What first brought you in to contact with mental health services?
From the age of about 17, I experienced an annual cycle of moods which gradually became more extreme. At the end of each summer I would start feeling down. Then slowly over the next few months I gradually became engulfed by terrible feelings of despair and hopelessness. By Xmas I would become very withdrawn and virtually mute. This would be followed by a gradual recovery and then a few months of relative stability. Then in the spring I would start to get very over excited, talkative and fascinated by people and ideas. During this period I was very creative and outgoing. Sleeping and eating would get problematic and my thinking would become more and more unrealistic. Mostly I enjoyed the highs but the exhilaration was also tinged with great anxiety as I knew from bitter experience that what goes up has to come down. Slowly the cycles became more serious. The lows got lower and the highs got higher. So it was not long before I came to the attention of first of my GP and then a psychiatrist.
Looking back I think what caused my breakdowns was a combination of family history, my father’s sudden death, difficulties with my stepfather and my attempts to self-medicate with illegal drugs. My father was a German Jew who spent the first eight years of his life in Frankfurt. In about 1934 when he was eight years old; the rise of Hitler meant that his immediate family were forced to flee Germany. They were lucky to escape with their lives, lost their apartment and pocessions. For reasons that are not quite clear they ended up in South Africa. Family members that they left behind later died in Dachau concentration camp and Lodz Ghetto.
My parents met in South Africa, got married and because of their objections to the Apartheid regime immigrated to London in the 50es. I was born in north London and grew up there. My family identified as Jewish but were completely secular. So I always felt an outsider in the close knit north London Jewish community in which most people were religiously observant.
Despite the family history and an underlying feeling of being unsettled, until I was 13, I was a fairly happy child and probably would have not have required mental health support. But the loss of my father from a heart attack changed all that. His death was almost violent in its suddenness. One afternoon he went up to his room saying he was tired, a short-time afterwards he was found dead. My mother started a new relationship about a year after my father died. Whilst my stepfather had some good qualities and was kind to my mother, he was a troubled, unpredictable and occasionally violent man.
What was your experience of mental health services?
My experience of mainstream mental health services was not helpful. I was treated with tricyclic anti-depressants, Lithium Carbonate and eventually electric convulsive treatment (ECT). All of this made no real impact on my mood swings and just gave me more problems and made me feel even more alienated. Amitriptyline gave me a horrid taste in my mouth, distorted vision and the shakes. Lithium felt like I was wrapped up in cling film and made me feel like my life was happening to someone else. ECT made me feel like I was a broken machine rather than a person. I started to fear the sessions as several times I woke up paralysed due to the muscle relaxant.
What aspects of your life were affected by contact with mental health services and how were they affected?
Mental health services affected every aspect of my life and compounded my difficulties. From staff I got the message that I was damaged goods. They showed almost no curiosity about what had happened to me, the focus was on what was wrong with me. The negativity and lack of hope projected by psychiatric services mirrored my own sense of despair.
In the 80es psychiatric services were even more stigmatising then they are now. So I tried to hide both my distress and my use of services and that only served to separate me even more from friends and family.
I’d like to say that I came across caring staff who took time to listen to me. But whilst I was not actively mistreated the overall experience felt like I was being punished for being unhappy and lost. No account was taken of my history, my feelings or emotional life. I don’t blame individual members of staff. I think that basically psychiatric training does little to equip people to offer any real help to people with mental health issues.
The only good thing about ECT was it confirmed my feeling that psychiatry had nothing to offer me and that if I was to have any chance of recovery I needed to find my own way. I tried to find a counsellor or therapist through charities or the NHS. But this was the 80es and talking therapies were not provided by public services. So eventually I started to see a private psychotherapist. It was such a relief to talk to someone who didn’t think mood swings are caused by faulty brain chemistry or genes.
I am happy to say that extreme mood swings are a thing of the past and I have been medication for free for many years. Of course I still face life’s difficulties and disappointments as we all do, the difference is that my response to them no longer overwhelms me. I do lots of other things to support my mental health. This includes exercising, getting enough sleep, not over working and spending time with friends and family. Three things have been especially helpful. These are psycho-therapy, meditation and the support of other people who have been through similar experiences. I have had psychotherapy for most of my adult life. I realise I am extremely privileged to be able to fund one to one therapy for so long. Until I finally finished with my last therapist after 16 years work together, it accounted for a substantial part of my spending. I think of it as an investment. Having that space to explore how I am feeling has helped me in every aspect of my life. It’s been a difficult and painful process but one from which I have benefited enormously.
I have practiced meditation within the Zen Buddhist tradition for many years. The kind of meditation I do is called Shikantaza in Japanese, which translates as ‘just sitting’ in English. Meditation is the only time in my day when I am not goal directed, rushing between meetings, juggling family life or striving to meet a deadline. I just sit and watch the thoughts float in and out of my mind. Strictly speaking this type of meditation is not something that one does for personal gain and expectations of any kind are not thought of as helpful. However I have noticed that since I started sitting regularly I have slowly become more grounded and calm.
The other thing that has helped me enormously has been my engagement with the mental health user/survivor movement. Meeting so many other people who have experienced mental health issues has been amazing. The support and solidarity has made a real difference to my life. Sharing stories with other people and discussing what needs to change has made me feel that I am not alone. I have made many friends and mostly importantly met my wife Jolie Goodman through our mutual involvement in mental health user groups.
What did you learn from using mental health services?
I learnt that we humans are much more fragile and vulnerable than we like to think. My experience has given me an enduring empathy for people on the margins of society, a strong feeling that everyone’s voices are important and a belief in second chances. Using mental health services made it much easier to relate to people who have experienced difficulties of all kinds.
What is your proudest achievement?
That’s a really hard question. On a personal level I am really proud that I now lead a pretty settled life. I am married, have kids and I earn money doing work I find satisfying and meaningful. These are all things that in the past I thought were totally out of my reach.
On the work front I’ve been involved in so many fantastic projects and organisations. I guess three stand out:
Consumers’ views on ECT.
This research brought together the views of service users and showed for the first time that the evidence supported what ECT survivors have always known: ECT causes long-term damage to autobiographical memory in at least a third of recipients. http://bit.ly/2mpV89s And http://bit.ly/2CQmags
Care leaver’s stories
This project recorded the life stories of people who are care experienced as told to interviewers who were also care experienced. https://www.scie.org.uk/publications/care-leavers-interviews/about/
Elizabeth Garrett Anderson programme co-production module
In collaboration with National Voices I led the design and piloting of a session on co-production which all students on the Elizabeth Garrett Anderson NHS leadership programme have to take. The programme leads to an MA in Health care leadership and its feels really positive that all the students will complete a module on co-production. https://www.leadershipacademy.nhs.uk/programmes/elizabeth-garrett-anderson-programme/
What are your hopes for the future?
In 2021 I completed an MA at the Tavistock Centre called Consulting and leading in organisations: psychodynamic and systemic approaches. The course aims to give students a fuller understanding of the human dimensions of organisational systems and to develop a ‘consultative stance’ to organisational dilemmas and opportunities. I found the course incredibly demanding and stimulating. I have learnt so much about how organisations and groups work.
The course has given me a taste for learning more about groups and organisations so I am currently studying for a three year Advanced certificate in organisational consultancy at the Tavistock. I am already applying my learning to my co-production work. In the future I want to expand my consultancy practice to include more general organisational work.
An earlier version of this article was published Your voice issue 86 https://issuu.com/yourvoicesheffield/docs/yv86