A leading mental health activist who is also a service user has questioned the fundamental value and validity of using the term ‘schizophrenia’ as a diagnosis. Ian Macrae reports.
David Crepaz-Keay is Head of Empowerment and Social Inclusion at the Mental Health Foundation and himself has a diagnosis of schizophrenia. Responding to the conclusions of a report examining the care of people with schizophrenia carried out by the Schizophrenia Commission, he told Disability Now that they came as no surprise to him.
“It’s no surprise that people with a diagnosis of schizophrenia are getting poor services, are having shorter lives, are more likely to be excluded, less likely to be employed are poor and less healthy, no. None of that is at all surprising. One of the reasons poor services are allowed to be offered, and, indeed, people’s lives are being shortened by such an extent is that nobody considers it to be a scandal, that people with a diagnosis of schizophrenia are treated so badly. They’re still a group that is more feared and worried about, than concerned about for their welfare and well being.”
The problem, says Mr Crepaz-Keay, lies with the term and the diagnosis that people are given and the system’s response.
“Schizophrenia isn’t a particularly useful diagnosis in itself. While we continue to focus on this notional disorder rather than on people’s needs you’re really rather unlikely to make any significant progress. The things that we talk about as mental health services, actually do nothing to improve people’s mental health, they’re actually treatment delivery services. So they decide what you’ve got, they look up what they think the appropriate treatment is and then they deliver it.”
He went on to illustrate the problem using his own experiences as a mental health service user.
“I’ve received forced treatment and no treatment, I’ve ever been given has stopped me hearing and seeing things. Very few services have ever shown an interest in me, what I want from my life and how they could help me achieve it. Quite the opposite in fact. If you have a diagnosis of schizophrenia you should expect to be a mental patient for life, you should ascent that, you should limit your ambitions to that and that, frankly is one of the roots of the problem.”
He says that people should ignore the diagnosis which is simply in his view unhelpful, concentrating instead on their own needs and goals rather than those preset by the system.
“If someone’s problems are hearing and seeing things, then that is something that people can do something about. Some of the approaches may be biochemical but there are plenty of other approaches which may be every bit as useful.”
He suggests that people should seek the kind of help they need for themselves, but he acknowledges that this too highlights an intrinsic problem.
“One of the problems with the current system is that people are scared of seeking help. If you look at the experiences of young black men, they will do everything possible to avoid seeking help from mental health. They have very low expectations of coming out of them any better and quite high expectations of not coming out of them at all or coming out considerably worse. We haven’t even begun to look at why it is the diagnosis is so disproportionately applied to particular groups. And until we start to address those social issues, it’s a negative label that carries an awful lot of negative problems with it.”
And, says Mr Crepaz-Keay, responsibility for those social problems lies squarely with the people who make the laws.
“Politicians typically frame any kind of mental health legislation around public safety, rather than what benefit it’s going to yield to people in need, and they have a lot to answer for. The public tone is set by the legislation which is not designed to help people, it’s designed to contain people and force them to take treatments that actually don’t necessarily help.”