Positive Action for Change in Mental Health Services - Part 1

In November last year I attended this one day conference organised by PCCS Books in Nottingham. Two of the keynote speakers – Lucy Johnstone and Sami Timimi – had previously travelled to Powys to speak at a conference organised by our team in March 2014 - Finding Meaning in Psychosis: Early Intervention Services. This conference had highlighted the debate that challenges the validity of ‘mental illness’ diagnosis and raised questions about whether the idea of ‘mental illness’ is useful in driving innovation. However, due to leave I had been unable to attend. So, I was really keen to make the trip across country now to find out more about implementing innovative approaches to mental health distress. And the conference promised not just two but several inspirational speakers.

PCCS Books is an independent mental health publisher dedicated to the demedicalisation of distress, and person-centred, recovery-focused mental health services. The name developed out of a training organisation called ‘Person-Centred Couselling Services’, and at the conference (I think they organise one every couple of years) Director Heather Allan welcomed everyone and set the scene for the day:

“The case for demedicalising mental health services is well rehearsed. The research has been done, the conferences have been held and the intellectual argument all but won. Yet on a day-to-day basis, services continue to operate within the medicalised status quo. One of the aims of this conference will be to look at how we can implement realistic, practical changes in our mental health practice, education and lives, in order to continue the progression from rhetoric to reality.”

Due to limited space I can only touch briefly on the speakers’ presentations with a focus on their practical suggestions for bringing about change in working practice. (Full presentations are available here however).

Lucy Johnstone – Challenging, compromising or colluding? Some thoughts on trying to bring about change in mental health systems

Lucy made regular reference to her own personal situation working as a Consultant Clinical Psychologist at the Royal Glamorgan Hospital for Cwm Taf University Health Board in South Wales. This is the most socially deprived area in the whole of Wales, where 13% of the population are in contact with mental health services. It was a very medicalised service when Lucy arrived.

Lucy has since introduced an approach called “team formulation”. Regular meetings take place involving services in contact with an individual experiencing distress, within Community Mental Health teams, Assertive Outreach teams, rehab services and inpatient wards, to develop an in-depth understanding of that person’s particular difficulties. Staff will then work together to tailor any support to the needs of the individual rather than applying a one-size-fits-all approach. Using a case study of a 17 year old girl hearing hostile voices, Lucy contrasted the medical approach, which resulted in a diagnosis of psychosis/schizophrenia, to the way team formulation drew out the young woman’s story of abuse and bullying over a period of years. The latter approach acknowledges that responses such as hearing voices are survival strategies – “a normal reaction to abnormal circumstances.” 

In Cwm Taf team formulation has spread organically and not aroused much resistance. Lucy explained that her colleagues may not always agree with her approach but they take her stance on board, and some people are shifting away from using diagnostic approaches. The team formulation approach had led to “a change in thinking” and become “part of the culture as a word and a concept.”

“Instead of giving a diagnosis, we need to listen to people’s stories.”

Peter Beresford – From mental health to mad studies: making involvement real

Peter Beresford was introduced as the first “out” mental health service user to become a professor (Professor of Social Policy at Brunel University in London in fact). He spoke knowledgeably about the political background to current mental health service provision, noting politics’ powerful alliance with traditional psychiatry at the expense of those living with mental distress. He believes that “lived experience” is devalued by government, and rather than trying to influence politicians we would be better advised to take the initiative ourselves. Peter’s recommendations included:

• Resisting forced employment and impoverishment.
• Holding on to good participative practice.
• Listening to service users.
• Encouraging service user input in professional training, which has a real impact on service culture.
• Focusing on changing the future for mental health and service users by innovating, by developing our ideas for change and our practice.

Peter also spoke about the value of Mad Studies, and referenced the recent conference Making Sense of Mad Studies which my colleague Anne attended in early October.

“We have to be courageous and rigorous and stop hoping that powerful big voluntary organisations will speak for us.”

Look out for Part 2 of this conference report next week, when I feature the talks of keynote speakers Sami Timimi and Pete Sanders. You can also find out more about the Soteria Network and the British Association for Person-Centred Approach, along with other organisations who attended. Thanks for reading, and let us know your thoughts on these ideas and approaches in the comments box below.

Making Sense of Mad Studies

by Anne Woods 

Participation Officer, PAVO mental health team

Illustration by Grietje Keller

I recently attended a two day conference at Durham University entitled Making Sense of Mad Studies organised by the North East Mad Studies Forum. Before attending, I wasn’t too sure about what to expect. Mad Studies wasn’t something that I had come across before and I felt slightly uneasy about using the word mad in this context, a theme that came up in the conference and on Twitter. 

The term Mad Studies has been credited to Richard Ingram, one of the speakers, who was inspired by the creation of Deaf Studies as an academic discipline distinct from Disability Studies and wondered whether the same could happen for madness. In his presentation he said that finding method in the madness was not as important as preserving the madness in the method! In other words, Mad Studies is a way of looking at the world that uses and benefits from a different perspective to life and need not only apply to academic research on mental health. The consensus from the conference seemed to be that Mad Studies was something done by people who identify themselves as mad and not something done to or about them.

Richard Ingram

A fuller definition is provided in the book, "Mad Matters" (2013) edited by Brenda LeFrancois (another conference speaker), Menzies and Reaume.

“An umbrella term that is used to embrace the body of knowledge that has emerged from psychiatric survivors, Mad-identified people, antipsychiatry academics and activists, critical psychiatrists, and radical therapists. This body of knowledge is wide-ranging and includes scholarship that is critical of the mental health system as well as radical and Mad activist scholarship. This field of study is informed by and generated by the perspectives of psychiatric survivors and Mad-identified researchers and academics.” 

Brenda LeFrancois

The conference included a wide range of speakers from different backgrounds: academics, some of whom identify as ‘mad’, early career researchers, activists, artists, people with lived experience of various types, sometimes presenters falling into several categories. Presenters shared some intimate and honest accounts of their own life experiences within the psychiatric system and how that had informed their work.

The agenda was jam-packed but some highlights for me included hearing about Mad Studies reading groups in Amsterdam from Grietje Keller. The groups give a space for reading and discussing critical texts that challenge the dominant medical psychiatric model and are mostly attended by people who have been users of mental health services. The groups are popular and give attendees a different perspective on their experiences.

There was discussion around ‘doing’ (teaching/ learning about) Mad Studies with a presentation from participants and tutors of a course at Queen Margaret University in Edinburgh for people with lived experience of mental ill health, and tutors of a course for approved mental health professionals (AMHPs) describing how important it is for professionals to be trained by people with experience of being on the receiving end. Dr Dina Poursanidou talked about the challenges that this throws up, including managing the emotional toll of using traumatic personal experiences as an education tool, something of particular relevance to PAVO’s mental health team in the participation work that we do. 

Brigit McWade from Lancaster University on Recovery

This theme was also picked up later by an action group called ‘Recovery in the Bin’. They have adopted 18 key principles, one of which is, “we refuse to tell our ‘stories’, in order to be validated … We believe being made to feel like you have to tell your ‘story’ to justify your experience is a form of disempowerment, under the guise of empowerment.” This is an issue that I am well aware of from personal experience. As a team, I think we recognise this and carefully balance our desire to use powerful personal stories to facilitate change against the emotional toll on the individual and their right to control how much and when they disclose.

The Recovery in the Bin presentation gave food for thought on the concept of recovery and the group’s contention that it has been appropriated by mainstream mental health services and is less focussed on what’s best for each individual and is more concerned with what’s best for a capitalist society, ie: getting people into employment and off benefits as quickly as possible. The group talk about the validity of remaining ‘unrecovered’ by this measure, finding ways to live with distress that does not necessarily neatly fit into a recovery star model, also recognising that some life experiences have to be tolerated rather than recovered from.

"You told me I'm my own worst enemy. So I got a restraining order against myself!"

The conference had a breadth of views and opinions and there were some challenging discussions, about racism in psychiatry and academia for example, as well as humorous moments such as why art made by service users can actually be good art. It introduced me to several views and topics that I hadn’t come into contact with before and had a good mix of people sharing their personal experience and academic theory. It will be interesting to see how the discipline develops and whether, in future, universities will have departments of Mad Studies and full-time degree courses or whether it becomes a movement developed by grass roots activists – or both!

The conference is on Storify on Twitter.

Mad Studies is on Twitter.

You can find more Mad Studies resources on a website run by Brigit McWade.