MS BROWNE:   No.

MS EASTMAN:   And I think you say in paragraph 54 that he thrived in his early years.

MS BROWNE:   He did, yes.

MS EASTMAN:   And so you wanted to put that as a starting point, that when we start now to look at particular conditions and particular presentations at hospital that from your perspective, this is looking at some quite narrow issues rather than it being indicative of Finlay’s whole health history and life journey;  is that correct?

MS BROWNE:   That’s right, yes.

MS EASTMAN:   Okay.  So let’s come back to Finlay’s very quick birth, as you say, in paragraph 18.  And if you’ve got that open, we might just deal with the matters that are set out in this part of your statement.  So, Mrs Browne, if you want to read any part rather than answer a question, just let me know.

MS BROWNE:   I’m fine, thank you.

MS EASTMAN:   So at paragraph 19, you say that you had an intuition that Finlay had Down syndrome.

MS BROWNE:   Well, not necessarily that he had Down syndrome but in utero, that there was something not right with the pregnancy.  Having had a previous pregnancy, as the weeks went on, Finlay in utero didn’t move the same.  In fact, my husband and I referred to him as “the wriggler” because the movements in utero were not the same.  And I did address this, but I was told, you know, not to worry about it, that everything was fine.

MS EASTMAN:   So prenatal check-ups and the like.  And I think you say in paragraph 19 that you did have a prenatal screening.

MS BROWNE:   So what that is about is most women at 18 weeks, they do do, to my knowledge a trans-nuchal screening which looks at the thickening around the neck to see if you warrant further, more invasive screening.  So it’s not a determinant necessarily, but it is a precursor, I believe, to having further screening which would be chorionic villi sampling or amniocentesis.

MS EASTMAN:   And that initial screening didn’t indicate any particular indication ‑ ‑ ‑

MS BROWNE:   No.

MS EASTMAN:   ‑ ‑ ‑ that Finlay may have Down syndrome.

MS BROWNE:   No.

MS EASTMAN:   So when, immediately after his birth – and you’ve set this out in your statement, that you remained in the labour ward for a period of time ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ and that the doctor who came to attend to you said to you that he thought that there was something wrong with Finlay.

MS BROWNE:   Correct.

MS EASTMAN:   Is that the sort of words that were used?

MS BROWNE:   Yes.

MS EASTMAN:   All right.  And do you remember what you said in response to that?

MS BROWNE:   I said, “I think he has Down syndrome”, because as soon as he was born and I saw him, I knew that he had Down syndrome.  But nobody was saying it.  So I thought, “If no one’s saying it, it mustn’t be happening.”

MS EASTMAN:   And are we right in understanding what you’ve set out in paragraph 23 of your statement that the medical response at this very early point in time – so this is within a very short period after his birth – was that he would need to have chromosomal testing?

MS BROWNE:   Correct.

MS EASTMAN:   Now, as a nurse you understood what chromosomal testing was.

MS BROWNE:   Yes.

MS EASTMAN:   And what, at that point in time, did you understand – and did you have to agree for chromosomal testing to occur?

MS BROWNE:   Yes.  Yes.  So Finlay was born on the weekend.  So we had to wait for blood to be sent to Sydney on the Monday.  The paediatrician who was on call at the time came and spoke to me, and he would later become Finlay’s paediatrician and remained his paediatrician until his death, and explained what would happen and that we would have to wait for the pathology to be sent and for the results to be formally reported on and come back to us.

MS EASTMAN:   So what assistance did you have – and notwithstanding your training as a nurse and understanding the testing, what assistance did you have or what information was provided to you around this point in time in terms of the nature of the testing and what the consequences would be depending on what the results came back?

MS BROWNE:   Very little.  I think through all of this, because I am a registered nurse, that people sometimes forget that first and foremost I’m a mother, like any other mother.  And sometimes I think there perhaps is an unspokenness that you would understand because you’re health literate.  So perhaps these conversations aren’t had – had in depth.  But generally, what I was hearing was negative and that the things that Finlay wouldn’t be able to do, that – initially, I did have difficulty breastfeeding him, and it was spoken that I probably wouldn’t be able to breastfeed him because of his low tone again, and the difficulties with their facial features.  I might add that I went on to breastfeed Finlay successfully for 18 months.

MS EASTMAN:   So can I bring you back a little bit to just this immediate period after Finlay’s birth, and then back to the advice that you would need to have some chromosomal testing.  Is it right to understand from your statement ‑ ‑ ‑

MS BROWNE:   So when – when I was still in the labour ward, before I was even seen by the paediatrician, I had been kept in the labour ward even though I delivered Finlay at 10 to 2 in the morning, until the next day because I had retained a placenta which I later passed and there was some conversation about sending me to theatre or not.  And I had had a minor tear that had to be sutured.  So when the doctor who was suturing me said that he felt there was something wrong with Finlay, and I had commented that I knew, I had felt that he had Down syndrome, he said to me that it was okay because I was young and I could have more children.

MS EASTMAN:   And you remember that very clearly, I think, you’ve said;  is that right?

MS BROWNE:   I remember.  I think the thing about being a mother and about giving birth is that you remember every moment.  You remember everything that is said to you.  And it’s there.  It stays with you.  And something like that especially has stayed with me.

MS EASTMAN:   I think you say, sadly, this really seemed to be ‑ ‑ ‑

MS BROWNE:   It set ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ something that set the tone ‑ ‑ ‑

MS BROWNE:   It did.

MS EASTMAN:   ‑ ‑ ‑ for the rest of your and Finlay’s experience.

MS BROWNE:   It did, unfortunately.  I think with a child with a disability, especially a syndrome that they can name at birth, that they want to collectively put together the labels that are associated with that child, and somehow give you the trajectory of their life in those coming days.  And I would say that with the birth of any other child, you do not receive a blueprint about what their life is going to be like, and nor can we ever know.  And I certainly didn’t have that experience with my other two children.  With Finlay, it was more like that baby had been lost to us.

MS EASTMAN:   The results of the test, you record in paragraph 24 of the statement came back to confirm the diagnosis of Down syndrome;  is that right?

MS BROWNE:   Yes.

MS EASTMAN:   But ‑ ‑ ‑

MS BROWNE:   Trisomy 21, yes.

MS EASTMAN:   But he didn’t have congenital heart abnormality.

MS BROWNE:   No, none was detected at that time.

MS EASTMAN:   And otherwise, that initial testing indicated he was, as you say there, robust and strong.

MS BROWNE:   He was.

MS EASTMAN:   All right.  So ‑ ‑ ‑

MS BROWNE:   Can I just say Finlay, the name chosen for Finlay means fair-haired warrior.  And I think Finlay every day lived up to his namesake.

MS EASTMAN:   All right.  So what I want to ask you now is a little bit about the different health providers and specialists that were part of Finlay’s life.  So this is jumping forward a little bit.  So can I ask you to turn to…

MS BROWNE:   He was. 

MS EASTMAN:   All right.

MS BROWNE:   Can I just say Finlay – the name chosen for Finlay – means fair haired warrior.  And I think Finlay, every day, lived up to his namesake.

MS EASTMAN:   All right.  So what I want to ask you now is a little bit about the different health providers and specialists that were part of Finlay’s life.  So this is jumping forward a little bit.  So can I ask you to turn to paragraph 48.  And when Finlay was a toddler, around three years old, is it right that you set out to find a team of clinicians that would help Finlay, in terms of working with him on a range of

health issues that might arise, either on a routine basis, in an acute setting and also to address preventative health through the course of Finlay’s life?

MS BROWNE:   Correct.

MS EASTMAN:   Is that a fair understanding of what you say there?

MS BROWNE:   Yes.

MS EASTMAN:   And so when you talk about these specialists, is it the case that the approach you decided to take was to not wait until something arose, but to start to investigate these issues at an earlier point in time to be able to manage ‑ ‑ ‑

MS BROWNE:   Exactly.

MS EASTMAN:   ‑ ‑ ‑ any health issues that might arise during the course of Finlay’s life?

MS BROWNE:   We tried – we tried to be proactive as much as we could with the information that we had to give Finlay the best outcome.

MS EASTMAN:   The approach that you took, that you set out in paragraph 48, did that come about because of advice from your paediatrician, GP, or somebody in particular?

MS BROWNE:   So, initially, as set out in paragraph 48, Finlay required, you know, ear, nose and throat intervention.  And, I guess, at that time we had had some advice from the paediatrician and he was quite happy to be directed by me.  There – there was, I guess, some advocacy from him in – in where we needed to go.  And I guess I was reliant on the paediatrician, having not been a mother to a child with a disability that may have, you know, different health issues crop up, as to finding out the right people ‑ ‑ ‑

MS EASTMAN:   To go to.

MS BROWNE:   ‑ ‑ ‑ to go to.

MS EASTMAN:   So if I – having worked through your statement – and just tell me if I’ve collected everybody – in terms of various health professionals during the course of Finlay’s life, outside an immediate acute hospital setting, you had assistance with a child health nurse?

MS BROWNE:   Correct.

MS EASTMAN:   A general practitioner?

MS BROWNE:   Correct.

MS EASTMAN:   A paediatrician?

MS BROWNE:   Yes.

MS EASTMAN:   An ear, nose and throat, so an ENT specialist?

MS BROWNE:   Correct.

MS EASTMAN:   An ophthalmologist?

MS BROWNE:   Correct.

MS EASTMAN:   And a cardiologist?

MS BROWNE:   Yes.

MS EASTMAN:   And so the engagement with each of these different areas occurred at different points in time over Finlay’s life;  is that right?

MS BROWNE:   So, most often, those people, apart from the cardiologist, were seen annually.  The cardiologist was seen every three years, providing everything was going all right.

MS EASTMAN:   And in terms of that list, how many were based in Bathurst and how many involved travelling somewhere else?

MS BROWNE:   So, I guess, the conduit for our health care was led by the paediatrician, who is in Bathurst.  We did have a general practitioner in Bathurst, but often difficult to get into because I didn’t take my kids to the doctor until they were sick.  So I didn’t have a standing appointment.  So, quite often, I would see someone else at the practice.  Every other member in that team listed was in Sydney.

MS EASTMAN:   Right.  So in terms of continuity of care for, perhaps if we call it the primary health aspects, which might be engagement with a child health nurse and GP, how would you describe that continuity of care for Finlay?

MS BROWNE:   I would say, possibly, there was a lack of understanding of the complexities of having a child with a chromosomal abnormality.  And I think early on, in my experience and certainly seeing the early child health nurses, Finlay had constipation, as did my eldest child, but in Finlay it was more significant.  He seemed to have a lot of abdominal pain.  And I would discuss this with the child health nurse and I’d brought it to the attention of GPs as well.  And I recall that I was told not to worry about it, it was largely due to Finlay’s low tone which, in children with Down syndrome is apparent, and this was causing his subsequent bowel issues.

MS EASTMAN:   Okay.  In terms of the information that was shared between the various specialists that we’ve just discussed, how did that come about?  Was that

dependent on you or was there a system in terms of sharing information about Finlay’s health generally?

MS BROWNE:   So, a lot of the time, my paediatrician would write the annual referral for the specialists that we were needing to see.  So that referral would then go to the specialist.  And I would have assumed that information go back to the specialist.  But sometimes ‑ ‑ ‑

MS EASTMAN:   When you say you assume ‑ ‑ ‑

MS BROWNE:   ‑ ‑ ‑ I assumed, because you think that that’s what’s happening.  You think that there is a connection between all these people who are having involvement with your child, that there would be some communication happening.

MS EASTMAN:   Do you know whether that did occur?

MS BROWNE:   I think sometimes there were gaps.  I know that my paediatrician became very astute and if, after I’d seen him for an annual review, the information provided to the GP, he would also send me a copy of that letter.  But in terms of if we’d seen a general practitioner several times throughout the year, that I believe that information may not have been fed back to the paediatrician or other specialists, you know, pertaining to that area.

MS EASTMAN:   All right.  So I want to ask you now about a few of the issues that arose for Finlay that didn’t necessarily result in the acute situation of presentation to Emergency Departments, and I will come back to that later.  So I’ve done my best to try to follow this through, based on Finlay’s age at different points in time, but if I’ve got this out of order, please let me know.  So the first was at around 18 months, you noticed an issue in relation to Finlay’s hearing.  And you deal with this in paragraph 55 of the statement.  So if you just turn that up.  I think you say that you observed that there were some hearing problems early on.  So can I just ask you there, did the issue of hearing come based on your observations or was it picked up in any of the routine check-ups or tests for him in that first 18 months?

MS BROWNE:   No.  So, unfortunately, that was pre-postnatal hearing checks that I believe are now done, but Finlay – and, again, it was based on my observation – he was a very good sleeper and I could turn the house upside-down, vacuum, and he would be unflinching.  He would sleep through it.  And I knew, from a previous child, that we lived in a state of quiet so as not to wake him, but Finlay was not, you know, responding to normal large sound or startling as my other child would.

MS EASTMAN:   So in paragraph 55, you say there he was aided from 18 months.

MS BROWNE:   Yes.

MS EASTMAN:   But by the age of three he was throwing the aids out into the toilet.  Can I just, before we get to the tonsils and the adenoids, just focus on the hearing

issue.  Can you tell the Royal Commission, in terms of that process of him receiving aids for his hearing, how did that come about and how was his disability taken into account or not in the context of that process?

MS BROWNE:   So Finlay, the first time he had insertion of grommets was at the age of one.  And, subsequently, we were under the care of an Ear, Nose and Throat specialist who was based out of the Central West.  And, Finlay, when he was three, required tonsils and an adenoidectomy and, I think, reinsertion of grommets.  And when we went to have that surgery done, the anaesthetist repeatedly called Fin by the wrong name.

MS EASTMAN:   So can I pause there?  So this is something that you’ve also addressed in your statement.

MS BROWNE:   Yes.

MS EASTMAN:   So this is paragraph – to assist the Royal Commissioners – that’s set out – this issue about the tonsils and the adenoids, that was an operation in Bathurst Hospital in 2003?

MS BROWNE:   Yes, correct.

MS EASTMAN:   And then you’ve set out in paragraph 34 some of the issues that arose in relation to that surgery.

MS BROWNE:   Yes.

MS EASTMAN:   So if you want to keep an eye on a little bit of what’s in 55, but if you need to refer to paragraph 34, let me know.

MS BROWNE:   So with – with the hearing aids, so we had seen, following grommet insertion, we had been seeing audiologists.  He, at that time, had been aided and we were, I think, receiving assistance from the Shepherd Centre to help with his speech.  We had started signing with Finlay, but Finlay was often using his own signing, which we couldn’t understand.  He would ad lib a fair bit.  So we wanted him to learn to use his residual hearing and speech.  But, apart from his hearing loss, by the age of four, Finlay was demonstrating, I guess, a reluctance to change things and his day became very regimented and routine.  He spent a lot of time – he was very much into Thomas the Tank Engine and he would line them up all over the house.  And there were times we had a ceiling fan, he would lie on his back and watch the fan circulate. 

All of this behaviour seemed to be not – not quite on par with how Finlay should be developing.  And he also, at this time, started to become quite restrictive in his diet.  He had gone from being a child that would eat anything.  And it became apparent that certain textures and things in his mouth – the feel – or things in his mouth, he would be repulsed by and would not eat them.  He also had a dislike for loud noises. 

He hated having his teeth cleaned, his hair brushed, and to take him to have a haircut became – became – it was dangerous, at best.  So, when he was five, and based on my observations – and he’d just started at school full-time – I had an annual review with the paediatrician, and I also had had some input from his teacher at the time, and I felt that Finlay had autism and had demonstrated a lot of things that possibly were in line with a diagnosis of autism, but ‑ ‑ ‑

MS EASTMAN:   Can I ask you just to pause there?  Is it the case that you went through a process of observing him on the hearing concerns?

MS BROWNE:   Yes.

MS EASTMAN:   Then followed by ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ the surgery in relation to the tonsils and adenoids.  And then, as he got older and started school, you started observing other aspects of his behaviour.

MS BROWNE:   Correct.

MS EASTMAN:   And so it was a combination of those things ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ which then led to you having that conversation with a paediatrician.  And I think you’ve set this out at paragraphs 56 and 57.

MS BROWNE:   Yes.

MS EASTMAN:   And what was it about the starting of school that caused you, perhaps, to look at things slightly differently or, at least, in your mind, even raise that idea that maybe there might be something else, autism, was happening?

MS BROWNE:   I think with the starting of school and, certainly, for me, who had not really interacted with anyone with an intellectual disability or, more definitively, with Down syndrome, I knew that meeting milestones were slightly slower, but he did get there in the end.  But, I guess, the things that we were observing that weren’t as a result of his hearing deficits and were becoming more and more problematic to him, just navigating his way through a day, were reinforced when we got to school.  So this, you know, was observed not only by myself, but by people who were in the field of teaching children with disability and recognised this.

MS EASTMAN:   All right.  Now, just coming to how you went about the process of having the formal diagnosis, which you’ve set out in paragraph 57, are we right in

understanding that this process took a number of years, maybe three years;  is that right?

MS BROWNE:   Yes.  Around four years.

MS EASTMAN:   Four years.  So, just briefly, what was that process and – and what did it mean in terms of Finlay’s engagement with paediatrician or others during this period of time?

MS BROWNE:   So, really, when I first mentioned it to our paediatrician, when Fin was five, it was dismissed.  He felt that, you know, given that Finlay had Down syndrome, it wasn’t also, I guess, apparent or – or mean that he should have autism as well or another label, if you like, attached to him.  And there are some processing issues that children with Down syndrome do experience.  So in those five years of accessing early intervention, and so forth, we just went along with the belief that it wasn’t that, that sort of underlying belief when we, living that, knew, and it became more and more apparent that there was something happening.  And it wasn’t until Finlay was nine, you know, and we were seeing his paediatrician on a more frequent basis – Finlay had some other issues at that time – and I guess the – for Finlay, the paediatrician was seeing him more often and it was more obvious that these behaviours were continuing and there – that the paediatrician concluded, and apologised to me and said that he believed, in fact, that Finlay did have autism.

MS EASTMAN:   And, as you say, once you had that label or that diagnosis, what did that mean for Finlay in terms of accessing any assistance or resources?

MS BROWNE:   Well, unfortunately, it was a little too late.  If that diagnosis had been made earlier, there’s a whole range of other people that you can access through early intervention services.  And, for us, the struggle, especially in a regional area, to access allied health professionals, so speech, occupational therapy, physiotherapy, all these people that you do the rounds of, you know, to get your child to hit these milestones, to give them the best opportunities, so that they can keep up, so that they can learn, you’re left behind and so it impacts – it impacts on their daily life.

MS EASTMAN:   Can I turn, now, to another area, which is to talk about the hospital and to talk about occasions where there were emergency presentations.  So I want to turn to that issue now.  So is it right that the first presentation was that – when Finlay was 12 weeks old.

MS BROWNE:   Correct.

MS EASTMAN:   And you’ve set this out in paragraph 26 of the statement, so if you want to have a look at that.  And I think you’ve said earlier that one of the issues that arose for you after Finlay’s birth was the suggestion that you might have difficulty breastfeeding.

MS BROWNE:   Yes.

MS EASTMAN:   And are we right to understand that you decided that that was something that you wanted to do and, I think you say, with some persistence or perseverance.

MS BROWNE:   Yes.  It was important.  It was important for Finlay’s – not only for his hearing, but for his visualisation, for his speech development later on.  You know, not only from a nutritional perspective, but there were so many other things as to why it would be beneficial to breastfeed, especially a child with Down syndrome and I think, because I was told that it wouldn’t be possible, I was going to make it happen.

MS EASTMAN:   Can I just ask you this:  were there any resources available via lactation consultants or specialists about any things that you could do for both you and Finlay to make that process of starting breastfeeding easier for a child with Down syndrome?  Is there anything at all out there?

MS BROWNE:   I think the nurses did their best to help me but, again, in terms of a lactation specialist, no.  We’re in a rural area, so not really available.  I had breastfed my eldest child and – and I winged it.

MS EASTMAN:   You may not be alone there.  So – but you noticed that there were differences, I think, for feeding Finlay compared to your older son;  is that right?

MS BROWNE:   Most definitely so. 

MS EASTMAN:   Yes.  Okay.

MS BROWNE:   There were.

MS EASTMAN:   And so part of this was learning on the job, so to speak.

MS BROWNE:   Definitely.  A lot of it was learning on the job.

MS EASTMAN:   So when Finlay was 12 weeks old, as you say in paragraph 26, he wasn’t feeding properly and he was lethargic.

MS BROWNE:   Mmm.

MS EASTMAN:   You say, instinctively, something – you thought something was wrong.

MS BROWNE:   Yes.

MS EASTMAN:   So you decided to take him to the hospital.

MS BROWNE:   I did.

MS EASTMAN:   Not to general practitioner.  So what was it about the decision that Finlay’s condition at this point in time was one where you needed to access the Emergency Department?

MS BROWNE:   So the fact that Finlay had not been feeding properly and was more difficult to latch than he had previously been.  He had reduced wet nappies.  He was quite floppy, almost to the point of being quite limp and I – again, you’re reliant on intuition.  I felt that something was really wrong.  I remember I rang my husband that day, too.  He would often go, “Why are you ringing me for?  I can’t see him.  I’m not there.”  But, you know, it would be to seek that reinforcement that what I was doing and what I was observing was right, and to validate my rationalisation for taking him to the hospital, which I did.

MS EASTMAN:   All right.  So do you have a clear recollection about this first occasion of taking Finlay to the Emergency Department?

MS BROWNE:   I certainly do.

MS EASTMAN:   All right.  And you’ve set that out in paragraphs 27 through to paragraph 30 of your statement.

MS BROWNE:   Yes.

MS EASTMAN:   And I know the Royal Commissioners have read those paragraphs, so they’re aware of what you say there, but, in summary, is it the case that you didn’t receive the response that perhaps you expected?

MS BROWNE:   No, not initially.

MS EASTMAN:   And that you felt that you had to explain or advocate for Finlay that there was something wrong and he wasn’t just floppy, right?

MS BROWNE:   Correct.

MS EASTMAN:   Okay.  And what was the outcome of your advocacy and what happened to Finlay on that occasion?

MS BROWNE:   So, eventually, after having them see, actually, Finlay and not just a baby with Down syndrome, who may have low tone but was actually floppy and unwell and dehydrated, he was admitted to the paediatric ward of Bathurst Health Service.  Yes.

MS EASTMAN:   He was there for 11 days;  is that right?

MS BROWNE:   He was.

MS EASTMAN:   And there was some discussion about whether or not his condition might be better treated by sending him to Sydney;  is that right?

MS BROWNE:   Correct.

MS EASTMAN:   And so was your understanding there that was a particular serious issue that had arisen at that point in time?

MS BROWNE:   Yes.

MS EASTMAN:   And you say in paragraph 30 that you did receive some good care ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ from the nurses at the Bathurst Paediatric Ward at that time.

MS BROWNE:   I did, yes.

MS EASTMAN:   All right.  And what was it about that care which, on reflecting back all these years, that you’re able to remember that it was good care?

MS BROWNE:   So ‑ ‑ ‑

MS EASTMAN:   What was it?

MS BROWNE:   ‑ ‑ ‑ I think there was – there was a certain degree of empathy about Finlay that, as this baby, he was seen as a baby who was unwell.  And I remember one of the nurses on nightshift, because I was still wanting to breastfeed so I was expressing, and they made that happen.  I didn’t want my milk to dry up and he still wasn’t really feeding.  He had intravenous fluid going, he was on oxygen.  And they would nurse him of a night so I could grab moments of sleep.  They made it possible for me to continue breastfeeding him.  And I felt safe, I must admit.  At that time I felt safe and that they were treating Finlay, first and foremost, as a baby, not just a baby with Down syndrome.

MS EASTMAN:   Did that make a very significant difference to your experience with the hospital at this time ‑ ‑ ‑

MS BROWNE:   Definitely.

MS EASTMAN:   ‑ ‑ ‑ that they were treating him as a baby?

MS BROWNE:   Definitely, because, first and foremost, what we had wanted, as any mother does after they’ve had a baby, is to go home and get to know their baby and establish sleep and feeding, get to know their baby.  And he was still a baby.  He may have had Down syndrome, but he was a baby, first and foremost.  And I wanted the

same care to be taken about him and his health needs at this time, as you would any other baby, and it gave me confidence.  And I think, when you have confidence in the care that’s being delivered, it is so important, so important.

COMMISSIONER SACKVILLE:   Can I just ask you a question about paragraph 28.

MS BROWNE:   Yes.

COMMISSIONER SACKVILLE:   If you would just go back to that.  You said you’d had to advocate really hard for Finlay in order to get him admitted to the paediatric ward?

MS BROWNE:   To have him seen and ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Yes.

MS BROWNE:   ‑ ‑ ‑ I think, actually, to realise there was something wrong.

COMMISSIONER SACKVILLE:   How long did that take?

MS BROWNE:   We were in the Emergency Department  for several hours.  I think, again, possibly seen by a JMO who, you know, they’re a Junior Medical Officer.  They don’t have the training nor the experience of someone more senior.  And they’re not seeing the whole scene.  They’re seeing a floppy baby with Down syndrome, with a mother who is probably telling you what is wrong, and they want to tell you what they think is wrong.  And then they become an adversary instead of advocating for you.  So you’re on a different playing field.  And, eventually, in that instance, I think, again, I’ve had to grab one of the nurses and go, “There is something really wrong.”  And I remember one of the nurses saying to me, “What do you think is wrong?”  And that’s all I needed to be asked.  I think when you ask the mother, they know.  They may not be able to give you a diagnosis, but I certainly knew and I remember saying, “I think he has pneumonia.”  I think it’s so important, on face value, to listen to the parents and the people who know these children best.  Even at 12 weeks, I knew my baby.

MS EASTMAN:   There were other occasions where you had to attend the Emergency Department  between the age of three and 12.

MS BROWNE:   Yes.

MS EASTMAN:   And you’ve set this out at paragraph 32 of the statement.  So some of these occasions involved pneumonia, ear infections and, sometimes, follow-ups in relation to surgery.

MS BROWNE:   Yes.

MS EASTMAN:   So I think you give one example here, in terms of some follow-up surgery in relation to the grommets.

MS BROWNE:   Yes.

MS EASTMAN:   Is that right?  And an issue about the state of Finlay’s ear.

MS BROWNE:   So that surgery ‑ ‑ ‑

MS EASTMAN:   So do you remember that?

MS BROWNE:   ‑ ‑ ‑ had been attended in Sydney.

MS EASTMAN:   Was that in 2009?  Was that surgery when he was about nine years old?  Is that the one?  Or an earlier point in time?

MS BROWNE:   It may have been slightly earlier. 

MS EASTMAN:   Okay.

MS BROWNE:   He had had another – grommets were a common occurrence:  they were going in, they were being taken out, all of which, apart from one, were attended in Sydney hospitals.  We had a very good Ear, Nose and Throat fellow originally, who I had sought out because he specialised in treating people with Down syndrome.  He was at the end of his career when we found him and later retired, unfortunately, but his protégé filled his shoes and we went with him.  He was equally as good.  So Finlay had been in Sydney to have this surgery attended and been discharged from a Sydney hospital and come back to Bathurst.  So it was a couple of days post-surgery that this presentation happened.  So it was an Emergency presentation.

MS EASTMAN:   So this is one your husband was involved in.

MS BROWNE:   Yes.

MS EASTMAN:   Is that right?  So you weren’t there for the exchange between your husband and the ‑ ‑ ‑

MS BROWNE:   No.  So it was only based on what my husband had told me on return from this presentation.  My husband, to say the least, was quite wild about what had happened.

MS EASTMAN:   And that was – was that interpreting what you say and, based on this is what he told you, was this sense of being spoken down to as if he wouldn’t understand what was going on.

MS BROWNE:   Correct.

MS EASTMAN:   Is that a fair summary of ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ what happened?

MS BROWNE:   Yes, it’s an adequate summary, yes.

MS EASTMAN:   And there were some other experiences that you discuss in paragraph 33.  And so these are instances where you say that there would be a presentation and there would either be a decision that Finlay would not be admitted and then you would circle back to the GP.  So do you want to say anything about any of the occasions that you’ve described in paragraph 33?

MS BROWNE:   I think on that occasion – and I remember it clearly, because I had been up all night with Finlay and he had increased work of effort.  So his breathing was quite rapid.  He had an increased respiratory rate.  Again, he wasn’t taking fluids as he should, and he – he was quite unwell.  And that morning I had taken him to the GP, who had put him on a course of antibiotics.  And he had only had one course of – or the commencement, one dose of those antibiotics that day and had deteriorated over the afternoon.  So around 11 o’clock that night, I took Fin to the Emergency Department , and I had packed a bag to take with myself for him because I felt sure that Finlay was unwell enough that he would need admitting to hospital.

I feel that when I got there, when we were finally seen by the doctor who was on duty in the Emergency Department  that evening, that he took umbrage to the fact that I was packed, ready to be admitted.  And he felt that Finlay wasn’t well enough and was just a whingy child, and suggested I go home and give him more Panadol and let the antibiotics take effect and let Finlay, in essence, just get over it.  He – he handed me a discharge summary letter that was to go to my GP, which, of course, I read, and I’ve kept.

MS EASTMAN:   That caused you some distress, didn’t it?

MS BROWNE:   It did.

MS EASTMAN:   And why was that?

MS BROWNE:   Because not only there – there – it referred to Finlay as a grizzly child with Down syndrome who had poor dental hygiene, and I felt that that comment was completely irrelevant to why we were there.  And for me to make a comment like that when we were so fastidious about Finlay’s general appearance, his overall cleanliness – I was horrified.

MS EASTMAN:   Did you do anything about that at the time?

MS BROWNE:   I – I did.  I spoke to my paediatrician, because we were admitted to hospital after the fact.  My paediatrician had said that it had already been dealt with and that person would not work at the hospital in the Emergency Department  again.  I think he was a locum.

MS EASTMAN:   All right.  How did you feel having to raise it with your paediatrician?  Were you comfortable in doing that, or did it cause you concern that if you raised an issue with that ‑ ‑ ‑

MS BROWNE:   There’s a certain level of concern that you have because this is my workplace as well.  And throughout Fin’s life, you’re walking a tightrope of maintaining professionalism and advocating for your child.  So you’re wearing two hats, but my child came first.

COMMISSIONER SACKVILLE:   We have been going now for an hour.  Would you like to have a break now?  Normally, we would go till about 11.20 and have morning tea.

MS BROWNE:   That’s fine.

COMMISSIONER SACKVILLE:   Is that fine with you?  Are you sure?

MS BROWNE:   If it’s fine with everyone else, I’m happy to ‑ ‑ ‑

MS EASTMAN:   Yes, so I will just – so you know where I’m going.  I’ve got two more matters that I would like to deal with on emergency presentation.

COMMISSIONER SACKVILLE:   Okay.

MS EASTMAN:   And then I was going to suggest a break then, but we can do – we can have a break now if that’s convenient.

COMMISSIONER SACKVILLE:   No, no, whatever suits.  Are you happy to go on for a little while?

MS BROWNE:   Happy.

MS EASTMAN:   All right.  So in terms of other emergency presentations, there was an occasion where you were not in Bathurst and I assume you were in South Australia for a family holiday or for some other purpose.

MS BROWNE:   Yes.

MS EASTMAN:   But you had an occasion where you had to take Finlay to a hospital in South Australia.

MS BROWNE:   Yes.

MS EASTMAN:   And this is in paragraph 46.  And I think the observation that you make in paragraph 46 was that the experience at that emergency presentation was one of overshadowing.

MS BROWNE:   Yes.

MS EASTMAN:   Is that right?

MS BROWNE:   Correct.

MS EASTMAN:   Just explain – again, you don’t have to go into great detail, but what was the concern that allowed you to draw this conclusion, the perception of overshadowing?

MS BROWNE:   Again, the presentation was Finlay had dry retching and abdominal pain.  So I went to that Emergency Department to seek help for those symptoms.  And again, it was as if I was an overwrought mother of a child with a disability and he probably just had a gastrointestinal bug and I shouldn’t really be wasting their time at an Emergency Department which is for emergencies, I should take him home and wait it out and, you know, it was more to do with his overreaction of the symptoms and not tolerating the symptoms.

MS EASTMAN:   Then I want to ask you about, I think, one of the final times that you took Finlay to the Emergency Department before we get to the events in 2016, and this is set out in paragraph 66 of the statement.  And so towards the end of 2015, by this stage Fin’s 15 years old.

MS BROWNE:   Yes.

MS EASTMAN:   He was having abdominal pain.

MS BROWNE:   Yes.

MS EASTMAN:   And you attended the Emergency Department at Bathurst Hospital.

MS BROWNE:   Correct.

MS EASTMAN:   And you say in the statement there that you wanted more than a blood test this time.  And you say you felt that there was something significant going on with his gut.

MS BROWNE:   Correct.

MS EASTMAN:   That was appendicitis.

MS BROWNE:   Exactly.

MS EASTMAN:   All right.  So just briefly, what was the outcome of the presentation in December 2015?  And I know you set this out in some detail in your statement from paragraph 66 and following.  Would it be fair to say that for you, you found this a very distressing occasion?

MS BROWNE:   It was particularly distressing.  Finlay was in a great deal of pain.  You could see that he was in pain.  He was quite distressed by the pain, he kept wanting to get on to the floor off the ED bed on to his stomach, which horrified my husband, that he would want to be on the floor of an ED department where it was filthy at best.  So we were grappling with him to – to keep him on the bed.  He had had some intravenous paracetamol.  He’d had fluids.  And he was very unsettled, possibly until around sometime after 1 o’clock in the morning.  So we struggled to keep him on the bed.  He was examined by the registrar, who couldn’t really see anything wrong, didn’t feel that that picture would tell you that there was something wrong.  I questioned that I felt there was something significant wrong, that maybe he had appendicitis or something.  He had – pathology attended at that time, and I was told that the pathology didn’t demonstrate that Finlay did, in fact, have appendicitis.

My husband was getting quite frustrated.  So a lot of the time when we went to the Emergency Department  for someone who doesn’t have health literacy and sees this lack of inactivity or urgency, it’s quite distressing when you have a child in pain, and I’m trying to say to my husband that, “We don’t know what else is going on, there could be someone in resus, you know, you just – we have to be patient.”  And we were discharged at 3 o’clock in the morning with no obvious reason, no definitive diagnosis, no plan, simply if it persisted or we were concerned, to return to the Emergency Department  or seek the assistance of our general practitioner.

MS EASTMAN:   What impact did this event have on Fin himself?

MS BROWNE:   So, as with every unplanned presentation to the Emergency Department , it was a source of great distress for Finlay, notwithstanding why we were there for the first instance.  Quite often, you know, in an Emergency Department , invasive procedures are carried out.  Finlay had a reluctance to go to hospital.  It was often an effort to coerce him or drag him into the car at times to take him to hospital and then get him out at the other end.  And all – all these presentations had a cumulative effect on his feeling of being comfortable and safe in an Emergency Department .

MS EASTMAN:   If that’s a convenient time to have a break then then, and then we will come back and we’ve got a few other matters that we need to go through, if that’s appropriate.

COMMISSIONER SACKVILLE:   Yes.  So shall we break for about 20 minutes?

MS EASTMAN:   Yes, thank you.

COMMISSIONER SACKVILLE:   We will come back – it’s now just after 10 past.  We will come back just after half past 11.

ADJOURNED                                                                                                                    [11.11 am]

RESUMED                                                                                                                    [11.35 am]

COMMISSIONER SACKVILLE:   Thank you, Ms Browne.  Yes, Ms Eastman.

MS EASTMAN:   Thank you.  Thank you, Commissioners.  So just before we had the break, we had been dealing with a number of occasions where there had been presentations to the Emergency Department s.  But it’s the case, isn’t it, that throughout Finlay’s life there were other occasions that he had to go to hospital for pathology, and I think you talk in the statement about blood tests ‑ ‑ ‑

MS BROWNE:   Correct.

MS EASTMAN:   ‑ ‑ ‑ and injections?

MS BROWNE:   Correct.

MS EASTMAN:   So in the statement at paragraph 35, you talk about blood tests, and I will come back to that.  And also at paragraph 60, you talk about having to attend the hospital for regular injections in relation to B12.  All right.  So just tell me, how was Finlay with blood tests and injections?

MS BROWNE:   So, firstly, because of Finlay’s diagnosis of Down syndrome, he required an annual blood test.  This is because having the chromosomal abnormality Trisomy 21 made it, I guess, more of a factor that he could have thyroid problems, coeliac disease, childhood leukaemia.  So these things were tested as per part of the course on an annual basis so they could screen for them and treat him adequately, yes.  So from the first year of his life, these invasive blood tests were carried out.  And for any one of us, an invasive procedure like that is quite traumatic, but to have it done knowing that you’re going to have it done at least annually, sometimes several times a year, is quite traumatic.

MS EASTMAN:   Right.  So in your statement at paragraph 35, you say at times these tests were quite brutal, and that as he got older and bigger they became more difficult and challenging.

MS BROWNE:   Yes.

MS EASTMAN:   And you say he was scared of needles.

MS BROWNE:   Yes.

MS EASTMAN:   But he was also scared of the way – is this right – the way in which ‑ ‑ ‑

MS BROWNE:   So it was the whole process.  It was the whole environment.  So he was fearful of the environment.  He was fearful of – from the moment – he knew where we were, he knew what we were there for.  And then it wasn’t simply a matter of coming in and sitting down so they can put a tourniquet on your arm, hold your arm out, do the blood test, look away.  It became an exercise in corralling him so that other people were safe and so the blood tests could be attended, because he was so fearful.

MS EASTMAN:   Did you have a particular way of preparing him to, first of all, attend the hospital and prepare him in terms of what would be involved in taking his blood or ‑ ‑ ‑

MS BROWNE:   So ‑ ‑ ‑

MS EASTMAN:   And the injections for the B12.  How did you do that?

MS BROWNE:   Again, we winged it.

MS EASTMAN:   Right.  Okay.

MS BROWNE:   Partly, I guess, because of my own experience in health and that different people, you know, especially with chronic illness, who have to have routine bloods, it is quite invasive.  It can be traumatic.  If it’s not managed well, the trauma of that is cumulative and people can develop a phobia to having these tests done.  So over the years, it was just a given that that’s what would happen.  And as it became more difficult, we would have discussions, I would do a social story, I would show him a picture of the hospital and try and prep him a couple of days before, but this sometimes would add to the trauma and the build-up.  Sometimes I would take him through different doors in the hospital to try and trick him about where we were actually going, which, needless to say, didn’t work.  And because Finlay had a super human strength anyway, and when he became – as he became older, it became more difficult, and I had to have my husband assist in – in the management of these annual blood tests because I was scared that not only he would get hurt but he may inadvertently and not purposefully injure someone else.

So when he was around nine or 10, I think, and he was diagnosed with a critically low vitamin B12 deficiency, he had to have regular intramuscular injections which occurred at the hospital in a different department, and I could get Fin into the hospital and he would go so far as the waiting room for this department, and that was as far as we would get.  And I would take his iPad with him as a distraction.  And I asked the nursing staff if they would oblige and if it was of no offence to anyone in the waiting room if they administered the intramuscular injections to him in the

waiting room.  That was simply a matter of him rolling up his sleeve and for it to be administered into his shoulder.  And he would often be happy enough to do that.  And he might say “ouch” afterwards or something, or it might take a bit of placating just to get him to calm down, but it was the simplest way, I felt, for everyone.

MS EASTMAN:   Right.  So in your statement when you talk about the blood tests, you also say that there were basic reasonable adjustments that would have made the difference.

MS BROWNE:   Yes.

MS EASTMAN:   And I am going to talk to you about the adjustments and other things in a moment.  But just in relation to the blood tests and that engagement, perhaps if we might call it broadly pathology ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ what adjustments did you have in mind here that you’d like to tell the Royal Commission about?

MS BROWNE:   So I think in terms of having a child that’s going to need regular ongoing annual blood tests, if we had received probably some education at the beginning about the best way to hold Finlay – it’s traumatic for the parents as well as the child, and Finlay was a bit of an antenna for anyone else’s emotions too.  So as much as you would try and be relaxed and calm about the situation, he would pick up on your cues.  He was very adept at reading other people.

But if we had learnt early on, you know, to hold him, if we’d been offered a numbing cream, perhaps, before we went to have these blood draws attended, if we’d been educated about desensitisation in terms of using a simple elastic band to put around your child’s upper arm, you know, resembling the tourniquet, not – not to cut off the circulation but so that that sensation and that sensory processing is able in that environment at home comfortably to be managed.  He would – he would learn that it’s not going to hurt, it’s comfortable, you know.  Well, that’s a lie.  It is going to hurt.  But he would be able – you know, more better placed to be calm and – and for it to be a less traumatic experience for everyone, yes.

MS EASTMAN:   All right.  So I want to turn to a different topic now, which is dental care.  And I think before we had the break you made mention of one of the medical practitioners writing a note observing on dental hygiene, and I think you told the Royal Commissioners earlier that was an important aspect ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ in terms of managing Finlay’s overall care.

MS BROWNE:   Yes.

MS EASTMAN:   But you had a dentist who you found to work very well for Finlay;  is that right?

MS BROWNE:   Correct, yes.

MS EASTMAN:   And you talk about this in your statement at paragraph 51 and 52.  And I think he had to have some dental surgery in Orange Base Hospital ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ in May 2014.

MS BROWNE:   Yes, he did.

MS EASTMAN:   All right.  So before dealing with the surgical aspects of dental care, can you tell us a little bit about the experience that you had with your dentist and how she managed Finlay.  And I think you speak about some techniques that she used that were very effective.  Would you like to tell the Royal Commission a little bit about that.

MS BROWNE:   Yes.  So, firstly, I’d like to make mention that access to dental care for children with disability is very difficult, and hence why it took a number of years to find someone who had the qualities to deal with Finlay, who had the patience.  And at first, we navigated the public dental health system.  Finlay ground his teeth.  If he was in pain, he would grind.  So this led to, you know, ground-down teeth.  In children with Down syndrome, some of their teeth can become impacted;  they don’t lose them.  So baby teeth can still remain in place for a period of time.

And it was important to us because we realised the importance of good oral health care and how it can impact adversely on your – the rest of your health, that we needed to find someone who was going to be able to build a rapport with Finlay and manage him.  And this dentist, Dr Sherene Alexander, worked with him for 18 months or more, before Finlay would even sit in the chair.  So we would go to an appointment, we would do a social story.  So at this point he had an iPod, and we had Proloquo and Pictello so we would make social stories.  We would do an outing.  We would go to her clinic which, at that point, was at the old Orange Hospital but off in the grounds.  And some days we wouldn’t even get up the corridor into her rooms, and that was fine.

And she persevered, and she persevered until Finlay eventually sat in the chair for himself.  Before that, she would examine him as best she could on the floor down on his level.  And eventually, Finlay happily would go and sit in her chair and open his mouth, and let her look in his mouth.

MS EASTMAN:   So can I pause at this point in time.  By this stage we’ve covered a lot of material in relation to Finlay’s experience with the health system up until he was about 16 years of age;  is that right?

MS BROWNE:   Correct.

MS EASTMAN:   Around this time, we’re having discussions with his paediatrician in terms of transition out of paediatric care and what the future would look like?

MS BROWNE:   No.  No, because children with Down syndrome – well, children, sorry, with disability don’t usually start to transition until they’re around 17 or 18.  So we – we had a little ways to go.  And I guess for me, that was a conversation I – I was in denial about that because I was fearful of what that transition would look like and what services would be available.  Realising how difficult it had been to navigate the healthcare landscape, you know, up until that period of time, I guess I was comfortable just sitting where we were because I knew how difficult it was going to be, and then for Finlay in his later years.  It was a source of great anxiety for us.

MS EASTMAN:   All right.  And if we just pause at the 16-year mark and you reflect back on that period of time, I think you say in your statement that there were examples of good experience ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ at hospitals.

MS BROWNE:   Yes.

MS EASTMAN:   And including good experience at Bathurst on occasions.

MS BROWNE:   Yes.

MS EASTMAN:   Is that right?

MS BROWNE:   Yes.

MS EASTMAN:   So you’re not saying that ‑ ‑ ‑

MS BROWNE:   No.  Certainly on admissions to the paediatric unit at Bathurst, the nursing staff were fantastic.  Our paediatrician, who was the mainstay throughout Finlay’s life, was – was fantastic.  We – yes.  I – I don’t want to say that the whole experience was horrific.  There were patches of light amongst the dark, I suppose.

MS EASTMAN:   And you wanted to – you’re aware that people are watching the Royal Commission proceedings.

MS BROWNE:   Yes.

MS EASTMAN:   And I think you’ve said that you’re aware that there may be other families in a similar situation to you.

MS BROWNE:   Yes.

MS EASTMAN:   But you don’t want people to feel that they can’t trust practitioners and that there is hope ‑ ‑ ‑

MS BROWNE:   Exactly.

MS EASTMAN:   ‑ ‑ ‑ and that they do need help.  So what did you want to say about that?

MS BROWNE:   So my main thing in speaking to that was my concern that people may be watching the Royal Commission over the next few weeks and be concerned or fearful of accessing health.  And I – I’d like to say that there are decent people out there.  There are good people.  And I would, I guess, plead with people not – not to seek medical help if they needed it.  That would be the worst thing possible.

MS EASTMAN:   Not to not seek – yes.

MS BROWNE:   Not to not seek medical help, yes.

MS EASTMAN:   All right.

MS BROWNE:   I think it’s important to say that, yes.

MS EASTMAN:   And again, if we just pause at this time and you reflect back on the experiences that you and Finlay have, what lessons can you take from your experience with accessing primary health or the routine matters?  Are there things that now, having thought about these events over a number of years, and also in preparation for the Royal Commission – in some ways we can’t go back and undo ‑ ‑ ‑

MS BROWNE:   No.

MS EASTMAN:   ‑ ‑ ‑ what occurred.  But reflecting back on it, what do you want to tell the Royal Commission about things that could have been different and perhaps have assisted Finlay, you and your family navigate some of the health issues?

MS BROWNE:   I think education all round for parents, for families, for carers, for supports, for clinicians.  I think to listen to the parents.  They’re the strongest advocates.  They know their children best.  Except I didn’t realise how hard I was going to have to advocate for my child.  And at times I feel like I failed in my role as being an advocate, and I think no mother should have to feel like that.

I think listening to people is important and not seeing the diagnosis but seeing the individual, because even though Finlay had Down syndrome – and I’m sure you’ve heard, you know, yesterday and will hear over the coming weeks that collectively his health issues are different to another person’s with Down syndrome.  I think that

sometimes if there’s greater care taken to make reasonable adjustment and bend the rules just a little bit, you can lessen the trauma associated with accessing health care, because most of us, as parents and people with lived experience, have an extreme fatigue of filling out paperwork, telling the same stories, filling in the gaps for clinicians.  The information often is lost.  Each communication you have to have with a different facility or a different practitioner means that there are potential holes in that information.  That information is left out.

I think that in terms of making it more accessible for people with cognitive disability and intellectual disability, that when you come to a place where you have an emergency presentation, that the overall management of that person is going to be easier than if you are trying to have them follow direction and placate and let them – let, you know, clinicians carry out invasive tasks in a period where they’re very unwell and – and already traumatised.  And it doesn’t take much.  I know in health people are busy, they’re time-poor.  They sometimes don’t have the skills.  But to listen and see the person is a simple skill that I would hope everyone in health has.

MS EASTMAN:   Right.  I’m going to start with 30 September 2016.  This started for you as a very ordinary day, didn’t it?

MS BROWNE:   It did.

MS EASTMAN:   And it was the school holidays.

MS BROWNE:   It was the – the first week of the school holidays.

MS EASTMAN:   And so the kids were at home – or the two younger kids, Finlay and his sister.

MS BROWNE:   Yes.

MS EASTMAN:   And you were also home with him that day.

MS BROWNE:   I was.

MS EASTMAN:   And this is a day that’s etched into your memory, isn’t it?

MS BROWNE:   Unfortunately, yes.

MS EASTMAN:   So even though it’s now a number of years ago, you see in your mind every day what happened on that day and following minute-by-minute?

MS BROWNE:   I do.

MS EASTMAN:   So tell me if you need me to stop at any point in time.  So an ordinary day, and then about lunchtime during the day Finlay was making some strange faces and he was lying down on the floor.  He was very pale;  is that right?

MS BROWNE:   Correct.

MS EASTMAN:   And you asked him whether he needed to go to the toilet.

MS BROWNE:   Yes.

MS EASTMAN:   And he then didn’t respond to you, is that right, and then started vomiting, and you thought that he appeared to be in terrible pain.

MS BROWNE:   Yes, that’s correct.

MS EASTMAN:   So Finlay was not one for the vomiting, was he?

MS BROWNE:   No.  He – he had an aversion to vomiting.  And, in fact, he – the noise he was making was horrendous.  He was dry retching but trying to resist vomiting, as much as that’s possible.

MS EASTMAN:   At this time you knew something wasn’t right, didn’t you?

MS BROWNE:   I did.

MS EASTMAN:   So you tried to get him up and you thought, “Well, I will put him in the bath, and let’s see whether or not that might alleviate the pain and help settle him”;  is that right?

MS BROWNE:   Yes, just to calm him.  Finlay had a great love of water and swimming.  And the first reason was that he was contained in the bath, I could manage him a bit better, as strange as that may sound, and I thought that the water would relax him a bit.

MS EASTMAN:   Right.  And while he was in the bath, something really confronting occurred for you that hadn’t happened before, and you knew that this was quite serious.  There was a very significant bowel opening;  is that right?

MS BROWNE:   Yes.  So Finlay had his bowels open, quite well open in the bath, and there was – there was blood in the faeces.  And I remember looking at this thinking, “Gosh, that looks like capsicum or something” at first.

MS EASTMAN:   And ‑ ‑ ‑

MS BROWNE:   But Finlay had a restrictive diet so there’s no way in the world he had been eating capsicum, and I quickly realised that it was, in fact, blood.

MS EASTMAN:   Was it at this point in time that you recognised that Finlay was now becoming very distressed as well?

MS BROWNE:   Yes.

MS EASTMAN:   All right.  So you rang your husband.

MS BROWNE:   I did.

MS EASTMAN:   And by this stage you were starting to get very scared;  is that right?

MS BROWNE:   Finlay was in the bath and he was looking up at me and he was saying, “Mum, please help me.  Please help me.”

MS EASTMAN:   So this is an occasion where you said, “Right.  We need to get to emergency.”

MS BROWNE:   So I actually got him out of the bath, which now had faeces in it, and I put him in the shower, and I cleaned him up and I dressed him.  And I got him some Panadol and just put him to bed.  I took him into his bedroom to put him into bed to relax him to see if he would settle.  And he did momentarily.  My husband was in Orange, which is 45 kilometres away, and I had asked him to come home.

MS EASTMAN:   And when you decided to take him to the hospital, you said that you clearly remember that he wasn’t reluctant to go this time.  And that was a really big difference, wasn’t it?

MS BROWNE:   That was a huge difference.  It was the first time ever in Finlay’s life he actually got in the car.  He went and put himself in the car before us.

MS EASTMAN:   And as he’s leaving his house and his room for what became the last time, I think you say there were some prescient words, weren’t there?  So he said, “I love you, Mum.  I love you, Dad.”

MS BROWNE:   He – as Fin walked down our hallway from his bedroom, my husband and I were on either side of him, and he put an arm around each of us and he looked up and said, “I love you, Mum.  I love you, Dad.”

MS EASTMAN:   And both you and your husband were really like, “We need to get him to the hospital.”

MS BROWNE:   Exactly.

MS EASTMAN:   So the focus was to get him there.

MS BROWNE:   Yes.

MS EASTMAN:   And you’re only a relatively short drive, about two ks.

MS BROWNE:   Two-point-five kilometres away, yes.

MS EASTMAN:   So you get there, and you say on arrival you just had this momentary sense of relief because you thought, “We’re here.  They will help him.  They will do something.”

MS BROWNE:   Exactly.

MS EASTMAN:   All right.  So, in terms of what happened, in your statement you’ve provided an enormous amount of detail.  And all of that detail will be part of the record of the Royal Commission.  And the Commissioners have read all of that material.  So when we walk through this now, it’s not to overlook all of the detail, but what I want to focus on is key points in time that were critical, now, to looking back on this experience.  Okay.

MS BROWNE:   Yes.

MS EASTMAN:   And if you need a break at any time, let me know.  And if I overlook something, let me know.  All right.  So the first step, in terms of entering the emergency section – Emergency Department – at the hospital, was engagement with the triage nurse;  is that right?

MS BROWNE:   Yes.  So, at first, we crossed the threshold of the Emergency Department  and had to go to the clerk so that I could tell her who we were and who Finlay was, at which point, Finlay – I was holding him up – and collapsed on to the ground into a prone position on his stomach.  The triage nurse was notified and stepped out of the triage room.  And that was a Friday afternoon, the beginning of the long weekend, a week before the car races at Bathurst.  And the triage nurse, when I looked up, rolled her eyes.  And I thought, “That’s it.  We’re not going to get the help we need.”

MS EASTMAN:   So at this initial stage it was distressing for both you and for Finlay?

MS BROWNE:   Yes.

MS EASTMAN:   And you talk in your statement about Finlay asking you for help.

MS BROWNE:   Yes.

MS EASTMAN:   And you had a sense, at that point that in time, that everybody was walking around and looking at you.  And is it fair to say that you had a sense of isolation?

MS BROWNE:   So after we were triaged quite quickly, we were put on a quick review bed, or a short consult bed, behind the clerk’s office, which is in a main thoroughfare to the Emergency Department.  So, yes, there were staff walking in, backwards and forwards, past us, and Finlay continued to beg me to help him.

MS EASTMAN:   Okay.

MS BROWNE:   And he continued to vomit.

MS EASTMAN:   All right.  So about 45 minutes later.

MS BROWNE:   Yes.

MS EASTMAN:   You then see one of the Junior Medical Officers.

MS BROWNE:   Correct.

MS EASTMAN:   And the concern that you raised there was that Finlay could understand what was going on and you wanted that doctor to speak directly to Finlay and not just to yourself;  is that right?

MS BROWNE:   So there are two parts to that.  Firstly, the main reason why that Junior Medical Officer approached us was to question how difficult Finlay was to cannulate.  And I had to clarify whether that was from a clinical point of view or on what aspect was he actually making that comment, because I said, “Well, he doesn’t like it.”  He, during that interaction when he first came over to us, didn’t engage with Finlay.  In fact, he stood between Finlay and myself with his back to Finlay.  And I said that he should address Finlay.  And I said, “Finlay, this is a doctor.”  And I said, “What’s your name? “  I said, “Can you introduce yourself to my son?”  And, “Can you tell him what – what you’re going to do?”

MS EASTMAN:   Okay.  Now, the detail is there, but, moving forward, Finlay had an abdominal CT scan at about 7.30 that night.

MS BROWNE:   Yes.

MS EASTMAN:   And you were present with Finlay while the scan was happening.

MS BROWNE:   Correct.

MS EASTMAN:   And I think you’d sent your husband home at this stage.  He was getting a little frustrated;  is that right?

MS BROWNE:   Yes.

MS EASTMAN:   All right.  And in terms of the outcome of the CT scan, it – would it be fair to say – and I’m putting this in a layperson’s term – then that revealed discovery of a fairly significant intestinal or abdominal obstruction;  is that right?

MS BROWNE:   Correct.

MS EASTMAN:   And so the issue, at that point in time, was how do we respond to what has come up on the CT scan?

MS BROWNE:   Yes.

MS EASTMAN:   But it is particularly serious, that it would require a surgical intervention.

MS BROWNE:   Correct.

MS EASTMAN:   And one of the issues discussed around that point in time was whether or not Finlay needed to be taken out of Bathurst down to the specialist Children’s Hospital at Westmead;  is that right?

MS BROWNE:   I was led to believe ‑ ‑ ‑

MS EASTMAN:   Sorry.  And I’m jumping a lot.

MS BROWNE:   I was led to believe, at that time ‑ ‑ ‑

MS EASTMAN:   Yes.

MS BROWNE:   ‑ ‑ ‑ that NETS team would come.

MS EASTMAN:   All right.  So you better explain to the Royal Commissioners.

MS BROWNE:   So NETS is Neonatal Emergency Transport Service, which is a helicopter service, so that Finlay would be taken to Westmead Children’s Hospital.

MS EASTMAN:   All right.  And at paragraph 101, this is a conversation that you had with the campus nurse manager.  You said to him:

“You’re going to get him out of here, aren’t you?”  She said or she told me they would arrange for a helicopter to take Finlay to Westmead.

And you said you wanted to go with him.

MS BROWNE:   Yes.

MS EASTMAN:   But the transfer did not actually happen ‑ ‑ ‑

MS BROWNE:   No.

MS EASTMAN:   ‑ ‑ ‑ until much later.

MS BROWNE:   No.  And, in fact, Newborn Paediatric Emergency Transport Service didn’t come and they didn’t facilitate the transfer.

MS EASTMAN:   All right.  And you say, at paragraph 102, that at this point in time, you had a sense of hopelessness that everyone, doctors, nurses, retrievals, had already written Finlay off.

MS BROWNE:   Correct.

MS EASTMAN:   What caused you to have that feeling?

MS BROWNE:   There was a distinct lack of urgency.  There was no obvious signs that people were doing anything.  I felt that Finlay should have been packaged, ready for retrieval, that he would be monitored appropriately, that maybe they would put a nasogastric tube in to release the pressure on his gut, maybe that they would put an indwelling catheter in – he hadn’t passed any urine since the beginning of the day – that maybe they would monitor him and that help would come, that they, given the serious nature of what they had discovered, would be actioning better monitoring of Finlay.

MS EASTMAN:   Right.

MS BROWNE:   And the final straw was that, after the CT results were to hand, that an elderly lady who had been in an MVA and sustained an acute abdominal injury was wheeled past Finlay and myself and taken to theatre.

MS EASTMAN:   All right.  Finlay was taken to theatre, but later on that night;  is that right?

MS BROWNE:   Yes.

MS EASTMAN:   And before that surgery, there’d been an issue in relation to resuscitation.  So you were concerned that he was having a cardiac arrest.

MS BROWNE:   So I ‑ ‑ ‑

MS EASTMAN:   And ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ you were actually involved in the resuscitation process.  This is paragraph 109 of your statement.

MS BROWNE:   Yes.  So what happened was, I think the night staff had come on for the evening, and I felt that fresh eyes may reinvigorate the plan and the treatment of what was happening with Finlay;  that it may, I don’t know, get someone to action something, something to help him.  And, in fact, it became obvious that he hadn’t had a blood pressure recorded in some time.  And the main priority at that time was that I felt he was in pain and he hadn’t had any pain relief since 8 o’clock.  And in order to give him the pain relief they wanted to first attend a blood pressure.  And the

blood pressure was significantly low.  It was somewhere in the vicinity of 75 systolic, so the top number.

MS EASTMAN:   Right.  So, again, moving forward, by about 5.30 the next morning, Finlay was taken to the Children’s Hospital at Westmead.

MS BROWNE:   He was.

MS EASTMAN:   And that was by a fixed-wing aeroplane.

MS BROWNE:   Correct.

MS EASTMAN:   And you and your husband drove down to Westmead.

MS BROWNE:   Yes.

MS EASTMAN:   When Finlay arrived at Westmead there was further surgery.

MS BROWNE:   There was, an afternoon after they had stabilised him.

MS EASTMAN:   And for the next 71 days Finlay’s home was Westmead Hospital.

MS BROWNE:   Correct.

MS EASTMAN:   Of those 71 days, 65 of them were spent in the Paediatric Intensive Care Unit.

MS BROWNE:   Correct.

MS EASTMAN:   And you were with him the whole of the time.

MS BROWNE:   Yes, bar one night.

MS EASTMAN:   And you lost Finlay after the 71 days.

MS BROWNE:   Yes.

MS EASTMAN:   And you’ve talked about this in your statement at paragraph 114.  So we’ve talked about this – and do you want to read those paragraphs or would you like me to read it for you.  What would you like to do?

MS BROWNE:   I will read.

MS EASTMAN:   All right.  So if you want to read from 114 down to 120.

MS BROWNE:

Finlay fought on for 71 more days.  No one expected that.  He underwent 12 further surgeries.  At the end, the majority of his small bowel was removed.  We were told he would have an ileostomy for life.  He would never be able to eat or drink again.  As a result of his injuries, his liver and kidneys were shutting down.  He was on a ventilator for four weeks, spending a total of 65 days in the Paediatric Intensive Care Unit.  He later became well enough to be off the ventilator for a few periods of time, then reventilated prior to his death for 13 days.

I think the staff at Westmead began to listen to me.  They let me be part of Finlay’s care.  They listened to me when I said he was in pain and about what he did and didn’t like.  They built rapport with him and with us. 

The care in Westmead was phenomenal.  I hope they learned some lessons in caring for Finlay.  They got to know him, his sense of humour, and his quirks.

As Finlay became sicker, his ability to make himself heard improved.  His speech became clearer.  He did everything anyone asked of him.  He was so, so sick.  He did what he was asked.  He just wanted to go home.  He kept saying, “Mum, I want to go home.”  He wanted to go back to school.  I wanted to get him home.  But it became evident that, if he did recover, he would have no quality of life. 

By the final surgery, which was quite aggressive, he was put back on to ventilation, which he hated.  He was only lightly sedated.  I implored the medical team to stop.  It was cruel to continue.  He had been through enough.  So the decision was made to withdraw treatment.  Discussions were had about taking Fin home to die, but he was too unwell. 

On the 10^th of December 2016, our family spent the morning with Fin at Westmead.  I said to Fin, “I’m taking you home today.”  He did a double-nod and said, “Yes, mum.”  He died that day with his siblings, myself and my husband all there with him.

MS EASTMAN:   You did take him home, didn’t you?

MS BROWNE:   I did.

MS EASTMAN:   And so, after his death, he had a couple of days at home?

MS BROWNE:   He had just over 24 hours.

MS EASTMAN:   And the loss of your son and the impact on your family is as raw for you as it was back in December 2016.

MS BROWNE:   Correct.

MS EASTMAN:   We’re sorry for your loss.

MS BROWNE:   Thank you.

MS EASTMAN:   Finlay’s death galvanised you;  is that right?

MS BROWNE:   His life galvanised us.

MS EASTMAN:   But you wanted to find out why and what happened.

MS BROWNE:   Correct.

MS EASTMAN:   And so much of what you have been working on for the last few years is to try to have a better understanding ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ of what happened.

MS BROWNE:   That’s correct.

MS EASTMAN:   And the importance of giving evidence at the Royal Commission is to tell Finlay’s story so that it helps the Royal Commission understand what’s happened to your family and perhaps others.

MS BROWNE:   That’s right.

MS EASTMAN:   So, in your statement, you talk a lot about what you’ve done after Finlay’s death, and so the Royal Commissioners can read that.  But I just want to briefly summarise the steps that you’ve taken or that you’ve felt that you need to take.  So one was in February 2017, you made a complaint to the hospital.

MS BROWNE:   Correct.

MS EASTMAN:   You’re aware that there was an investigation called a Root Cause Analysis that was undertaken.

MS BROWNE:   Yes.

MS EASTMAN:   Your concern about that is that you expected that to be completed within 70 days, but it took 240 days.

MS BROWNE:   Correct.

MS EASTMAN:   You’ve made a complaint to the New South Wales Health Care Complaints Commission?

MS BROWNE:   Yes, I have.

MS EASTMAN:   And the Commission has indicated that the matter should not go to formal investigation, but they have raised with you engaging in a conciliation process ‑ ‑ ‑

MS BROWNE:   Correct.

MS EASTMAN:   ‑ ‑ ‑ is that right?

MS BROWNE:   Yes.

MS EASTMAN:   You’ve also written to the New South Wales Minister for Health.

MS BROWNE:   I have.

MS EASTMAN:   And you’ve pursued obtaining a Coronial Inquest.

MS BROWNE:   I have.

MS EASTMAN:   And the decision about whether there will or won’t be a Coronial Inquest is something you’re waiting to hear on shortly.

MS BROWNE:   I am.

MS EASTMAN:   All right.  You’ve also made applications to access the relevant hospital records.

MS BROWNE:   I did soon – soon after Finlay died.

MS EASTMAN:   And one step that you took, but I think, on reflection you wonder why you did this, is that you went in and spoke to the Emergency Departments ‑ ‑ ‑

MS BROWNE:   I ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ and participated in a grand rounds.

MS BROWNE:   So I spoke to whole of hospital in a grand rounds format, probably six months after Finlay’s death.

MS EASTMAN:   Why did you do that?

MS BROWNE:   Why did I do that?  Because I wanted people to know what had happened to Finlay.  I wanted clinicians to know what the ramifications of their inaction were to not only Fin but to his family, to his friends;  that this young man had a life, a life well-lived.  He was just not a person with a disability.  He was a human being.

MS EASTMAN:   During this period of time you felt isolated and without support networks, in terms of the experience in the health system;  is that right?

MS BROWNE:   Very much so.  Correct.

MS EASTMAN:   And then, by coincidence, one day you were watching the 7.30 Report.

MS BROWNE:   In 2017.

MS EASTMAN:   And you may have heard me mention in the opening address yesterday the circumstances of Michelle and Maureen McIlquham.

MS BROWNE:   Correct.

MS EASTMAN:   And you saw a story on the 7.30 Report about that.

MS BROWNE:   I did.

MS EASTMAN:   And you saw an advocate talking on that story, Jim Simpson.

MS BROWNE:   I did.

MS EASTMAN:   And that then led you to make some contact with CID and Mr Simpson.

MS BROWNE:   I – I emailed Mr Simpson that day.

MS EASTMAN:   All right.  And that then resulted, I think, in you finding a broader community of advocates ‑ ‑ ‑

MS BROWNE:   It ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ to be able to, perhaps, put some of the experiences into perspective.  Would that be a fair summary ‑ ‑ ‑

MS BROWNE:   Yes.

MS EASTMAN:   ‑ ‑ ‑ or you may have a different way of describing it.

MS BROWNE:   It gave me a compass, I guess, to navigate this, because there wasn’t a clear path.  There’s not a clear-cut path about what a person is to do when this happens other than complain to the hospital.  And when your complaints to the hospital, I think, on face value, leave more unanswered questions, you don’t know where to go and, hence, why I started contacting people and emailing people.  I wanted people to hear my son’s story.  I wanted people to know that this has happened in New South Wales Health.  But I wanted the right people to know.  I

didn’t want to go off – and I believed, I guess, there are three sides to every story, and I wanted everyone to have a chance to tell their side of the story.

MS EASTMAN:   All right.  So in your statement you’ve reflected on things that you think need to change – and you’ve set that out at paragraph 143 and following – but there’s one thing in particular which continues to still cause you great distress, and that is Finlay’s death certificate.

MS BROWNE:   Yes.

MS EASTMAN:   And are you happy for me to put that up on the screen now?

MS BROWNE:   Yes.  Yes.

MS EASTMAN:   So I think that may have come up just in front of you.

MS BROWNE:   Yes.

MS EASTMAN:   So this looks like the usual form that’s filled out.  And what’s the concern that you have about the death certificate that still ‑ ‑ ‑

MS BROWNE:   So ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ causes you some distress?

MS BROWNE:   So in section 5 under the Medical Causes of Death, there’s three sections.  There’s section 1(a) which says “ischaemic bowel”, which was a result of the initial injury, and I have no cause for concern with that.  The second is a volvulus, which was part of that.  The next one is a candida infection which he did have which was due to the over-handling of his gut during surgeries, which is a normal thing, displaces gut bacteria.  But secondary to that is Trisomy 21, which is Down syndrome, which indicates that one of the causes of Finlay’s death is, in fact, his Down syndrome.

MS EASTMAN:   One of the things that you would like to see changed is that it shouldn’t just be part of the ordinary course to identify a person with intellectual disability and their disability on the death certificate if it wasn’t part of the cause of the person’s death;  is that right?

MS BROWNE:   That’s correct.

MS EASTMAN:   Right.  Now, those are the questions that I wanted to ask you.  Have I overlooked anything in particular that you wanted to tell the Royal Commission?

MS BROWNE:   No.  I – no.

MS EASTMAN:   All right.  Again, we’re very sorry for your loss, and we thank you very much for sharing what has been a matter of great intimacy in terms of your family and your own experience, and we’re very grateful for your assistance with the work of the Royal Commission.

MS BROWNE:   Can I just – sorry, one thing.

MS EASTMAN:   Of course.

MS BROWNE:   Just in closing, I think a famous Australian ophthalmologist, John Colvin, once said that more is missed in medicine by not seeing and not knowing.  I think that summarises what has happened to Finlay.  And I hope that everyone sees – sees him now.

MS EASTMAN:   If the Commission pleases, that’s the end of Mrs Browne’s evidence.

COMMISSIONER SACKVILLE:   Ms Browne, I would like to express on behalf of all of the Commissioners here how very, very sorry we are for the loss and for the loss that has been sustained by your family.

MS BROWNE:   Thank you.

COMMISSIONER SACKVILLE:   I want to thank you for sharing Finlay’s story with us, with the Royal Commission.

MS BROWNE:   Thank you for listening.

COMMISSIONER SACKVILLE:   Your fair-haired warrior.  And I hope you take some comfort from the fact that Finlay’s story has been preserved with the Royal Commission.

MS BROWNE:   Yes.  Thank you.

COMMISSIONER SACKVILLE:   Thank you very much.

MS BROWNE:   Thank you.

<THE WITNESS WITHDREW                                                                                                                    [12.23 pm]

MS EASTMAN:   Commissioners, could I ask that we have a brief adjournment – not for the lunch adjournment but probably for 10 minutes.

COMMISSIONER SACKVILLE:   Yes, I think we can have a brief adjournment.

MS EASTMAN:   Then if we can then commence our next witness, and then we will adjourn at the regular time at 1 pm, if that’s convenient to the Commission.  Thank you.

COMMISSIONER SACKVILLE:   Thank you very much.

ADJOURNED                                                                                                                    [12.23 pm]

RESUMED                                                                                                                    [12.34 pm]

COMMISSIONER SACKVILLE:   Yes, Ms Eastman.

MS EASTMAN:   Thank you, Commissioners.  Our next witness is Toni Mitchell.  She and her son, Joshy, who’s with her have flown from Toowoomba to give evidence.  And they are on a flight this afternoon.  So it may mean that I may ask your indulgence in terms of how we deal with the time and the length ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Sure.

MS EASTMAN:   ‑ ‑ ‑ of the breaks during the course of the day.  All right.  Before I deal with Ms Mitchell’s evidence, I don’t think I have formally asked you to mark as an exhibit, as exhibit 4.5, the statement of Rachel Browne.

COMMISSIONER SACKVILLE:   Yes.

EXHIBIT #4-5 STATEMENT OF RACHEL BROWNE DATED 02/02/2020 (STAT.0041.0001.0001)

MS EASTMAN:   And the documents that accompany her statement which are found in tab 16 through to 20.  So if that could be treated as exhibit 4.5.

COMMISSIONER SACKVILLE:   Certainly.

EXHIBIT #4-5.1 PHOTOGRAPH OF FINLAY BROWNE (IND.0011.0001.0003)

EXHIBIT #4-5.2 LETTER FROM LOCAL MEDICAL OFFICER TO BATHURST HOSPITAL RE FINLAY’S PRESENTATION TO EMERGENCY DATED 15/05/2007 (IND.0011.0001.0001)

EXHIBIT #4-5.3 LETTER FROM WESTERN NSW LHD TO HCCC DATED 24/08/2017 (NSW.0009.0001.0001)

EXHIBIT #4-5.4 DEATH CERTIFICATE OF FINLAY BROWNE DATED 21/12/2016 (IND.0011.0001.0002)

COMMISSIONER SACKVILLE:  Thank you very much for coming from Toowoomba for today, and if you don’t mind just following the approach that will be explained.

<TONI LEANNE MITCHELL, SWORN                                                                                                                    [12.35 pm]

<EXAMINATION BY MS EASTMAN

COMMISSIONER SACKVILLE:   Thank you.  Ms Eastman will now ask you questions.

MS EASTMAN:   Excuse me one moment.

COMMISSIONER SACKVILLE:   As soon as she can find her papers, she will ask you some questions.

MS EASTMAN:   Thank you.  Too much paper.  All right.  So your name is Toni Leanne Mitchell.

MS MITCHELL:   Yes.

MS EASTMAN:   And you are a carer for your son, Joshy.

MS MITCHELL:   Yes.

MS EASTMAN:   And you’ve made a statement to the Royal Commission.

MS MITCHELL:   Mmm.

MS EASTMAN:   And you’ve had a chance to read the statement.

MS MITCHELL:   Yes.

MS EASTMAN:   Is there anything you want to change or correct in the statement?

MS MITCHELL:   No, it’s fine.

MS EASTMAN:   And its contents are true and correct.

MS MITCHELL:   Yes.

MS EASTMAN:   All right.  So you’ve got a copy of the statement with you.

MS MITCHELL:   Yes.

MS EASTMAN:   And you’ve got some other notes that you might want to refer to ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ from time to time.  Is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   All right.  So can we start this way.  You’ve come to the Royal Commission to talk about your experience and, importantly, Joshy’s experience in accessing the health system in Queensland;  is that right?

MS MITCHELL:   That’s true.

MS EASTMAN:   And would it be fair to say that if one steps back from the statement that you’ve made, your experience is really one of survival?

MS MITCHELL:   That would be a very good way of saying it, yes.

MS EASTMAN:   And I think you say in your statement that your whole feeling in terms of the course of Joshy’s life – and we will come to talk about Joshy and understand and learn about him in a moment – has been one of living on borrowed time.

MS MITCHELL:   Yes.  Right from the word go, yes.

MS EASTMAN:   And the sense that you’ve felt as his mum that you’ve had to justify his life;  is that right?

MS MITCHELL:   Over and over again.  And our choices to continue to fight for his life, we’ve had to justify that over and over again as well.

MS EASTMAN:   And so what you hope to achieve in giving evidence to the Royal Commission is not simply to talk about all of Joshy’s medical procedures ‑ ‑ ‑

MS MITCHELL:   No.

MS EASTMAN:   ‑ ‑ ‑ over the course of his life but to just talk about navigating through those processes with a child with a cognitive impairment.  Is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   All right.  So against that background, let’s start with Joshy.  You’ve set out in paragraph 6 of the statement, you tell us on paper a little bit about him, and he’s here in the room and we’re very happy to have Joshy with us today.  But I think, Joshy, Mum is going to speak.  So, Toni, tell us a little bit about Joshy.

MS MITCHELL:   This is my son, Joshua.  He likes to be called Joshy.  He’s 19 and a half.  He will be 20 in May.  He was homeschooled most of the – he went to – did school for just half of prep, and then for the whole rest of the way he’s been home schooled.  And he officially finished his schooling at the end of 2018, but we still do stuff.  You know, it’s good to keep your mind going.  He loves watching Star Wars and Star Trek and The Wiggles, and he likes playing with his cars and reading big, fat, heavy books – the bigger and heavier, the better.

MS EASTMAN:   He’s a bit of a music fan.

MS MITCHELL:   He loves live bands.  And when he was healthier, we would be always off watching live bands somewhere.

MS EASTMAN:   And he’s got to meet a few famous people along the way.

MS MITCHELL:   Yes.  Yes, yes.  He likes meeting people.  He’s seen on TV – seen singing music, and so we try and make that happen for him.

MS EASTMAN:   So Joshy has a full life in the life that he lives with you;  is that right?

MS MITCHELL:   Yes.  Yes.

MS EASTMAN:   So what I want to start with in terms of your journey through the health system is, can we start with before Joshy was born.

MS MITCHELL:   Yes.

MS EASTMAN:   Is that a helpful place to start?

MS MITCHELL:   Yes.

MS EASTMAN:   Well, maybe not, you might say.  So you became pregnant with Joshy when you were 28 years old.

MS MITCHELL:   Yes.

MS EASTMAN:   And you were working at that time in the public sector ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ in Toowoomba.

MS MITCHELL:   Yes.

MS EASTMAN:   And you went to have an ultrasound at the Toowoomba Hospital, and that was in about February 2000.

MS MITCHELL:   Yes, 20 years ago.

MS EASTMAN:   Right.  But Joshy is not your only child.

MS MITCHELL:   No, I have an older son.

MS EASTMAN:   All right.  And so when you went for the first ultrasound – and you give some evidence about this – I think there was much excitement as to whether this was going to be a boy or a girl.

MS MITCHELL:   Yes.

MS EASTMAN:   Is that right?

MS MITCHELL:   Yes, we were trying to find out – so my mum was there.  So we were trying to find out what I was having without letting my older son know, because we wanted him to have the excitement of the surprise.

MS EASTMAN:   Okay.  And it was a very sort of joyous pregnancy ‑ ‑ ‑

MS MITCHELL:   Yes, it was.  It was ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ in the sense that you were really anticipating and looking forward to the birth of a baby brother or baby sister;  is that right?

MS MITCHELL:   Yes.  Yes.

MS EASTMAN:   Okay.

MS MITCHELL:   He was very much wanted and looking – we were very much looking forward to him.

MS EASTMAN:   All right.  And so this ultrasound is sort of the moment of time for you, isn’t it ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ in terms of what was to follow.

MS MITCHELL:   Yes.  It sort of actually has set the tone for the rest of his life.

MS EASTMAN:   All right.  So do you want me to read part of the statement, or do you want to read the statement, or do you just want to tell us what happened?

MS MITCHELL:   I can just tell you, if you like.

MS EASTMAN:   All right.  Go ahead.

MS MITCHELL:   Yes.  So she had told us that I was having a boy, sort of quietly, and then she was looking at some more pictures and we were just talking and looking at the pictures, and then she just got up and ran from the room.

MS EASTMAN:   What do you mean, “ran”?  She literally got up and ran?

MS MITCHELL:   She ran, ran out of the room.  She didn’t even say anything to us.  She just got up and ran out of the room, and I was hanging onto my cross and I started to cry.  I said to Mum, “That’s not good”, and then all of a sudden, all these people just walked in, and my mum and my son were pushed by these people back into a far corner, so they weren’t even next to me anymore, and all these people – I have no idea who they were.  No one asked my permission.  No one said, “This is what we’re going to do”.  They just all filled the room and all crowded all around us and everything.  The whole – the room was packed, and then an older man came in and sat down with his back to me and he was looking at the screen and doing my ultrasound and he never once looked at me or engaged me directly, but then he said, “Your baby has a heart condition.  We can see that there’s no walls inside his heart, and so you’re probably going to miscarry within the next couple of weeks”. 

He said, “We also look for soft markers.  There’s 10 soft markers that we look for at this point, and we can identify that your son has six, and based on this, it’s highly likely your son has Down syndrome”.  He told me what the six were, and then he still hadn’t looked at me, and he looked a bit longer, and people were all murmuring, and I was still crying, and then he finally turned around.  He said, “So here’s your appointment for a termination”, gave me a piece of paper and walked out.  Everybody else walked out, and I was just left there with my mum and my son and crying, and that was our introduction to it, and it set the whole tone for Joshy’s life, because in that moment, they completely disallowed his life.  They said he wasn’t worth living.

MS EASTMAN:   But you also made a decision in that moment, didn’t you?

MS MITCHELL:   Yes.  Yes, because ‑ ‑ ‑

MS EASTMAN:   And almost – at that moment was ‑ ‑ ‑

MS MITCHELL:   My decision.

MS EASTMAN:   ‑ ‑ ‑ your decision to say you were not going to have a termination.

MS MITCHELL:   Yes.

MS EASTMAN:   And you threw the piece of paper in the bin;  is that right?

MS MITCHELL:   I screwed that piece of paper up and I threw it in the bin.

MS EASTMAN:   All right.

MS MITCHELL:   I wish I had it so I could show you.  But, no, I left it there, and I didn’t, of course, do that, but that moment, that defined the whole rest of our life.

MS EASTMAN:   Yes.

MS MITCHELL:   Because that was the moment I started having to fight.  That was the moment I had to start justifying my son’s right to live and to be treated, and I had to start justifying his value to be alive, and for the whole rest of my pregnancy, where they kept saying, “You don’t understand what you’re doing.  You don’t understand the immensity of bringing a child like this into the world.  You don’t understand what a burden this is going to be on you and on society and on your family”, and they kept judging us based on my decision to give him a chance at life.

MS EASTMAN:   Did anyone offer you any assistance as to what resources might be able to help you and your family?

MS MITCHELL:   As part of my antenatal process, I had to go in every week, because he was tiny, and with his heart, that had to be monitored.  So we had to go in every week, and part of our weekly appointment, I would meet with a genetic counsellor who would give me lists and lists and lists of all the things that could go wrong.  I already had an older son, so I was like, “Well, you know, he could break his leg, but that’s not in your list”, and, “He could do this and that’s not in your list”, and just because it’s in your list, doesn’t mean it will actually happen.  That’s just a list of – you know, I was already fighting.  And then she said, “You’re not taking this seriously.”  And I said, “I know what I’m doing, this is my son.”

MS EASTMAN:   And getting close to the birth – Joshy’s birth – I think the cardiologist had said to you that he’s going to need some surgery ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ at the time of birth.  So you were ready and prepared for that when you were about ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ to give birth to Joshy;  is that right?

MS MITCHELL:   So he said that, when he was born, he would need to have heart surgery straight away.  They didn’t think he would survive being born without going straight into surgery.  And that, when I went into labour, I would have to go into the local hospital and get transferred straight to Brisbane.

MS EASTMAN:   All right.  So when it – Joshy came a little bit early;  is that right?

MS MITCHELL:   Yes, seven weeks.

MS EASTMAN:   Okay.  And in terms of what your expectation was when he was born, was that there would be an immediate transfer to Brisbane?

MS MITCHELL:   Yes.  And there would be specialists there who were ready waiting for him.

MS EASTMAN:   To go.  Did that happen?

MS MITCHELL:   No.

MS EASTMAN:   Why not?  Do you know?

MS MITCHELL:   I don’t know. 

MS EASTMAN:   All right. 

MS MITCHELL:   I kept asking them, “When will I be getting transferred to Brisbane?”   They’d go, “No, no, no, you’re right here.”  I asked for a doctor to come in and, when she came in, I said, “Do you know what to do with him when he is born with this heart?”  And she said, “No.”  And it’s like, “Why are you even here?”

MS EASTMAN:   All right.

MS MITCHELL:   “We need someone who knows what they’re doing.”  But no one came. 

MS EASTMAN:   All right.  And so looking again at your statement, if we follow that through, paragraph 26, that’s where you talk about going into labour on the 20^th of May 2000.

MS MITCHELL:   Mmm.

MS EASTMAN:   And in terms of how Joshy came into the world, when he was born he was limp and quiet and still.  And you felt that everyone around you was sort of watching rather than stepping in to help.  Was that ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   That’s your ‑ ‑ ‑

MS MITCHELL:   Well, they weren’t ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ recollection?

MS MITCHELL:   ‑ ‑ ‑ prepared.  And they weren’t doing anything that was in our plan to do.  And when he was born, the – the – the nurse was – withheld him and was doing stuff with him over in the corner and got him breathing and then he was taken straight off to the nursery.  But, yes, they weren’t prepared for transfer or his heart or anything.

MS EASTMAN:   But you were quite insistent, weren’t you, that ‑ ‑ ‑

MS MITCHELL:   Yes.  I was ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ something needed to be done.

MS MITCHELL:   ‑ ‑ ‑ begging them.  I was frantic, because I was terrified that, you know, this is what I was told had to be done.  I had seen the pictures of his heart.  I had had it all explained to me.  I was terrified, because nothing was being done and I was so frightened.

MS EASTMAN:   So, in addition to the issues with his heart, it was the case, wasn’t it, that there also had to be some genetic testing?

MS MITCHELL:   Yes because ‑ ‑ ‑

MS EASTMAN:   So then a diagnosis of ‑ ‑ ‑

MS MITCHELL:   of the Down syndrome.

MS EASTMAN:   Yes.

MS MITCHELL:   Yes.

MS EASTMAN:   So what was the process in terms of that testing?

MS MITCHELL:   That day, later on in the day, when it was daylight, they took samples from the back of his hand and sent that off to be genetically tested for the chromosomes for Down syndrome.

MS EASTMAN:   And that took a couple of weeks ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ to come back.

MS MITCHELL:   Yes.

MS EASTMAN:   So you ended up leaving the hospital ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ but leaving Joshy in – in the hospital.

MS MITCHELL:   They discharged me.

MS EASTMAN:   Yes.

MS MITCHELL:   They wouldn’t let me stay.  They said, “No, go home,” sort of thing.  So I stayed there for as long as I could, but I also had to get my older son home and fed as well, because I’m a single mum.

MS EASTMAN:   So you’re at home.  You’ve unpacked.  And you get a call from hospital saying ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ that Joshy is about to go in a helicopter ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ to Brisbane.

MS MITCHELL:   Yes.  They said, “We’ve called a helicopter.  He’s critical.  You need to get up here.”

MS EASTMAN:   And had anybody told you about what had happened, between you leaving the hospital – so you were discharged, coming home, unpacking, getting organised, and then this call?

MS MITCHELL:   Not at that point, no.

MS EASTMAN:   All right.  So you were quite distressed;  is that right.

MS MITCHELL:   Yes.

MS EASTMAN:   Like, what was happening?

MS MITCHELL:   Yes.

MS EASTMAN:   You wondered what was going on.

MS MITCHELL:   Yes.

MS EASTMAN:   But you drove yourself to Brisbane.

MS MITCHELL:   I – I went up to the hospital and I waited with Joshy until he was retrieved, which ended up taking five hours because the helicopter came, but then couldn’t land because of fog.  So had had to go all the way back to Brisbane, transfer to an ambulance, and then come up.

MS EASTMAN:   Okay.  And he ends up in the Children’s Hospital in Brisbane.

MS MITCHELL:   Yes, the Royal Children’s.  The – yes, the ‑ ‑ ‑

MS EASTMAN:   Royal Children.

MS MITCHELL:   ‑ ‑ ‑ Royal Women’s ‑ ‑ ‑

MS EASTMAN:   Royal Women.

MS MITCHELL:   ‑ ‑ ‑ because that’s where the neonatal section was.

MS EASTMAN:   And he’s on life support and in a coma.  Did anyone explain to you what was happening at that point in time?

MS MITCHELL:   They just said he needed heart surgery, that they couldn’t give him heart surgery until he was stable, and he wasn’t stable because he hadn’t had that first big meconium.

MS EASTMAN:   Yes.

MS MITCHELL:   And until he did that, they couldn’t do anything for his heart and it just went round in circles, “We can’t operate on his heart till we do this.”  “We can’t do this until his heart’s stable.”  “If he’s not stable, we can’t do this,” and it just – it was terrifying, because there was no answers.

MS EASTMAN:   What – what had been your experience with hospitals and acute situations before this?

MS MITCHELL:   Not much.  My older son had broken his arm and been bitten by a Redback and ‑ ‑ ‑

MS EASTMAN:   Right.  That’s very Australian.

MS MITCHELL:   He’s a boy.  It wasn’t hugely – in we hadn’t been in hospitals too much, like intensive care or long-term.

MS EASTMAN:   Okay.  So the advice was, as you say in paragraph 34, was to switch off the life support machines.

MS MITCHELL:   Yes.

MS EASTMAN:   And you said ‑ ‑ ‑

MS MITCHELL:   No.

MS EASTMAN:   ‑ ‑ ‑ you’re not ready for that.  You’re not going to do that.

MS MITCHELL:   I said that it’s not my decision, it’s God’s.  And if God wanted him he would take him. 

MS EASTMAN:   All right. 

MS MITCHELL:   And if he wasn’t taking him, then we would do everything we could.

MS EASTMAN:   All right.  Joshy survived.

MS MITCHELL:   Yes.

MS EASTMAN:   And he ended up being stabilised at the hospital, but this was his first bout of surgery very early ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ on in his life.  He was only a few days old;  is that right?

MS MITCHELL:   Yes.  He finally had a movement and they – three times, they ended up cancelling that first heart surgery because he wasn’t stable.  They booked it and then couldn’t go through with it.  Then they finally did do the first heart surgery, which stabilised him enough, but then his – he still kept getting quite constipated, which made everything else not work.

MS EASTMAN:   And you were staying with him at the Ronald McDonald House while ‑ ‑ ‑

MS MITCHELL:   He was in intensive care and I was on – in – at the Ronald McDonald House.

MS EASTMAN:   And one night you just had that feeling that something wasn’t right.

MS MITCHELL:   Yes.

MS EASTMAN:   Can you tell the Royal Commission what happened?

MS MITCHELL:   The mother’s gut feeling.  Yes.  So, that day, he had had a brain scan, which is formal for premmies, and eye scans and all the blood tests that they have to do. And he had been poked prodded a lot.  He had actually been downgraded to the high-dependency ward from intensive care.  And he was very upset and I was never able to nurse him.  So, you know, I’d nurse him every chance I got.  So I was nursing him that night and they were very, very busy.  So they had agency nurses on just for extra staff.  And his room had four babies and an agency nurse.  And he wouldn’t stabilise.  He wouldn’t settle to go to sleep or anything and I was reluctant to leave him, but she said, “If you just put him down and leave him alone, he’d settle.”  And I was like, “Well, he has been handled a lot today.” 

So it was about 11 o’clock and I was always there in the morning as soon as – as early as possible, usually about 6 or 7 am, I would go back to the ward and spend the day with him for as long as I could.  So I went back to my room.  And I – I couldn’t settle myself.  And at 3 am I went back to the ward and, when I walked in, there was no nurse and Joshy was still, he wasn’t breathing and he was this awful grey colour.  And I just – I screamed.  And I just picked him up in my arms, and pressed the alarm, and the nurses all came running, the doctors came running, and ‑ ‑ ‑

MS EASTMAN:   So he had to be resuscitated?

MS MITCHELL:   Yes.

MS EASTMAN:   And then ‑ ‑ ‑

MS MITCHELL:   And ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ back into ICU.

MS MITCHELL:   They took him back into ICU.

MS EASTMAN:   All right.  And after about two months.

MS MITCHELL:   We finally got home to the Toowoomba Hospital.

MS EASTMAN:   Yes.  So – so he survived.  And then he’s transferred back to Toowoomba, so closer to home.

MS MITCHELL:   Yes.

MS EASTMAN:   And it was your hope that Toowoomba would be a relatively short stay and that you would be able to take your baby home.

MS MITCHELL:   Yes.

MS EASTMAN:   So, at this stage, you hadn’t seen your baby without tubes ‑ ‑ ‑

MS MITCHELL:   No.

MS EASTMAN:   ‑ ‑ ‑ and plastic things in him.

MS MITCHELL:   Only briefly ‑ ‑ ‑

MS EASTMAN:   Yes.

MS MITCHELL:   ‑ ‑ ‑ when we’d change them, but – no.

MS EASTMAN:   Okay.  So when he’s back at Toowoomba Hospital, things started to improve and you were eventually able to take him home;  is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   And how was that?  What was that feeling like for you?

MS MITCHELL:   That was the best day of my life.

MS EASTMAN:   Why is that?  Just ‑ ‑ ‑

MS MITCHELL:   Walking in my front door ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ being free from the hospital?

MS MITCHELL:   ‑ ‑ ‑ and having both my children with me and sitting in my own chair without having anybody standing around telling me, you know, “Do this, do that,” or watching or poking and prodding and no machines and it was so good.

MS EASTMAN:   But it wasn’t too long ‑ ‑ ‑

MS MITCHELL:   No.

MS EASTMAN:   ‑ ‑ ‑ before you had to be back at Toowoomba Hospital and that was in September 2000.

MS MITCHELL:   Yes.  No, it was the Prince Charles we ended up in.

MS EASTMAN:   Right. 

MS MITCHELL:   Yes.

MS EASTMAN:   So when – you had to call cardiology in Toowoomba, but then you end up in Prince Charles;  is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   So there had been an issue in relation to Joshy’s heart.

MS MITCHELL:   Well, we knew – the first heart operation only replaced his aorta and closed his patent ductus.  It didn’t actually fix the inside of his heart.  So we knew he still had that heart condition.  When he was at the Toowoomba Hospital, before he was released to come home, a cardiologist had come up from Brisbane, the same one we’d seen neonatally – he’s very, very busy – and we had been ambulanced over with a nurse for our appointment.  And he came out, listened to him with a stethoscope, said, “said he sounds fine.  Go back,” and sent us back.  And I said to the nurse, “Is that it?”  And she said, “Yes, that’s it, I guess.”  And we went back to the hospital and that was it.  But, in September, Joshy was not good.  He was an awful colour and he was even – he was just really struggling, you know?  You just – he wasn’t right.  So I rang the cardiology and they said, “As it happens, we have a cardiologist in Toowoomba today.”  And they got us in as a final appointment.

MS EASTMAN:   Someone said to you, in terms of his hospital stay at Prince Charles, was, “If you go home, he’ll die.  If you stay, he will have a chance.”

MS MITCHELL:   Yes.  Yes.

MS EASTMAN:   How did that conversation come about?

MS MITCHELL:   The night before he actually went in for the open heart surgery, the surgeon came in and he said to me – he explained the whole process:  how his heart would be unattached from – detached from his body while they rebuilt it and he would be on bypass.  He had a complication of pulmonary hypertension because of the way his heart had been working up until that point.  And he said that – he said, “I can rebuild his heart.  I can do that.  No problem.  But when we reattach it to his body and he has to function alone, he will probably die.  It will be very quick.  It will be very painful.  There’ll be nothing we can do, but we will give it a go,” and then he left.  And I stood there for a second and then I picked Joshy up and I headed for home.  And as we got to the lift I bumped into one of his nurses and she said, “Where are you going?”  I said, “I’m going home.”  She said, “Why?”  And I told her what the surgeon had said.  And she said to me, “If you go home, he will die, and it will be soon.  You know, within a couple of weeks he will die, but if you stay and you have this operation he may live.”

MS EASTMAN:   All right.  So this is Joshy up to being a tiny baby in the first year of his life.

MS MITCHELL:   Yes. 

MS EASTMAN:   All right.

MS MITCHELL:   So he was four months old, which means, like, two months corrected.

MS EASTMAN:   Can I move you forward a little bit.  And you talk in the statement to Joshy’s early childhood.  And you talk about a lot of issues arising for him.  And I think it’s fair to say he has some very complex needs.

MS MITCHELL:   Yes.

MS EASTMAN:   And that, in his early childhood, there were a number of issues arising for you in relation to his respiratory care, lots of presentations in relation to hospital to deal with respiratory illnesses and the like ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ and fear of pneumonia.  Is that ‑ ‑ ‑

MS MITCHELL:   He would get ‑ ‑ ‑

MS EASTMAN:   I’m trying to get a fair summary of what you’ve got.

MS MITCHELL:   Every time he got a bit of a sniffle it would end up being pneumonia.  It would settle very quickly into his lungs, so he had a lot of admissions to deal with that.

MS EASTMAN:   He also started to develop, as a child, some hearing difficulties and problems as well.

MS MITCHELL:   Yes.

MS EASTMAN:   What do you ‑ ‑ ‑

MS MITCHELL:   We knew that ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ want to tell the Royal Commission about that?

MS MITCHELL:   ‑ ‑ ‑ he – right from the word go, we knew he wasn’t hearing very well.  And when he was about six and a half, seven months old he had his first brainstem test, where they identified he had significant hearing loss.

MS EASTMAN:   All right.  There reached some point in time where you had some clearer diagnosis of the extent of Joshy’s complex needs and also some diagnoses of what you describe in the statement as his disabilities. So this is paragraph 8 – if we go back to paragraph 8 – that you had a diagnosis for Joshy of autism ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ in addition to Down syndrome.

MS MITCHELL:   Yes.

MS EASTMAN:   With the multiple other issues that you identify in this paragraph.

MS MITCHELL:   Yes.

MS EASTMAN:   All right. In terms of the process of diagnoses of these different disabilities at different times, was that essentially through the support of a general practitioner caring for Joshy on a continuous basis or, if not, how did ‑ ‑ ‑

MS MITCHELL:   No.

MS EASTMAN:   How did you come to each stage of these different diagnoses and who was involved?

MS MITCHELL:   When he was being admitted all the time for the pneumonias at the local hospital, the paediatrician in charge of the children’s ward had said we needed to get some specialists involved, because with all these pneumonia attacks he obviously had lung problems.  And we knew he had hearing – the hearing loss and that needed to be had a look at.  And he was still constantly constipated.  He would, every three days, he would have an enema to help him with that.  So we needed to see all of these specialists, but our GP at the time refused to give me any referrals, because you could only get – like, the Toowoomba hospital couldn’t refer us.  We had to get GP referrals – and she just refused.  She said, “No, I can handle this,” and she wouldn’t give me referrals.  Are you right?  So, eventually, I was so frustrated with not being able to move forward that I just refused to leave her waiting room quite loudly in front of all her other patients until she actually wrote referrals for me, which she did there at the counter and told us never to come back.

MS EASTMAN:   Come back. And you didn’t.

MS MITCHELL:   No.

MS EASTMAN:   And so then you went to the local clinic.

MS MITCHELL:   Yes.

MS EASTMAN:   But that meant that you didn’t have the continuity of care after ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ that. Is that right?

MS MITCHELL:   We – we – our original doctor had retired. And in looking for another doctor, there just weren’t any at the time, but then she took us on.  So – but when we left her, other clinics had come up by then.  So we were able to join other clinics without a problem.

MS EASTMAN:   Right.  And so in terms of your relationship with Toowoomba Hospital, you’ve had a lot of presentations over the years;  is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   And some of those experiences have been good but some of them have been quite startling, haven’t they?

MS MITCHELL:   Yes.  Yes.

MS EASTMAN:   And you talk in one occasion in paragraph 63 of your statement that in 2005 or 2006 that Joshy presented at the hospital for a skin complaint;  is that right?

MS MITCHELL:   Hang on.  Yes.

MS EASTMAN:   And what did the doctor say to you?

MS MITCHELL:   Joshy was in hospital because he had rosacea.  And when they came round – did their rounds they had the registrars with them.  And when he came up to Joshy’s bed he said, “Oh, here we have a mongoloid.”  And I was like, “No.”  And he said, “Oh, well, why don’t you tell us what’s here.”  And I said, “This is my son.  This is Joshy.  He has Down syndrome, and he’s here because he has rosacea.”  And he said, “Oh, and what is another name for that?”  And I said, “Slapped cheek.”  And he said, “And there’s a third name.  What is it?”  And I said, “I don’t know.”  And he said, “Well, if you don’t know the answers, don’t interrupt.”

MS EASTMAN:   Did you do anything about that?

MS MITCHELL:   No.

MS EASTMAN:   Why not?

MS MITCHELL:   I still believed in the system.

MS EASTMAN:   So Joshy is five or six ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ by this time.  One issue that arose a couple of years later – and, again, this is in the context of his respiratory care, and you talk about this in paragraph 64 – was a concern that Joshy might have cystic fibrosis.

MS MITCHELL:   Yes.

MS EASTMAN:   And what was the process in terms of investigating that issue and whether there was any diagnosis?

MS MITCHELL:   The – when we finally saw the respiratory specialist, he did some surgery on Joshy and found he had a number of conditions.  He said they were very common with cystic fibrosis and it looked like cystic fibrosis, and he would look at – he would look at that down the track.  And then we were discharged and sent home, which is really hard to drive home with.  But when we got home I spoke to his paediatrician about it, and he immediately did a sweat test to check.

MS EASTMAN:   All right.  So, Commissioner, I’m conscious of the time.  Perhaps if we can continue for another 10 minutes or so and then have a break, and then we should be able to make sure that Toni makes the plane in time.

COMMISSIONER SACKVILLE:   Sure.

MS MITCHELL:   It’s a long walk.

MS EASTMAN:   All right.  So the next significant issue that you want to talk about is that for Joshy, his bowels and intestine are a very significant feature of his life ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ and a very complex area in terms of management.  So you wanted to tell the Royal Commission a little bit about the process of that diagnosis, but also how that has been managed from the perspective of a young man with cognitive disability.

MS MITCHELL:   Yes.

MS EASTMAN:   So what would you like to tell the Royal Commission about that?

MS MITCHELL:   Well, when we ended up in the Neonatal Intensive Care Unit and he was constipated and they couldn’t operate on his heart because of that whole instability unstable, they did get a bowel specialist to come in, and he said, “I suspect it’s Hirschsprung’s disease so I’m going to remove his bowel and give him a bag.”  And I said, “How sure are you?”  And he said, “Oh, about 95/96 per cent.”  And I said, “I would really like you to be more sure before you do something so significant to him.”  And so he took him in and he did a suction – one suction biopsy which, in a premmie baby, is super tiny, and it came back negative.  He said, “It came back negative.  It’s not Hirschsprung’s disease.”  And I never saw him again.  So – and that was the end of that.  Even though he was still getting constipated all the time, they just started giving enemas, that’s how he sent him home, and that’s what we were managing with plus other medicines to try and keep him going.  But his whole life, he was just filling up and in enormous pain.

When I finally got those referrals to specialists, we started seeing a gastroenterologist at the Royal Children’s, but she never once actually examined him.  The first time she walked in, she looked at him across the room in his pram and said, “Well, he has Down syndrome.”  I said, “I know.”  And she said, “Well, they have low muscle tone.  He’s just being lazy.  Give him so many sachets of Movicol a day.”  And for the next five years, that continued.  She never once examined him.  She never once investigated anything further.  She just dismissed him with Down syndrome and gave him more and more medicine.  So by the time we finished seeing her, he was on 10 adult sachets of Movicol a day and still not going.

MS EASTMAN:   Now, you talk about Joshy having 14 years of agony because of ‑ ‑ ‑

MS MITCHELL:   Yes.  They wouldn’t help him.

MS EASTMAN:   ‑ ‑ ‑ that misdiagnosis very early on.

MS MITCHELL:   Yes.

MS EASTMAN:   And you talk about not being able to see past the Down syndrome to actually look and understand what might be the issues in relation to his abdominal and bowel complaints;  is that right?

MS MITCHELL:   Yes.  When we finally did get to see another specialist, they constantly looked at the Down syndrome before anything else.  They – and then when they did look further they would say, “Well, he had this biopsy done and it was negative”, and say, “So it’s not Hirschsprung’s, so it is just him being lazy and low muscle tone.  He’s just not working properly.  Give him more medicine.”  And he was just – he wasn’t going.  He was getting six weeks of constipation.  He would be in so much pain he couldn’t walk, he couldn’t eat, he couldn’t move because he was so full and in so much pain he would cry all the time.  And they would still do nothing.  And I would take him to hospital at six weeks and they would do a manual evacuation and then send us home and never look further.  So even though we were there every six weeks for them to operate and manually empty him, they never, ever looked any further to see why.

MS EASTMAN:   But he did eventually have some colorectal surgery;  is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   So when did that happen?

MS MITCHELL:   That happened in 2014.

MS EASTMAN:   Right.  So that’s not – so that’s – he’s well and truly a teenager by then.  Is that right?

MS MITCHELL:   Yes.  Yes.

MS EASTMAN:   All right.

MS MITCHELL:   And that was because I went private.

MS EASTMAN:   I want to ask you about that at the moment – in a moment.

MS MITCHELL:   Yes.

MS EASTMAN:   But just in terms of the surgery and the impact of that surgery on Joshy’s life in terms of his quality of life.

MS MITCHELL:   Well, in the lead-up to that surgery happening, they did a lot more other surgeries to – before they did the big one, they were hoping that the other surgeries might be enough intervention to fix things.  They gave him a Foley, then they gave him a Chait, and we were doing washouts and things, and they weren’t working.  So eventually, they did deep-strip biopsies in numerous places and they did a contrast study, and that contrast study showed such significant deformities that it was – nothing was ever going to work.  And ‑ ‑ ‑

MS EASTMAN:   Was the surgery the only option at that point, then?

MS MITCHELL:   That was the only option left.

MS EASTMAN:   All right.  And so then that was the big surgery.

MS MITCHELL:   And that’s when they said, “Oh, no, this is Hirschsprung’s disease.”  He was misdiagnosed.  They didn’t do an extensive enough test when he was born.

MS EASTMAN:   All right.

MS MITCHELL:   And that’s when they finally did the major surgery and took – took some bowel.

MS EASTMAN:   All right.  So I might just ask you now about the public/private issue and what arose, and then we might have a break.

MS MITCHELL:   Okay.

MS EASTMAN:   And then we’ve probably got a little bit more that we need to go through, but it might be another half an hour or so.  So we will make appropriate arrangements if that’s convenient to the Commission.

COMMISSIONER SACKVILLE:   Yes.

MS EASTMAN:   All right.  So let’s deal with the public/private.  So for the most part, the early part of Joshy’s life was engaging with private – sorry, the public ‑ ‑ ‑

MS MITCHELL:   Public.

MS EASTMAN:   ‑ ‑ ‑ system ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ in Toowoomba.

MS MITCHELL:   Yes.

MS EASTMAN:   And ‑ ‑ ‑

MS MITCHELL:   And the Royal.

MS EASTMAN:   ‑ ‑ ‑ you reached a point of frustration either locally, but also you were travelling to the public system in Brisbane from time to time.

MS MITCHELL:   Yes.

MS EASTMAN:   But something happened for you to say, “I need to make a very significant change here”, and you wanted to move into the private system.  And you’ve talked about this throughout your statement, but do you want to tell the Royal Commission why, and then what was the experience moving into a private hospital setting?

MS MITCHELL:   Well, he had been having these six-weekly manual evacuations, and them not following through or doing anything further.  But also, they – when they did do them, when they finally got things to come out, whoever was at the end would often get a bit covered, and they would come out of theatre and I would be sitting in the waiting room and they would walk past me laughing and joking about, “Oh, we got so and so to stand at the end this time.”  And it was a joke.  He was a joke.

MS EASTMAN:   That was humiliating, wasn’t it?

MS MITCHELL:   It was awful, because they weren’t taking him seriously and they didn’t care.  They were just setting another doctor up for a joke.  And they never ever talked to me afterwards about, “You’re here a lot.  This is happening a lot.  Maybe we should do something else.”  Nobody cared.  They were just doing what they had to do to send us home again.

MS EASTMAN:   So you got to a point of saying, “I’ve had enough of this.”

MS MITCHELL:   “This isn’t enough.”  He ‑ ‑ ‑

MS EASTMAN:   “I need to have an alternative.”  Is that right?

MS MITCHELL:   He had no life.  He couldn’t move.  He couldn’t eat.  He was in so much pain and nothing was working, and he was having all this medicine, all these constant surgeries and he wasn’t – nothing was helping him.  And I was like, “We – this isn’t enough.”  So we went private.

MS EASTMAN:   Okay.  And what was the experience in the private hospitals?  Did you notice any material change or any difference?

MS MITCHELL:   Everything.  They – the – the unit we went into, which no longer is there, unfortunately, was amazing.  The nurses were beautiful.  They were really nice to us and they couldn’t do enough to help us.  And when I would be frustrated with the doctors saying, “Oh, we will try this test”, and I would say, “Well, you know, that – that – that level of medication didn’t work so a lower dose isn’t going to work”, or if I felt like I wasn’t being heard, I could talk to the nurses and – you know, they would often walk in and find me crying in the shower and they would wait till I came out and they would check on me, and then I would say, “You know, I need you to help me advocate.”  And they would, because they would actually go in and say, you know, “We need to look more, you need to hear Toni and hear what she’s saying about what’s happening with Joshy at home.”  And they were great.  And that’s when the doctors actually started doing those other tests, giving him the Foley and doing the deep-strip biopsies and things and actually started to try and find an answer.

MS EASTMAN:   All right.  So we might have a break here, and then perhaps we can let the Royal Commission and those following the webcast know when we will resume.  It might need to be a little earlier than 2 pm if that’s convenient.

COMMISSIONER SACKVILLE:   How long do you suggest?

MS EASTMAN:   I think if we can perhaps start at quarter to 2, if that’s sufficient time.  So that gives us half an hour for lunch.  And then that will give Toni and Joshy sufficient time to be able to make their arrangements back to the airport and to home.

COMMISSIONER SACKVILLE:   Is that okay with you?

MS MITCHELL:   Yes.  Yes.  I think we ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Okay.  We will come back at ‑ ‑ ‑

MS MITCHELL:   ‑ ‑ ‑ just have to leave about 4.

COMMISSIONER SACKVILLE:   ‑ ‑ ‑ 1.45.  Thank you.

ADJOURNED                                                                                                                    [1.12 pm]

RESUMED                                                                                                                    [1.48 pm]

COMMISSIONER SACKVILLE:   Yes.  Ms Eastman.

MS EASTMAN:   Thank you, Commissioners.  So, Ms Mitchell, I think before lunch we were talking about the private/public issue.

MS MITCHELL:   Mmm.

MS EASTMAN:   And one matter you wanted me to bring you back to was the interaction with the Lady Cilento Hospital – Children’s Hospital;  is that right?

MS MITCHELL:   Yes, yes.

MS EASTMAN:   So is this the part that’s covered in paragraph 93 and following of your statement?

MS MITCHELL:   Yes.  Pretty much from 94.  Yes.

MS EASTMAN:   All right.  So, again, the Commissioners have read this part of your statement.

MS MITCHELL:   Mmm.

MS EASTMAN:   What would you like to tell the Royal Commission in relation to the issues that arose in relation to this particular hospital?

MS MITCHELL:   Okay.  At – at this hospital, Joshy was treated very badly.  He was – we were back in the public system and he was not treated equally as other patients.  The nurses would constantly get mad at him and snap at him.  He wouldn’t get the treatment he needed on time, and he was constantly put off when he needed surgeries or, when surgeries were done, they were actually incorrectly done.  And I have a thing here – I’ve got an incidence here where he had surgery and I wanted to share with you my immediate thoughts when we got home from the hospital ‑ ‑ ‑

MS EASTMAN:   All right.  So just pausing there ‑ ‑ ‑

MS MITCHELL:   ‑ ‑ ‑ on what had happened.

MS EASTMAN:   So you have used your Facebook page and your social media a little bit like a diary ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ in terms of recording events that occurred.  And you’ve had a chance to have a look at that, and that has helped you remember ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ your thoughts and the experiences that you recorded at the time.  And you wanted to read that out.

MS MITCHELL:   Just this one.

MS EASTMAN:   And you provided the Royal Commission with a copy of that particular page.

MS MITCHELL:   Yes.

MS EASTMAN:   All right.  So go ahead.

MS MITCHELL:   Okay.  So this is dated December 8^th 2016:

Well, we’re home and I’d say worse for wear.  On Tuesday, Joshy was admitted to hospital to have a button inserted into his tummy to replace the NG tube and to get permanent grommets inserted, his adenoids removed again another and a haemorrhoid removed.  Josh had started fasting at 8 am, but now because he’s the oldest on the list and it was a big surgery, he was last on the list.  At 2.30, he went into the holding area, where he was dressed for theatre and given his pre-op meds.  They didn’t give him his usual dosage so, although he went to sleep, he didn’t stay asleep.  He went into theatre with the doctors and I talked about everything they were going to do.  Then I had to ‑ ‑ ‑

MS EASTMAN:   Okay.  Can I ‑ ‑ ‑

MS MITCHELL:   Slow down?

MS EASTMAN:   ‑ ‑ ‑ just stop you there.  You know what I’m going to ask you.  Can you slow down a little bit?

MS MITCHELL:   Yes.  Sorry.

MS EASTMAN:   And we’re in no – as I understand it, we’re no rush.

MS MITCHELL:   Okay.

MS EASTMAN:   Our 2.30 deadline is a little flexible, so take your time.

COMMISSIONER SACKVILLE:   I think they have – yes.

MS MITCHELL: 

We went into theatre and the doctors and I talked about everything they were going to do.  Then I had to hold him down, while we both cried, and as they put

   the mask on his face for him to go under the general anaesthetic.  If they had given him the right dosage, he wouldn’t have woken up and fought it.  I kissed him goodbye at 3.30.  I then took our bags up to his room in the ward, grabbed a cuppa, as I fast when he fasts, and took up my waiting place outside post-op.  At 5.15, I received a phone call from the surgeon saying it was over, but I didn’t get into recovery for ages even though he was awake.  He was crying and disorientated and looking for me when I got there.  And when I got to him, he grabbed me and wouldn’t let go.  The nurse was there to escort him up to the ward. 

By 6.30, he was in his room.  He was in intense pain.  I was in shock.  His tummy did not look how it was supposed to.  Instead of a button, he had a huge tube coming out of his tummy.  The nurse was very rude to me and snatched all his medicines away.  An intern came in to write up his meds.  He refused to give Joshy the pain meds he needed and prescribed a dosage less than what he has every day of his life.  So Joshy spent the night crawling around the bed in excruciating pain crying, screaming and moaning.  The doctors refused to listen to me.  They didn’t give him any fluids. 

The next morning, this couldn’t continue.  I asked for his pain team to come to the ward.  They came around midday and finally prescribed a dosage of morphine that would help Joshy, but he still had no fluids.  The surgical team called by.  They had not done the button, because it was easier for them to do the tube.  In fact, surgical did nothing – gastro did the tube – and they didn’t remove the haemorrhoid.  Gastro didn’t come by at all.  ENT dropped by late in the afternoon and confirmed they had finally put the right grommets in his ears.

I wrote that, because earlier in the year, they had done a surgery to put grommets in and they put the wrong ones in, even though I had signed off on the other – the other ones.  They had finally put the right ones in:

After that, they found he had deformities in his eardrums so they might not actually work.  Good to know.  Joshy was dehydrated.   He was disorientated and he couldn’t stand.  He was white.  He couldn’t speak.  He was so dry.  I was beside myself because no one was listening or helping him.  At midday, the nurse unit manager came into my room and gave me a brochure and told me to read it.  It was Ryan’s rule.

MS EASTMAN:   All right.  Can we pause there?  So, in terms of the brochure and what is Ryan’s Rule, can you assist the Commission in terms of what Ryan’s Rule means or refers to?

MS MITCHELL:   What I understand is if we feel our children aren’t getting appropriate care, we can call Ryan’s Rule and that means they have to be reassessed by someone else to – and to get the appropriate care that they can get.

MS EASTMAN:   All right.  So is your understanding of Ryan’s Rule that it involves a three-step process to support patients and their families to raise concerns if a patient’s health condition is getting worse or not improving ‑ ‑ ‑ .

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ as well as expected.  And this is a rule that applies to all patients admitted to Queensland Health public hospitals?

MS MITCHELL:   Yes.

MS EASTMAN:   And the rule was developed in response to a death of a young man, I think Ryan Saunders, in 2007;  is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   And the steps involve an escalation process.  Step one is to talk to a nurse or doctor about particular concerns.  And if you’re not satisfied with the response that you get you then go to the next step;  is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   Step two is to talk to the nurse in charge of the shift.

MS MITCHELL:   Yes.

MS EASTMAN:   And if you’re not satisfied with the nurse’s response, you can then go to the next step;  is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   And the third step is to make a telephone call to a particular telephone number and request a Ryan’s Rule clinical review;  is that right?

MS MITCHELL:   Yes.

MS EASTMAN:   So, in terms of the steps that you took to invoke the Ryan’s Rule – and I know you’ve got a lot of detail in this note – what did you actually do?

MS MITCHELL:   Well, I had been asking the nurses since we got to the ward for fluids and for medicine.  The doctor that was on when he got admitted refused to write up either that he needed.  When he finally did get some written up, he still didn’t have the fluids written up and the pain medicine wasn’t written up until – when they came, it was actually after this had been called.

MS EASTMAN:   Okay.  And what was the outcome of you invoking the Ryan’s Rule process?

MS MITCHELL:   He – he was reassessed, and he was finally put on fluids and given the correct amount of pain medication.

MS EASTMAN:   Does that cover the issues that you wanted to talk about in relation to Lady Cilento Hospital?

MS MITCHELL:   Well, it – it does.  You know, we – numerous times did incorrect surgeries.  They didn’t record things in his file properly and they justified their – they wouldn’t correct things when I asked them to correct.  When I questioned them about why they did the wrong things, it was done because it was more convenient for them without talking to me about it at all.  And even before surgeries, you have to explain to numerous people what the surgeries are for.  You have to sign off on it three times before they go in.  And then he comes out with something completely different.

MS EASTMAN:   Okay.

MS MITCHELL:   And each time it meant that he would then have to go back for another surgery to fix it.

MS EASTMAN:   How did you find this personally in terms of both being a support for Joshy and an advocate for his care?

MS MITCHELL:   I would – I would be torn between being devastated and furious because I knew what it meant for Joshy, I knew they hadn’t helped him, they had made things worse.  I knew he would have to have more surgery, and I would be so angry because they had completely ignored his needs and what I had signed off on.  So – and the doctor who screwed up his grommets – sorry, who put the wrong grommets in, she just – she didn’t even know him.  She didn’t even write his – read his file.  She hadn’t been part of any of the conversations before.  She was just the surgeon on the day, and she decided that’s what she was going to do.

MS EASTMAN:   What access have you had over the years to Joshy’s medical records?

MS MITCHELL:   At the end of every couple of years I do an FOI request and get everything that I possibly can.

MS EASTMAN:   And other than that process, have you been provided with copies of any records or reports routinely?

MS MITCHELL:   Only when I’m asked.

MS EASTMAN:   So ‑ ‑ ‑

MS MITCHELL:   When I – when I ask.

MS EASTMAN:   So you ask but not – it is not offered to you.  Is that right?

MS MITCHELL:   No, not at Children’s, it wasn’t.

MS EASTMAN:   Right.  And is it your practice to ask all the time?

MS MITCHELL:   All the time.

MS EASTMAN:   All right.  And in terms of – I think you say something in your statement about the work that you’ve had to do to do research and understand.  I think you say you go well beyond Dr Google.

MS MITCHELL:   Oh, yes.

MS EASTMAN:   So you’ve really started to look at these issues in some detail.  How has the research that you’ve done helped you navigate through the clinical records that you receive from time to time?

MS MITCHELL:   It’s helped me – when the doctors do come in to talk to me, some – some – often get doctors who will talk over you.  They – I feel like they’re trying to bamboozle me with their complicated terms, so I will just nod my head and say “okay” and I can go away and they don’t have to deal with us any further.  So I do a lot of research so I know what they’re talking about, and I have questions that I expect answers to.

MS EASTMAN:   And how do you go asking those questions and ‑ ‑ ‑

MS MITCHELL:   I ask them and then they go, “Oh, did you understand what we said?”  “Yes.  Yes, I did.”  So I do a lot of research.  In the process of leading up to his bowel condition finally being diagnosed, all I did was research because we had no answers and the doctors didn’t have any answers, and they – they tried all these different things and they weren’t working.  So I was constantly reading journals and latest studies and reports and from all over the world trying to find something that we could find an answer for Joshy to relieve him of this pain.

MS EASTMAN:   How do you get access to all of this material?

MS MITCHELL:   Through links and following things on the internet, and looking for the – through medical journals.

MS EASTMAN:   All right.  And have you had anyone to sort of help you walk through ‑ ‑ ‑

MS MITCHELL:   No.

MS EASTMAN:   ‑ ‑ ‑ all of the medical material?  So someone as a little bit of a pilot on any of the technical matters.

MS MITCHELL:   No.  No, I’ve done that myself.

MS EASTMAN:   So just a process of informing yourself.

MS MITCHELL:   Yes.

MS EASTMAN:   Learning and understanding.

MS MITCHELL:   Yes.

MS EASTMAN:   Okay.  Can I ask you now about Joshy’s condition at the present time.

MS MITCHELL:   Yes.

MS EASTMAN:   So he’s now an adult.

MS MITCHELL:   Yes.

MS EASTMAN:   What were the arrangements for him in terms of that transition from paediatric care into adult care?  Was there anything in particular?

MS MITCHELL:   To transfer over – because he has a lot of specialists – each specialist in the Children’s needed to send a referral to the adult’s, to their counterpart to refer him over.  And then after he had seen the adult one, they would require another referral from our GP.  It was a two-year period where we continued to see both as he gradually aged out from 16 to 18, he continued to see paediatric and adult doctors.  The adult doctors did not have access to his Children’s records, so the only records they got were mine through FOI.

MS EASTMAN:   Right.

MS MITCHELL:   They weren’t able to access the Children’s Hospital ones.  And some of the Children’s specialists refused to write me referrals.  So he still hasn’t seen his counterpart in the adult’s.  Some we have only just started to – we saw for the first time just recently.

MS EASTMAN:   And has anybody explained to you what the nature of that transition will mean in terms of the management and care of Joshy through his adult life?

MS MITCHELL:   Well, I’m – no.  No.

MS EASTMAN:   What ‑ ‑ ‑

MS MITCHELL:   I’m just managing it all myself.  I know who his specialist – which specialists he needs to see, and I just keep on making – trying to get referrals so he can see the ones he needs to see and keep up with all his appointments so the ones he’s already got we can continue with.

MS EASTMAN:   And, as I understand it, that’s pretty much your full-time job, isn’t it?

MS MITCHELL:   Yes.  Yes.  Yes, and ‑ ‑ ‑

MS EASTMAN:   So there’s not much space or time for you to do much more than just manage Joshy’s care.

MS MITCHELL:   I – that’s my – that’s all I do.

MS EASTMAN:   Okay.  In terms of his condition now, this is set out in paragraph 101 of the statement, and you say there that he now – he has had two admissions since his move from paediatric care.  Is that right?

MS MITCHELL:   Well, he’s actually just had three, because he had surgery last Thursday.

MS EASTMAN:   He had surgery last Thursday, didn’t he?  So – I forgot about that.

MS MITCHELL:   Yes.

MS EASTMAN:   Thanks for reminding me.  So three admissions in terms of care.  In terms of your experience with Princess Alexandra Hospital, have there been any issues that you want to raise with the Royal Commission?  And I know you’ve set some of them out in this part of your statement, paragraph 102 and following.

MS MITCHELL:   Yes.  I think the transition is very difficult, especially when they don’t have access to his files from children.  That has made things even harder.  I’ve found it quite difficult to get them.  Even as children’s, I actually found it very hard to get the specialists to look beyond their specialty.  They would look at one part of his body.  And even if they’re looking at one organ, they’re still only looking at one part of that organ, and they don’t talk.  So that little bit is all they focus on and they don’t look at the bigger picture.  And so it’s me looking at the bigger picture and trying to put all these things – sorry, pull all these things together to get a big picture of what’s going on.

MS EASTMAN:   And what’s your expectation for him into the future in terms of that being a viable way of managing his care through you?  Would you like that to change at all into the future?

MS MITCHELL:   It would be good to have someone helping me on the inside.  That sounds – if there was someone at the hospital who could be advocating for us for – so going to the other specialists.  My ideal would be to get them all in one room at the same time and have a big roundtable where they could all hear all the different things that are going on and try and put it together into the one body, but that’s not going to happen.  But if there was somebody on the – in the hospital who was able to advocate on his behalf with the doctors and say, you know, “Well, we did this test. 

How might that apply in your area?”, or, you know, “You haven’t looked at this and this is something that, you know, you need to be looking at further”, that would be excellent.

MS EASTMAN:   Is your concern into the future that in the absence of that type of coordinated plan and coordinated action that the care for Joshy as he becomes an adult and into the future is going to be piecemeal?

MS MITCHELL:   It’s just – it’s all over the place.  It’s very staggered because they’re not working together.  So – and we’re getting, you know, treatment here – it’s just – it’s all over the place.  And if they’re not working together, then it’s not – it’s very hard to manage.

MS EASTMAN:   What about issues around preventative health care?  So before things become acute and requiring an admission to hospital for surgeries or emergencies, have you had any advice and assistance on preventative health care and measures that you can take to manage some of the complex issues?

MS MITCHELL:   Well, I do everything at home, so – and we – our GP visits him every week.  So he’s constantly checking on him.  And if he thinks anything’s not right, then ‑ ‑ ‑

MS EASTMAN:   Okay.

MS MITCHELL:   ‑ ‑ ‑ he sends us straight to the hospital.

MS EASTMAN:   One issue that you raise in relation to Joshy’s care as an adult is the need for a referral to the Persistent Pain Clinic.

MS MITCHELL:   Yes.

MS EASTMAN:   And you talk about this at paragraph 105.  And are we right in understanding that managing his pain on an ongoing basis is a matter of some significance for you?

MS MITCHELL:   Well, it affects his whole life and it affects his ability to be able to participate in life, because when he’s in enormous pain he can barely move, and so we – we did finally get a referral to the Persistent Pain Clinic in Brisbane, and they were great, but their services are very limited to the Brisbane district.  They don’t reach Toowoomba.

MS EASTMAN:   But in terms of reaching Toowoomba, your contact point is through palliative care;  is that right?

MS MITCHELL:   Yes.  So we did see them last year and they said that because he’s not at end of life yet, there wasn’t anything they could do.  We did have an appointment with them just recently and they have just started Blue Nurses seeing

him, which we weren’t actually eligible for because he’s not at end of life, but they have started it to help him manage because he’s deteriorating.

MS EASTMAN:   When you say “he’s deteriorating”, in what respect?  In terms of just overall health or ‑ ‑ ‑

MS MITCHELL:   Overall, his health is ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ any particular issue.

MS MITCHELL:   Is getting worse.  And his – the different complex health medical conditions he has are deteriorating.  And as one thing gets worse, it dominos on to another thing and it gets worse.

MS EASTMAN:   You’ve got a few suggestions about how things might be better, perhaps not for the experience that you and Joshy have had but maybe for others.

MS MITCHELL:   Yes.

MS EASTMAN:   And I think part of what you’ve sought to do is to help other people understand what issues arise, to understand the experience and to guide them in the right direction.

MS MITCHELL:   Yes.

MS EASTMAN:   So that has been a very important part of your advocacy as well.  And I think that that’s taken you to actually go into Toowoomba Hospital and do some training with some of the younger medical practitioners;  is that right?

MS MITCHELL:   Yes.  So for ‑ ‑ ‑

MS EASTMAN:   Okay.  So do you want to tell the Royal Commission a little bit about that.

MS MITCHELL:   ‑ ‑ ‑ the last five/six years, once a year Joshy and I run a class at the hospital with the registrars and I teach them about Down syndrome, because they don’t actually do lessons on disabilities.  So when I start, I say to them, “Tell me what you know.”  And they’re mostly silent.  I will get an, “Oh, it’s a chromosomal abnormality, Trisomy 21”, and that’s pretty much the extent of what they know.  And so we run a class and we give them in-depth teaching into Down syndrome, what it is, the different kinds of Down syndrome there are, and how that can affect their body.  I also emphasise to them some of the experiences that we’ve had, so try and make things better for their future patients.  So we talk – do you want me – yes.

MS EASTMAN:   One thing you try to do is to encapsulate in a fairly sort of graphic way ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ for the registrars to be able to see past Joshy’s Down syndrome ‑ ‑ ‑

MS MITCHELL:   Yes.

MS EASTMAN:   ‑ ‑ ‑ and actually look at his medical issues.  And you’ve used a photo.

MS MITCHELL:   Yes.

MS EASTMAN:   The Royal Commissioners have seen the photo, and we won’t display it, but how have you found that the practitioners have reacted when you’ve used ‑ ‑ ‑

MS MITCHELL:   It’s ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ some pretty graphic imagery to make the message loud and clear?

MS MITCHELL:   It’s very powerful.  One of the biggest hurdles that Joshy and I have experienced his whole life is people dismissing him with the Down syndrome.  We would go to emergency and they would go, “Oh, he has Down syndrome.”  Like, we know, but there’s more.  But because they could see the Down syndrome, that would be the end of their examination.  And so they missed so much.  So when I’m talking with the doctors, I have a photo of Joshy fully dressed and beautiful as ever, and I hold it up for them and say, “What can you see?  Diagnose what you see.”  And they say, “Oh, he has Down syndrome.”  “What else?”  And they go, “Down syndrome.”  And so then I flip it.  And in the next photo he’s just in a nappy and you can see his heart scars, you can see his ileostomy bag, you can see he’s in a wheelchair, you can see his oxygen, his hearing aids and things.  I say, “Okay.  Now what can you see?  What’s beyond the Down syndrome?”

And after we go through that and they’ve listed as much as they can see from that, I say, “And what else do you think beyond that?  What do you think else could be going on?”  And then we start to talk about autism and other stuff going on that – and – and I said, “So if you just looked at him and you saw the Down syndrome, look at what you’re missing.”  And – and that is – it makes a huge difference.  You can see on their faces that it’s making a huge impact in the way they’re thinking, and that’s – I emphasise to them, “Please, do never – Down syndrome is a symptom of what’s going on.  It’s not the answer.”

MS EASTMAN:   Did you ever expect that you would end up in the role of educating the very people ‑ ‑ ‑

MS MITCHELL:   No.

MS EASTMAN:   ‑ ‑ ‑ who you ask for care for Joshy?

MS MITCHELL:   No.  No, I didn’t.  But it was something that needed to be done, and so we do it.

MS EASTMAN:   Okay.  I want to turn just finally to a few things in terms of suggestions.  But I wondered whether you wanted to read paragraph 120 and 121.

MS MITCHELL:   Okay:

I am so tired, as all I have done for 20 years is fight for Joshy.  A lot of it has involved fighting people who are supposed to help him.  I know that I probably have a reputation as being a problem mother, but this is just because if things don’t get done for Joshy that he desperately needs, I get upset.  Joshy is a fighter too.  There have been so many times when Joshy has been fighting for his life because doctors have not examined him or have just dismissed him because of his disabilities and his complex health needs.  I shouldn’t have to be fighting.  I shouldn’t have to be saying, “It’s more than the Down syndrome.”  I shouldn’t have to be ringing over people’s heads or calling in Ryan’s Rules.  I shouldn’t have to be doing this.  Joshy should be treated as an equal, as worthy, as any other person should be.

MS EASTMAN:   Okay.  And so you’ve made a few small suggestions in your statement at paragraph 122 and 123.  But since preparing your statement, you’ve been thinking about a few other things that you wanted to expand on.

MS MITCHELL:   Mmm.

MS EASTMAN:   And you wanted to tell the Royal Commission about some suggestions that you think might improve outcomes for people like Joshy, but also for Joshy himself as his life goes on and he becomes an older man.  So what did you want to tell the Royal Commission?

MS MITCHELL:   Okay.  So the Human Rights Declaration says people with disabilities have the right to be treated equally and an equal right to services, but this is not happening.  Our children are considered less than a burden, not compatible with life, not worth any effort, and are dismissed because disability is seen as a negative.  Over and over, they are dismissed, overlooked and neglected and put on the too hard basket. 

The training is insufficient.  They don’t know what disabilities are and they don’t know the big picture.  They just know names.  They don’t have the understanding of autism and intellectual cognitive disabilities to be able to talk to them and in an appropriate way and to understand what they’re trying to say and how they’re processing what is being said to them.  They’re not accepting that disability is okay.  They see disability as wrong and they just want to eradicate it, and that’s awful.  If we didn’t have people with disabilities in our world, it would be such a more

negative place to live.  They bring so much beauty to our lives.  And, in the medical system, it’s all about good health and they just want to eradicate our people. 

They need timely and appropriate care, not to be left sitting in emergency because they’re going to be difficult.  They need to be having their operations on time and not put off and put off and put off and left to the mothers to be ringing up, screaming and lodging complaints and reports, to get these operations done, but to be done when they should be done.  They need to look beyond the Down syndrome.  And they need to work with others and other specialists in looking at the big picture and not at their own little part of the body. 

Doctors focus on one area and don’t look at the big picture, and getting them all in one room is impossible.  Files, we have to take with us everywhere.  I have to go through FOI to get all these files so I am prepared, when I go in to talk to the doctors, I have the proof written there.  But that’s not always right, because they will write reports that are completely incorrect and when I ask them to be corrected they say, “No, it’s okay.  It’s in the report now.  It will be fine.”  But then when we go to see another specialist they say, “Well that’s what’s in the report, so that’s what we have to go with.”  So this is what we’re dealing with is doctors who aren’t doing accurate reporting and then aren’t correcting their mistakes.  And that makes it harder for Joshy to be treated accurately and appropriately because they’re not recording and following through. 

They aren’t listening.  So when we tell them – we’re not doctors, but we are experts in our children and we – when we say this is not right, we know it’s not right, and they need to listen to that and take it seriously and not dismiss us as tired, over-emotional parents.  We know our children and all we want for them is to be well.  We’re begging for help and we shouldn’t have to be.

I am that mother.  I am the mother that they talk about.  I – to get Joshy seen I had to become “that mother”:  the nagger, the yeller, the complainer, the swearer, the constant phone caller, emailer, photo-taker and report-maker, the fighter.  The one that nurses roll their eyes at and dread getting on their list, because I will supervise, correct, argue and yell.  I am that mother.  I wasn’t that mother, because I trusted the doctors and the system.  If I didn’t become this mother, Joshy would be dead.  I wish I had become that mother sooner, because then he wouldn’t be suffering like he is now.  He would have been seen sooner.  I am that mother.  I had to become her so Joshy would get the care he needs and deserves and has a right to.  And the hospital system made me this mother.

MS EASTMAN:   Toni, can I ask just about you.  So you raised Joshy by yourself.

MS MITCHELL:   Yes.

MS EASTMAN:   And your support networks are with your church and your broader online community.

MS MITCHELL:   Yes.

MS EASTMAN:   And there may be many people watching the hearing today at the Royal Commission, who also use that online community as a very important source of information and support.  And I think you told me yesterday that this might be something that you would like to sort of share so that your experience in being able to connect with others has helped you and given you support.

MS MITCHELL:   Absolutely.

MS EASTMAN:   Do you want to talk about that?

MS MITCHELL:   Our Facebook connections with other people all around the world has been of enormous benefit.  I’ve been able to talk to other parents going through similar situations who shared outcomes they’ve had, which I’ve been then able to research and take back and say, “Have you looked at this?  This is what they’re doing in England.  This is what they’ve tried in America.  Are we doing that here?  Do you think this could be a possibility?” 

I have been able to talk to other parents who have gone through or are going through, or, when we’re going through, they’re there.  You know, when I wrote that report on my Facebook page, and even when we were in hospital and going through things, we had so much support from our online support group of people, you know, encouraging us and being there for us, praying for us.  And it’s invaluable, the support, knowing you’re not alone.  Before Facebook, I was totally alone.  I didn’t have any support.  We were totally isolated.  We couldn’t go out, because of low immunity.  There was no computer connection.  And people forgot you existed. 

Someone actually said to me, “Out of sight, out of mind.”  So if we didn’t get out people just forgot we were there.  So, once this came in and, you know, I figured out how it works – because I’m not very good with computers – it was – it’s opened up a whole new world.

MS EASTMAN:   Okay.  And that’s something that you wanted people to know.

MS MITCHELL:   Yes.

MS EASTMAN:   I think – you heard Rachel Browne earlier saying, “Please don’t think that the things I’m talking about mean don’t go and ask for help.”

MS MITCHELL:   Yes.

MS EASTMAN:   And I think you wanted to also say to people the things that you’ve talked about that, if there’s some glimmer of hope or strength, it’s in that broader online community;  is that right?

MS MITCHELL:   Yes.  We are a very, you know, broad group across the world, but we are also a very tight group and we support each other very much.  And, yes, it’s very important as – it was amazing this, today and yesterday, to meet family – mothers from the Down syndrome community that I’ve known online for a very long time but finally got to hug their body and say “hi” in person, and you feel like you’ve known them forever because we’ve shared so much together.

MS EASTMAN:   Toni, thank you very much for coming to tell the Royal Commission about your experience and thank you also to Joshy, who I think is having a little break ‑ ‑ ‑

MS MITCHELL:   Yes, he ‑ ‑ ‑

MS EASTMAN:   ‑ ‑ ‑ outside.  It’s a long way to come and to come in person has been very important.  So we’re very grateful and obliged by your attendance today.  Unless I’ve forgotten anything that I needed to ask you, those were all the questions that I needed to ask you today.

MS MITCHELL:   Yes.  Thank you so much for giving us this opportunity to help make a difference.

MS EASTMAN:   Thank you.

COMMISSIONER SACKVILLE:   I would like to add our thanks to you for coming from Toowoomba and bringing Joshy.  If Joshy were here, I would have said directly to Joshy to thank him very much for coming from Toowoomba and bringing his mum with him.  And I thank you on behalf of the Commission for everything you’ve put into your statements and coming to give evidence today.  We greatly appreciate it.  Thanks so much.

MS EASTMAN:   Thank you.  Commissioners, I formally tender Ms Mitchell’s statements, which you will find in part A of the tender bundle behind tab 21, and that will become exhibit 4.6.  Ms Mitchell had made a photocopy of part of her book, which is like a little diary from Facebook;  is that right?

MS MITCHELL:   Yes.

EXHIBIT #4-6 STATEMENT OF TONI MITCHELL DATED 10/02/2020 (STAT.0064.0001.0001)

<THE WITNESS WITHDREW                                                                                                                    [2.24 pm]

MS EASTMAN:   So I have a copy of it.  I wouldn’t mind just checking with Ms Mitchell whether she’s agreeable to that being part of the exhibits for the Royal

Commission, and then we will make that document available to the parties.  As the Commission is aware, the State of Queensland has leave to appear in the proceeding and, while they’re not physically here today, I anticipate that there may be matters where the State of Queensland would wish to respond and including access to the documents, so we’ll make ‑ ‑ ‑

COMMISSIONER SACKVILLE:   And they – they have – the State of Queensland, I assume, has had the benefit of Ms Mitchell’s statement?

MS EASTMAN:   They have.  And they’re not here today.  And I understand they’re not asking any questions today, but just I want to ensure, if there’s a new document coming into the evidence, that Queensland has an opportunity to read that document and provide any comments, if that’s what they wish to do, before that’s formally tendered.  So that would conclude this part.  Could I ask the Royal Commission if we can have a brief adjournment.  As always, with a Royal Commission, things come up perhaps unexpectedly.

ADJOURNED                                                                                                                    [2.25 pm]

RESUMED                                                                                                                    [2.57 pm]

COMMISSIONER SACKVILLE:   Yes, Ms Eastman.

MS EASTMAN:   Thank you, Royal Commissioners.  And I apologise to those in the gallery and those watching for the delay.  There was one further witness who was going to give evidence this afternoon.  The Royal Commission has received an application from the State of New South Wales in relation to that witness’s evidence and aspects of the evidence that the witness would give.  The Royal Commission has informed the witness about the application, and she has obtained some legal advice.  Her lawyer is unable to be here this afternoon, but she wishes to be heard in relation to that application.  So in the circumstances, we ask the Royal Commission to defer the hearing of the witness’s evidence this afternoon and that at a time when we’re able to identify exactly when the lawyer will be available, that the matter be listed for a hearing of the New South Wales application.  It may be on Friday but possibly on Monday, and then the Royal Commission will be asked to make a decision in relation to the subject matter of the application.

COMMISSIONER SACKVILLE:   And the subject matter of the application is not to suppress any evidence;  it is to keep the names of certain persons confidential.  Is that the substance of it?

MS EASTMAN:   Well, Ms Furness of counsel may be able to tell you what the basis of the application is.

COMMISSIONER SACKVILLE:   Perhaps I will ask Ms Furness.  Yes.

MS FURNESS:   Certainly.  Commissioner, we ‑ ‑ ‑

COMMISSIONER SACKVILLE:   Would you mind speaking into the microphone.

MS FURNESS:   Certainly.  We have received the submissions from the witness in the last 10 minutes.  So I obviously haven’t had time to digest all of it.  However, I anticipate, subject to instructions, that we will narrow our request for a non-publication order based on what we have read so far in those submissions which, obviously, was unavailable information to us prior to that, and I anticipate that the application will be in respect of the name of an institution.

COMMISSIONER SACKVILLE:   So what we’re talking about is an application for a non-publication order in respect of the name of a particular institution that is likely to be referred to in the evidence.

MS FURNESS:   Or that is referred to in the statement.

COMMISSIONER SACKVILLE:   That is referred to in the statement.

MS FURNESS:   Yes.

COMMISSIONER SACKVILLE:   Right.  It doesn’t deal with the – there’s not an application to suppress in any way the contents of the statement other than a non-publication order.

MS FURNESS:   No, that has never been the case.

COMMISSIONER SACKVILLE:   Yes.  All right.  Thank you very much.  All right.  So the – what you’re suggesting, Ms Eastman, is that the application that has just been referred to be dealt with at a convenient time when the solicitor who is representing the witness is able to be present and we can deal with the issue at that time.

MS EASTMAN:   So we’re making inquiries in terms of availability, and I should be able to tell the Royal Commission tomorrow morning, and we can make arrangements for the hearing of the application.  It may well be that perhaps if those representing the State of New South Wales who are seeking to make the application also have the opportunity to speak to the witness’s solicitor, that they may be able together to resolve any concerns that they have.  If they’re unable to do so, then the Royal Commissioners will need to make a decision ‑ ‑ ‑

COMMISSIONER SACKVILLE:   All right.

MS EASTMAN:   ‑ ‑ ‑ with respect to the application.

COMMISSIONER SACKVILLE:   So the position then is, just to be absolutely clear about it, that there is an application pending, that the Commission is, of course, obliged to deal with any application that is made and to deal with that fairly and to give everybody concerned a fair opportunity to put whatever arguments they want.  That includes the State of New South Wales and, of course, the representative of the witness.  The Commission has made no decision about the application.  That will be dealt with at the appropriate time unless it is resolved by agreement in the meantime.

MS EASTMAN:   So I apologise for any inconvenience to anybody attending the Royal Commission this afternoon, but there will be no further evidence today.

COMMISSIONER SACKVILLE:   Well, it’s not uncommon, as I’m sure Ms Furness knows, for applications to come up from time to time in the course of proceedings and to be dealt with, and it’s necessary to provide sufficient time for everybody to address these issues fairly and then they can be resolved and the proceedings can continue.

MS EASTMAN:   Thank you, Commissioner.

COMMISSIONER SACKVILLE:   All right.  In those circumstances, we shall adjourn until 10 am tomorrow.

MS EASTMAN:   Thank you.

COMMISSIONER SACKVILLE:   Thank you very much.

MATTER ADJOURNED at 3.02 pm UNTIL THURSDAY, 20 FEBRUARY 2020