I have been a member of the Our Rights and Medication Advocacy Group (ORAM) for a few years now and I am writing to raise awareness about our work.
But first, a brief personal note. My own experience of madness and the psychiatric response was in my early 20s. By ‘madness’ I mean my experience of what the medics would call ‘a psychotic episode’ and the label for this experience being ‘puerperal psychosis’. Over time and being fortunate enough to escape the clutches of psychiatry that was not serving me, I have found ways to understand myself and my madness. The legacy of the experience of the traditional psychiatric response; being locked in, forced medication, seclusion, prescription of antipsychotic medications, led me to live my working life as an independent advocate. As I come to the end of my formal working life, many faces and names are in my head as I write. I have had the privilege to witness the experiences of so many people over the years; people who have struggled to be heard, to find their voice, to state their rights when all is against them because of being ‘othered’, by being seen as ‘less than’ because of various labels of disability including mental distress, and because of the power that comes with institutionalisation both physically and otherwise.
I have views and a position on the use of psychotropic medications and I know that all who are reading this will have their views also. Our Rights and Medication (ORAM) uses the framework of human rights based practice to address this issue, which is still at the core of ‘treatment’.
In doing so we hope to participate in directing the move away from the traditional medical model.
Who are we?
We are human beings who as citizens of this state, have come together to share our experiences of the formal responses to disability including mental distress from all angles: disabled people, people who are /have been prescribed medications for our mental distress and beyond, academics, people working as independent advocates, people working in service provision. We have all signed up to a statement of shared beliefs and aims and anyone who wishes to join the group is invited to do the same.
The Social and Health Education Project (SHEP) carries the responsibility for hosting, facilitating and co-ordinating the work of ORAM but has no overall ownership of the work.
Whilst our focus is on rights and medication, where people may be defined as disabled and/or where capacity to make a decision is in question, this work is relevant to all of us at any time when being prescribed medication.
We have received small grant funding from the Irish Human Rights and Equality Commission to support this work. We have no other funding and we are all involved in this work as volunteers or as an ‘add on’ to our work roles with SHEP providing space and resources to support us.
Why have we come together?
Medication still carries a sense of a ‘no go area’ for us non-clinicians. It is not for us to interfere with the wisdom and knowledge of the medics and speaking to our rights is generally still not welcomed by professionals. The language of risk still holds so much sway with ‘they were off their meds’ often being quoted as the only factor in why a person might be struggling. There is a fear of opening up dialogue.
However, there is a growing movement that is critically reflecting on the dangers, damage, harm of overuse of psychotropic medications, the harm of long term use, the harm of poly pharmacy (multiple medications at the same time), the lack of required reviews, the lack of required monitoring. Alongside all of that are the efforts to be heard, to have rights respected, to consider and discuss ways to support tapering, reducing, and coming off powerful medications. Again, I am confident that because you are on this website, reading this article, all of these efforts are familiar to you.
In order to support this movement that is challenging the traditional practices of prescribing, ORAM is trying to play a part.
What are we doing?
- We are holding this space as a ‘network of solidarity’.
- We are developing information (leaflets and video to date) to share with rights holders.
You are welcome to contact us at ORAM@socialandhealth.com if you want to know more.
- We are gathering research, reports etc. in this area and hoping to undertake our own. There is a lot out there but not much from Ireland. I draw your attention here to the easy to read South Kerry Child and Adolescent Mental Health Services review and the concerns about the harmful side effects of psychotropic medications: ‘We found proof in the review of significant harm to 46 children. The harm included: “production of breast milk; putting on a lot of weight gain; sleepy during the day; raised blood pressure.”
Sound familiar? We all know that these ‘significant harms’ reach way beyond 46 children.
- We have facilitated some interactive workshops with rights holders to open up discussions. Getting in the service provider door can be a challenge. Finding practitioners willing to support the workshops has been essential. The ‘untouchability’ factor described above is evident. Setting the workshop within the context of the Assisted Decision Making Act has been more than helpful. (See www.decisionsupportservice.ie for more information.) What we have witnessed as facilitators is the value of opening up a space to talk about medication which in itself is transformative as people talk to each other about their experiences. We have witnessed people’s fears about speaking, people’s frustration when they are not listened to and people’s courage in their perseverance.
- We have begun dialogue sessions with professionals tasked with leading the development of human rights based practice in order to prepare for communicating with practitioners on the ground.
Our big find was the in-dialogue session with the HSE National Dementia Office for Older People & Dementia Care, Change and Innovation team leading on the work to implement the National Clinical Guidance on “Appropriate prescribing of psychotropic medication for non-cognitive symptoms in people with dementia” (NCG No. 21). ‘Non-cognitive symptoms’ include ‘delusions, hallucinations, depression, anxiety, apathy’. Again, sound familiar? This work is so relevant to adolescent and adult mental health services and for all whose voices are not heard. There is some essential cross fertilisation to be undertaken here.
Where are we going?
We want to continue with all of the work initiated above and more. We are looking at supporting interested rights holders to develop facilitation skills in order to take a lead in delivering the workshops. We need to take the next steps in developing the dialogue sessions with practitioners in the now post 1871 Lunacy Act world of the fully enacted (April 2023) Assisted Decision Making Act. More immediately, the upcoming Independent Advocacy Gathering on June 1st will launch the rights and medication video and welcome Aine Flynn, Director of the Decision Support Service to speak about how this service can support us all to have control over the decisions we make for our own lives. (Details below)
There is so much to be done. We hope to keep going.
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Event notice: Thursday June 1st, 2pm-3:45pm, On zoom.
Email: independentadvocacygathering@gmail.com
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