The mentally ill are still neglected and stigmatised – just as I found they were 10 years ago
The Schizophrenia Commission's report, published today, is an indictment of the way we treat some of our most vulnerable citizens. Jeremy Laurance laments a lost decade in mental healthcare
Jeremy Laurance is a writer on health issues. He is former health editor of The Independent and the i and has covered the specialism for more than 20 years. He thinks the harm medicine does is under-appreciated, the harm it prevents over-rated, and that cycling works better than most drugs. He was named Specialist Journalist of the Year in the 2011 British Press Awards.
Wednesday 14 November 2012
Ten years ago I spent six months touring the country observing the care provided to people with mental illness for a book I was writing. Pure Madness, published in 2003, described a system "driven by fear", in which risk reduction and protection of the public was the priority, rather than the care of patients. The public and political focus on the tiny numbers who posed a risk had distracted attention from the "huge majority of frightened, disturbed people whose suffering remains largely hidden", I wrote.
When I was asked to join the Schizophrenia Commission last year I was delighted to have the chance to look again at the mental health service a decade on from my earlier investigation. What I found was profoundly disheartening.
Despite billions of pounds of extra investment in the NHS, which had brought many improvements in resources, staffing and buildings, the plight of the patients and their carers seemed, depressingly, unchanged.
The complaints we heard – of people drugged into insensibility, of incessant changes of psychiatrist and social worker, of repeated failures to communicate, show kindness or compassion, of families ignored and neglected – were the same as those I heard a decade ago.
Each of the 220,000 patients diagnosed with the illness in the UK costs £36,000 a year to treat yet are cared for on in-patient wards where violence and sexual harassment are endemic, increasingly treated against their will, mis-prescribed excessive levels of drugs, denied talking therapies and condemned to a life of unemployment and poverty. One mother, Ros Bentley, whose son developed paranoid delusions 14 years ago, told us he had had 24 changes of psychiatrist and 15 changes of care co-ordinator. "It is hardly surprising that Andrew [a pseudonym] does not engage with services. He sees the social workers as the people who put him in hospital," she said.
The inquiry report, An Abandoned Illness, published today, comes 27 years after The Forgotten Illness, a series of articles on schizophrenia published in The Times in 1985. Written by Marjorie Wallace, who later founded the mental health charity Sane, it exposed the terrible neglect of patients discharged from mental hospital to eke out a half-life in the world outside.
The policy of community care is now more than 50 years old but its aim of restoring mentally ill people to as normal a life as possible beyond the asylum remains only half-realised.
Yesterday the Government announced mental health would be given equal priority with physical health under the NHS mandate, with all patients offered treatment in a "timely" manner.
During our year-long inquiry, established by the mental health charity Rethink, the most frequent problems we came across were lack of continuity of care, heavy reliance on medication and the absence of common humanity in dealings with patients.
Despite the expenditure of millions of pounds over the last decade, pessimism pervades the system and staff are demoralised. Families battle for information with unresponsive services, while levels of coercion are rising.
In some respects, things are better. Suicide rates in mental hospitals are down and more patients have single rooms. Extra day centres are open and buildings have been smartened up.
But it takes more than bricks and mortar to change a culture in which mental illness is stigmatised, mentally ill people ostracised and mental health is regarded as less important than physical health.
To cite one example – the 15- to 20-year higher mortality rate among people with mental illness would be a scandal in any other group. It's a death rate more akin to those found in sub-Saharan Africa than in 21st-century England. It is a consequence not of mental illness itself, but of the neglect of the physical health problems of people with mental illness.
Another group was similarly regarded as beyond help – once. When Aids first emerged in the 1980s, people infected with the virus were discriminated against, stigmatised and in some cases banished from homes and workplaces. Borders were closed, laws passed and the wrath of God invoked against those whose "sinfulness" threatened humanity.
But effective lobbying by the medical and HIV communities grew into a global campaign which turned the tide of prejudice, saw the development of effective treatments and the marshalling of resources against the disease on a scale never seen before in history.
What Britain and the world needs is a similar campaign on mental health to end stigma and discrimination, to rank it equally with physical health, to award those who work in it the status and resources they need and to grant the patients who are ill the care that they deserve. Humanity demands it.
Case studies: Faces of the illness
Andrew [not his real name] was 20 when he was first admitted to psychiatric hospital. He had suffered paranoid delusions a year earlier after heavy use of cannabis, and deteriorated despite treatment until he was "very agitated and could barely communicate", said his mother, Ros Bentley.
There followed more than a decade-long struggle as mother and son tried to cope with the turbulence of his illness and of services meant to help him. "I feel I'm on an emotional roller coaster coping with the challenge of Andrew's behaviour and the battles with services," Ros said. "He's been prescribed high doses of medication which have caused massive weight gain and over sedation. I worry some of the drugs he has tried and the long hospitalisations have made him worse."
Andrew has been hospitalised, had 14 psychiatrists and 15 changes of care co-ordinator. He has been sectioned, sedated and placed in what he calls "the punishment room" – a cell with a mattress, toilet and glass wall. Today, after a series of traumatic hospital admissions he is back home, working as a gardener. But he is drugged, sleeps much of the time and is obese, putting him at risk of heart disease and diabetes.
"It is so sad to see him like he is," said Ros. "He used to play rugby for his school, and swim and he was a very good skier. Now I can do more in the gym than he can."
Laura Sherlock, 36, toured the world as a professional trombone player in her 20s. She was set for a glittering career until she suffered a breakdown.
She said: "In my mind, God was criticising me, calling me dirt and threatening to hurt my family. Terrified, I obeyed his commands – cutting, vomiting, scalding, burning, and overdosing on medication."
She was diagnosed with schizophrenia and prescribed anti-psychotic drugs which destroyed her ability to play her trombone. She said: "I felt numb, deathly tired and barely able to move or think. When I stopped taking my tablets I was given medication by injection. I had no say in my own treatment."
Almost a decade later Laura is still taking anti-psychotic drugs but has created a new life for herself, supported by a psychiatric nurse and cognitive behaviour therapy. She now teaches medical students about treating patients with mental problems. "I have had relapses but my support network has saved me. My friends and family are always there. They are my reason for staying alive."
Paul was sectioned aged 18 and spent a traumatic time on a secure ward.
"The ward should have been a therapeutic environment for me – instead I felt I was being punished. Being forcibly injected was particularly traumatic. I was pinned down, face to the floor with my hands tied behind my back."
Paul was eventually diagnosed at 22 and later found a drug that helped. He started at Plymouth University studying chemistry where now, at 29, he is finishing his degree.
220,000 people are affected by schizophrenia in England at any given time
1 in 6 will show signs of psychosis, such as hearing voices, at some point in their lives
10% of patients get psychological therapy, despite it being recommended by Nice
8% of schizophrenics are employed
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