Public hearing 6: Psychotropic medication, Sydney - Day 1
CHAIR: Good morning, everybody. We begin as we do with all our hearings with an acknowledgement of country. I wish to acknowledge the Gadigal people of the Eora Nation, the traditional custodians of this land. I also acknowledge the Turrbal and Jagera Nations upon whose lands our hearing room in Brisbane is located. I pay my respects to their elders past, present and emerging, as well as to all First Nations people viewing this hearing on the livestream.
This is the sixth public hearing of the Royal Commission. It is the fifth hearing in which evidence is presented on a topic within the Royal Commission's Terms of Reference. The hearing this week will examine the ways in which people with intellectual disabilities are treated when they display or are thought likely to display so called behaviours of concern.
The responses often involve the administration of psychotropic medication. This hearing will examine whether responses of this kind, as distinct from positive behavioural support, cause or increase the risk of people with intellectual disability experiencing violence, abuse neglect or exploitation. As I noted at the commencement of Public Hearing 5 which dealt with the impact of the COVID 19 pandemic on people with disability, ordinarily any member of the community is free to attend and observe a public hearing of a Royal Commission, including this Royal Commission.
But as we know only too well, these are not ordinary times. We are still conducting a public hearing, but this week it will be a virtual hearing. For reasons of safety, during the COVID 19 pandemic, no member of the public can be present in the hearing room. But the proceedings will be, of course, live streamed so anyone interested can follow the proceedings by going to the Royal Commission's website. I therefore extend a warm welcome on behalf of the Royal Commission to everyone who is following or will follow these proceedings on the live stream or indeed in some other way.
I want to make now a reference to Justice Ruth Bader Ginsberg. I want to pay tribute to her and honour her memory. She, as you know, died last week. It may seem strange to mourn in Australia the death of a Justice of the Supreme Court of the United States, but her commitment to equality transcended borders. She is of course best known as a champion of women's rights and she has been and was mightily influential in advancing the cause of women's equality far beyond the borders of the United States. What is less well known is that Justice Ginsberg was a champion of the rights of people with a disability. A disability rights organisation in the United States said on her death that no other Supreme Court Justice has played a larger role in the disability rights movement. Her opinion in the foundational case of Olmstead v LC in 1999, which greatly expanded the scope of the Americans with Disabilities Act, has been described as legendary. It's also been said to be the equivalent in the area of disability rights to Brown v Board of Education, the famous school desegregation case in 1954 in the field of civil rights.
Justice Ginsberg's life is perhaps best described in a portion of the Hebrew Bible,
Sefer Shoftim, or Judges, "Tzedek, Tzedek Tirdof". "Justice, justice you shall pursue". This describes in three Hebrew words and five English words what this Royal Commission is attempting to do.
I would like to explain how this virtual hearing will be conducted. We have a hearing room in Sydney, which is a courtroom within premises that are occupied by the Fair Work Commission. We are using this room with the kind permission of that Commission. As it happens, there are two Royal Commissions holding hearings at the Fair Work premises today, the other being a hearing of the Aged Care Royal Commission.
Three Commissioners are participating in this hearing today, Commissioner Alastair McEwin AM is with me in Sydney but he is keeping at a safe distance. Commissioner Roslyn Atkinson AO is participating by videolink through the Royal Commission's hearing room in Brisbane.
Ms Kate Eastman is the Senior Counsel is assisting the Royal Commission in this hearing, and she is present at the Sydney hearing room. Ms Eastman is appearing with two counsel assisting the Royal Commission, Dr Hayley Bennett and Ms Melinda Zerner. Dr Bennett is in the Sydney hearing room while Ms Zerner is in the Brisbane hearing room together with Commissioner Atkinson.
Some members of the Commission staff are in the Sydney hearing room or nearby, some are in the Brisbane hearing room.
As with our recent hearing on the effects of the COVID 19 pandemic on people with disability, this remote hearing has involved meticulous preparation in setting up the information technology and the videolink systems. We've been told that there is every reason to be confident that all will proceed smoothly, but please bear with us if we have the occasional glitch.
We are going to hear from 26 witnesses over the course of four hearing days. Most witnesses will give evidence remotely but some will do so from one or other of the hearing rooms and indeed one will do so today from the Sydney hearing room. The evidence of some witnesses will be pre recorded.
The evidence will include witnesses who can speak of the experiences with people with intellectual disability and autism, to whom psychotropic drugs have been administered, sometimes over very long periods, in order to control what is usually described as challenging behaviour or behaviours that concern. I will come back to those terms in just a minute.
We shall hear from medical practitioners including psychiatrists and general practitioners about the benefits and risks of administering psychotropic drugs to people with intellectual disability and autism. We shall also hear from other health professionals, from advocates, and academic experts, including researchers in the field of disability studies.
In addition, evidence will be given by representatives of Commonwealth and State agencies such as the NDIS Quality and Safeguards Commission, the Queensland Public Guardian and the Queensland Department of Communities, Disability Services and Seniors.
The witnesses in the course of the hearing will use expressions that may not be familiar to everyone but have particular meanings in this area. They include expressions such as "restrictive practices", "chemical restraints" and "off label prescribing". Ms Eastman will explain some of these terms in her opening and others will become clearer as the witnesses give their evidence.
Without intruding too much on Ms Eastman's opening, I think it's important at the outset to explain what is meant by "challenging behaviour" or "behaviours of concern". I appreciate that there is considerable sensitivity about the use of language, and that some people interpret these terms as implying that people with intellectual disability are responsible for their own behaviour. However, these terms are consistently used by experts in a rather different sense, including experts in disability studies who are very familiar with nuances in language. For example, Professor Leanne Dowse who is the Professor of Disability Studies and Chair in Intellectual Disability and Behaviour Support at the University of New South Wales adopts the definition of behaviours of concern that is advanced in the literature. The expression refers to:
Behaviour of such an intensity, frequency or duration as to threaten the life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion. Behaviours of concern can include or at least can be said to include verbal, physical or sexual aggression, self injury and disruption of property.
As the evidence during this week will make clear, challenging behaviour can have severe consequences, both to the person exhibiting the behaviour and those providing care treatment or support. Professor Dowse explains the complex support needs arise in the interaction between the individual and their potential or actual support systems. In other words, the needs reflect the relationships between the individual, their service providers and agencies, and the context which shapes those relationships. This highlights, in her words, ‘behaviours of concern’ are not simply an individual pathology but rather exist in the complex interplay of biomedical function, social and environmental factors which also shape the interventions made in response to those behaviours concerned.
The term "psychotropic drugs" of which you will hear a great deal refers to any drug capable of affecting the mind, behaviour or emotions of the person to whom the drug is administered. This hearing is concerned with psychotropic drugs that can be administered legally, although, of course, such drugs are subject to stringent controls under Commonwealth, State and Territory laws.
The three main classes of psychotropic drugs are antidepressants, anxiolytic hypnotics such as benzodiazepines like Valium and Xanax which are used to control anxiety and anti psychotic or anti convulsive drugs.
Ms Eastman will address in more detail the evidence that will be given this week. I want to make a few general observations.
On the basis of the statements that will be tendered in evidence there seem to be widespread agreement on a number of matters.
First, psychotropic medications have an important part to play in treating mental illness and, if properly administered, can improve health outcomes for patients with those illnesses.
Secondly, psychotropic drugs, particularly anti psychotics, can detrimentally affect a person's health and wellbeing if administered inappropriately. Sometimes the consequences can be very serious indeed. The evidence will provide examples of adverse consequences that can even in some cases include death.
According to Dr Catherine Franklin, a consultant psychiatrist and Research Fellow with the Queensland Centre for Intellectual and Developmental Disability, about 80 per cent of people taking anti psychotic medication experience side effects, and one third of these have moderate to severe impairment due to medication related side effects.
Thirdly, there is a clear distinction between using psychotropic drugs appropriately to treat their illness and administering them to control the behaviour of people with intellectual disability or autism who do not necessarily have a mental illness. In practice, as we shall hear, the distinction is blurred and psychotropic drugs are often used to control challenging behaviour of people with intellectual disability, and not for the purpose of treating mental illness although the medical records can sometimes suggest otherwise.
Fourthly, psychotropic drugs are overused in Australia as a response to behaviours of concern by people with intellectual disability, but the most part this form of behavioural control is administered without the person having a say in what is to happen.
Fifthly, there is data available that may suggest that psychotropic drugs are overused. For example, Mr Graeme Head, the NDIS Quality and Safeguards Commissioner tells us that there were 177,000 reports of unauthorised use of chemical restraints on NDIS participants in 2019/2020. An unauthorised use of psychotropic medication is not necessarily improper, for example where drugs have to be administered without prior approval in an emergency. Nonetheless, the figures are suggestive and perhaps receive support from other data. But as we shall hear, there are no reliable national statistics on the extent to which psychotropic drugs are used to control the behaviour of people with intellectual disability, the majority of whom are not NDIS
Sixthly, official bodies have formulated key principles designed to limit the use of psychotropic drugs. The overriding and generally accepted principle is that psychotropic medication and other restrictive practices should only be administered as a last resort to prevent imminent and serious harm to the person or to others, and only where less restrictive options have been exhausted. Even then, the least restrictive option should be used.
The difficulty that witnesses will point to is the absence of enforceable national standards regulating the administration of psychotropic drugs to people with intellectual disability and autism is a form of chemical restraint, although there have been some initiatives undertaken to formulate national standards.
Seventhly, positive behavioural support is an effective tool for responding to behaviours of concern and should be more widely used as a means of reducing reliance on chemical restraints, provided --- and this is an important proviso --- that the support is of requisite quality.
Eighthly, the overuse or misuse of psychotropic drugs as a form of behavioural control raises significant issues concerning Australia's compliance with the Convention on the Rights of Persons with Disabilities, the CRPD. The provisions that are relevant include these.
Article 12 provides that State parties such as Australia, shall recognise that people with disability enjoy legal capacity on an equal basis with others in all aspects of life. Article 14 requires State parties to ensure that people with disabilities enjoy the right to liberties and security of person on an equal basis with others and are not deprived of their liberty arbitrarily. Article 15, which reflects the terms of other international Conventions, says that no one shall be subjected to cruel, inhuman or degrading treatment, and of course Article 16, which we have heard before, states that State parties must take appropriate measures to protect people with disability from all forms of violence, abuse, neglect and exploitation.
The issues we are examining this week therefore have a significant human rights dimension. I would like to make two final comments.
First, as has frequently been pointed out at our hearings, our Terms of Reference require us to inquire into an extraordinarily wide range of issues, many of which raise policy questions of great difficulty and complexity. Sometimes the answers to the policy questions seem to be relatively straightforward, at least in principle. But the difficulty and the complexity lie in translating those principles into everyday practice.
It is the practical implementation of good ideas that can be the key to reducing, if not completely eliminating, particular forms of abuse directed at people with disability. This may be one such area.
Lastly, the Royal Commission is committed to providing a forum for people with disability to recount their experiences and express their views. However, some people with disability, despite the best efforts of advocates, are unable, perhaps unwilling, to make their voices heard in a public hearing. Even so, it is essential for the Royal Commission to understand their experiences as Ms Eastman will explain in some respects this hearing is concerned with the experiences of hidden or voiceless people with disability. One way or another, their stories must be told. Ms Eastman.
MS EASTMAN: Commissioner, thank you. I appear with Dr Hayley Bennett and Melinda Zerner in Brisbane.
We are instructed by the Office of the Solicitor Assisting the Royal Commission. We also acknowledge and pay our respects to the traditional custodian on the land on which we all participate in this public hearing. We pay our respects to First Nations elders past, present and emerging, as well as all First Nations People following this public hearing.
On 16 September last year, just over a year ago, Commissioners, you convened a ceremonial sitting to open this Royal Commission. On that occasion, Commissioner McEwin, you said this:
For far too long people with disability in Australia have been denied the right to make their own decisions with appropriate support. For far too long people with disability have been denied the dignity of risk and the freedom to choose how to live their own lives with independence. Our society cannot be allowed to protect people with disability to the extent they cannot choose to live their own lives as they wish and to experience the consequences of those choices. We must avoid protectionism to the point of not allowing people with disability to take risks, as any person would expect to do in our society.
When people with disability are subjected to restricted practices in the form of chemical restraint to manage a person's behaviour which is done in the name of safety or to protect themselves and others, it will impair a person's independence and may significantly impair their human rights.
There is no single or consistent definition of the expression "restrictive practices" or chemical restraint in Australia. The absence of consistent expressions of restrictive practices and chemical restraints mean there is no consistent approach to when and how decisions may be made to address a person's behaviour, and whether that will result in a restraint, where the concept is required, perceptions of risk, and whether a restraint is justified.
For the purpose of this hearing, a restrictive practice is any practice or intervention that has the effect of restricting the right of freedom of movement of a person with disability. This is the definition used in the National Disability Insurance Scheme Act.
For the purpose of this hearing we will use the definition "chemical restraint" as used by the National Disability Insurance Scheme Restrictive Practices and Behaviour Support Rules, and that definition says as follows:
The use of medication or chemical substance for the primary purpose of influencing a person's behaviour. It does not include the use of medication prescribed by a medical practitioner for the treatment of or to enable treatment of a diagnosed mental disorder, a physical illness or physical condition.
Psychotropic medications are the most common medication to "influence" a person's behaviour. This definition of "chemical restraint" makes a distinction between therapeutic and non therapeutic use of the drugs. And during this hearing, you will hear that appropriate therapeutic use of psychotropic medication can enhance the wellbeing and health of a person with a cognitive disability who experiences a mental illness.
Now, Commissioners, you may recall that the term "cognitive disability" is often used as an umbrella term and includes people with intellectual disability and people with autism. During this hearing you may hear witnesses use these expressions interchangeably.
Coming back to the distinction between medication used to restrain a person and medication used to treat an illness or disorder, it's not always clear. Research has suggested that up to 60 per cent of people with intellectual disability are prescribed psychotropic medication to managing challenging behaviours, and that of this population, only 30 per cent have a mental illness. So this is a significant number of people when you recall that 1.8 per cent of the Australian population has an intellectual disability.
The use of psychotropic medication as a chemical restraint raises many concerns, as you will hear this week, and some of the particular concerns are: over reliance on such restraints as a first response to challenging behaviour; the misuse or overdosing of medication for the purpose of behavioural control; and the side effects of psychotropic medication.
Similar concerns have been considered by the Aged Care Royal Commission in relation to the chemical restraint of older people in residential aged care facilities and this Commission will take note of the work of the other Royal Commission.
Later today you will hear evidence from Dr Manya Angley. She is a pharmacist. She will tell you she was asked to review the medication of a person who I will call Alex. Alex has autism, intellectual disability and bipolar disorder. Dr Angley was told Alex had "extreme and challenging behaviours". Alex had been on some form of anti psychotic medication since the age of four. Dr Angley reviewed Alex's medication. Her review revealed Alex was prescribed three anti psychotic medications of which two were not indicated for autism. Alex was prescribed the
medication in doses considerably higher than the recommended doses for the treatment of schizophrenia, which Alex did not have.
Dr Angley will tell you two of the psychotic medications were used as a chemical restraint and they were not working. She expressed concerns following her review about the immediate side effects and the risk to Alex's long term health. She will tell you that this is one of the most extreme cases she has seen of the misuse of psychotropic medication. So what do we know about the experiences of people with intellectual disability and autism with psychotropic medication? That's a question we will explore during the course of this week. Dr Catherine Franklin will tell you there has been international concern about over prescription of psychotropic medication for at least 30 years.
Professor Julian Trollor and Dr Franklin's research has found that the rates of mental illness among people with intellectual disability are two and a half times higher than the general population. However, mental illness is often undetected for people with intellectual disability, so their research reveals that even accounting for elevated presence of mental illness in populations with intellectual disability, psychotropic prescription rates and polypharmacy appeared disproportionately high and not in keeping with evidence based prescribing practices.
Professor Leanne Dowse will tell you that "disentangling the use of psychotropic medication for a confirmed mental health diagnosis and its use for the purpose of managing behaviours of concern is a significant challenge." She will tell you that there is limited and inconsistent evidence regarding the effectiveness of psychotropic medication in reducing behaviours of concern.
Dr Jane Law will tell you there is no strong evidence base for the use of many psychotropic medications that she sees with people with intellectual disability, apart from those described to a person with diagnosed psychiatric disorders.
Commissioners, you may well ask, why are psychotropic medications used as a chemical restraint if there is no definitive evidence this medication is effective?
Commissioner Sackville, you've touched this morning on the contentious expression challenging behaviour. You have heard this in the evidence at Public Hearing 3 last year on the experience of living in a group home for people with disability. These expressions are problematic.
Dr Niki Edwards will tell you that estimates of the prevalence of challenging behaviours will vary upon methodology and population samples, and indeed, at Public Hearing 3, Dr Wiesel told you this:
Challenging behaviours are expressions of frustrations when people's needs are not being met. Their choices and control are undermined and they have no other way of communicating their frustration.
Professor Trollor told you at Public Hearing 4 in February this year, the inquiry into healthcare and services for people with cognitive disability, about some of the challenges with communication differences and adapted functioning for people with intellectual disability, and you will recall he made these observations.
First, people with intellectual disability commonly experience impairments to both expressive and receptive communication abilities, and they may experience difficulty understanding abstract ideas and may require support to express and/or receive information.
He told you that up to 80 per cent of people with severe intellectual disability do not develop effective speech, and 50 per cent of autistic people with disability experience profound communication impairments impacting on understanding or being understood by others.
Professor Trollor has told you that some people with intellectual disability or autism may struggle to identify or communicate their internal experiences of mental distress or physical discomfort to clinicians. And he said diagnostic overshadowing therefore occurs more frequently in such populations, especially in the absence of effective communication strategies.
Dr Franklin will tell you this morning that for many people with intellectual or developmental disability, challenging behaviours may be their only form of communication. It may be a way of communicating physical illness, mental illness or a variety of environmental or psychological issues, such things as common pain, unhappiness, sensory difficulties or abuse.
Understanding how behaviour is a form of communication will be examined at this public hearing. Communication is critical to choice. All treatment by health services must be based on the principle of "free and informed consent", namely choice.
You will hear concerns about people with intellectual disability not being able to consent to psychotropic medications regardless of whether the medications are administered for therapeutic purposes or as a chemical restraint.
Dr Jane Law will tell you that most often, the negative effects of behavioural concerns are minor and can be managed adequately by suitable behavioural environmental management.
Commissioner Sackville, can I come back to invisible and silent people. At the Ceremonial Sitting of this Royal Commission in September last year, you said this:
We also recognise that there will be many people who are unable or very reluctant to come forward to tell us of their experiences. This is likely to be true of people with disability who have difficulties in communicating, live in closed communities or experience homelessness.
This public hearing is such a case. Controlling a person's behaviour by using psychotropic medication may impair or silence a person's only means of communication. They become invisible. As Dr Edwards would tell you, they are "voiceless and without agency".
You will hear later today from ABF who will tell you about her brother's experience, and she will tell you that she would like all professionals and every member of the community to be better educated about invisible disabilities. She fears, without this, they will just simply be shut away.
People who have been subjected to chemical restraints are not always able or willing to speak about their experiences, and this has had consequences for this public hearing. And the absence of people with disability who have experienced chemical restraints speaking for themselves in this forum will be apparent. In preparing for this hearing, we have consulted with people with intellectual disabilities, their families, advocates and experts about how evidence from people with disability experiencing chemical restraint may or should be presented. Some people have told us they would prefer to share their experiences in private sessions with the Commissioners, or by making a personal submission or a submission in response to the Royal Commission's Issues Paper, rather than speaking in a forum like this.
That choice must be respected. The Royal Commission encourages anyone who wishes to share their experiences or bring concerns to its attention to do so and they will be supported to do so in the manner that they wish. So you will hear from mothers, sisters, advocates about the experience of people with intellectual disability and autism and their challenges with communication, the responses to their behaviours of concern and when psychotropic medication has been used to both treat and restrain them.
So I want to touch briefly on some of the issues that will arise during the course of this hearing. First is human rights. Chemical restraints impair a person's human rights, a person's freedom of movement, liberty, privacy and the right not to be subjected to cruel, inhuman or degrading treatment as well as the right to the enjoyment of the highest attainable standard of health without discrimination. These are rights recognised in the Convention on the Rights of Persons with Disabilities, and Commissioner Sackville, you've referred to these rights earlier.
The Committee that monitors the CRPD has said that decisions about medical and psychiatric treatment must be based on a determination of a person's autonomy, will and preferences.
The CRPD has had something to say about Australia. In 2013 the Committee expressed its concern that under Australian law a person can be subjected to medical intervention against his or her will if the person is deemed to be incapable of making or communicating a decision about treatment. It recommended that Australia take immediate steps to end such practices, including establishing a national monitoring mechanism.
Six years later, in December last year, the Committee again expressed concern in relation to Australia's compliance, saying legislation policies and practice that allow for psychotropic medication, physical restraint and seclusion under the guise of "behaviour modification" or restrictive practices against persons with disability including children in any setting such as justice, education, health, psychosocial and aged care facilities.
It recommended that Australia establish a nationally consistent legislative and administrative framework for the protection of all persons with disability in relation to, among other things, the use of psychotropic medication.
Commissioners, there are also statements from other UN Human Rights treaty bodies and several of the Special Rapporteurs with mandates to examine Torture, Health and the Rights of People With Disabilities, and these will be matters the Royal Commission will consider in more detail in relation to the Issues Paper on Restrictive Practices.
Secondly, there is an absence of nationally consistent laws and regulations of the use of psychotropic medication for people with disability or autism. As you've heard from Commissioner Sackville, there is no national or set of law dealing with chemical restraints in Australia, and this was highlighted by the UN Committee.
There is no national law or regulation that provides oversight for the use of psychotropic medication for therapeutic purposes or as a restrictive practice. In 2014 the Department of Social Security developed a National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector. However, Professor Dowse will tell you that the framework has limitations in terms of its focus on how and when the use of restrictive practices occur, rather than the guidelines focusing first on the prevention of restrictive practices and early intervention for behaviours of concern.
The National Disability Insurance Scheme Act regulates the use of restrictive practices on NDIS participants, and the NDIS Quality and Safeguards Commissioner's functions include the behaviour support function, and you will hear from Dr Jeffrey Chan later this week, the Senior Practitioner for the NDIS Quality and Safeguards Commission, about this function. Part of this function involves assisting Australian States and Territories develop a regulatory framework, including nationally consistent minimum standards in relation to restrictive practices in line with the National Framework.
Registered NDIS providers and behavioural support practitioners must comply with the requirements in the Quality and Safeguards Commission and the Rules. The Rules state that a restrictive practice is regulated and it may include a chemical restraint.
The Rules then impose requirements on NDIS providers who use restrictive practices
and this requires that such practices should not occur where a relevant State or Territory law prohibits such use. It should be undertaken in accordance with State and Territory authorisation processes and the use of a behaviour support plan, and be recorded by the provider and reported to the Commissioner.
This hearing will examine the complex interaction between the Commonwealth, State and Territory regulations. And Mr Head, the NDIS Commissioner will tell you about recent steps taken to try to reach agreement on principles for nationally consistent authorisation of restrictive practices.
One focus in this hearing is on Queensland. The Queensland laws have been in place for some time following an inquiry conducted by the late Hon William Carter QC in 2006. With respect to Queensland, you will hear about the way in which Queensland law regulates restrictive practices under the Disability Services Act and the Guardianship and Administration Act.
A number of witnesses will tell you about the experience in Queensland, including Professor Karen Nankervis who was the Chair and Director of the Centre of Excellence for Behaviour Support that was established in 2008 in response to recommendations made by Mr Carter.
Ms Shayna Smith, the Acting Public Guardian in Queensland will explain the role of the Public Guardian, the OPG. She will tell you that the OPG's experience is that the implementation of the legislative framework across three Queensland organisations that have power to consider requests for chemical restraints and when they may be used does:
.... at times lead to some operational challenges for both the OPG and the service provider sector.
She will tell you about common challenges including that the primary purpose of psychotropic medication is not always clear, and it has been prescribed by treating doctors to manage "anger" or "behaviour due to intellectual disability", clearly not appropriate prescribing practices. And, she will tell you about the lack of accurate data reporting in relation to frequency, intensity and duration of behaviours of harm. And she will tell you that the views and wishes of adults who are subject to restrictive practices are not always sought.
The focus on adults is because the Queensland laws do not apply to children. Ms Donna Lockyer, the Executive Director, Restrictive Practice and Disability Programs in the Queensland Department of Communities, Disability Services and Seniors, will tell you about the regulations in Queensland requiring the approval for the use of chemical restraints.
Other witnesses will tell you about their experiences in using the Queensland laws and how they now operate in the context of the NDIS Act. This will include people who are not NDIS participants.
Thirdly, you will hear evidence about behaviour support plans and the regulation of behaviour support specialists.
Professor Dowse will give evidence about recognised best practice in Australia for responding to behaviours of concern in the form of positive behaviour support.
Ms Joyce Lyn Smith will tell you that positive behaviour support and capacity skills building is an effective alternative to restrictive practices, including chemical restraint. It enhances the quality of life and she will explain the way behaviour support plans should be developed from a person centred approach.
You will also hear evidence from Mr Simon Wardale about the importance of front line support staff implementing positive behaviour plans and examples of where this has not occurred. And you will hear about the importance of positive behaviour support practitioners being appropriately trained and qualified.
You will hear from Ms Courtney Wolf who will tell you about the difficulties people face in trying to access behaviour support practitioners, including the substantial costs involved in the preparation of plans.
You will also hear from a number of witnesses about their experience of positive behaviour plans. Rose Atherton will tell you about having no knowledge of a behaviour support plan being in place for her late brother. When she discovered the plan and reviewed the plan with the assistance of a behaviour support specialist, she will tell you this, "it made her blood boil". She discovered the plan had been prepared by a staff member who had never been trained.
You will hear that adequate training for support workers has been lacking. Often the mix of residents is a major issue in the layout of group homes and it can lead to staff fatigue, increased use of casual staff and difficulties with the implementation of behavioural support programs.
You will hear about behaviour support plans not being followed and remaining closed "on the shelf". One concern is the lack of consistency in behaviour support partly due to the highly casualised workforce.
You will hear about poor monitoring of the day to day administration of psychotropic medications in this context, that there are no standards and little evidence based practice guidance to ensure consistent and comprehensive monitoring and accountability mechanisms that will assist in the day to day practices.
Next, you will hear a little bit about the support of supporting people with intellectual disability to manage complex, particularly life in a group home, and later today you will hear from Raylene Griffiths who has a disability, and she will tell you about her experiences living in group homes when disagreements arose with fellow residents,
and how she went to work out those problems. Her evidence will highlight the importance of providing people with disability with the skills and confidence to respond to and resolve problems that may arise when another person's behaviour causes concern.
Next you will hear about the importance of models of care, and Dr Jennifer Torr will inform you of better approaches to address behaviours of concern that would require comprehensive collaborative multi disciplinary assessments of an individual so that other determinants of behaviour can be identified and addressed.
Witnesses will tell you how often there is no interaction between a medical practitioner and a behaviour support practitioner to consider or develop alternatives to chemical restraint.
People with cognitive disability are often escorted to see medical practitioners by a family member or a support worker, and those people may have a vested interest in seeking a simple solution of a chemical restraint rather than opting for a more intensive approach of capacity building.
As with other hearings, you will hear about the role and importance of advocates, and you will hear from a number of advocates: Dianne Toohey and Kathy Kendall from SUFY, Joanna Mullins, an independent advocate with Independent Advocacy, North Queensland, and Dariane McLean, an advocate with VALID.
Ms McLean will tell you about her work a VALID Behaviours of Concern Peer Support Action Group and her interaction with various service providers. But she will also share with you the experience of her son's life in various group homes and the trauma he has experienced because of restrictions on his freedom and independence.
Ms Mullins will tell you about advocating for a First Nations teenager who I will call Robin. Robin has autism and an intellectual disability. Robin's whole life has been a struggle. Ms Mullins will tell you Robin has been prescribed different psychotropic medications throughout Robin's childhood, starting when Robin was five years old. She will tell you that in 2017 Robin did not have support workers to offer core support, there was no positive behaviour support plan in place, no consistent medical care, and Robin had not been connected with other services such as educational allied health service. Ms Mullins will tell you about the steps taken to provide better supports and healthcare for Robin, and she will explain the processes that resulted in an approved chemical restraint.
You will hear there is a lack of independent advocacy for many people with behaviour support needs who may have very limited information to support networks.
With respect to safeguards, commissioners, you will hear witnesses tell you about the importance of a number of safeguards from effective laws and regulations, but also
gaining access to people who become invisible and voiceless, and this includes the community visitor schemes and some practices in Queensland.
You will also hear about mechanisms for making complaints and the powers of the NDIS Quality and Safeguards Commissioner in relation to complaints and incidents of non compliance.
Another recurrent issue for this Royal Commission is data. A number of witnesses will tell you there is limited data, and the absence of data is a pressing issue. Professor Keith McVilly will tell you about his research and why the prevalence rates of restrictive interventions are difficult to determine, partly because the restrictive interventions are defined differently across jurisdictions which in turn means data is collected in different ways and will also vary.
Related to data you will hear about the importance of funding and research in Australia, and you will hear that there is a need for ongoing research and evaluation to understand and support change in this area to look at prescribing practices, including off label and the PBS implications, to look at methods of support and to encourage de prescription of psychotropic medications. Both Dr Franklin and Professor Trollor will raise issues in relation to research.
Professor Trollor will tell you Australia could look to a major national initiative launched in the United Kingdom in 2016 by the National Health Service to improve prescribing of psychotropic medication in people with intellectual disability and autism. That initiative is called "Stop overmedicating people with a learning disability, autism or both" commonly called STOMP. And he will say, in his opinion, consideration of what elements of such a program could be applied in Australia is warranted.
You will hear evidence from Dr David Branford about the establishment of STOMP, and the inquiries undertaken in the UK following the Winterbourne View exposed by the BBC Panorama program. This led to scrutiny of prescribing psychotropic medication to people with cognitive disability in the UK.
Very shortly, you will hear from Paula McGowan about her involvement with STOMP following the death of her son Oliver. She commenced a public campaign that led to further scrutiny and change concerning how medical and disability staff should be better trained about people with intellectual disability and behaviours of concern and this has led to the Oliver McGowan Mandatory Training program being rolled out in the UK.
As you've heard in earlier public hearings including the recent public hearing on the impact of covid 19 on people with disability, there needs to be more effective integration between the health and disability services, and there needs to be tools to aid a clinical practice to support medical practitioners in assessing and managing the prescription of psychotropic medication to people with intellectual and developmental disability. There are lessons Australia may learn from the experience
of the UK, and Paula McGowan will tell you about the importance of health and disability services to face these very difficult disabilities, and she will say that Australia should not have to wait for a case such as Oliver's to come along.
There are likely to be a range of other issues that arise during the course of this hearing and may I remind those following the proceedings that some of the evidence may be distressing, and the Commission encourages those watching to be mindful that some topics may be upsetting and we encourage those to seek support.
The contact details for the Blue Knot Foundation can be found on the Royal Commission's website.
Finally, I want to say something about the way in which this hearing will be conducted.
For this public hearing the Royal Commission is not conducting coronial inquests or professional conduct inquiries. It will not be making findings of breaches of laws, be they civil or criminal. The Royal Commission does not intend to be a substitute for local complaint process, internal investigations or coronial inquiries. The Royal Commission is not a court and cannot provide remedies for individuals. In this respect, the Royal Commission will not be making findings as to whether a particular person, service provider, medical practitioner or health service breached the law or any guideline or policy.
The focus of this public hearing is the experience and impact of the use of psychotropic medication and the need for alternative measures to manage behaviours of concern, however they so be described. This hearing will focus on the systems, processes and ways to better protect people with disability from violence, abuse, neglect and exploitation.
May I also remind those following these proceedings about the provisions in the Royal Commissions Act for the protection of witnesses. And I refer in particular to Section 6M that will be available on the Royal Commission's website.
Finally, Commissioners, there are a number of parties who have been granted leave to appear at this public hearing and it may be appropriate to take their appearances now before a short break.
CHAIR: Yes. Thank you, Ms Eastman. I invite the parties had who have been given leave to appear to announce their appearance. Perhaps if we start with the State of Queensland that seems to have appeared on our screen.
MS McMILLAN: Yes. Good morning, Commissioners. My name is McMillan, initials K, I'm here with Ms Cohesy instructed by Crown law for the State of Queensland.
CHAIR: Thank you, Ms McMillan. The State of New South Wales I also see on the
MS FURNESS: Thank you, Commissioner. My name is Gail Furness. I'm instructed by the Crown Solicitors Office in New South Wales to appear for the State of New South Wales.
CHAIR: Thank you, Ms Furness.
Is there anybody else who wishes to announce an appearance?
MR KENNETT: If the Commission pleases, it's Geoffrey Kennett here. I appear for the Commonwealth with Ms Munro.
CHAIR: Thank you, Mr Kennett. Is that the totality of appearances to be announced? Thank you. That being the case, it is now five to 11. If we adjourn for 20 minutes and resume at 11.15.
MS EASTMAN: Commissioners, I was going adjourn for five minutes, then we will take Ms McGowan's evidence.
CHAIR: Oh, we are going to have a short break?
MS EASTMAN: A very short break.
CHAIR: All right, in my obedient mode, we will now take a very short break.
ADJOURNED [11.56 AM]
RESUMED [11.05 AM]
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Commissioners, the first witness is Paula McGowan. She is here in the hearing room in Sydney and will take an affirmation.
CHAIR: Ms McGowan, if you wouldn't mind following the instructions of my associate.
MS PAULA McGOWAN, AFFIRMED
CHAIR: Thank you, Ms McGowan. Ms Eastman will now ask you some questions.
EXAMINATION IN CHIEF BY MS EASTMAN
MS EASTMAN: Your name is Paula Catherine McGowan? I might need you to speak up a little bit. And you are an early years teacher?
MS McGOWAN: I am.
MS EASTMAN: You've made a statement for the Commission on 5 September; is that right?
MS McGOWAN: That's correct.
MS EASTMAN: You will find a copy of the statement in tender bundle part A, at Tab 1, with some additional material behind tabs 2, 3 and 4.
Commissioners, can I ask you to receive the statement and additional material into evidence, and mark the exhibit as 6.1, and then 6.1.1 through to 6.1.3.
CHAIR: Thank you. Yes, we will do that.
EXHIBIT# 6.1 - STATEMENT OF PAULA McGOWAN
EXHIBIT# 6.1.1 THROUGH TO 6.1.3 - ANNEXURES TO STATEMENT OF PAULA McGOWAN
MS EASTMAN: Now, Ms McGowan, you are going to read part of your statement and you've got a copy there. Before you do so, can you confirm that the contents of your statement are true?
MS McGOWAN: They are.
MS EASTMAN: Can I now invite you to start reading at paragraph 2, and we are going to stop along the way. So I will let you know when we will have a stop.
MS McGOWAN: Thank you.
My name is Paula Catherine McGowan. I am married to Thomas McGowan and we are the parents of Thomas Oliver McGowan, known as Oliver, who died aged 18 on 11 November 2016 at Southmead Hospital, Bristol, United Kingdom. References in this statement to "we", "us" or "our" refer to my husband and I.
Tom was in the military in the UK and transferred to the Australian Air Force
directly after Oliver's inquest in April 2018. We now live in Australia and have Australian citizenship.
When we lived in England, I was working as a teacher with children who had additional needs, particularly those with autism and intellectual disability. In the United Kingdom the term "learning disability" is used to describe "intellectual disability". References in this statement to "learning disability" should be taken to also mean intellectual disability. My passion and drive has always been to give equal, positive and quality education to all children. It is my role to mediate and modify a curriculum that is accessible for every child. Every child matters irrespective of ability or disability.
We are supporters of the National Health Service's, known as the NHS, campaign on stopping the over medication of people with intellectual disability, autism or both, which is known as the STOMP campaign which will be discussed later. This campaign in England was started to address the inappropriate and over use of psychotropic medication to manage behaviour in people with intellectual disability. I believe that there are several lessons from the STOMP campaign and related developments in the UK that would be useful for Australia in addressing the same issues here.
As set out in Article 25 of the Convention on the Rights of Persons with Disabilities, all people with disabilities have the right to health and high quality healthcare, without discrimination. This means that psychotropic medication should only ever be used in appropriate circumstances, safely, and with the consent of the person with disability, not as a first resort in order to control their perceived behaviour.
Clinicians should treat in partnership with the patient, their families and carers using a non pharmaceutical approach and evaluate the effectiveness of that approach over an agreed period of time.
MS EASTMAN: Can I ask you to pause there. You are about to tell us about Oliver and you wanted to share a photograph of Oliver. We will put that up on the screen now.
This might be one of the technical glitches you asked us to be patient with.
Ms McGowan, while the photo is coming up, can I ask you to keep reading and paragraph 7 you start to tell us about Oliver and his photo will come up.
CHAIR: We have a glitch technique for determining when we can go back, so they'll let us know and we will go on and the photo can be shown.
MS McGOWAN: Thank you. Let me tell you about my beautiful son Oliver.
From the moment Oliver was born, my husband and I knew that he was special and our love for him was simply overwhelming. Oliver was born a month premature and
at three weeks of age he developed bacterial meningitis. He was very ill and we were told by the doctors that they simply did not expect him to survive. However, he began to recover. Two weeks after discharge, Oliver developed a second episode of meningitis and, sadly, the meningitis caused Oliver to have an infarction, so a stroke, to his brain which resulted in a mild hemiplegia --- cerebral palsy --- focal seizure epilepsy, a mild intellectual disability and, later on, a diagnosis of high functioning autism.
But Oliver's disabilities didn't hold him back. He met all his developmental milestones and was placed on the average percentile charts. He had an absolute steely determination and can do attitude. He played football for the South West Centre of Excellence Cerebral Palsy England development squad, so he was playing for England FA. He was also a registered T35 athlete with the Power of 10, and was ranked third best in the country for running 200 metres. Oliver was a member of Team Bath athletic club and harboured a realistic ambition of becoming a Paralympian.
Oliver was a natural leader who became a school prefect, and an active member of the School Council at his high school. He attained and passed GSCE, which stands for the General Certificate of Secondary Education in England, and BTEC, which stands for the Business and Technology Education Council in England, qualifications and he went on to attend a specialist further education college for people with physical disabilities, acquired brain injuries and associated learning difficulties. The college's opinion of Oliver were very complimentary. They were writing how friendly and kind he was. He was supporting students who were far less able than himself. They highlighted his wicked sense of humour. They themselves also had aspirations for him to start a sports course at a local ski centre.
As you can see, Oliver brought so much happiness and fun to our lives; he always saw the best in everything and everyone and he taught us all how to look at things differently. His courage and enthusiasm for life was just simply inspirational. Now, we were told by Oliver's neurologist that he had a full life expectancy and he would live an independent life with a small amount of support.
However, in October 2015 Oliver was admitted to a Children's Hospital having what we and the college staff recognised to be simple, partial focal seizures. And, quite rightly, these caused Oliver to be scared and confused. After being discharged from hospital, Oliver continued to have simple partial seizures, around one per fortnight. He was given anti depressant medication, which surprised us because Oliver wasn't depressed. Oliver loved life and life certainly seemed to love Oliver.
When this medication was increased it caused a change to Oliver's mood and increased his seizures greatly. And as a result he was admitted back to the same hospital in December 2015. But this time, Oliver was given an anti psychotic medication. But Oliver didn't have a diagnosis of psychosis or mental illness. We absolutely strongly believe that the doctors were misunderstanding Oliver's normal autistic behaviours.
Oliver was treated at several hospitals for those seizures, and during the course of these treatments he was given anti psychotic medication on a number of occasions. This medication was given to him because he was displaying what were perceived to be challenging behaviours whilst he was in seizure. In reality, his behaviour was the very same as any other person's would be in seizure and compromised.
Oliver was frightened and as a result quite rightly he was anxious. We believe that if Oliver had not have had the labels of autism and intellectual disability attached to him he would absolutely have not have been prescribed psychotropic medications.
MS EASTMAN: Can I just ask you to pause there. I understand the photo that we were going to show when you started talking about Oliver is now available, so we will put that photo up.
CHAIR: No, it's not correct. Apparently the photograph is not available.
MS EASTMAN: I apologise, Ms McGowan. We are having the technical glitches today. I apologise for that.
MS McGOWAN: That's my beautiful son.
MS EASTMAN: How old was Oliver when that was taken?
MS McGOWAN: This is just months before Oliver went into hospital. This is the normal Oliver that we knew and his friends, teachers, everybody recognised.
MS EASTMAN: And so that's the Oliver that you've spoken about. And you were up to the point of your statement about Oliver then being in hospital and the administration of these medications, so can I take you back to paragraph 14. Thank you. Do you want to start from there?
MS McGOWAN: Yes, that's great, thank you.
The effect of these medications were absolutely catastrophic. Oliver's seizure threshold and agitation deteriorated, and we didn't recognise that beautiful boy that you can all see up there. Oliver was now hallucinating. He was now having 30 seizures a day, something we had absolutely never seen happen before. Oliver was now having problems urinating. He had extremely high blood pressure readings and he was sweating profusely. We walked into Oliver's room one day and found him having an oculogyric crisis, which is a serious dystonic a side effect of those very medications which caused his eyes to roll upwards.
MS EASTMAN: Can you pause there. And you wanted to show another photograph and I will give the number, if that provides some assistance. It's
IND.0041.0001.0004. Just put this photograph up.
CHAIR: I think the photo is up.
MS EASTMAN: That's a hard photo to look at.
MS McGOWAN: To go from the Oliver that you have seen to exactly what a psychotropic medication can do is quite shocking.
MS EASTMAN: Let's go back to what happened in the hospital. So this is a photo that you took of Oliver at that time. What happened, was he left for a period of time?
MS McGOWAN: So Oliver himself, being the person he was, kept apologising for the state he was in. And Oliver was left like this for six long hours. As my husband and I heard the doctor in the doorway say "he's making it up, it's behavioural". After six long hours when they realised he wasn't making it up, Procyclidine had to be administered to counteract that reaction, and it took 15 seconds to work.
We strongly believed that the drugs were the cause of decline in Oliver's mood. It was obvious to us that the doctors and nurses had little to no understanding of autism and how autistic behaviours could present in a person with ongoing seizures. When Oliver was taken off this medication his mood and seizure activity returned back to normal. It was clear to us that he was sensitive to anti psychotic medication.
In October 2016 Oliver had a cluster of those very same partial seizures and was admitted to a general hospital. This time he was intubated and as a result developed pneumonia.
Now, despite making it very clear to the doctors and nurses at the hospital that they absolutely did not have our or Oliver's permission to do so, Oliver was given an anti psychotic medication, namely Olanzapine. Oliver had an adverse reaction to the Olanzapine and he developed Neuroleptic Malignant Syndrome, known as NMS. As a result, we were told by the doctors that Oliver's brain was now so badly swollen it was bulging out the base of his skull. It was so badly damaged that Oliver was now profoundly disabled. Oliver had no more speech. There was no more understanding of language. He had absolutely no way of communicating. Oliver would be reliant on a tracheotomy and would be tube fed for the rest of his life. Oliver was now paralysed. There was no more representing his country in athletics or football. That beautiful smile that we saw earlier, his sense of humour, and those words of wisdom were gone forever. Oliver was silenced.
The doctors told us that Oliver had no chance of recovery or return to any sort of meaningful life and the decision was made to turn his life support machines off. Oliver passed away on Armistice Day, 11 November 2016. This is a very poignant day for us as Oliver is and was a military child and has lived all of his life as part of the United Kingdom's Royal Air Force family.
Oliver died due to a combination of pneumonia and hypoxic brain injury. The brain injury was caused by seizures and Neuroleptic Malignant Syndrome, an absolute adverse reaction to that very first drug, Olanzapine, that Oliver had requested not to be given.
Oliver was given psychotropic medication as a consequence of behaviour whilst in seizure that was seen or perceived as challenging. However, we believe that there was a misunderstanding of his behaviour and that there was a failure to make reasonable adjustments.
For Oliver that reasonable adjustment that would have helped Oliver manage his behaviour and anxiety would have definitely de escalated that. We believe Olanzapine should never have been given to Oliver as he was sensitive to psychotropic medication. Several doctors who had seen Oliver had written exactly the same thing. We had asked throughout Oliver's care he not be given anti psychotic medication. Our wishes were ignored and, worse still, Oliver himself had made an advanced verbal decision stating he was not to be administered any anti psychotic medications. Cruelly, Oliver was reassured that this would not happen and his voice was not heard. And it cost him his life.
MS EASTMAN: Ms McGowan, following Oliver's death, that galvanised you and your husband into action. You wanted to make sure that this would not happen again but also that the community understood that what happened to Oliver could happen to other people as well. And you set out in your statement how you developed an advocacy campaign, and you say in paragraph 27 that to gain public interest you had to become social media smart. Now, you are very social media smart. What can you tell the Royal Commission about why you took the advocacy approach that you did and how you have used advocacy to highlight Oliver's case?
MS McGOWAN: For me, I was absolutely ignorant where social media is concerned. But I was driven, absolutely driven. For us, Oliver was so high functioning we couldn't believe this had happened to Oliver. And I, without doubt, realised that if it could happen to my son, it could happen to absolutely anybody else. So I will just pick up from paragraph 27 if that's okay.
To gain public interest, I had to become social media smart, and I joined Twitter and over 100 private autistic and learning disability groups on Facebook. I told people all about Oliver, explaining how clinicians were not effectively trained in how to understand autism and intellectual disability. I told them how they didn't understand how to make the most basic of reasonable adjustments, how this was wrong for the patients but absolutely wrong for the clinicians also.
I spent over 15 hours every single day continually asking people to sign my parliamentary petition. It really was incredibly time consuming and really, really hard work. And I didn't allow myself time to grieve. I felt strongly that there were far too many people suffering like Oliver did for me not to do anything about it, and I channelled my grief into doing something positive, and I still do this to this day.
As part of Oliver's campaign I travelled from Australia at my own expense and went across to England going into medical schools and hospital trusts telling Oliver's story and teaching them about the most basic and reasonable of adjustments, STOMP which we've talked about, and the principles of Ask Listen Do. These principles are basic, and they are: ask, ask people with a learning disability autism or both, their families and carers for their opinions and concerns about their treatment, that treatment that belongs to them.
Listen: listen to all involved and show respect to those opinions and concerns.
Do: do something about it and work in partnership with them.
MS EASTMAN: And so this has led to the Oliver McGowan Mandatory Training in Learning Disability and Autism. You've worked on developing this particular training program because you believe that doctors and clinicians, if they were trained in understanding autism and intellectual disability, might be able to achieve better outcomes. What can you tell the Royal Commission about the Oliver McGowan Mandatory Training and the roll out that is presently occurring in the UK?
MS McGOWAN: Thank you. The Oliver McGowan Mandatory Training in Learning Disability and Autism is Oliver's legacy. When Oliver was being treated by the doctors and in hospital, I believed that the doctors and clinicians were trained in autism and intellectual disability, and I believed that they knew more than me. Me, as an early years educator, specialising in autism and intellectual disability, I thought they knew more than me. However, it became clear from Oliver's inquest into his death that there was no mandatory training for health professionals in relation to this issue.
On 22 October 2018, I took my petition to the UK Parliament demanding that training on intellectual disability and autism be mandatory for all health and social care professionals. This petition ultimately led to the UK government making a commitment in 2019 to introduce the Oliver McGowan Mandatory Training in Learning Disability and Autism for all health and social care staff.
This commitment was outlined by the UK in their consultation response that was titled "Right to be Heard". This commitment was also in response to the recommendations made in the second annual Learning Disability Mortality Review which I will describe below.
The Oliver McGowan Mandatory Training in Learning Disability and Autism is now being trialled in England and will be evaluated before being rolled out nationally.
I hope we will also manage to get the UK Health and Social Care Act 2008 Regulations 2014 amended to require all NHS and social care providers who carry out regulated activities to ensure that their staff have achieved the learning outcomes relevant to their role. Current plans are that these changes would come into force in
MS EASTMAN: Now, in your statement you outline how you became involved in the STOMP campaign and provide the Royal Commission with a very detailed overview of the STOMP campaign. But I want to ask you about another campaign that you've also been involved in and ask you to talk about the importance of the Learning Disability Mortality Review, the LeDeR issue. This starts at paragraph 50 of your statement. And you say in your statement:
[This] is a national programme that was established in 2015 to conduct reviews of [the] deaths of people with learning disabilities.
I think someone had just said, is a learning disability an intellectual disability, how is that language used between Australia and the UK?
MS McGOWAN: A learning disability and intellectual disability is the same thing, absolutely the same thing.
MS EASTMAN: What about LeDeR? Tell us about LeDeR and the importance of LeDeR.
MS McGOWAN: LeDeR is vital, I believe. LeDeR, important or the Learning Disability Mortality Review is a national program that was established in 2015 to conduct reviews of the deaths of people with learning disabilities. The University of Bristol is one of the partners in the program which is funded and run by NHS England.
Now, I understand that the program was established in response to recommendations of the 2013 report of the Confidential Inquiry into the premature deaths of people with intellectual disabilities known as CIPOLD. CIPOLD reported that compared to the general population, more people with learning disabilities died from causes that were potentially amenable to change by good quality healthcare.
According to the University of Bristol website:
A key part of the LeDeR program is to support local areas to review the deaths of all people with learning disabilities aged four years and over irrespective of whether the death was expected or not. The cause of death or the place of death. This enables them to identify good practice of what has worked well [and what hasn't], as well as improvements to the provisions of care could be made.
Oliver's death is currently being reviewed by the LeDeR Review right now.
MS EASTMAN: If I can pause there. You don't know the outcome of that review yet; is that right?
MS McGOWAN: That's right.
MS EASTMAN: In your review you've set out some lessons that you think might be lessons Australia could learn. Can I ask you to talk to the Royal Commission about some of the lessons that you've observed, based on having lived in Australia now for a period of time, and also your experience in the UK. So this is paragraph 54, and I think you wanted to read these last few parts of your statement to the Royal Commission. I invite you to do that.
MS McGOWAN: Thank you. I believe that there may be similar issues in Australia in respect of the over medication and premature deaths of people with disability. As such, there are lessons that Australia could learn from the STOMP campaign and through the LeDeR program. The key lessons that could be applied in Australia are awareness, training and communication.
I also think that Australia should conduct national reviews into the deaths of people with learning disabilities, like the LeDeR program. It is crucial to know how many deaths there are each year, and how many of the people with learning disabilities who have died prematurely were taking psychotropic medications. Such reviews could examine whether people with learning disabilities are dying preventable deaths. Through such reviews the causes of the high rates of premature deaths of people with intellectual disability and autism might be determined and addressed.
Among other things, Australia must address why so many people with an intellectual disability are medicated off label. We need to ask whether alternative non pharmaceutical methods have been trialled first when a person shows perceived behaviours that challenge, and they must be evaluated.
One of the key benefits of the STOMP campaign in England has been to promote awareness of this problem. In Australia, I work with children in schools and early years settings and I am seeing for myself that there are children in nearly every classroom who are medicated to control perceived behaviours. I am seeing children who, in my opinion, are over medicated. The children's reactions are very slow. They appear disengaged, and are not always able to interact with their peers.
There are attitudinal problems with respect to the use of medication, and many people do not seem to be aware of alternatives such as behaviour support or management techniques. When I've talked to members of the public in Australia about this issue, particularly people from older generations, they don't seem to know what to do other than to medicate people who have what they perceive to be behaviours that challenge.
Greater awareness can highlight the inequalities of people in health and social care that people with disability and autism face in Australia. Awareness will also help to tell us just how many people are dying premature and preventable deaths.
It is important that health professionals, social care and disability support workers all
have appropriate training in assisting people with an intellectual disability and autism.
Australia should also have standardised mandatory training in relation to these issues. As I have stated above, when everybody has been given the same training, this allows everyone to be evaluated, assessed and monitored in respect to this issue.
I believe the Oliver McGowan Mandatory Training in Learning Disability and Autism could and should be adopted here in Australia to support clinicians in gaining understanding of alternatives to psychotropic medications, and of how to make reasonable adjustments and of appropriate behaviour management.
Communication with people with intellectual disability and their families about their health and treatment is very important. Some of the health professionals who treated my son did not properly listen to our or our son's views regarding the use of psychotropic medication. It is vital that the patient is kept at the heart of all decision making, giving them an equal say in their care: their care and treatment that belongs to them.
Health practitioners who are supporting and treating people who have a learning disability and/or autism should, (a), ask people with a learning disability, autism or both, their families and carers for their opinions and concerns about their treatment; (b), listen. Listen to all involved and show respect for those opinions and concerns; and, (c), do something about it and work in partnership with them.
They should treat all patients in a way that they would wish to be treated themselves, with respect and dignity.
They must remember that the care that they are giving should always be in partnership with the patient and, where appropriate, with their families and carers. They must also understand how to make reasonable adjustments and how to modify their language and communication.
They must ensure that their body language is non threatening, not invading the space of the patient with intellectual disability, not standing over them.
They must be careful not to use a lot of medical jargon. They need to be aware that their patient may need time to process what is being said and they need information to be repeated. This does not mean talking to patients as though they are children.
In conclusion, ultimately, however, there must be Government support and commitment to addressing these problems. The Government must start taking these issues seriously from start to finish.
I have observed that Australia is a very proud country which says that it treats its citizens with fairness. However, I don't think this is always the case where people with intellectual disability and/or autism are concerned. The work of researchers like Professor Julian Trollor show that they are not always able to have equal health outcomes as the rest of the general public. It is not fair or right that they are dying
younger than their peers. It is not fair that professionals, clinicians, are not given the education and skills required to help them and enable patients with intellectual disability and autism to have better healthcare outcomes.
I truly hope that the Royal Commission will make recommendations that will help prevent a story like Oliver's ever having to be told here in Australia. Thank you.
MS EASTMAN: Ms McGowan, on behalf of the Royal Commission, we express our condolences for the loss of Oliver, but also to thank you and your husband for coming to the hearing room today and to share your experiences and also to assist the Royal Commission to understand about some of the developments that you've been involved in.
If it pleases the Commission, that's the end of Ms McGowan's evidence.
CHAIR: Thank you.
I will just ask if Commissioner McEwin or Commissioner Atkinson have any questions of Ms McGowan. First, Commissioner McEwin, have you any questions?
COMMISSIONER McEWIN: Thank you, Chair. I have one question.
Ms McGowan, talked about the Oliver McGowan Mandatory Training. Could you help us briefly which individual and organization may be involved in designing and delivering that training?
MS McGOWAN: I will. So there was a trial where lots of organisations --- it was open to the public, charities, everybody where people were to put they were to place a bid that would look at it's called a Core Capabilities Framework and the Right to Be Heard document. And we were looking at what types of training they were to put forward and they were selected. Oliver's training must address culture. We have to look at our subconscious bias. We have to look at the laws, the Equalities Act, the Human Rights Act, the Mental Capacity Act. We need to address reasonable adjustments and the consortia that was selected will be looking at all of these core ingredients.
Oliver's training, to me, I always look at Oliver and what would have made a difference to Oliver, and what could potentially have saved his life, and that is what Oliver's training is about.
If I can add quickly, I feel strongly it is wrong that we expect our clinicians, doctors, nurses, social workers, that we expect them to suddenly know how to help a person with intellectual disability or autism when they are in a sensory crisis. How can we expect them to suddenly know what to do, how to de escalate a situation if they've not been given the skills to do so? We wouldn't expect them to go out and fix a car if they've not been given mechanical training, so why do we expect them to suddenly know how to treat and support our most vulnerable people? They simply don't have
the skills to do so right now, and it is affecting lives, it costs lives, and it costs the quality of life, and that's what Oliver's training is all about.
COMMISSIONER McEWIN: Thank you.
CHAIR: Thank you. Commissioner Atkinson, who I cannot see on the screen at the moment, but nonetheless do you have a question? Have we lost her? She said no.
As you can see, Ms McGowan, our technology is flawless in every respect. I want to add what Ms Eastman has said, to express on behalf of the Commission condolences for the loss of Oliver, but to say how proud you can be of what you are doing in his memory. The evidence you are giving is very important to us and the record of this Commission, and be rest assured we will pay very close attention. Thank you so much for coming today.
MS McGOWAN: Thank you.
THE WITNESS WITHDREW
MS EASTMAN: Thank you, Commissioners. If we can take an adjournment now until probably 12 or just after 12, and the next witness will be Dr Catherine Franklin.
CHAIR: We will take an adjournment until five past 12. Thank you again.
ADJOURNED [11.44 AM]
RESUMED [12.06 PM]
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Commissioners, the next witness is Dr Catherine Franklin who is joining us from Brisbane on the videolink. I will just say it's teething problems this morning. I'm sure we will get there.
CHAIR: We have Dr Franklin, I do believe.
MS EASTMAN: Yes.
CHAIR: Excellent. Thank you.
Dr Franklin, with a bit of luck my associate will administer the oath or affirmation as the case may be, so please follow her instruction.
DR CATHERINE FRANKLIN, SWORN
CHAIR: Dr Franklin, thank you very much. Ms Eastman will now ask you some questions.
EXAMINATION IN CHIEF BY MS EASTMAN SC
MS EASTMAN: Commissioners, you will find a copy of Dr Franklin's statement in Tender Bundle part A behind tab 5, and a copy of Dr Franklin's CV is at tab 6 of the Tender Bundle, and I will ask you in a moment to receive those documents into evidence and be marked Exhibit 6.2 and Exhibit 6.2.1.
EXHIBIT# 6.2 - STATEMENT OF CATHERINE FRANKLIN
EXHIBIT# 6.2.1 - ANNEXURE TO STATEMENT OF CATHERINE FRANKLIN
MS EASTMAN: Dr Franklin, can I start with you. Your name is Catherine Susan Franklin?
DR FRANKLIN: Yes.
MS EASTMAN: And you are the Director and a Consultant Psychiatrist at the Mater Intellectual Disability and Autism Service at the Mater Hospital in South Brisbane?
DR FRANKLIN: I am.
MS EASTMAN: You are also a Senior Research Fellow with the Queensland Centre for Intellectual and Developmental Disability, Mater Research Institute, affiliated with the University of Queensland?
DR FRANKLIN: I am.
MS EASTMAN: You prepared a statement for the Royal Commission dated 10 September. Are the contents of the statement true?
DR FRANKLIN: Yes, they are.
MS EASTMAN: Thank you.
All right. I want to start by asking you about your professional background and your qualifications and your experience as a medical practitioner. You tell the Royal Commission in your statement that you've been a psychiatrist
(Pause due to technical issues)
I'm sorry, Dr Franklin, we are having fairly significant technical problems this morning so bear with me.
I'm going to try again, third time lucky.
CHAIR: Let's take a break for five minutes and let us hope that the IT problems can be fixed in that break. I'm terribly sorry, Dr Franklin. We will shall resume in five minutes.
ADJOURNED [12.10 PM]
RESUMED [12.11 PM]
CHAIR: Dr Franklin, we discovered the source of the problem but we're not going to mention it.
DR FRANKLIN: Thank you. I'm glad to hear that.
MS EASTMAN: I will backtrack a little bit. I think we were up to the stage where I wanted to ask you a little bit about your experience and background. So you've been a psychiatrist with 23 years experience as a medical practitioner, and 16 of those 23 years is working as a psychiatrist with a sub specialty in the area of psychiatry for young people and adults with intellectual and developmental disability, and you say in your statement you've worked with adults with intellectual and developmental disabilities since 2004. Can I ask you to tell the Royal Commission about the nature of the work and the nature of the sub specialty of psychiatry for young people and adults with intellectual and developmental disability?
DR FRANKLIN: So I actually started working in this area in the United Kingdom in 2004, and there really was very little to no training or work in this area in Australia at that time. When I came back to Australia, there were very few people working in this space and it has grown over time. My clinical work is really based on seeing young people and adults who are referred by general practitioners or specialist medical practitioners for a review, often, very often around their behaviour.
MS EASTMAN: And you have done some work with the University of Queensland
centre called the Developmental Disability Unit which was later the Queensland Centre For Intellectual and Developmental Disability. Is that part of the work you did with Dr Nick Lennox who the Royal Commission heard from at Public Hearing 4 earlier this year? Is that right?
DR FRANKLIN: Yes, that's correct, and that's where most of my work has been.
MS EASTMAN: And the Mater Intellectual Disability and Autism Service is commonly called MIDAS, is that right?
DR FRANKLIN: Yes.
MS EASTMAN: And you say in your statement, in terms of MIDAS, it's a small service with a small recurrent budget and that hasn't been increased for five years. How does this impact on the nature of the services that MIDAS can provide to people with intellectual disability in Queensland?
DR FRANKLIN: We are really the only outpatient clinic in Queensland for adults with intellectual disability or autism, and the problem that being a very small clinic raises is that we have a long waiting list and we can't respond as quickly as we would like to be able to see people. And we also can't offer ongoing follow up over time.
MS EASTMAN: I want to ask you now about some of the areas of your research and some of the research work in relation to intellectual disability and psychotropic medication. So this is part of some of the work that has occurred at the MIDAS clinic and at paragraph 16 you set out for the Royal Commission the nature of some of the research work based on clinical experience. Can I invite you to tell the Royal Commission a little bit about the research and the nature of the clinical experience supporting the research work?
DR FRANKLIN: So I think that it would be important for the Commission to understand that I am at heart a clinician, and the research that I've done and the education and other work is all based on my clinical experience and interest in the area. And so my involvement in research has been with Dr Niki Edwards around the attitudes of psychiatrists and psychiatry trainees. It has been on trying to find causes for particular specific health problems in people with Down Syndrome, and it has been trying to understand autism and mental health better. But the main theme is probably that it’s research that's clinically relevant.
MS EASTMAN: You've recently led an 18 month project called the MIDAS MHS In reach Project. What can you tell us about the project and where ask the research up to at the present time?
DR FRANKLIN: So that was an 18 month clinical project that was funded and commissioned by the Queensland Health Mental Health Service --- Mental Health, Alcohol & Other Drugs Service, and the intent of that was to work with the clients identified by the mental health services as having intellectual mental disability and
being complex. And that involved working with all of the different mental health services across Queensland and travelling across Queensland and providing specialised assessments and management advice to the mental health services.
MS EASTMAN: Go ahead.
DR FRANKLIN: So the project has concluded, and we are really just in the process of summarising the findings and analysing the information.
MS EASTMAN: Will those findings be published at some stage?
DR FRANKLIN: I hope that some of the findings will be able to be published, yes. That's my intent.
MS EASTMAN: I want to move now to the next part of your statement and we asked you, in preparation for this hearing, to assist us with some of the definitions and concepts, and the way in which some of the language is used both in a health sector and also disability sector. And I think as you're aware, some of the expressions can be controversial, and there's not always agreement about what is the right language and expression to use, so can I start by asking you about some of the basics. So bear with us, for those following on the live broadcast, if this is common knowledge but not necessarily to everyone.
Psychotropic or psychotropic medication, we've had both pronunciations, what is that medication and what does it do?
DR FRANKLIN: Well, as I outlined in my statement really, psychotropic medication is a term that broadly refers to any medication that affects the brain but is used clinically really to refer to medications that treat mental illness. The main classes of psychotropic medications are anti depressants, anti psychotics, mood stabilisers, which includes lithium and some anti convulsants, anxiolytics for anxiety, hypnotics for sleep, stimulants and anti dementia medications.
MS EASTMAN: And then in terms of "mental disorder" and "mental illness", some people might say these are fairly outdated expressions, we should be using "psychosocial disability". In your statement you explain why the expression "mental disorder" or "condition" is used and the context in which it is used for this Royal Commission's consideration of the use of psychotropic medication. So can I ask you to just tell us a little bit about mental disorder and the context in which it's used for the discussion that we're having this week?
DR FRANKLIN: So I think the reason I thought it was important to establish this difference really, it's because the terminology is important and used differently in different sorts of legislation as well. But a mental disorder is a broad description for a syndrome that's characterised by clinically significant disturbance in someone's cognition, emotional regulation or behaviour. But that can reflect dysfunction, psychological, biological or developmental processes underlying mental functioning.
It includes mental illness but it also includes intellectual disability and it includes epilepsy. And so that concept of a mental disorder is quite different to the concept of a mental illness, which is not necessarily pervasive, certainly not something that somebody is born with, and a mental illness is a condition characterised by a disturbance of thought, mood perception or memory. And so those are two distinct entities but you will hear both terms used.
MS EASTMAN: And in terms of people with intellectual disability, is there any information by statistics or otherwise as to the prevalence of mental illness in the population of people with intellectual disability, I think often medically called co morbid. Is that right?
DR FRANKLIN: That's right. Another term of terminology that could probably do with a review. Mental illness is at least --- but most of the literature would suggest that mental illness is actually more common in people with intellectual or developmental disability, and so then this becomes relevant to this discussion as well.
MS EASTMAN: Now, the expression challenging behaviour or behaviours of concern, you've said in your statement these are expressions which are used synonymously by the NDIS. Can I ask you, in terms of these expressions, do they have a clinical meaning, and if so how and why, and if they don't have a clinical meaning, why are we using these expressions?
DR FRANKLIN: Well, I think like many types of terminology, they evolve over time but the problem with labels is that they become misused over the time, and I think the term "challenging behaviour" when it was first introduced was introduced to refer as the definition says, to behaviour that threatens the quality of life or safety of the individual. The problem is that over time people have come to use that term to describe any behaviour and also there is concern that there is the innuendo that the problem lies within the individual ---
MS EASTMAN: Is that the case?
DR FRANKLIN: No. So really the way that we understand behaviours of concern or challenging behaviour is and one of the probably most revolutionary at the time ways of understanding it is to think about the fact that it's occurring in context, and that it often relates a lot to the environment around the person and that thought that if things could be changed, perhaps the challenging behaviour would no longer exist. This then suggests it's not inherent to the person.
MS EASTMAN: In terms of sort of usage in the community, I think these expressions are used. In terms of your practice and your experience, is there any move away from using these expressions and finding some better and more appropriate language that deals with medical issues but also understands the social model of disability and a human rights approach to disability?
DR FRANKLIN: I think in the academic literature that there's ongoing discussion and that there is movement, most recently, to behaviours of concern but there's probably still issues with that and some of that comes down to the culture of understanding. Within the medical profession the difficulty comes when challenging behaviour is considered a diagnosis in its own right. And really challenging behaviour is a symptom, not a diagnosis.
MS EASTMAN: And if I just go with the phrase "challenging behaviour" at the moment, is there any evidence of the prevalence of challenging behaviour for people with intellectual disability that has been reported or recorded, and you make a reference to this in paragraph 26 of your statement. What can you tell us about that?
DR FRANKLIN: The prevalence rates vary in the literature between about 5.7 per cent and 17 per cent. So a fairly broad range, but not insubstantial across the population of people with intellectual disability.
MS EASTMAN: And you describe in your statement that there is a need to understand challenging behaviour as a form of communication. Can I ask you, from the perspective of your work and looking at this from a clinician, can you help us in understanding how we would look at challenging behaviour as a means of communication?
DR FRANKLIN: So from a clinical point of view we often hear people say there's no trigger, there's no reason, they just do it. It's spontaneous. But I think that the specialists in behaviour support and across that area do all agree that behaviour is always communicating something. And I like to give the example that all of us communicate and all of us do actually use behaviour to communicate. Some of that is more adaptive than others but for people who have limited verbal communication, their behaviour becomes sometimes their only way of communicating. And it may be communicating that they don't like something that somebody else is doing. They are in pain or that they feel something else. But, importantly, there is always a reason. And that thought that there is always a reason is what we try to follow in the clinical context, and that's trying to find what the reasons are and why the behaviour is really occurring.
MS EASTMAN: When you're looking at that circumstance of communication, are you looking at challenging behaviours as identifying acute situations where there might be a very significant problem and the behaviour reflects that, or are you looking at that in terms of perhaps just day to day behaviour? As you said, we can all display behaviours that might be the tone of our voice, it might be an expression on our face, it might be a tightening of body language. I want to understand from you, in terms of understanding challenging behaviour as a form of communication, is whether it's only in an acute setting or whether it's the everyday.
DR FRANKLIN: And so I think it's all communicating, but what we need to do in that professional sense is to try and draw the line between what is normal communication and what is a behaviour of concern, and that's where some of these
attempts at definitions come in to really try to look at the problems that the behaviour might cause for the individual and the consequences of that behaviour. And so, really, that's how you arrive at these definitions around behaviours of concern or challenging behaviour. Really, it's the impact and the severity of it that delineates that from what might be more or within the realms of normal communication.
MS EASTMAN: I want to move now to when challenging behaviour and psychotropic medication meet. You say in paragraph 29 of your statement that:
Psychotropic medication is most commonly prescribed for people with intellectual or developmental disability by general practitioners, pediatricians, psychiatrists and neurologists.
And it's prescribed for the treatment of mental illness, as we've referred to earlier, but also for the primary purpose of reducing challenging behaviours.
So the Royal Commission will hear, during the course of this week, that when one is looking at prescribing of psychotropic medication, if it's prescribed to manage behaviour, then that can be a form of what's called chemical restraint. And if it's prescribed by a medical practitioner for a medical condition, then it's not a restraint and it might be dealt with differently. So just looking at what you say in paragraph 29 and that the medication is prescribed by general practitioners, pediatricians, psychiatrists and neurologists, is it the case that the medication will always be prescribed by a medical practitioner regardless of whether it's for therapeutic use or non therapeutic use?
DR FRANKLIN: Yes.
MS EASTMAN: So I can't look up on the internet and say, "Well, I think I might order this", the doctor is the gateway, is that right, to the prescribing of psychotropic medication? All right.
Well, exploring that further, if a doctor is prescribing psychotropic medication, you make some observations about the history of prescribing such medication for people with intellectual disability over a number of years, touching back on institutionalisation of people with intellectual disability and then more recent changes. So can I ask you in paragraph 30 of your statement to just tell us a little bit about what your research has taken you to in looking back at the practices in the 1950s and 1960s?
DR FRANKLIN: I think the history is very important, particularly in psychiatry, but particularly also working in this area, a lot of the patients that I work with have lived in institutions, and understanding that experience for them is helpful and understanding how the medications came about is also helpful in looking at the situation that we have today.
And I think there were multiple issues around institutionalisation and
de institutionalisation, but it is noted historically that the development of anti psychotics and soon after anti depressants in the late 1950s and 1960s revolutionised the treatment of mental illness and is thought to have contributed to the de institutionalisation movement, but we also know that people with intellectual disability were also treated with --- whilst some of them may have had mental illness, it wasn't considered that they could have mental illness and they were treated with medications as well often in very high doses, and that's where we see some of these practices dating back to.
MS EASTMAN: At paragraph 32 you say in your view the de institutionalisation movement occurring at the same time, where there was an increased focus on human rights and normalisation theory, effectively distanced people with intellectual disability from the medical profession.
Now, I think Commissioner McEwin has a question he wants to ask you about what you say in paragraph 32.
COMMISSIONER McEWIN: Thank you, Ms Eastman.
Dr Franklin, within the context of that statement you've made, what do you think might be some of the solutions to ensure that people with disability can get access to, you know, support that you provide when they are living in these institutionalised setting?
DR FRANKLIN: So if I understand correctly, you are asking about accessing services from the community or, from ---
COMMISSIONER McEWIN: Thank you, I will try and be as clear as possible. People have moved from institutions into the community, and my reading of your paragraph 32 is that in your view, this effectively distanced people with intellectual disability and the medical profession, so what are some of your ideas or solutions to ensure that they can get access to the medical profession?
DR FRANKLIN: As a medical professional, I have to say that there has that the divide still remains, and there seems to be really a lack of feeling of responsibility for people with intellectual disability as a specialist group requiring additional, if anything, care rather than less care. And I think that there is still you know, that was back in the 1950s and 60s but there is still very much a "This is not a health problem, this is your disability" and, you know, you don't "We don't look after people with disability or we don't look after people with autism", and there is still that ingrained culture of "We don't do this work, someone else must do this work."
And I sometimes wonder whether, if we did ask everybody, I think people would really think that there were extensive health services for people with intellectual and mental disability, and they might be shocked to learn that there are not. I think this is where it came from. I do want to make clear that de institutionalisation had lots of issues, but overall people have had a much better life in the community. There are
still people living in institutions now, and there is a lot of work to try and get them out of there, but I think the whole role of medications and the medical profession, really, in facilitating in what was a lot of over medicating of people as well as a lot of other abuse clouded the issue and that divide seems to have dated from there.
MS EASTMAN: You also tell the Royal Commission that in your view and clinical experience, that in the population of people without intellectual disability and developmental disability, many people exercise choice and they have a choice of being non compliant with psychotropic medication
DR FRANKLIN: Yes.
MS EASTMAN: --- but for people with intellectual disability, you don't see that choice in the same way, and you make this observation, that their medications are often administered and supervised by carers, which means those with support are highly compliant with prescribed medication. Just pausing, there is a little tension in that; isn't it the case if the medication is prescribed for a proper therapeutic process with an underlying diagnosis, that the use of the medications can enhance a person's quality of life and help them manage their particular health situation, and in turn that may facilitate participation in the community? So non compliance can be an issue, but are you saying in the statement that the high level of compliance for people with intellectual disability might also hide the fact that there's not choice and consent in relation to when and how psychotropic medication might be used? Am I right in understanding that that's what you're talking about in that part of your statement?
DR FRANKLIN: Yes. From a clinical point of view working with people who don't have intellectual or developmental disability which I've done in the past, many people do and have the right to exercise that choice. And it is striking to me that people with intellectual or developmental disability don't have a voice, and even sometimes when they do, it's not listened to. And I think that this is one thing, if it's a treatment with proven efficacy for a known cause that it's effective for treating, but if we're talking about psychotropic medication, that is a different situation.
MS EASTMAN: And is the consequence perhaps of high level of compliance mean that it just sort of becomes the norm, and that people with intellectual or developmental disability tend to stay on psychotropic medication for a long time?
DR FRANKLIN: It means a high level of compliance, it means a higher level of side effects. It also means that they stay on medication for longer, and then if a problem or something else happens, then the dose is often increased or another medication is added, and that's how we see this increasing pattern with age where people have started on medication in their childhood. As they grow, the dose is increased, more is added, and we have this not uncommon picture of people on multiple psychotropic medications by the time they are in their 20s or 30s.
MS EASTMAN: I want to move now to the prescription rates of psychotropic medication in intellectual disability.
CHAIR: Just before you leave that, can I ask a question. Dr Franklin, in the same paragraph that Commissioner McEwin asked you about, paragraph 32, you talk about the divide between the medical profession and people with intellectual disability, and I think in your oral evidence you suggested that some in the medical profession say, "Well, this is not a problem or an issue for us, we don't deal with these kinds of problems of intellectual disability." Yet, the gateway to psychotropic drugs must be doctors. They must prescribe. There seems to be something of a paradox there because if there is overuse of psychotropic medication, it must be doctors who are dealing with people with intellectual disability and by hypothesis are treating them inappropriately. I'm just not quite clear how those two sides of the coin mesh, if I can mix my metaphors terribly.
DR FRANKLIN: I think that's a very good point, and I can understand what you're saying. I think that both of those things are quite likely to be simultaneously accurate, and probably what --- how that contributes to the final picture, is that that person coming and getting a prescription has not been able to be seen at a local Mental Health Service or not been able to be seen at the local hospital. And, yes, whilst they might be getting a prescription from a doctor, they very likely haven't had access to proper investigation of, at least, medical causes without even thinking about behavioural causes for things. So I think that both of those things are true but I do understand your point.
CHAIR: Thank you.
MS EASTMAN: So in terms of prescription rates, you say in your statement that there has been international concern about over prescription of psychotropic medication for at least 30 years, and you also say that one of the difficulties is getting reliable data in relation to the levels of prescribing of psychotropic medication, and that is both generally but also used as a way of restraining a person so the behavioural issues. In terms of the research that's available, what can you tell us about the prevalence of prescribing? And I think you've done some research with Professor Trollor in relation to this issue?
DR FRANKLIN: Well, I think that there's I think if we're looking around paragraph 35, I think, that the rates there are quoted from one of Professor Lennox's studies from his comprehensive health assessment program and some of the later programs that found psychotropic medication prescribing rates of about 43 to 54 per cent in the community, which are high. Those are very high rates.
MS EASTMAN: Paragraph 37, there is the Australian study of general practice encounters and that revealed some interesting practices, did it not, in terms of prescribing by comparing a population without intellectual disability and a population with intellectual disability? What did that research tell us?
DR FRANKLIN: That was a study of Professor Julian Trollor's, and I found that quite interesting in that the two most frequently prescribed medication for people
with intellectual disability were anti psychotics and then anti convulsants. But the population without intellectual disability, it was anti hypertension, high blood pressure, and penicillin antibiotics. That really is quite a stark contrast and I think an insight into the stark differences in people's lives and the medications that they are being prescribed.
MS EASTMAN: You make mention that in terms of addressing some of these practices, that some countries have introduced legislation, and you make the observation about the STOMP campaign which the Commission has heard a little bit about this morning and will hear more about during the course of this week. What's your experience with the STOMP campaign and its relevance to Australia, if at all?
DR FRANKLIN: I think that what interested and impressed me about the STOMP campaign is firstly that it was necessary. Following on from that, I think that it then is quite an innovative approach to a complex problem that has helped to, I think, raise awareness around over medication across a number of different populations and groups, I think. So thinking about the general population but also the medical profession, also other health professions. And so I'm really quite impressed at the ingenuity of it, but it also strikes me that it was at all necessary in the first place in this day and age.
MS EASTMAN: Now, you've touched on the side effects, particularly if there's long term use of psychotropic medication, and you develop this in your statement. Can you tell the Royal Commission about the nature of the side effects; what does it mean in terms of a person with intellectual disability being perhaps at higher risk of side effects and the impact in terms of a person's life expectancy and their overall health? What can you tell the Royal Commission about that?
DR FRANKLIN: I think the first thing to say is that side effects from psychotropic medications are common. The most common side effects are mild and those can be things like nausea and headaches. But then they can go on to sedation and affecting someone's cognitive functioning.
But the side effects are broad; they also include impotence, weight gain, increased risk of diabetes, osteoporosis, Parkinsonian symptoms, movement disorders and, albeit rarely, death. There are a number of different ways that psychotropic medications can cause deaths in addition to Neuroleptic Malignant Syndrome that we heard about this morning. They can also affect the white blood cell count and they can cause arrhythmia, abnormal rhythm of the heart. All those side effects we just talked about are side effects of atypical and psychotropic medications. Some of the other psychotropic medications that don't have all of those side effects, but really that long list covers all psychotropic medications, but all of the atypicals have those side effects. So it's quite a long and pervasive list of short term but more concerning in some ways the long term side effects.
MS EASTMAN: So I want to jump to something you say in paragraph 50 of your statement, that:
The use of psychotropic medication for challenging behaviours aims to improve the behaviour by reducing excitation and aggression. [But] international guidelines clearly state that there is limited evidence for the efficacy of that medication and raise concerns regarding over prescription of medication .... [for] both children and adults.
Can I ask you quite a blunt question, and that is, why is psychotropic medication used at all if there is no compelling evidence of its efficacy and effectiveness?
CHAIR: To do what?
MS EASTMAN: To manage challenging behaviour.
DR FRANKLIN: So if we're it's a good question. Psychotropic medication for challenging behaviour is often families will tell you, and there are studies that show that it can be helpful in the short term. We don't actually know the actual mechanisms of that, we think that it's probably through calming, sedation, tranquilisation, whatever you want to call that. But why is it prescribed is probably more about the fact that it's a treatment that's easily available to a doctor and is a quick fix. I think that what gets lost in that process is that it's not treating the cause of the problem and a lot of the guidelines take into account the fact that certainly in the large scale studies, that there is not compelling evidence that psychotropic medication improves challenging behaviour. There is some evidence that it reduces behaviour, particularly in the short term, but also some in the long term as well. I think the guidelines, however, take into account the bigger picture, which is thinking about the fact that the medication is not treating the cause, but also the costs of this medication in the long term for the person, and the fact that and that really comes through when the recommendations about it really should be a treatment of last resort.
MS EASTMAN: And in your statement, towards the end of the statement, you deal with issues with prescribing psychotropic medication, so I want to take you to that part of your statement. It starts at paragraph 80, but in particular I wanted to ask you about the observations that you make around life span problems and we've touched on this a little bit a moment ago at paragraph 83. And I wanted to ask you about if there is regular prescribing of psychotropic medication to deal with challenging behaviour, what does this mean in the long term about a person's capacity to communicate with anybody --- their family, support workers or clinicians --- and what does it mean about a person's capacity to be able to consent to the ongoing use of psychotropic medication?
DR FRANKLIN: I think some of the issues that that raises, the first is that if someone is prescribed medication, yet the underlying reasons for their behaviour in the first place are not understood, the person learns that nobody listens and the behaviour continues. I think for people who have taken psychotropic medications for a long time, it becomes their normal, and it's only when they're taken off them that
the person and the people around them can see the differences and the improvements in their mental state. And so and that makes it difficult, then, around understanding for consent for ongoing treatment if you don't know what it was like before you were on it, I think. So that becomes a problem carried over. Of the people that we see --- so I work with people aged 16 and over --- by far, the vast majority that I see are already on psychotropic medications when they come to us. So it's commenced earlier in their life.
MS EASTMAN: Is there a way of removing those medications and how does that process of, I think what you describe as de prescribing --- this is paragraph 100 and following --- what does that process involve?
DR FRANKLIN: De prescribing is a process of gaining informed consent around the fact that perhaps someone's behaviours might be worse or they might develop problems when they come off medication, but also around a commitment to work together with the treating doctor to slowly reduce medication over time. It takes quite an amount of time and quite an amount of effort on everybody's part, and is most successful when everyone is committed to reducing the medication.
MS EASTMAN: The Royal Commission is likely to hear some evidence tomorrow from the experience in the UK and the suggestion being that there should be greater investment in de prescribing clinics. So if the premise is that the use of psychotropic medication should be last resort, then investing in allowing a person to get to a point where their life can be lived without psychotropic medication requires a de prescribing approach, do you have any views about the idea of de prescribing clinics? And, if so, what would that involve for Australia?
DR FRANKLIN: Well, I think one of the from clinical from a clinical perspective I think it's important to consider de prescribing in the context of everything else and it's overly simplistic to think that it's just about going and seeing someone and coming off the medication. I think successful de prescribing has to engage, and the studies on this area would suggest, that engaging with carers and family and the people supporting the individual is equally, if not more important, than actually what happens with the medication. There is also engaging with the treating doctor around the reasons for doing it. Having said that, the studies really show that it is possible. From a clinical point of view I would say that it does take time and it is most successful when you have enough time in a clinical context to understand the person and that there's an understanding around what their issues are and why they happen. But I think it sounds promising.
MS EASTMAN: Now, I'm going to move to the suggestions for change and improvement. But before I do that, Commissioner Atkinson, I think you've a question before I move to the final part of the evidence?
COMMISSIONER ATKINSON: Yes. Thank you. I'm sorry we're past the point but if I can go back to it. I just want to talk about the rights of people with intellectual disability. So if they don't have a diagnosed mental illness there's limited
efficacy for prescribing psychotropic drugs; is that correct?
DR FRANKLIN: I guess when we're talking about evidence, and if we're talking about the weight of evidence in the published literature, that the international guidelines would still acknowledge that there is a limited amount of evidence into the efficacy of psychotropics. There are individual studies and trials that would argue for efficacy and that's how some of these medications have been approved in some settings by the TGA in Australia.
But I think that the overall reviews such as those done by the Cochrane collaboration or the sort of reviews and recommendations by the NICE organization in the UK would all suggest a fairly limited amount of evidence for their efficacy. And I guess that the thing I have to explain there to is that if we're talking about intellectual disability and evidence, the fact that there is little research, you know, and limited evidence limited evidence could feasibly be because there hasn't been enough research or because it's actually ineffective. So that's the other issue. Yes.
COMMISSIONER ATKINSON: Thank you. But on the other hand, and I understand your answer and it's complex, but on the other hand if a person with an intellectual disability or autism has a mental illness, then they have a right to have the correct prescription and if that includes psychotropic drugs then that is their right also to have that prescribed for them. It's not because they have an intellectual disability they should not be having these drugs?
DR FRANKLIN: No. That's correct. And I think that that I think the best way to explain that is that these medications do treat mental illness and that's a thing that they, you know, that they treat the mental illness. But if we're talking about challenging behaviour, they don't treat the cause of the challenging behaviour. They're only managing the symptoms and that would be the distinction really. But, yes.
COMMISSIONER ATKINSON: I understand that. Thank you. Yes, Ms Eastman.
MS EASTMAN: So if we turn to the conclusions and suggestions for improvement, and this starts on page 28 of your statement. So it's your opinion that inappropriate and/or excessive prescribing of psychotropic medication for people with intellectual disability was once a hallmark of institutional abuse. I'm sorry, there is just some sound there. And you say it continues now and is symptomatic of a widespread lack of capacity in intellectual and developmental disability healthcare in Australia. And so your recommendation is the need for medical practitioners who lack understanding or haven't had education in this area to be aware of their lack of experience and knowledge and to be aware that that may place the practitioner in a situation where he or she is more vulnerable to the suggestion to tick the right box to make the problem go away approach. What suggestion do you make to address that particular concern?
Dr FRANKLIN: So I think that the important thing to say and that some of the I
think one of Niki Edward's studies would say that doctors are aware, they are aware that they lack capacity. But what doctors say is that there are no services to refer anybody to and that they don't know how to do it either. And so I think that the solutions are not are around better education for the medical profession but also access to specialised services for assistance in managing these really quite complex situations.
MS EASTMAN: Now, we haven't touched on that part of your statement where you provide the Royal Commission with quite a lot of detail about the relevant regulatory arrangements both in Queensland and what you've seen in terms of the rollout of the NDIS in Queensland. But if I'm looking at paragraph 105 and 106 of your statement, you do raise some concerns about those who do not qualify for NDIS support and whether the mainstream services lack capacity for that group. What suggestions do you make in terms of what you've observed about those who might be NDIS participants but also a large number of people who might not be NDIS participants but issues concerning prescribing of psychotropic drugs might arise for them?
DR FRANKLIN: And so I think that, you know, broadly what I've tried to summarise is that there really have been quite significant reforms in the disability sector since the Carter Inquiry in Queensland and a much improved awareness in the disability sector around restrictive practice and chemical restraint and the issues with chemical restraint. But unfortunately really there have not really been very many, at all, improvements in the medical system or resources or the medical profession's understanding of any of these issues. And that affects NDIS participants as well as people who aren't NDIS participants. People who aren't NDIS participants but have a disability are at a greater disadvantage because they don't have the safeguarding that the NDIS has brought in or the NDIS rules.
MS EASTMAN: And then the final point is about funding and research and you express some concern that there has been a decrease in the resources and funding and some of this might be related to a shift to the NDIS. But you wanted to make an observation about the importance of ongoing research but properly funded research. And that's the final question that I wanted to ask you.
DR FRANKLIN: So we have certainly seen difficulties and loss of funding around Australia in a number of centres in relation to the NDIS rollout. I think that the value of research and the value of academic centres looking at intellectual disability is immense in this area and it remains a very difficult situation to undertake research when there is no funding or little funding or funding that is threatened. And I think that really addressing this situation needs a comprehensive approach that is not just about increasing services but also about looking at research, at data collection and at education. We need all of those things really, I think, in order to effect change.
MS EASTMAN: Dr Franklin, thank you very much for your time that you've given us to the Royal Commission today. Commissioners, that completes Dr Franklin's evidence.
CHAIR: Thank you. Dr Franklin, I just have one further question, if I may. In paragraph 4 you describe yourself as a psychiatrist working in the sub specialty area of psychiatry of young people and adults with intellectual and developmental disability. Is there any accreditation process to acquire or be recognised as having expertise in that sub specialty?
DR FRANKLIN: No, there is not currently. It is at the stage where there is a within the Royal Australian New Zealand College of Psychiatrists there is a section of intellectual and developmental disability but that is joined by expressing interest. There is no particular training scheme which we would like to develop and work on because we really as a psychiatrist I firmly believe having had some trainees before that if we can give people the experience of working in a centre that works with people with intellectual disability and autism, that that is really the best way of building our workforce capacity. So in answer to your question, we do not have a training scheme or certificate at this stage. But we are trying to work towards one. It's difficult in that there are there would need to be funding to provide training positions, is one of the challenges.
CHAIR: Is there a particular proposal that has been formulated in order to address this issue of accreditation or training?
DR FRANKLIN: There has been preliminary work done by Professor Julian Trollor's group and Professor Trollor has surveyed Australian psychiatrists looking to see if there would be capacity for having intellectual disability psychiatry trainees and he has found that there would be capacity within services to accommodate them but nothing around funding, unfortunately.
CHAIR: Well, if you think that there's a basis for a policy recommendation from a Royal Commission, then one way of seeing whether that might be done, without taking that any further, would be to put in a submission to explain what would be needed, how it might be done and how much it might cost.
DR FRANKLIN: Thank you.
MS EASTMAN: Can I say that this will all be explored in a hearing that the Royal Commission proposes to conduct in December this year.
CHAIR: Even more so in that case. Dr Franklin, thank you very much for giving your evidence. I will just check. Is there anything more?
COMMISSIONER McEWIN: No, I don't.
CHAIR: Thank you very much for giving your evidence. I apologise for the little glitches we have had but your evidence has been very helpful to us. Thank you so much.
DR FRANKLIN: Thank you very much.
THE WITNESS WITHDREW
MS EASTMAN: Commissioners, could we adjourn now until 2 pm.
ADJOURNED [1.05 PM]
RESUMED [2.00 PM]
CHAIR: Yes. Dr Bennett.
DR BENNETT: Commissioners, the next witness is Dr Manya Angley. She is giving evidence from Adelaide.
CHAIR: Thank you, Dr Angley, for coming to give evidence. I will ask my associate to administer the oath. If you would be good enough to follow her instructions, thank you.
DR MANYA ANGLEY, AFFIRMED
CHAIR: Thank you, Dr Angley. Dr Bennett will now ask you some questions. If by chance our IT systems have a little glitch, then we will attempt to correct it as soon as possible, but we live in hope that all will be well.
DR ANGLEY: Thank you.
EXAMINATION IN CHIEF BY DR BENNETT
DR BENNETT: Can you please tell the Commission your full name?
DR ANGLEY: My name is Manya Therese Angley.
DR BENNETT: And your professional address?
DR ANGLEY: No. 4 Gilles Road, Glen Osmond.
DR BENNETT: Dr Angley, you provided a statement for the Royal Commission dated 5 September 2020; is that right?
DR ANGLEY: That's right.
DR BENNETT: And you've read a copy of that statement recently?
DR ANGLEY: I have.
DR BENNETT: Are the contents of that statement true and correct?
DR ANGLEY: They are.
DR BENNETT: Now, Commissioners, that is to be found in Tender Bundle A and it's at Tab 7. It's to be marked as Exhibit 6.3. In addition to that there are four annexures, and they are to be marked as Exhibits 6.3.1 to 4. I tender those documents.
CHAIR: Yes, they can all be admitted into evidence. Thank you, Dr Bennett.
EXHIBIT# 6.3 STATEMENT OF DR MANYA ANGLEY
EXHIBITS# 6.3.1 THROUGH TO 6.3.4 ANNEXURES TO STATEMENT OF MANYA ANGLEY
DR BENNETT: Dr Angley, do you have a copy of your statement with you?
DR ANGLEY: I do.
DR BENNETT: Thank you. On page 4 you've set out your professional experience and your professional background, and you referred to your training as a pharmacist. Can you please tell the Royal Commission what goes into and what is involved with training as a pharmacist?
DR ANGLEY: Well, I have been a teaching academic for 20 years and into the undergraduate program there are various areas of study that are science based. So pharmacists are trained as highly skilled scientists, but pharmacists are also trained as health professionals. So they have the usual skill set that a health professional has. So the sciences that pharmacists are knowledgeable in at the end of their undergraduate four year training is in particular with chemistry, medicinal chemistry, pharmaceutical chemistry, biochemistry, microbiology, which enables them to understand the effect of drugs and their effect in the body, but it also equips them to see how the body handles the medications themselves. And that's largely the subject of pharmacokinetics, and pharmaceutical skills, and also knowledge of all the disease
states and the interplay between medicine and these disease states. So that's an undergraduate. That is then followed by an intern year where all of that knowledge gets applied into practice.
DR BENNETT: When you say you are trained as a health professional, how do you make that as distinct from the scientific background? What are the skills that attach to that?
DR ANGLEY: Well, all health professionals are trained in observing and gathering information and then trying to make sense of it. So for a community pharmacist, that might be around people presenting at a community pharmacy with a symptom, and the community pharmacist in turn will be able to treat minor ailments or make an assessment of whether a patient needs to be referred. So there may or may not be a product that's recommended and advice given. So that's one aspect of community pharmacy. And then there's also the area of dispensing medications which involves checking a prescription, looking for interactions with other medications the person might be taking, and also if there is any issues regarding that person's medical history and the medications --- and then it's ensuring that it's at the right dose, and that how to take the medication is communicated to the patient, informing them of any risks and side effects and informing them about what to expect and when to talk to their health professional if there are any unexpected or problematic issues with the medication.
DR BENNETT: You also refer to having some research experience and other clinical experience. Can you please tell the Commissioners something of your own background?
DR ANGLEY: After I completed my intern year as a graduate pharmacist at Flinders Medical Centre in Adelaide, I returned to the university as a junior academic and I embarked on a higher degree, and I completed a PhD part time while working as a junior academic. And that was from 1990 to 2010, apart from my period of parenting leave I worked as a teaching academic in the first instance and then later became a full time researcher because I was able to become a self funded researcher through achieving success with grant applications. And then I moved from academia, I remained an adjunct senior research fellow but I started my own research and consulting business where I have various endeavours which include undertaking research projects with various universities and organisations, and also I am also an embedded general practice pharmacist, and I in very recent years have held contracts with a number of aged care facilities in Adelaide where I do medication reviews for residents in aged care homes, and I also provide quality use of medicine services.
Within my general practice work I provide home medicine reviews. I have a special interest in providing medication reviews to people with intellectual disability as well. Aside from that ---
DR BENNETT: Dr Angley, later on in your statement you do refer to work doing the home medicine reviews, now might be a good time for you to explain to the
Commissioners what a home medicine review is and how you go about it.
DR ANGLEY: I will come go back a bit. I'm also credentialed as a consultant pharmacist to conduct medication reviews, so I did that credentialing in 2010 or I completed it in 2010, and home medicine review involves receiving a referral from a medical practitioner. Until very recently in April 2020, it was only a GP who could refer a patient to an accredited pharmacist to undertake a medication review. But since April other medical practitioners such as psychiatrists and pediatricians and neurologists and other physician based specialists can also do so. But it involves being equipped with medical information and it will depend on what the reason for referral is. The consultant pharmacist goes to a person's home and spends at least an hour with the patient and in the first instance they will reconcile the medication history of that patient to produce what's called a best possible medication history. So it's the most accurate current comprehensive medication list. And from there they will gather information that will enable that consultant pharmacist to marry with the information that's available from the refer error if, in my case, I have full access to case notes through the practice I work in, and in my aged care facilities that I service, I will incorporate all that information and produce a report for the GP or other prescriber, and I will produce a draft medication management plan which will include various observations, suggestions and recommendations to optimise medication use. It will also include some information around diet, lifestyle, mood, bowels, continence, whatever is relevant to that scenario. And in turn the referrer reviews that information and discusses it with the patient or their substitute decision maker or both and they finalise the medication management plan, which could be changes in doses, de prescribing, as Dr Franklin referred to. It could include recommendations for monitoring.
So in the case of anti psychotics, it might be monitoring blood tests or weight, et cetera. Blood pressure. And a monitoring plan may be included. So it's a very comprehensive service and plays a very important role in team care.
DR BENNETT: Right. So you've told the Commission that you go into the home of the person for example with an intellectual disability and you have various sources of information that you take in at the time. Do you speak to the person with the intellectual disability also as part of that process?
DR ANGLEY: Wherever possible, yes, definitely. So there may be some situations where it's inappropriate, but I would always attempt to engage with that person and communicate with them using whatever is their communication medium. But it also involves talking with family or support workers or any other key people involved in that person's care. And it will be different for every situation so you adapt it to meet the needs of that person. So it's very much a person centred service. And it's in their own home, which has a lot of advantages for a person with intellectual disability because going to a medical appointment and waiting and being surrounded by sensory overload can be quite distressing.
DR BENNETT: And is there other information about the environment of the person
with the intellectual disability that might assist you in the analysis you've to do?
DR ANGLEY: Absolutely. So a key role is observing for anything that might be relevant to that situation. So in some instances you would be observing for weight gain. You could be observing for mood. You could be observing for level of functioning. In particular, we would be observing for capacity to manage their medicines or to look at systems in place to identify if there are any improvements that could be made to optimise medication management. And medication management in that context is ensuring that the medication is taken as intended by the prescriber. So adherence is one word that we would use. It would also be looking to see that the person is able to consume that medicine. So there may be someone who has an aversion to certain tastes or textures, and if that was problematic you would be looking to problem solve how that medication could be guaranteed to be ingested if it was appropriate. But in the issue of chemical restraint, there would be a series of questions that I would ask to ensure that the chemical restraint was being administered as intended by the prescriber or as should be intended according to State legislation and national guidelines.
DR BENNETT: Right. Thank you. From paragraph 21 of your statement, Dr Angley, and that's at page 8, you set out the regulatory framework of medicine used in Australia, and at paragraph 21 you refer to the National Medicines Policy. Can you explain the role of policy in terms of the regulation of medicines in Australia?
DR ANGLEY: So briefly, the National Medicines Policy has four arms or four pillars. So the first pillar is around safety, quality and efficacy. The second pillar is around equity of access, so ensuring that regardless of one's socioeconomic status they have access to medicines that are safe and effective. The third pillar is quality use of medicines, and that is about judicious or appropriate use of medicines, and the fourth pillar is a viable pharmaceutical industry.
DR BENNETT: Right. That relates to a question I have about paragraph 22. You've talked about the central objective of that policy and then you say:
This includes minimising the misuse and overuse of medicines and using non pharmacological strategies whenever possible.
Can I ask you to address both those things in relation to what it is the policy says, so firstly, the issue of minimising the misuse and overuse of medicines.
DR ANGLEY: So misuse of medicines is when medicines are not prescribed consistently with current guidelines but it can also be substance abuse. So there's many interpretations of misuse. So the opposite of misuse is when a medicine is prescribed for the right patient, for the right indication at the right dose for the right period of time. So misuse is anything that counters that. And similarly, overuse is when medicines are prescribed for prolonged periods, when they are prescribed at high doses and when they're used for indications that are inappropriate. So there's some overlap between misuse and overuse. And in the context of psychotropics and
intellectual disability, I strongly believe that psychotropics are both overused and misused.
DR BENNETT: Right. And I will come back to that later, Dr Angley. Before I do, just ask you again, you've referred to using non pharmacological strategies wherever possible. What are you referring to there?
DR ANGLEY: Well, it has already been alluded to this morning, it's about having a behaviour support plan that is person centred and that will be developed by professionals with expertise in that area, whether it's an occupational therapist or a developmental disability education specialist. And it's a program that meets a person's needs to reduce any exacerbation of challenging behaviours. So I have also done some work in that space around --- whilst I was a researcher at the university, around the relationship between sensory processing disturbance and behaviour and many of the interventions that are used and many of the non pharmacological interventions are used are sensory based and can be highly effective, depending on the person's sensory needs.
But there is quite strong and compelling evidence emerging that sensory interventions can be effective for managing challenging behaviours. So other things are also very useful in managing challenging behaviours, and I could elaborate, but exercise, nature, et cetera. So it's all about patient centred approaches to develop the best behaviour support plan.
DR BENNETT: Thank you. Now, in your statement you then go on to give some evidence about the Therapeutic Goods Administration and that regulatory regime. Now, I know it's a big topic and I'm going to ask you, can you very briefly say something about the role of the Therapeutic Goods Administration?
DR ANGLEY: So the Therapeutic Goods Administration falls under the National Medicines Policy umbrella. And for a medication to become registered with the Therapeutic Goods Administration or the TGA it has to meet certain standards for safety, quality and efficacy. And if it meets those standards it becomes registered or it is given approval for the treatment of certain indications that are then listed in the product information for that medication. But there's another step whereby once a medication has TGA approval, it then can or a sponsor or a drug company can apply for it to be listed on the Pharmaceutical Benefits Scheme where it then is subsidised.
And in that instance, in addition to safety, quality and efficacy, cost effectiveness comes into play and the comparisons are made with existing therapies, so comparatively with respect to efficacy and safety with other agents.
DR BENNETT: Right. What you've also said following that at paragraph 29 is that:
.... prescribing of a medicine is considered to be appropriate if it is evidence based ....
And you've referred to evidence based prescribing of medicine elsewhere. What do you mean by "evidence based"?
DR ANGLEY: Evidence based is when there are well designed, well powered, control trials that demonstrate efficacy. So if you're looking at evidence base for efficacy, that is. So, for example, Risperidone is an anti psychotic which is one of the psychotropics that has been shown in randomised control trials to have efficacy for management of challenging behaviours in people with autism. So it's the only anti psychotic that has TGA approval and is PBS listed for management of behaviour in autism, and it also has approval and is listed for management of behaviour in people with intellectual disability. "Evidence based" means there's evidence from higher quality randomised control trials.
DR BENNETT: So you've said the TGA will have regard to evidence based medicine in relation to their regulatory system and you've referred to the prescribing of medicine. In that respect, how is it prescribers, so doctors writing prescriptions, how is it they have access to that type of data?
DR ANGLEY: Well so prescribers would access that type of information in consensus or evidence based guidelines. So in Australia, the key resources are the therapeutic guidelines, and the Australian Medicines Handbook is the probably the key resource that's used for prescribers and pharmacists and other health professionals like nurses. Then there are other various international guidelines that have been referred to earlier today, such as the NICE guidelines from the UK.
DR BENNETT: Right. At paragraph 32 you say:
A registered medicine can be legally prescribed for the treatment of a condition that is not included in the product information. This is referred to as "off label" prescribing.
Can you please explain to the Commissioners what that means?
DR ANGLEY: Well, off label prescribing is not illegal but it needs to be carefully considered with respect to evidence and safety by the prescriber before they write the prescription. In addition, there is a responsibility to inform the patient and/or the substitute decision maker that the medicine doesn't have approval for use in that particular condition, and they also have a responsibility to monitor outcomes with respect to efficacy and adverse effects and as per usual to undertake any monitoring that is required. So it's not illegal, but it should be done carefully and cautiously and certainly with informed consent of the patient.
DR BENNETT: You also say that at paragraph 33 that:
While the PBS is primarily a mechanism for subsidising medicines, it also has a role in guiding the judicious prescribing of medicines ....
Can you describe how that happens?
DR ANGLEY: That happens because if a medicine is prescribed off label then it's not subsidised by the PBS and the patient will have to pay full cost for that medication. So that then encourages the prescriber to go down the pathway of prescribing first line or trying to justify prescribing that medication because of say a mental health condition. And it's a difficult it can be difficult to distinctly identify specific mental health conditions in people with intellectual disability. So it's harder than I gather, I'm not a diagnoser, but I gather it's much more complex than in people without intellectual disability.
CHAIR: Do you come across cases where label prescribing is used in order to control what is thought to be challenging behaviour?
DR ANGLEY: Yes, I do.
CHAIR: Can you give us some idea of when that happens and how it happens?
DR ANGLEY: Well, I've submitted some case studies, or --- I think they've been redacted but I do describe three case studies where that happens.
CHAIR: I'm not so much concerned about the details of case studies as in general. How does this happen?
DR ANGLEY: In general, it happens when first line agents have been trialled and have been unsuccessful. So ---
CHAIR: Unsuccessful in doing what?
DR ANGLEY: In managing behaviour. Say for example a person presents with challenging behaviour. Risperidone, which has TGA approval and is PBS subsidised, will be trialled.
If that doesn't work at the recommended doses, the dose might get pushed up to anti psychotic doses. If that fails then they might change to an agent like Aripiprazole which is also an anti psychotic which actually has FDA approval in the United States, and there is some evidence of benefit in managing behaviour. So that might be tried next.
If that is not successful then the prescriber might go to Olanzapine, which has no evidence for benefit in challenging behaviour. But they will give it a go. So that is the scenario that I most often encounter.
CHAIR: So in that last case, that drug is not on the PBS so someone will have to pay full price?
DR ANGLEY: Well, if they obtain that prescription from a public hospital they
won't have to pay full price, they will just pay the usual PBS prices. But if they obtain it in the community, yes, they will need to pay full price.
CHAIR: To get it from a public hospital they would have to be an in patient, wouldn't they?
DR ANGLEY: Absolutely. Not an in patient but an in patient or an out patient. So they would need to be seeing a doctor within the hospital.
CHAIR: Thank you.
COMMISSIONER ATKINSON: May I ask about that second drug you mentioned, is that an example of off label prescribing because it has FDA approval but not TGA approval?
DR ANGLEY: Yes. That is an example of off label prescribing.
COMMISSIONER ATKINSON: Thank you.
DR ANGLEY: But it's a grey area because the evidence it's not grey whether it's off label or not, there is actually some evidence for benefit. So it's a reasonable choice for a second line agent.
COMMISSIONER ATKINSON: Thank you.
DR BENNETT: Dr Angley, going to paragraph 36 of your statement, now you heard you've listened in to Dr Franklin's evidence earlier today and she did refer to psychotropic medications and the sort of classes of them being anti depressants, anxiolytics and anti psychotics. Did you agree with the description that Dr Franklin gave earlier?
DR ANGLEY: Yes.
DR BENNETT: I think some reference was made to anti convulsants and you've referred to them in your statement. What role do anti convulsants play in people with intellectual disabilities?
DR ANGLEY: I think their role is limited. They are used for bipolar disorder. The evidence for benefit in managing behaviour is scant, but they are prescribed for that purpose.
DR BENNETT: At paragraph 37 you refer to psychotropic medications and you talk about appropriate use and inappropriate use, and prescribing, and you conclude with the view that as a result of inappropriate prescribing and/or administration of psychotropic medication, then you say, as a form of chemical restraint in with intellectual disability that it may constitute a form of abuse and neglect. Now, what is your reasoning to get to that view of the neglect?
DR ANGLEY: Well, my reasoning for that view is that if they are prescribed and it's not as an absolute last resort then that person has been denied their right to have proper intervention and care. I also think if they are prescribed medicines that don't have evidence for benefit, and they are solely being prescribed because of their tranquilising effects or their sedative effects, rather than addressing the underlying problems as Dr Franklin referred to, then that is abuse. And it's neglecting to give them the proper care that they are entitled to as human beings.
DR BENNETT: Thank you.
CHAIR: You said, I think, if I can ask a question, earlier on that as part of your home medicines review, you encounter cases where people with intellectual disability or autism have been prescribed medications --- and I think this was your term, as chemical restraints. Is it part of your role to determine whether in those cases the chemical restraints may constitute a form of abuse or neglect?
DR ANGLEY: My role as a consultant pharmacist, my duty of care is to gather information and make suggestions and recommendations. My role is not to change prescribing. So I just want to make that quite clear. I'm not a diagnoser and I'm not a prescriber, but my role or the potential role of all pharmacists in this scenario is gathering information. The guidelines the framework around chemical restraint is pretty clear, so if a psychotropic is prescribed for an indication that is not in the list of medical conditions, so it is being used to control behaviour, then that is chemical restraint. So that's just an academic exercise. So I do believe it's our role to identify it and then to make suggestions and recommendations around prescribing.
CHAIR: I don't want you to talk about individual cases, but I would infer from what you've said that you are likely to have come across cases where you have formed the view that the psychotropic drug that has been prescribed has been prescribed in circumstances that you yourself would regard as either neglect or abuse. Would I be right in inferring that?
DR ANGLEY: I certainly have seen scenarios where I strongly believe it is neglect and/or abuse. However, I don't always have all the information to hand around diagnosis, and I can only work on the information available.
CHAIR: I understand, and please don't take my questions to be critical of anything you have or haven't done. I'm just interested that if it is not the role of the expert pharmacist conducting a home medicine review to report these cases which appear to be neglect or abuse, how would anyone find out about it?
DR ANGLEY: I think that's a very good question. And I think that consultant pharmacists like myself need to be empowered to call it out and report it. I mean, we are trained in mandatory reporting for other aspects of abuse and neglect and formally it should be extended to chemical restraint.
CHAIR: Yes. Thank you.
DR BENNETT: Dr Angley, on your page 13 from paragraph 40 you give some evidence of the adverse affects of psychotropic medications. Just can you briefly say something again about your training as a pharmacist in identifying adverse events, and then again you do have a long list that you've given the Commission and it's here in your statement, but just say something briefly about the more common adverse events and their impact on the individual?
DR ANGLEY: Sure. So, as I alluded to earlier, pharmacists are trained as scientists so we do extensive studies in biochemistry, and so we are well positioned to interpret laboratory tests in the context of the medicine prescribed and the person's medical conditions. So the adverse affects associated, and I'm going to talk about anti psychotics because they are the most risky psychotropics and they're the ones I've listed in great detail in my statement. So because I'm sure it's in everyone's mind, I will firstly highlight Neuroleptic Malignant Syndrome which Ms McGowan outlined was the side effect of the anti psychotic Olanzapine that resulted in Oliver's untimely death, and that has been well described by Ms McGowan.
So other adverse effects that can occur with anti psychotics are weight gain and other metabolic effects such as dyslipidemia or cholesterol and other lipid issues. Weight gain can lead to Metabolic Syndrome, diabetes and together that can increase cardiovascular risk which means increased risk of having a heart attack or a stroke. Other adverse effects are direct to the heart where you can get abnormal heart rhythms that can lead to death. Hyperprolactinaemia is an adverse effect, that is the breastfeeding hormone, that can lead to all sorts of problems such as breast enlargement and breasts producing milk in both men and women. It can lead to disturbances in sexual function. It can also lead to amenorrhea, so period stopping in females. It can interfere with growth in children who haven't fully matured. Other abnormalities are blood issues, so blood cell changes, in particular white cell changes. Liver problems and other adverse effects which were also described by Ms McGowan extrapyramidal side effects. Oliver experienced oculogyric crisis, which is an example of an extrapyramidal side effect, you can get something called akathisia which is restlessness or agitation, you can get high blood pressure, you can get low blood pressure, and you can get electrolyte abnormalities such as hyponatremia, which can impact on cognition and also increase the risk of cardiac arrythmia, abnormal rhythm.
DR BENNETT: Thank you, Doctor, now I'm just needing to keep an eye on the time, Dr Angley. I'm going to ask you to go to page 32 of your statement. From the bottom of page 32 you've given three examples, de identified examples of cases that you came across in your home medicine reviews. The first one, who was referred to as Alex in Senior Counsel's opening, is your Patient 1. Could you please give a summary of what it is you identified and what you see as being some of the main issues that that particular case highlights?
DR ANGLEY: So Alex was actually Patient 2. So shall I talk about Patient 1?
DR BENNETT: No. I think maybe go to Patient 2.
DR ANGLEY: Go to Patient 2.
DR BENNETT: That starts from page 93. Sorry about that.
DR ANGLEY: So this was a young man who I saw in a regional area and he was referred to me via a GP in his town which was triggered by his mother. And he was living in --- not a group home because he lived by himself, but he had a behavioural support plan and a senior psychologist was concerned about chemical restraint. So together with his mother, the referral was triggered. And this is an extreme situation. So arguably the worst or the most extreme medication review I've conducted, where he was he had autism intellectual disability and a diagnosis of bipolar disorder. He was prescribed an anti convulsant, sodium valproate, which is appropriate for bipolar disorder. He was also prescribed two anti psychotics. One at the time had approval for mania in bipolar disorder. That has since changed. So it would be reasonable to use it now, according to guidelines, but it was prescribed at twice the maximum dose for psychosis.
He was also prescribed another anti psychotic which had no evidence has no evidence in autism or bipolar, it doesn't have TGA approval, and that was prescribed at one and a half times the maximum dose used for psychosis.
He was also prescribed another anti psychotic – Olanzapine, the same one Oliver was prescribed – on a when required basis, up to three times a day, and each one of those doses was the maximum dose used for psychosis.
He was prescribed two regular anti psychotics and a PRN anti psychotic at up to three times the usual dose for psychosis.
His support workers told me that he was not improving in any way with respect to his behaviour; in fact, his behaviour was worsening despite the escalating doses.
He was also prescribed an anti cholinergic agent called Benztropine which is intended to be prescribed when required, but he was prescribed that continually, and that agent can mask the development of these abnormal movement side effects that can occur that can become irreversible. And they're like Parkinsonian type movement disorders, and they are very distressing and disturbing. And they have a lot of stigma associated with them.
So --- he was also prescribed a benzodiazepine in very high doses, but that was just for sedation for medical procedures. But the issue here was that he was prescribed two regular anti psychotics, a third one on a when required basis, and none of it was working. So his mother had been told there was only one psychiatrist who went to that regional area, and that was the only option, and so my role was really to identify chemical restraint and to facilitate a pathway for him to see another psychiatrist who
was employed by a government agency, and for that to occur in a timely manner and to be fully assessed by the psychiatrist and then embark on a de prescribing program.
DR BENNETT: Right, and that is the type of recommendation you would make in those HMRs?
DR ANGLEY: Yes. Yes. As I said, that was an extreme case but it's the same type of process that I would go through. Plus, I also take the opportunity to, I guess, highlight to the prescriber or gather information for the new psychiatrist that would inform the pathway ahead. So I perused his case notes at the local State based disability provider and incorporated other information such as the behaviour management plan that was developed by the senior psychologist, and did my own observations regarding his sensory needs and his likes and dislikes to make it a very person centred report.
DR BENNETT: Right.
CHAIR: You would have regarded this as a case of abuse, would you not?
DR ANGLEY: In this case I would regard it as abuse. Yes.
DR BENNETT: I'm just going to take you to the end of your evidence, Dr Angley, because we're running out of time here. Very helpfully you've provided some conclusions and suggestions for change. In addition to the many number you've got there, at paragraph 125 you say:
Overall, there is a lack of Australian data regarding psychotropic (including antipsychotic) medicine use in people with intellectual disability. For example, the effect of anti psychotics on long term cognition when they are commenced in young people is unknown.
And you say they are unknown, and I think you referred to Alex as being someone who had been on medication for a very long time. Is it the case there is currently no way to identify this type of information?
DR ANGLEY: No, there is currently no way to identify that information because intellectual disability isn't coded. There's no way of working out which patients are getting psychotropics and for how long. And I think that Alex had been prescribed an anti psychotic from the age of four. So he had been prescribed Thioridazine, which has since been discontinued in Australia it was voluntary withdrawn from the company because of life threatening cardiac arrhythmias. From the age of four, for his lifespan, inevitably that will lead to premature death.
So Alex had a positive family history of cardiac disease so he has been prescribed very high doses of anti psychotics in combination, all of which can increase cardiovascular risk. So generally the rule of thumb is for anti psychotics, when they are prescribed for management of challenging behaviour, to be used at the lowest
possible dose for the shortest possible time.
So we know we have data in dementia patients. So we have today that that shows that anti psychotics in people with dementia increases the risk of TIA, stroke and death. It also shows they increase falls, they increase a risk of pneumonia, and I expect if we could have that data to hand, we would find at least those same problems in people with intellectual disability. And, of course, people with intellectual disability, young people commenced on anti psychotics become old people with intellectual disability, and so why would we expect anything different? And the earlier these medications are prescribed in people, the longer they're on them. When they're prescribed early, they have a lot of living to do, and there is a lot of harm that can be made.
DR BENNETT: And so finally and just taking up one of the suggestions or comments from Commissioner Sackville, at the moment you could go into somebody's home, do a home medicines review, you could write a detailed account and you could send it back to the referrer and at the moment despite all of your concerns and worries and your alarm bells ringing, that could actually be filed away and you have no way of knowing whether it has been acted upon or not?
DR ANGLEY: Well, until well, the business rules around home medicines reviews, and the same service in aged care, says there has to be an interaction between the consultant pharmacist and the GP. That doesn't always take place. But for claiming purposes, it should take place. It can be by phone or email. But sometimes there's no response. From April 2020, a consultant pharmacist can now do up to two follow ups. So they will identify following the initial review whether a follow up or possibly two is warranted, but it will depend on the medication management plan that is produced by the referrer. So that is a driver for the medication management plan to be communicated to the consultant pharmacist.
Those two follow ups also offer an opportunity to assist with implementation of a de prescribing plan or an opportunity to ensure that monitoring is undertaken, for example, with respect to weight, blood tests, et cetera, for anti psychotics. So since April 2020, which is a result of the recommendations from the Interim Report from the Royal Commission into Aged Care, there has been a vast improvement.
DR BENNETT: Thank you, Dr Angley.
That completes Dr Angley's evidence.
CHAIR: Thank you.
DR ANGLEY: Thank you very much.
CHAIR: Commissioner Atkinson?
Thank you very much, Dr Angley, for coming and giving your evidence. We
appreciate your assistance very much. Thank you.
DR ANGLEY: Thank you for the opportunity.
THE WITNESS WITHDREW
CHAIR: Ms Eastman, do we resume?
MS EASTMAN: Commissioners, the next witness has prepared some pre recorded evidence which lasts for about 15 minutes. So the next witness is Raylene Griffiths, and this part of the pre recorded evidence I will ask you to receive and mark as Exhibit 6.4.
EXHIBIT# 6.4 – VIDEO OF MS RAYLENE GRIFFITHS
Ms Griffiths has recorded her evidence with me, and she was accompanied by David Briggs, who is a support worker, so I will ask for that evidence to be played now.
PRE RECORDED EVIDENCE OF MS RAYLENE GRIFFITHS COMMENCED
EXAMINATION IN CHIEF BY MS EASTMAN
MS EASTMAN: Coming to the Royal Commission now to talk to us is Raylene Griffiths, and you can see her on the screen.
So I'm going to start by just confirming that you are Raylene Griffiths?
MS GRIFFITHS: Yes.
MS EASTMAN: And do you promise that the matters that you will talk about today, that you will tell the truth to the Royal Commission?
MS GRIFFITHS: Yes. I do want to tell the truth to the Royal Commission.
MS EASTMAN: Thank you. Would you like me to call you Ms Griffiths or Raylene?
MS GRIFFITHS: Raylene is fine, thanks. Raylene is fine.
MS EASTMAN: Raylene, can I start by asking about you?
MS GRIFFITHS: Yes, you can. And I'm to respond to you right now?
MS EASTMAN: Yes, please.
MS GRIFFITHS: I have a talent for advocating human rights. I love to do cooking and cleaning. I have friendships that I like. I love my Christian religion and I have lived experience with of schizophrenia.
MS EASTMAN: And you are a project worker at CID. What do you do in that job?
MS GRIFFITHS: I well, I advocate for people's human rights once again, and they live in group homes, and I'm producing Easy Read documents in the future to help them to understand their rights and to for them to make their choices.
MS EASTMAN: So Raylene, I want to ask you about where you live and your current home. Can I ask you about your home?
MS GRIFFITHS: Yes, you can.
MS EASTMAN: What would you like to tell us about your home?
MS GRIFFITHS: I live in a group home in Wollongong with five other people. I am an independent person. I go around on buses and trains. I have a good social life and I go to church. I do my own work on my computer and the people at the where I live respect me as a person.
MS EASTMAN: So where do you live now?
MS GRIFFITHS: Fig Tree, South Coast area, in a group home, as I said.
MS EASTMAN: Do you want to tell us about your home?
MS GRIFFITHS: Sometimes in group homes I find it difficult because of my mental health issues. I sometimes think people are talking about me or they don't like me, don't want to be my friend. The workers help me not to take it personally. My psychiatrist is helping me. His I won't mention names, I beg your pardon, I understand that.
MS EASTMAN: That's okay.
MS GRIFFITHS: I use quiet time with myself, and soul searching, to cope with any difficulties or conflicts in the house.
MS EASTMAN: And what do you like about where you live now?
MS GRIFFITHS: Good supports. Good attitudes. Workers bring a sense of humour into the workplace. Workers bring good feelings about everyone if they can. Workers help me with my personal things or problems. They listen to me. They like to give me work I like to give my workers compliments, which is what I do for them. They spend time to get to know me and build a relationship, and the meals are generous because I cook once a week and I know about it.
MS EASTMAN: What is your favourite thing to cook?
MS GRIFFITHS: I love apricot chicken. I love --- the other night it was stir fry with noodles and vegetables, yes.
MS EASTMAN: Sounds pretty good.
MS GRIFFITHS: Yes.
MS EASTMAN: So I wanted to ask you about your past home and you've lived somewhere else before you moved to the Wollongong area. So can I ask you about living in another group home?
MS GRIFFITHS: Yes, you can.
MS EASTMAN: And how long did you live in that group home?
MS GRIFFITHS: Two years approximately.
MS EASTMAN: And how many people did you live with?
MS GRIFFITHS: Four other ladies.
MS EASTMAN: And in that group home did people come to help you in the group home?
MS GRIFFITHS: Yes. There's always at least two staff members at a time in the house. There was an overnight worker all the time, just, you know, from approximately 9.00 till the next morning or something. Overnight in that when they got those beds [audio distorted].
MS EASTMAN: And can you tell us about how they helped out in your old home?
MS GRIFFITHS: They took me to appointments that I needed to go to. They helped me they call it healthcare reports which is HCR report. They allowed me to cook some meals. I also washed up, cleaned, you know. And also most of the staff were sympathetic to me when we had problems in the house. And they gave me moral support.
MS EASTMAN: So you've just mentioned there about having problems in the
house. And sometimes you did have some problems in that house, didn't you?
MS GRIFFITHS: Yes, that's correct.
MS EASTMAN: And sometimes you felt that you were bullied or ignored at that house?
MS GRIFFITHS: Yes. One of the ladies who lives there with me had an intellectual disability. I once tried to have a friendship with her but she used to ignore me very much. One time she locked me out of the house many sorry, many times she locked me out of the house. She hit me once. She was a very angry young woman. The staff told me she was jealous of me for good relationships with people, and I was fearing the consequences of living there.
MS EASTMAN: What did the staff tell you? Did they help you at all?
MS GRIFFITHS: The staff told me I wasn't expected to make friendships if I'm looking for that. I asked the staff to help her to learn to be kind to others, but --- and I left on good terms with some people but not all people.
MS EASTMAN: And sometimes in the old home some people were aggressive towards you. What happened?
MS GRIFFITHS: Yes, they do. One lady hit me one day, when we were going for a picnic to Kiama. I didn't understand why she did it because she's normally not that aggressive to me, her --- the person who I first know as the first person who bullied me to the best of my ability, the one other lady who lived there, she as I said, she sort of hit me one day. The first person also hit me one day a little bit on the buttocks. I was thinking to myself, I couldn't make friends any more. I felt so helpless then. There was a lot of tension in the house. I spoke to a worker and my sister to help me to relate it to the problem people, or people who I thought were causing me distress. I put a lot of effort but felt I was getting nowhere. For example, I I use I had, like I used to get taxis home because I couldn't walk home because I was anxious. I came home thinking I didn't want to be there, that I was gonna put myself in my room and didn't want to come out.
MS EASTMAN: It made you pretty upset, some of those events, didn't it?
MS GRIFFITHS: Yes, Kate, it did. And being judged, being treated badly, manipulation, anxiety. I felt very bad that I had I said this already. I started to get taxis instead of using just buses because I was worried. I kept thinking it was my fault.
MS EASTMAN: What helped you when you felt upset?
MS GRIFFITHS: I would ask the workers to speak to me about the problem. I tried to go out. I worked as a peer mentor as well as a peer associate at a few different
organisations. I tried to stay as much as possible from home. I felt trapped and bad when I was there.
MS EASTMAN: And did you ask anybody for help?
MS GRIFFITHS: Yes, I asked people for help.
MS EASTMAN: So who did you ask?
MS GRIFFITHS: I asked my mother and my sister and the staff at the first house. I spoke to management, two different area managers and a manageress. Started to take notes of all the problems. And David Briggs, David here, has received that document that I made out in my own words from notes I took when I was in the house two years ago. I also contacted the New South Wales Ombudsman's office. The lady there told me that I didn't deserve this sort of behaviour.
MS EASTMAN: And how did all of these people help you? Did they help you?
MS GRIFFITHS: Yes, in the long term.
MS EASTMAN: What did they do?
MS GRIFFITHS: Okay. Oh, yes, yes. Thank you. The company helped me to be a peer mentor. I got the job and helped people know about their human rights because I had experience in that sort of bullying or prejudice or what have you.
MS EASTMAN: So based on your experience, how do you think people should try to work out their problems?
MS GRIFFITHS: Yes. Education and training is the key. Get the management to help people to better live together. Give people choice about where they want to live and who they want to live with. Match match people to live together who are more suited to living together. Like, different backgrounds, interests. Problems, not seeing eye to eye, making them feel welcome in their own house so that we can experience peace and quiet in the house we're living.
MS EASTMAN: So can I change topics now and ask you about doctors. So can I ask you about seeing doctors?
MS GRIFFITHS: Yes, you can.
MS EASTMAN: You've seen a few doctors in your life, is that right?
MS GRIFFITHS: Yes. I see a psychiatrist in Wollongong. I talk to the mental health team when I have anxiety problems. I see a psychologist. I also see a lady GP who is very good. I get NDIS funding for the psychologist. Professionals as well.
MS EASTMAN: And how do these doctors and psychologists help you when you're upset or you're anxious?
MS GRIFFITHS: They give me choices and strategies to work through. Sensory activities and tools and all. I talk to them about how I am feeling.
MS EASTMAN: And do you ever talk to the doctors about taking medication?
MS GRIFFITHS: Yes. The psychiatrist talks to me about it. Yes. I recently changed my medication. It seems to make me feel better. But I still have problems with bad thoughts and voices, but I think I'm getting somewhere with it.
MS EASTMAN: And have you had any problems with taking medications?
MS GRIFFITHS: Yes, Helen Kate. This is Helen. Yes. One of the workers asked me why I was taking so much medication at night. We talked to the doctor about it who changed the times when I took the medication, so that made me feel better. Sometimes when I'm yeah, sometimes when I am late at night I tend have I eat things, and now they've got me on less food, and it's really a little bit more of a hot milk at night or something, because weight gain is a problem on medication, yes. So they've given me strategies to cope with it.
MS EASTMAN: And have you talked to your doctors about how the medicines are working for you? Do the doctors explain how the medications work?
MS GRIFFITHS: Yes, I talk to the psychiatrist.
MS EASTMAN: Does that help you?
MS GRIFFITHS: Excuse me, I just have to get the next page. Okay. Yes. I'm
MS EASTMAN: So the last question I want to ask you is what you would like to tell the Royal Commission. Is there anything else you would like to tell the Royal Commission about what you think would make things better for people with intellectual disability who live in group homes?
MS GRIFFITHS: Workers to have good and sound training.
Be upfront and honest about things.
Easy read for the people in group homes about what is acceptable.
Have a phone number to speak to someone about the situations that are happening. For example, Lifeline or mental health team.
Rehabilitation for people who have trauma, giving them self esteem or – self-esteem or what? Skills. Yes. Thank you, thank you, David, yes. In the group home. And
behavioural supports for people in the group homes.
MS EASTMAN: Raylene, thank you very much for your time and sharing your experiences with us and the Royal Commission today.
Thank you also to David who has supported you in giving your evidence today. So thank you very much.
MS GRIFFITHS: Thank you, Kate. Thank you so much.
PRE RECORDED EVIDENCE OF MS RAYLENE GRIFFITHS CONCLUDED
CHAIR: I know Ms Griffiths is not here with us at the moment but I would like to place on the record our thanks for her giving her evidence and talking to our Senior Counsel.
MS EASTMAN: Thank you, Commissioners. There is one final witness this afternoon, ABF. Perhaps we can have a short break of 10 minutes or so and then we can complete her evidence.
CHAIR: Thank you.
ADJOURNED [3.10 PM]
RESUMED [3.21 PM]
CHAIR: Yes, Ms Eastman.
MS EASTMAN: Commissioners, the final witness today is ABF. She has a pseudonym and she is appearing in Sydney at the offices of her counsel Mr Ben Fogarty. First, we just need to take ABF's oath.
CHAIR: Should we take an appearance first, I think perhaps? Yes.
CHAIR: Thank you very much for that and thank you very much for coming to give evidence. Ms Eastman will ask you some questions.
MS EASTMAN: Commissioners, a copy of ABF's statement can be found in the Tender Bundle behind Tab 15, and could I ask you to mark the statement Exhibit 6.5.
EXHIBIT# 6.5 STATEMENT OF ABF
EXAMINATION IN CHIEF BY MS EASTMAN
MS EASTMAN: You are ABF, and you've provided your name and address to the Royal Commission and you've made a statement dated 9 September. Can I ask you whether the statement is true?
ABF: It is.
MS EASTMAN: Now, I'm going to start by asking you some questions and working through a little part of the beginning of your statements.
You tell the Royal Commission in your statement a little bit about yourself. So you're married, you've been married for seven years and you've two daughters?
ABF: I do.
MS EASTMAN: And you have some family circumstances that you wanted to tell the Royal Commission about. So you've a mum and a dad and you've two siblings; is that right?
MS EASTMAN: And your mother has a mild intellectual disability?
ABF: She does.
MS EASTMAN: And both your parents have a culturally diverse background, is that right? I'm trying to avoid the particular things to identify. And English is your father's second language?
ABF: It is.
MS EASTMAN: Your dad was a very hardworking man up until his retirement in 2014?
MS EASTMAN: And post retirement he planned on looking after your brother but that didn't eventuate, and we are going to touch on that shortly. But your sister, who also has a mild intellectual disability, she continues to live with your parents. Is that right?
ABF: That's right.
MS EASTMAN: The evidence that you want to give to the Royal Commission this afternoon is to share your experiences and be a voice for your brother who you are concerned may be silenced, and you want to talk about his experiences and speak on his behalf in that context. Is that right?
ABF: I do.
MS EASTMAN: We've given him a pseudonym ABG, and he is your little brother, isn't he? What would you like to tell us about your little brother?
ABF: My little brother is, in his heart, just a person that absolutely loves people. He's super friendly. He builds attachments with people and when he does it's just the most loyal person you will ever meet. He never forgets someone that has been good to him. He has kept certain people that he was fond of in memory for over 20 years. He knows people by their cars, their shoes, their clothing. And he's just has a real sweet innocence about him.
MS EASTMAN: Over his life he's had a number of health problems.
MS EASTMAN: And when he lived at home with your parents then he went to see the GP from time to time and your parents accompanied him to the GP, and he had a good relationship with his GP. Is that right?
ABF: Yes, that's right. He was a familiar person, familiar to the family. My brother doesn't vocalise. He has the set vocalisations, so it's really obvious through his non verbal language when he likes someone, yeah.
MS EASTMAN: And he was in the care of a pediatrician when he was a child, and now he's an adult he's under the care of a psychiatrist, is that right?
ABF: That's correct.
MS EASTMAN: Now, in your statement you talk about your brother as having some behaviours that you say can be characterised as challenging.
MS EASTMAN: This might involve vocalisations, grabbing, tapping and sometimes
hitting people for attention?
MS EASTMAN: And these behaviours have been part of who he is as a person, is that right?
ABF: Yes, they've really evolved. So when he was younger he might have thrown items in protest, but more recently we have seen new behaviours emerge in order to gain attention.
MS EASTMAN: And so some of the triggers for the behaviours might be changes in his daily routine, if something unexpected happens, or if he sees a member of his own family who might be in distress?
MS EASTMAN: And sometimes the behaviours come out if he is feeling discomfort or pain. So there might be an issue that's raised about his health and the way in which he communicates his discomfort or pain is through his behaviour; is that right?
ABF: Absolutely. He has no other way of telling someone that he's hurting.
MS EASTMAN: And do you have a very close relationship with your brother?
MS EASTMAN: And over the time you both lived with him and known him, you've learnt how to understand his behaviour as a form of communication?
MS EASTMAN: And you've also watched other people engage with your brother who haven't necessarily understood that some of his behaviours are a form of communication. Is that right?
ABF: Correct. I think a lot of people find it hard to look past his disabilities and the behaviours he displays.
MS EASTMAN: So I want to ask you a few questions about some events in your brother's life that have seen him move from your parents' home into different accommodation and what some of the experiences are that you've observed as your brother has made his way through different forms of accommodation. So in 2013 your brother was given a diagnosis of bipolar disorder; is that right?
ABF: Yes. Thereabouts, yes.
MS EASTMAN: And you were doing your best to support him and your family but this is at a time when you had very small children yourself. You were working and undertaking studies.
MS EASTMAN: And so you did your best to help, but often you were called in to deal with really critical or crisis situations?
MS EASTMAN: And that arose in June 2013. So you say in the statement that your brother's behaviour escalated and that resulted in your parents taking him to hospital because they were concerned that there might be a medical issue underlying his behaviour. Is that right?
ABF: Yes. And back then, that's how we were guided; if you can't cope with my brother's behaviour, you're to take him to hospital, yeah.
MS EASTMAN: And so you recall in your statement, and I won't ask you to go into it this afternoon, that that experience of attending hospital was quite a scary experience for your brother but also for your family. Is that right?
ABF: Absolutely, yes.
MS EASTMAN: And he did spend some time in the hospital but after he was discharged, a few months later it was discovered that he had some major issues with his wisdom teeth. Is that right?
ABF: We actually discovered that last year when we removed them. And I asked the dentist, "Do you think that may have been a contributing factor many years ago?" And she said "Possibly, yes."
MS EASTMAN: And so when you reflect back on the events, I think you thought, well, maybe the pain he experienced because of the problems with his wisdom teeth may have been a trigger for the behaviours in 2013 that then led to the hospital admission?
MS EASTMAN: Now, then as you've mentioned, your dad retired in December 2014 and at that stage your brother still living at home with your mum and dad, and there were some support services that were coming into your parents' home to assist your parents and also to assist your brother; is that right?
ABF: Yes. They would take David out for the day.
MS EASTMAN: You say quite candidly that in the home, your parents haven't had a lot of support in terms of how to deal with some challenging behaviours that might have arisen in terms of them and your brother, and was this something that you observed right have created tension and seen your brother's behaviour escalate a little bit in the early part of 2015?
ABF: Yes, the biggest dilemma I always saw was because of my mum's intellectual disability and my father thinking that if he worked seven days a week, that was his best way of providing --- so he wasn't in contact with the therapist at all --- was that they were giving strategies, like a visual schedule, that my mother couldn't actually implement. So I would always say, can we drop down the demands for my mother so that we could achieve something that was more tangible that she could follow. So there was definitely therapists that tried to help our family, but I just think sort of bringing in those strategies that would have been helpful within the context of how we lived. That was never really achieved. So I think how services managed that was, "Let's just take him out", "Let's just take him out", so he never really acquired those skills within the home.
MS EASTMAN: And so at that stage, this is sort of in your father's early stage of retirement, that your brother spent some time in respite care. Is that right?
ABF: Yes. At a very young age actually, yes.
MS EASTMAN: Now, at the end of 2015 there was another incident that required your brother to be taken to the hospital and your father called an ambulance because he was concerned about how your brother was behaving in the house?
MS EASTMAN: So, again, hospital was the point of call and your brother spent some point of time in hospital, and this is when you had to become involved in speaking to advocacy services to say, once he's out of hospital, what options are there for accommodation?
MS EASTMAN: And so is it fair to say at this stage you were in a sense trying to support your own parents, but also your little brother and try to work out what was going to be appropriate housing and accommodation arrangements for the whole of the family --- and that job fell to you. Why was that?
ABF: I actually raised the alarm many years earlier, it would have been earlier in the 2000s. I just noticed that my brother was not able to stay inside the home for long periods of time and since he left school. Once he left school and lost that security and stability of school, yeah. I did ask for a long time, could we find supported accommodation. I thought maybe if is he in an environment with people that understand intellectual disability, put in all the routines, and they are trained, that we
can give him a really good life.
I think back then, I remember people saying to me, "You know, supported accommodation is really hard to get, you will wait 10 years." It was just so scarce. And it was up to families back then pre NDIS for us to fight, fight, fight for supported accommodation.
MS EASTMAN: And your "fight, fight, fight" involved sending letters, emails, contacted the media, and even doing a drive by of the local politician's office to see if you could get a response. Is that right?
ABF: Yes. Yes.
MS EASTMAN: And you were able to secure respite accommodation for your brother and that was the end of 2015?
MS EASTMAN: And he was in respite for about three or four months before he then went to live at his first group home?
MS EASTMAN: And so he moved into the first group home in early April 2016?
MS EASTMAN: Initially, he was in a granny flat, is that right, at the beginning?
MS EASTMAN: So he was living by himself and your observations in the early part was that that seemed to be working for him. Is that right?
ABF: Absolutely. And the house manager at the time, she was a fabulous communicator, she was very gifted in the intellectual disability space. She really respected him as an individual and I felt so secure in him being living in that accommodation.
MS EASTMAN: And in your statement you go on to describe what happened in October 2016 where there were some changes at the house.
MS EASTMAN: That meant that some other people came to live at the group home, and this raised an issue for you about your brother's ability to choose who he would wish to live with and whether or not the other people who came to live with him
were the right match for him. Is that right?
ABF: That's correct, yes.
MS EASTMAN: And so you noticed yourself, but you also received some reports that there were some issues with his behaviour, but also some concerns about injuries and harm to himself. Is that right?
ABF: Yes. All of a sudden there were scratches that would appear on his arms and even his torso and back and bruising. And they were unexplained.
MS EASTMAN: And then there was a move to another home for reasons that we don't need to go into, but the group move to another home and was it your expectation that maybe the change might be a change for the better and things would improve?
MS EASTMAN: But you observed that it was still a bit of a rocky road after the group moved into the new home which was March last year?
ABF: I was a bit worried because I knew another resident was moving into the granny flat and I knew that meant that there were probably more behaviours of concern presented there. My biggest concern was my brother is very much like a mirror, and he mirrors his environment and copies what he sees. And because I wasn't privy to, I guess, the challenging behaviours he would be exposed to, my anxiety was, would he start to mimic that, and then how do we manage that.
MS EASTMAN: Okay. Now, can I move up to more recent times. 2020 has been a pretty challenging year for everybody, and as you are aware, the Royal Commission recently held a public hearing on the impact of COVID 19 on people with disability. COVID 19 had a real impact on your family and your brother, isn't that right?
ABF: Enormous impact, yes.
MS EASTMAN: And so for him, the changes to his routine in that early part of the pandemic in late March and into April, the inability to be able to go to the gym, the inability to be able to participate in some of his activities, you thought might have been a reason for seeing some changes in his behaviour and that caused you concern. And even to the point, and I'm working through your statement a little bit here, you made an application to the New South Wales Civil and Administrative Tribunal to apply for a guardianship order in relation to your brother. Is that right?
ABF: Yes, that's correct.
MS EASTMAN: And you made a decision that you thought that the issues and the tension in the house that you observed, that it might be time to look for some
alternative accommodation for your brother; is that right?
MS EASTMAN: And so a few weeks ago he moved into some new accommodation; is that right?
ABF: That's correct.
MS EASTMAN: And what's the nature of his new accommodation?
ABF: He lives alone with no other person. He's in a flat, a ground level flat and he has support workers with him, and that's, you know, around the clock.
MS EASTMAN: And he has also had to have some surgery this year. He's had some surgery in late July?
ABF: Yes, that's right. Yes.
MS EASTMAN: And one of your concerns is that the condition that caused him to have surgery, that might be a factor in terms of some of the behaviours that he has displayed in the early part of 2020; is that right?
MS EASTMAN: Now, at the present time your can I put it this way, your fingers are crossed that the new accommodation is going to work out to be better. And what impact has that had on you personally because you've really taken up the call to be a very strong advocate for him, particularly this year? So what impact has all of the advocacy and the drive bys and the emails and the phone calls, what impact has that had on you?
ABF: Well, gosh, where do I start? It's significant. I guess I don't see my husband and my children. You know, I make a point to make sure I'm there at school pick up every day but I don't get to just have down time with them. It has been a huge financial impact on us so I haven't been able to work since March and that's a huge amount of pressure for my husband to carry. It's had a real impact on me. I've had to be so strong for my brother and have really difficult conversations which I know is going to put people off side. But I have to always weigh up his life, what is best for him, and not really care about what other people think about me. But, you know, I'm human too.
It's strange, my relationship with my parents and my sibling I mean, we've got so much unconditional love and we are such an enmeshed family but I hate how sometimes I have to be short because we're in a crisis. I hate how I can't have a cup of tea with my mum and just chat or take her to the zoo, which she loves. I hate how my daughters don't get to see my brother. And seeing my brother regress and not
knowing if he is safe, sometimes I'm up at night going I'm trusting these people with him because my trust has been violated. It's a real different reality I live in right now.
MS EASTMAN: How does that make you feel?
ABF: It can make me feel very isolated and that's the devil in all this and I just reach out and I've got wonderful, wonderful friends, wonderful support network, wonderful therapists around and the support workers around at the moment are just gorgeous. And I just have to make myself reach out because it can feel really, really lonely. Yeah.
MS EASTMAN: You've wanted to share your experience with the Royal Commission not because you want to point the finger or to say anybody is to blame but you wanted to share a little bit of a window into the life of your brother and also the impact on your family. And you've made some suggestions and you've got some ideas in your statement. So if you've got a copy of your statement, can I ask you to turn to page 32 and paragraph 133. And you tell the Royal Commission that you mostly worry that your brother now has a reputation of being a violent individual and he reacts to how he is treated.
Can I ask, as you've walked with him and sometimes I think you've gone out on excursions to parks or you're in the community, what is it that has caused you to have this worry about your brother's reputation but also how other people in the community see him? Can you tell the Royal Commission a little bit about that experience?
ABF: I think our society doesn't have much exposure to people like my brother. I know that probably sounds so terrible. But, you know, I walk around with my brother and I'm like, "Where has everyone gone?" I don't see many people with severe intellectual disabilities that are non verbal that might yell out, you know, "Hello", that might just walk, you know, a little bit differently, that might not behave so well according to all these, you know, social rules we abide by.
And because he's so different, as soon as we're walking I see everyone hold their breath or, you know, move their children away or look at him. Because he does yell out. He's so excited to see people. He wants to tell everyone what he loves because he thinks everyone loves the same thing as him. And because he's got this amazing booming voice, because he's this big tall man, I think everyone thinks he's violent. And I have to sort of address my own fears and, you know, because people look to me and I have to stay calm and I have to have a smile on my face and my quick sort of explanation just so we can have a nice social experience outside of the car, outside of the unit, away from the national parks. Because he has regressed so much socially because, especially during COVID, he had to be in the national parks, he had to be in the car for 15 hours a day.
MS EASTMAN: You're now accessing specialist support coordination and that is to
support your brother but also to help you to be able to make the decisions and to make decisions that help your brother exercise his choice and control. Is that right?
ABF: Yes. And she helps me understand how to navigate NDIS. I've worked in the disability sector for over 15 years, I have a Masters Degree and in that Masters Degree all my assignments are around disability and I can't even navigate the NDIS adequately to get my brother the funding he needs. And so she helps me understand what we need so that maybe one day I don't have to provide direct care. Maybe one day I can spend time with my family and go back to work.
MS EASTMAN: And you want to be able to assist your brother so that he can make some decisions about his life, who he lives with?
MS EASTMAN: And you say he might be better suited to be somebody who lives by himself; is that right?
ABF: That's right. But that's
MS EASTMAN: And as you also say in the statement, he might also be better suited to more individualised outings where he can build up his skills such as being on a boat and sailing or returning trollies to the supermarket or collecting rubbish on beaches. Does he agree with that suggestion?
ABF: He loves it. He is in heaven. He loves rubbish bins.
MS EASTMAN: And recycling.
MS EASTMAN: And you say your brother has a very strong sense of responsibility and loves nothing more than to help others and return items to their proper places.
ABF: That's him.
MS EASTMAN: And so your wish for him is that if he can build up his own skills, that again might help him to find a way through for his behaviours?
MS EASTMAN: And again allow him to have that participation in the community; is that right?
ABF: Yes, and maybe even become a valued member of the community, because he might be cleaning up all the rubbish on the beaches. That would just be amazing.
MS EASTMAN: I'm almost finished but I wanted to invite you to read a few paragraphs at the end of your statement. From paragraph 145 when you're talking about what you're wishing for by way of changes that could be made but also just a reflection on your brother's life based on your experience. So would you like to read from paragraph 145 onwards?
ABF: I wish there was a provider of last resort because at times life seems like hell without being able to call ADHC and have quick access to experience professionals who can guide me through tricky situations.
In addition, I would like all professionals and every member of the community to be better educated about invisible disabilities, especially severe intellectual disabilities. As I support my brother to access his local community, I am struck by the absence of others with similar disabilities and I wonder whether and how they are accessing their community or whether they are just shut away. I worry about how many others are being chemically, physically and mechanically restrained as well as how many others are regressing in developing their skill sets because of restrictions imposed by COVID 19.
It seems to me that active participation by people like my brother in their own lives and personal care is no longer really happening. My brother used to be able to do things like make himself a sandwich and chocolate milk. Now, we are having to start again from square one, to teach him how to eat at a table without throwing his food to the floor, and how to sit on a couch calmly. He struggles to walk in his community without yelling out and touching others because he has been in a car or a national parks for five months. The high number of support workers that have been around my brother also means he has no stranger awareness now. He has regressed significantly.
I know my brother can have a good life. I just know it. When he feels safe and supported, he loves to be busy and he loves to help. He has a sweet innocence about him and is extremely loveable. My brother's life and my family's lives are now significantly dependent on the goodwill of others. I believe we can all have a better life. I don't think things need to be like they are now. I hope that this Royal Commission can help to bring change.
MS EASTMAN: ABF, thank you very much for providing the Royal Commission with your statement, and we've only touched upon some aspects of the statement but your statement will be available as part of the Royal Commission's evidence. Thank you very much for your time this afternoon and sharing your experiences with the Royal Commission.
ABF: Thank you.
CHAIR: Thank you. Commissioner McEwin has a question.
COMMISSIONER McEWIN: Thank you. Could I just clarify something that you
said. You said that your brother spends 15 hours I apologise if I've misunderstood, 15 hours a day in a car. Is that currently present, or does he need someone to be with him in the car or someone driving him around? Could you just clarify that? Thank you.
ABF: So around April, May when the COVID restrictions were first imposed and all his routine ceased he did not respond well. And he could not be in his home. We later found out that something happened in his home. So he was in the car for up to 15 hours. And the idea was to put him in and out of the car, but back then, there were so many people in the national parks, it was just so hard to find a space where he could go out. That's not the case any more.
COMMISSIONER McEWIN: Thank you. That helps clarify. Thank you.
CHAIR: Commissioner Atkinson?
COMMISSIONER ATKINSON: No, thank you.
CHAIR: I'm sorry I have to refer to you as ABF. Thank you ABF, for giving your evidence and thank you for explaining the history with your brother. We appreciate you having given evidence and your account of what you have experienced. Thank you very much.
ABF: Thank you for listening. Thank you.
THE WITNESS WITHDREW
MS EASTMAN: Thank you, Commissioners. That concludes the evidence for today. If it's convenient to adjourn now and resume at 9.30 tomorrow morning.
CHAIR: Very well. We shall resume at 9.30.
ADJOURNED AT 3.55 PM UNTIL WEDNESDAY, 23 SEPTEMBER 2020 AT 9.30 AM