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?