John Bowis: Schizophrenia and social inclusion

john_bowisAt the European Health Forum in Gastein, Austria, mental health figured prominently in the programme. The first two sessions centred on “Mental health—the motor for a healthy economy,” at which the link to unemployment was highlighted and ways discussed in which employers could take a more imaginative approach to their (physical and mental) health at work policies. Alongside this was a hard look at the ways alcohol played a role as a cause and effect of mental health problems. The third session centred on schizophrenia and social inclusion.

Just imagine you have been to your GP and he has made a diagnosis and you go round to the pub or back to work and say to your friends or colleagues, “Do you know what—I’ve just been told I have got schizophrenia.”

Do they rally round, put an arm round you, buy you a drink, tell you their granny had it, reassure you that there are good treatments for it nowadays and tell you to keep in touch and let them know how you get on?

Or do they go silent, avert their gaze, remember they have a meeting to get to, slink away to phone home, and tell their spouse not to let the children go to your home anymore?

Or do you not go to the pub or back to work or anywhere you might meet your former friends and colleagues, because you’re scared—scared about your condition and scared about their reaction?

Schizophrenia is a no-go word; it is a word that spells stigma—stigma from the rest of the world and stigma from inside you. No wonder campaigns are running to change the terminology—although I’m not sure the proposal of “Psychosis Susceptibility Syndrome” is quite the de-stigmatising alternative we seek.

Whatever we call it, we need to de-demonise it, if we are to succeed in bringing social inclusion to those who live with it.

The first assumption is that you are dangerous. The media choose to portray your condition as violent and a risk to people in the street. The reality is that few have violent episodes and most of those are cases of self-harm. In the UK we have some 250,000 diagnosed cases. Of the 5,189 homicides in Britain over nine years between 1997 and 2005, only some 510, or 10%, were committed by people who had been in contact with the mental health services over the previous 12 months. In fact people with schizophrenia are 14 times more likely to be the victim of violence than the perpetrator.

Looked at another way, 99.97% of people with schizophrenia will not be convicted of serious violence in a given year.

And yet, while an NHS survey on attitudes to mental illness in 2011 showed that 77% of people agreed that “mental illness is an illness like any other,” only 25% agreed with the statement that “most women who were once patients in a mental hospital can be trusted as babysitters.”

The second assumption is that you cannot be treated or cured and so you should not be out of a hospital. The reality is that some 25% of people with schizophrenia do recover fully, a further 25-35% improve considerably and live relatively independent lives, some 20% improve but need extensive support and between 10% and 15% remain unimproved in hospital.  A further 10-15% will die prematurely, mostly by suicide.

I have met many people who live with the condition. Some have been in hospital, some have been living independently in the community, some with their families, some have served with me on NGO boards, and some are holding down responsible and demanding jobs. Some have few symptoms and some have overpowering ones. They range across the list of positive symptoms, such as hallucinations and delusions, to negative ones, such as withdrawal and lack of motivation, to cognitive deficit, such as loss of attention span.

The film A Beautiful Mind gave a vivid experience of living with voices, of withdrawal, of family confusion and of ultimate hope, which certainly reflected the lives and emotions I have met.

The key message from my experience and from that film is that this is a condition which can be managed and self-managed with supportive treatment, social care, and with doors opening to social inclusion and not slamming shut through the ignorance of pre-judging and stigma.

Social inclusion is a meaningless term unless we break it down into its component parts.  It is not just communication and outreach services, although it may involve both. It is listening, respecting, and assuming a can-do ability on the part of the individual—or a could-do one, if obstacles were removed and encouragement given.

It is opening doors to advice and advocacy; it is making possible opportunities to work or to volunteer, to take as much responsibility as feels comfortable for now; it means educating media, communities, employers, trade unions, police, health professionals, managers, and policymakers to revise old assumptions and old prejudices; it means ensuring the law, regulations and procedures are reviewed and made relevant; it means treating co- and multi-morbidities; it means having a benefits system and housing provision that help recovery and stability, and it means caring for the carers and assessing their needs.

It means all of us posing the question to ourselves: “If it is me or my child or my spouse or partner, what would I fear, what would I hope for and how could I be helped to cope?”

John Bowis was health minister responsible for mental health in the John Major government 1993-96, when he was moved to Transport.  After the 1997 election, he worked for two years on the WHO’s “Nations for Mental Health” campaign, before being elected to the European Parliament, where he served as Health & Environment Spokesman for the EPP Group for ten years. He decided to stand down in 2009 and concentrate on his international health activities. He was elected an Hon Fellow of the Royal College of Psychiatrists in 2003 and of the Royal College of Physicians in 2009.