Dr Rufus May: One man and a bed
As a teenager with schizophrenia he saw the mental health system brutalise patients. He became a doctor to change things from within. Now he is pushing a bed from London to Brighton. Julia Stuart hears why. Dr Rufus May remembers with clarity how it felt to be pinned to the floor of a psychiatric hospital, for his trousers and underpants to be pulled down to his ankles by a gang of strangers and to be injected in the buttocks with mind-altering drugs. "It feels like rape," he says. "It's humiliating and degrading. I know of people who have killed themselves rather than be readmitted to hospital, having had such bad experiences of being subjected to or witnessing the use of force."
It was his terrifying episode that eventually led to Dr May becoming an NHS clinical psychologist, in the hope of changing practices from within. Four years ago it was his remarkable story that inspired the editor of this newspaper to begin The Independent on Sunday's campaign for better treatment of the mentally ill.
An opponent of the forced used of drugs and ECT, Dr May prefers to offer his patients t'ai chi and group therapy. And while he had to lie about his history of illness to become a psychologist, he is now fully open about his past, including to his patients, most of whom believe it to be beneficial to them.
"Over the past five or six years there have been one or two people who have indicated that they would rather have a sane psychologist than a mad one," says the 38-year-old, who lives near Bradford with his partner and two sons. "But in general they think I'll understand better.
"I've definitely got a touch of madness but I think what I'm doing is actually quite sane."
Rufus May grew up happily in Islington, north London, the older of two children, until the age of 11 when his mother had a brain haemorrhage, leaving her physically and mentally disabled. While she made a strong recovery with the help of her family, tensions grew and arguments were frequent. "I went from being a bright, achieving child to someone who would avoid academic work and hang out on street corners," he says.
By the age of 15 he was smoking dope and later dropped out of his A levels. Two years later, he had a brief renaissance when he got a girlfriend and started trying to get a job in graphic design. But when she left him nine months into the relationship, not only was he devastated, he found himself without any friends. He thought life would improve when he got a job as a draughtsman, but he found it so dull that he started inventing stories about the people around him.
Once, while sitting on a train delivering a package to a customer, he imagined that he was a spy. "I started thinking what if that woman in the dark glasses was an agent who had got me under surveillance. I remember indulging more and more in these fantasies. I wondered whether my girlfriend had been a spy for the Communists. The fantasies were partly driven by my grief over the relationship breaking up and my mother's illness that had not been addressed. They were also, perhaps, an attempt to escape a dull, depressing reality."
As his ideas got more intense, his sleep became disturbed and he started going for walks at night. He would hear messages on the radio warning him to be careful. Eventually, he developed chest pains from the stress of believing he was under surveillance. When he told his parents, they sent him to his GP. Referred to a psychiatrist, the 18-year-old was admitted to Hackney hospital, diagnosed with schizo- phrenia and put on medication.
"I was a skinny, white, middle- class boy in this hospital where there were people from prison, and it was quite scary," he remembers. "I developed a manic laugh that I copied from other patients to make me seem more dangerous than I was."
He was discharged after a month, but within weeks was readmitted. When it was discovered that he was hiding his medication under his tongue, because of the terrible side effects, he was forcibly injected. "It's akin to torture to force people to take substances they don't want to. In Holland you can only force treatment on someone if they are being violent, but here that's not necessary. The British government is one of the strongest proponents of forced treatment."
Over a period of 14 months he was hospitalised three times: "I always tried to leave, but the police would be sent to pick me up." When finally discharged, he was put on two-weekly injections for about six months, as an outpatient. He got a place at art school and a part-time job as a night security guard at Highgate Cemetery. Against medical advice, 13 months after his initial diagnosis he came off medication. He felt it was slowing him down and he had a tremor while painting.
By the age of 19, he had dropped out of college and was living in a squat. The teenager got involved in drama, which eventually led to care work. He then decided to become a psychologist.
"Not only had I witnessed what I thought was inhumane treatment, I had witnessed how it wasn't working," he says. A friend was given so much medication she put on a vast amount of weight and just sat in the ward trembling. She took her own life. "No one would talk to us about our experiences when we were in hospital, it was discouraged. We were very isolated."
He was employed as a trainee psychologist by a London NHS Trust, having failed to declare his mental illness on his occupational health form. While training in the East End, one London borough away from where he had been treated as a patient, he was twice recognised by nurses who agreed not to say anything. "In a way I became the spy of my fantasies. I would be sitting in a ward thinking, if people really knew where I had been they wouldn't be so keen to let me be here."
He told his employer a year after qualifying. "There was a conference about recovery and they were looking for personal stories, so I wrote a talk about how I had recovered and how it influenced my work as a clinical psychologist. I put a copy of it in all my colleagues' pigeonholes and told my boss. People were quite shocked really. Some were cautiously supportive, some thought it would be best left to the therapist's couch. My employers were OK about it, but I did gradually get a bit isolated by my colleagues. I think they felt threatened by me, so I moved to Bradford because it has a reputation for quite progressive thinking in mental health."
Dr May now works with adults who have severe mental health problems. Does he think he might become ill again? "I know how to look after myself. In some ways I think I'm very strong, but if something terrible happened to my family, who knows? I understand my madness, if you like, so I don't think it will ever become a problem for me."
He believes that all diagnoses of schizophrenia are "misdiagnoses". "Schizophrenia doesn't tell you anything meaningful about the cause of people's problems, the content of their experiences or their outcome - the three things that a diagnosis should do. It's a ragbag category. It needs to be scrapped. I had a psychotic episode; unconscious material was coming up which was meaningful and related to my emotional past. Madness is a creative response to pain."
Campaign: Follow the giant syringe to Mad Hatter's party
Dr Rufus May and a group of fellow campaigners will tomorrow start pushing a bed from Brighton to London to raise awareness of the forced use of drugs and ECT in psychiatric hospitals.
The bed, complete with a dummy patient, will be chased by a giant syringe. There will also be an ECT machine offering free "treatments" to the general public.
The group will arrive on Thursday at the former site of Bedlam hospital for a Mad Hatter's tea party. A petition about the unacceptability of the use of force in psychiatry will be handed to Tony Blair. Forced treatment will be discussed at the United Nations on 14 August as part of the Convention on the Rights of People with Disabilities.