I was delighted to be asked by Liam MacGabhann, a co-founder and member of Mad in Ireland to write a blog about some important research recently undertaken through the School of Nursing and Midwifery in Trinity College Dublin. It was a hugely interesting narrative study entitled ‘Deciding to discontinue prescribed psychotropic medication: A qualitative study of service user experiences’ which basically sought to learn more about medication’s role in recovery. I was very privileged to be the interviewer.
I would like to firstly give a huge welcome to Mad in Ireland. The platform provides an independent and critical voice which is so badly needed. I must declare that I am a huge fan of the work of Robert Whitaker and Mad in America. I love his painstaking critique of our western mental health systems and his tireless energy. I believe he lets a small voice of hope be heard in what is so often a very hopeless mental health service. Experiencing psychosis and undergoing diagnosis and treatment in Ireland today is often experienced as passing through a gateway into a world of stigma, disability, dependence and a shortened life expectancy. It is like being run over by a massive truck and being expected to behave as though nothing has happened. I realise this may not be everyone’s experience.
I must declare a personal interest in the subject of psychosis and the wise use of medication. Psychosis is something I experienced myself in my twenties. Later I again experienced it as a family member, twice. These experiences were some of the most distressing I have ever lived through. I also have to say that the experience of diagnosis and being given a hopeless prognosis and no choice except medication was equally distressing.
I am glad to report that I and my family members have recovered. Our recovery journeys have been very different, just as we are very different, but were each marked by successfully leaving behind the need for external kinds of help such as medication and the help of medically trained experts. I am not anti medication. At times it was a real life saver. But having said that nothing else was tried or indeed available when life went into crisis.
Through my work in Grow Mental Health over the past 40 years I have also got to know many people who have outgrown the use of medication. Grow was in fact founded by a number of people who had been diagnosed with all kinds of mental illnesses. The key founder Con Keogh was diagnosed with paranoid schizophrenia. Con briefly used chlorpromazine as part of his recovery but fairly quickly came off his medication and became one of a small group of human beacons of hope on the mental health scene.
As part of my own recovery, which I believe came about mainly through warm and affirming relationships with other people I returned to formal study on 3 occasions. I gained degrees in psychology and family therapy and in 2012 completed a doctorate which followed the recovery journey of a cohort of members of Grow. The findings of this study (Narratives of Recovery from Mental Illness the role of peer support) suggested that recovery from psychosis could be a positive and liberating process rather than a lifelong sentence. This study identified 5 ‘levels’ of cause, physiological, emotional, cognitive, behavioural and social, which all played a part in diagnosis, healing and recovery. What was more important than concentrating on anyone particular level of cause was the relationship between all of them.
Over the years I have also come across numerous individuals whose recovery from psychosis has included successfully leaving behind psychotropic medication. The work of Patricia Deegan (Recovery as a Journey of the Heart) and Dan Fisher (The National Empowerment Center and ‘Heart Beats of Hope) Lauren Mosher (Soteria House) Peter Lehmann in Germany, Seikkula’s Finnish Open Dialogue, Jacqui Dillon’s work with the Hearing Voices Network as well as Irish pioneers such as Paddy McGowan, Diarmuid Ring and Liz Brosnan have all given hope and valuable information about non medical alternatives.
If so many of us can make a recovery which includes the choice to leave medication behind why are the vast majority of people diagnosed with psychosis still told they have a life long chemical imbalance that will need lifelong medication? Why is the prognosis still so very hopeless? Why isn’t there more interest from psychiatry and from policy makers? If someone suddenly discovered a car that didn’t need expensive fuel there would be a rush to explore why and how this had come about?
This study- Deciding to discontinue prescribed psychotropic medication: A qualitative study of service user experiences; the first of its kind in Ireland, seems apt in light of particularly the recent contemporary outpouring of evidence that is questioning the overuse of psychotropic medication and its limited effectiveness. This study adds to the international literature highlighting service users decisions to discontinue psychotropic medications, including our own systematic review that helped inform this study.
Funding for this study was very minimal and came through Tony Leahy who was Manager of service improvement in the HSE. Tony, at the time had just been diagnosed with Motor Neuron Disease but was totally supportive of the study which can be seen as part of his own legacy. ‘Deciding to discontinue prescribed psychotropic medication: A qualitative study of service user experiences’ involved 23 men and women with an age span of 18 to mid 60’s. Recruitment was easy and carried out through peer support networks. There seemed to be a genuine hunger among participants to have the opportunity to tell their story and to explore the subjects of medication and recovery. Interviews took place in people’s homes, in quiet corners in hotels and in premises belonging to NGOS. They were semi structured around a series of questions, but the interviews were was audio recorded, transcribed verbatim and subsequently analysed by a team of researchers using both inductive and deductive methods. Six major themes were developed and are summarised below, with the full findings first published in 2021.
Being on Medication
While some participants reported that medication was ‘good at the start’ they stressed it only helped relieve their distress in the short term. Numerous negative side effects such as weight gain, sedation, inability to concentrate immediately became part of a daily struggle. Loss of libido, memory loss, sleep disturbance, feelings of being ‘half human’ ‘losing the ability to laugh’ being ‘out of it’ seriously interfered with any real quality of life.
Motivations for coming off medication
The adverse long term side effects of medication had a significant impact on people’s physical health, their quality of life and on their relationships over time and contributed to the decision to stop. Some reported they had ‘no choice’. Participants also reported being driven by a questioning of the biomedical model of treatment and the belief and that there were other strategies that could be developed to manage personal distress. Many felt stigmatized by medication and its side effects. ‘I felt medications were an artificial way of dealing with real problems’
People experienced mixed levels of support from healthcare professionals once they had decided on a process of withdrawal. Psychiatrists and other professionals tended to communicate a message that their distress was a lifelog phenomenon and recovery impossible without medication.
‘He basically said well there is no point coming to see me anymore’.
Where support was not forthcoming participants either went it alone or tried to find a mental health professional who was supportive. Many participants did not seek support from family members because they felt their intentions to stop would be challenged or undermined by a response that reinforced the narrative of the medical model
‘you just have to believe your doctor and you have to take your medication….. they just don’t understand’
Learning through trial and error
Whether supported or not all participants expressed fears about the possibility of rehospitalisation. Some stopped abruptly, some very slowly. The challenges they encountered included difficulties on sleeping, suicidal thoughts, a return of symptoms. Sometimes these did lead to re-hospitalisation and re medication. Overtime, participants reported becoming more flexible in their approach and accepting setbacks as learning opportunities.
Developing strategies to support the process
A consensus was apparent between participants that a gradual withdrawal coupled with taking personal responsibility for health and wellbeing and building scaffolding supports was the optimum strategy for success. Looking after physical health, having a routine, eating well, meditating, keeping a diary, keeping in touch with friendly others, choosing a lifestyle developing interests and involvements. Peer support and recovery narratives were seen as particularly helpful.
‘knowing there are others out there who have successfully kept themselves off medication’.
The support of professionals was also greatly appreciated as was online support through TED talks or specific sites.
In the midst of a long hard struggle participants reported being sustained by a number of positive benefits. These were physical, emotional social or psychological/ a rapid loss of weight, increased energy clarity of thought experiencing ‘real’ emotion.
It was practically immediately… much more alert. I’m much faster, lighter on my feet’ ‘I’ve got involved in a lot of things; I do a lot of voluntary work’
The findings of this study, to me indicate a need for more robust studies that develop and test interventions to support people who wish to discontinue psychotropic medication. Why are mental health professionals so reluctant to collaborate with courageous, highly motivated people who are willing to explore non-medical routes to recovery?
Thanks for this research which accords with my own experience previously a patient.
I recently returned to Grow for a meeting having been a member previously for a few years. I was disappointed at how the literature (in the original blue and a subsequent book) and general approach had changed so that it now seems to support the medical model.
Because of confidentiality I cannot speak to the specifics of the meeting but a lot of it was centered on medication and having an organic mental illness and the advice to members was simply continue taking the medication and let it settle in. It was alarming to me as a few of the members recounted having debilitating side effects and were simply advised to continue taking the ‘medication’ and that their symptoms might have nothing to do with the medication. It was pretty obvious that most of the members there were deferential to psychiatry and the drugs they were on and there was no questioning at all of that narrative.
The new Grow book (I have a copy of the old one) has also been simplified and changed to be more in accordance with the current mental health narrative which was deeply dispiriting.
This organisation was once a bulwark of dissent against the medical model. Books and testimonies were written and published locating the source of distress/illness to events in the person’s life. There was an acceptance that mental distress was a ‘reaction’ to life events rather than an inherent illness. That view seems to be gone now.
The updated literature has removed the more overt religious references and there is a new paragraph in the book which all members use during the meetings stating that ‘recovery can often involve the use of medication:- “Members are always encouraged to talk with their doctor or other healthcare professionals about the use of medication.”
In the previous book there was a page referring to a policy document done in 2006 called ‘A Vision for Change’ which was intended to bring about a change in the mental health system. At its heart was a call for a transformation from a medical to a recovery orientation. It referred to there being two main definitions of recovery from mental illness – one being the medical view that mental illness is caused by chemical imbalance and involved the use of medication for life. The paragraph continued:- “this view is now being questioned and more and more people report outgrowing the need for medication”.
It then referred to the second definition which was the recovery view. It defined mental illness as being the result of emotional overload. “A person does not have the resources to cope with life. Recovery involves a systematic process of personal change and accessing necessary resources. Slowly a person finds new strength and meaning, they begin to emerge as a stronger, wiser and more loving version of themselves. Medication which might have been necessary at the start, with the doctor’s help can be sensibly left behind and the person’s experience of recovery becomes a resource for others.”
That page has now been removed in its entirety and replaced with a page entitled ‘Recovery from Mental Illness Conceptual Framework for personal recovery in mental health – systematic review and narrative synthesis’ which was compiled by a group of psychiatrists and was published in the British Journal of Psychiatry. I had a brief look at a synopsis of that and though the study largely identifies social determinants of recovery such as connectedness and finding meaning it is sad that an organisation which was was set up in largely as a healthier alternative to the psychiatric model is now using literature that was published by people from that model.
With a few exceptions some of whom you mention directly such as Loren Mosher, psychiatry has been responsible for the imprisonment, torture and destruction of thousands of lives (including my own about which I am legitimately angry) and it is sad that a group of psychiatrists are cited instead of the humanistic vision for change in the last book which never came to fruition because successive governments didn’t bother to do so.
As someone who is tapering off psychiatric drugs my experiences accorded almost entirely with what you found in your research. I went back to Grow largely hoping for some peer support as I wean off drugs. After one meeting I realised that there would not be any support there.
Personally I found support outside this country online in the communities set up on Facebook and sites such as Surviving Anti Depressants and The Inner Compass Initiative. They have been a lifeline.
There is no support whatsoever in the mainstream media here which supports the psychiatric narrative without question. As an example there was an interview conducted on ‘The Hard Shoulder’ by Kieran Cuddihy with Patricia Casey a well known media psychiatrist following Mark Horowitz’s and Joanna Moncreiff’s publication of the meta analysis showing that the chemical imbalance has no evidentiary support. Kieran Cuddihy got no one on to represent Moncrieff and Horowitz’s side, simply asked Patricia Casey ‘What is the truth?’, listened to her as she rubbished their research over the next few minutes and then thanked her for clearing the matter up.
Hi Jennifer, with regard to the “should” part of your question, I think undoubtedly yes. However, it’s not quite as straightforward as that from the students’ standpoint.
‘Can students challenge the fact that outdated ‘theories’ are being taught?’
Again, only at a superficial level. The word “challenge” is a bit of a stretch in this context. Brief online surveys are made available at the end of each module to gauge student satisfaction with the subject at hand and the manner in which it was taught. As most of our learning was online at the time, questions tended to focus primarily on the quality of the presentations i.e. was there an adequate number of slides, was the text legible, etc. A brief comment section at the end of the survey asked for recommendations for future improvements. Keep in mind that the person reading these comments is likely the same person that is grading your work. Also, the vast majority of classes were recorded for revision purposes and for students that couldn’t be present. However, the ‘Pharmacology’ module (the main proponent of the biological theory of mental ill health) was not permitted to be recorded, it was the only module that was not recorded – a decision made by the lecturer, without any real explanation – make of that what you will. Additionally, a heavy workload combined with strict time constraints make it difficult to engage in a meaningful discussion about anything let alone where the drugs came from in the first place, how they’re tested for efficacy in the short and long term and especially complex topics like pharmacodynamics and pharmacokinetics. I’m not without fault here either by the way, I’m as guilty as anyone with regards to accepting what was being taught without truly questioning it and just wanting to get through lectures as quickly as possible in order to get to what I needed to know to pass the module. When the conversation about mental health is constantly being looked at through the lens of diagnoses and pharmaceutical intervention – both, in the classroom and in everyday life – it’s easy to be taken in by it, to blindly accept what you’re being told, especially if the person telling you these things has some letters after their name – after all, who are we to question Dr. Omniscient?. ‘Appeal to authority’ (or ‘false authority’) can be a powerful thing. Personally, it wasn’t until I spent some consistent time in the clinical setting – talking with and listening to the people actually taking these drugs and seeing the effects for myself – that I began to truly see the flaws in what I was being taught. I now see that my silence fed that complicity and the realisation that my participation in a system that can often add to a person’s distress and suffering was difficult to accept, it still is.
Thanks so much for the comprehensive answer. It’s an area that definitely needs looking at if things are to change. But as you say, it shouldn’t be up to students to be the ones ‘challanging’….
Hi Mike, thank you for writing this piece. It’s always refreshing to read studies from the perspectives of people with actual lived experience. Giving a voice to those who have been unheard for so long can only be a positive step towards establishing a mental healthcare system that actually does what it is supposed to do i.e. offering proper supports to people in times of distress. As for your parting question: “Why are mental health professionals so reluctant to collaborate with courageous, highly motivated people who are willing to explore non-medical routes to recovery?” From my own experience as a recently graduated ‘mental health professional’ (MHP: I despise this term by the way but that’s another story), I can attest to the fact that the chemical imbalance theory; the cornerstone of the medical model, is still very much alive and well in the education and training of so-called ‘MHPs’. Also, ‘evidence-based practice’ is very much sold as the way forward (as it should be) but only at a superficial level i.e. accept what you’re being told, don’t ask too many questions, take your degree and be on your way, when in reality, the ‘medical model’ and ‘evidence-based practice’ is a complete contradiction in terms. There are of course many other reasons for a reluctance on behalf of MHPs to go against the grain (again, I am speaking for myself here): fear of professional and personal ostracisation, job security, lack of proper supports, lack of training and education etc.etc.
Anyway, thanks Mike.
Thanks Adam, for your insightful and honest comment. Can – or should, do you think, students – or anyone, challenge the fact that outdated ‘theories’ are being taught in this day and age? Or is that just wishful thinking…