Disability Royal Commission Public Hearing #6: The Use of Psychotropic Medication, Behaviour Support and Behaviours of Concern | Day 1 Summary

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VMIAC’s Day 1 Summary of Public Hearing 6

This is our summary of day 1 of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability’s Public Hearing #6: Psychotropic medication, behaviour support and behaviours of concern.

The Royal Commission started its 4-day public hearing into the impact of psychotropic medication in the treatment of those with a psychosocial disability yesterday. We were live tweeting the event in collaboration with People With Disabilities Australia. Click on the image below to read the full thread.

Overall Summary

We were disappointed that all 5 witness’ statements fell short of acknowledging the breadth of psychosocial disabilities including people living with mental health challenges or emotional distress. We hope that the following days give a greater lived experience insight, as well as more diverse perspectives.

We were also disheartened that just one witness had lived experience of psychosocial disability, Raylene Griffiths, whose statement was only a quarter of the time compared to the other four speakers. We hope this will be more balanced in the days to come. Nonetheless, issues raised during the hearing are serious concerns for all people living with psychosocial disabilities. Some of these issues included:

Overuse and misuse of medications

The incorrect prescription of psychotropic medication was discussed at length, including prescribing medicine for conditions that the medication is not designed to treat; as well as over-prescribing medications.

There are many reasons for this, including lack of knowledge from medical professionals about mental health, the ‘tick the box’ mentality that is often held by these professionals, and limited access to services equipped to prescribe effectively.

Choice

At the centre of everything is allowing people living with psychosocial disabilities the choice to make an educated decision on their therapy and medication. This means giving them knowledge so they can make an informed decision, getting consent, and giving options.

Learning from other programs

We need to learn from other programs that work, such as PARC – an exemplary service for people living with mental or emotional distress that the acute services can learn from.

Harm of instituationalisation

It is widely understood that insitutionalisation can cause harm and trauma for all people living with psychosocial disabilities, through involuntary admission, medication or restrictive practices.

Holistic therapy

There must be alternatives to psychiatry, and these therapies must be person-centred, holistic, and in context to the situation and environment of the person living with mental or emotional distress.

Witness 1: Paula McGowan

Paula McGowan was sharing on behalf of her son, Oliver McGowan, who sadly passed away due to a brain injury and pneumonia, which his family firmly believes was a direct consequence of the psychotropic medication he was mis-prescribed whilst in the UK’s medical and disability system.

Without consent, Oliver was given olanzapine – an atypical antipsychotic primarily used to treat schizophrenia and bipolar disorder – because of his normal autistic behaviours. The effects were catastrophic. He reacted badly to the medication which resulted in him contracting Neuroleptic malignant syndrome – a rare reaction to antipsychotic drugs.

He was hallucinating, having 30 seizures a day and problems urinating. He had a high blood pressure and was sweating profusely! He was unable to speak, had no understanding of language, and no way of communicating. He was paralysed. His brain was so badly swollen and damaged he became profoundly disabled. He unfortunately then passed away.

“Australia must address why so many people with learning difficulties are medicated off label.”

Paula McGowan

Ms McGowan advocated for specific training for healthcare professionals about autistic people and people with learning disabilities. How patients must be kept at the heart of all decision making. Medical professionals must listen and show respect about patients’ opinions and concerns. They must work in partnership with them.

They must treat patients in a way they wish to be treated, with respect and dignity. They must not use medical jargon, or speak to patients like they are children. There also must be government support. This is crucial for all psychosocial disabilities.

Ms McGowan shared both LeDer and STOMP programs – both from the UK – that she believes Australia could learn a lot from.

The issues presented to the Royal Commission gave incredible insight and detail into issues relating to the treatment of people with intellectual disabilities that are highly symptomatic of the system here in Australia. Even though the statement didn’t relate specifically to people living with mental challenges or emotional distress, the negligence and poor treatment is transferable.

If you are interested in reading more about Oliver’s story, click here to visit the Oliver Campaign website.

Witness 2: Dr Catherine Franklin

Dr Catherine Franklin works at The University Of Queensland’s Centre for Intellectual and Developmental Disability. To read more about the work Dr Franklin does, click here.

Dr Franklin first started working in this area in the UK in 2004. Since returning, Dr Franklin now works at the only outpatient clinic for adults with intellectual disability in Queensland and discussed the work of MIDAS – Mater Intellectual Disability and Autism Service.

Due to her experience, Dr Franklin brought a highly clinical perspective to the Royal Commission hearing. There was a lot of emphasis on the current medical treatment model and the use, overuse and misuse of medications.

She discussed concerns around the term ‘challenging behaviour’ implying that the problem lies within the individual, which is not the case, and that we must think about this behaviour occurring in context and how it relates to the environment around the person experiencing it. Other issues include when medical professionals state ‘challenging behaviour as a diagnosis’ when it is in fact a symptom.

The history of psychiatry, specifically institutionalisation, is a major concern for persons with psychosocial disability – however, Franklin only spoke about this from the perspective of those with intellectual disability. We have generations of abuse and trauma within the mental health space. Our treatment of people in the past, still impacts people today just as the changes we make now will benefit people decades from now.

Franklin discussed the international concern about over-prescription of psychotropic medication, for the last 30 years, and how it is used as a way of restraining people. Medical practitioners who lack understanding or have no education in this area, are more vulnerable to the ‘tick the right box to make the problem go away’ approach. The solution is to have access to specialised services and better education for professionals.

Franklin’s statements show that there is a real need for a holistic approach to care. Though medication can be useful, it is a not a replacement for other more human-centered approaches to care and support.

Witness 4: Dr Manya Angley

Dr Manya Angley graduated as a pharmacist, and her teaching expertise is primarily in Pharmacotherapeutics. She also has an interest in the aetiology and management of autism. For more information on Dr Angley, click here. This was yet another testimony from a medical witness.

Dr Angley gave insight into how sensory issues and environmental aspects can impact treatment and consultation, as well as the misuse of medicine when it’s prescribed outside of current guidelines. These factors are often overlooked but can have massive impacts on the wellbeing of those with autism and learning disabilities. We must reiterate that this is a factor for all people living with a psychosocial disability.

Concerns around off-label prescribing were raised, including prescribing medicine for conditions that the medication is not designed to treat. This is not illegal and can be effective for some, but should be done with informed consent and careful oversight. Something not often seen in the mental health system.

Dr Angley also spoke about side effects of psychotropic medications. These effects must be transparently discussed with the consumer to ensure they can make an educated choice on whether they go ahead with that particular medication.

We have a severe lack of long-term holistic treatment plans for those with complex mental health issues. There is a prevalence of short term treatment plans, utilising cocktails of potentially harmful medications with very little oversight. We need whole life care.

Witness 4: Raylene Griffiths 

Raylene Griffiths is both a project worker for CID and peer mentor, and also has a lived experience of schizoaffective disorders.

Ms Griffiths currently lives in a group home. She describes the group home, and the workers there, in positive terms overall, but has experienced aggressive behaviour towards herself from others, and what she calls ‘bullying’. She has gotten to points where she felt she couldn’t make friends anymore and that she was ‘helpless’.

For people living with intellectual disabilities who live in group homes, Ms Griffiths recommended having good and sound training for staff, who must be upfront and honest about things with persons living in these group homes. The staff must also help give people self-esteem or skills.

There must also be a phone number for those who may need help, similar to Lifeline; as well as rehabilitation for those who have experienced trauma.

These are elements that should be available for all people living with psychosocial disabilities.

Raylene’s witness statement was very short, a quarter of the time others spend giving evidence. This shows the need for greater and more diverse lived experience perspectives within this hearing, that hopefully will come over the following days.

Witness 5: ABF

ABF’s submission to the Royal Commission was on behalf of her brother (ABG) who she believes is being silenced.

She stated her brother has behaviours that could be charactertised as challenging, including loud vocalising, grabbing, tapping and hitting people for attention. These behaviours are part of who he is as a person. Recently, new behaviours have emerged for him to gain attention. Triggers include changes in daily routine, something unexpected happening or if he sees someone in his family distressed. If he is in discomfort of pain his behaviour also changes, as this is the only way he communicate with other.

Due to lack of understanding into his psychosocial disability, he was admitted to hospital due to these ‘challenging behaviours’, however, has arisen that he was likely experiencing pain from his wisdom teeth. This hospital experience was distressing for all involved.

Therapists were not taking into account their living situation, therefore, the coping strategies they were giving to the family were not achievable. Instead of working through this and understanding the context, they removed him from their family home. This is yet another example of therapies not being person centric – successful journeys of recovery and living positively with mental or emotional distress will only happen if medical professionals approach therapies holistically.

ABG had no choice about who he lived with in his group homes. This caused issues with his behaviour, as well as injury and harm to himself. This raises yet another deep concern for those living with mental or emotional distress – choice!

ABF’s statement is highlighting the significant lack of care and time that goes into finding accomodation and housing for those living with psychosocial disability. Housing that will be safe, nurturing and focused on recovery.

ABF ‘worries that her brother has a reputation for being a violent individual’, yet his behaviour has been heavily reactive to the lack of understanding from the medical system he has been pulled through!

ABF’s witness statement focused heavily on carer burn out, which we agree needs to be brought to attention; but we need to hear more from people with lived experience, so our voices can be heard first hand.


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