You feel a familiar depression slinking back, or a mounting sense of mania, or disembodied, persecuting voices of schizophrenia that you've never heard before. But who or what can help you? According to the largest survey of people's views on treatment for mental illness, to be published on Friday, there are few options available, or informed choices made, when it comes to the use of psychiatric drugs.
A Question of Choice, produced by three charities, the National Schizophrenia Fellowship (NSF), Manic Depression Fellowship and Mind, reveals that 62% of people suffering mental illness had no choice of medication, and almost half stopped taking it without medical advice.
Most of the 2,663 people surveyed had diagnoses of schizophrenia, although many had manic depression or depression. The two main drug treatments for schizophrenia are "typical" and "atypical" antipsychotics.
The typicals (common ones are haloperidol, chlorpromazine and stelazine) have been around longest. While they help some people, they can cause severe long-term side-effects, sometimes irreversible even if treatment is stopped. The drugs are banned in parts of the US, following law suits linked to side-effects, and, according to Gary Hogman, head of policy and campaigns at the NSF, some British experts say such drugs would not be licensed if they were being introduced to the market now.
Atypicals - such as olanzapine, clozapine and risperidone - are the newer, growing group. Their side-effects are usually milder, and a striking finding from the survey relates to people's experiences of these versus typical antipsychotics. Asked "Which was the worst medicine you've ever had?", the highest ranked drugs were the three common typicals. And the best? The three atypicals - plus lithium, used mainly for manic depression.
Doctors can prescribe from either category, yet 84% of drugs used for schizophrenia are typical antipsychotics. The higher cost of atypicals, and conservative tendencies within the medical profession, may override clinical judgment and patient preference. Hogman says the survey shows that what is lacking, and must be provided, is choice. "People want comprehensive information, and to be allowed to choose what works best for them, not always get the cheapest option or whatever the doctor usually gives," he says.
Hogman argues that prescribing cheaper drugs is short-sighted. "Some people on typical antipsychotics need other drugs to combat side-effects. They frequently stop taking medication and, as a result, relapse is common.
"In short, many people are given drugs which they hate, and don't stick with, even though there are alternatives. It's a false economy. Their symptoms are not controlled, they may have repeated hospital admissions, at high cost to health, social care and sometimes the criminal justice system, and have seriously and needlessly impaired quality of life."
The national institute for clinical excellence (Nice), which advises the government on medical interventions, has just announced that it will assess drugs for schizophrenia - a process expected to take a year before yielding recommendations. The NSF hopes that this evaluation will not pay more attention to cold data of controlled trials than to hard evidence - the experiences of people who take the drugs.
The value of medication, for many, is clear from the survey. When asked "What single thing had or could make the biggest difference to quality of life?", the largest number cited medication. This included people for whom medicine has already made the biggest difference and those who view improved medicine as the best thing that could happen.
But the survey does not end there. It also asked people's views about non-drug treatments - from psychotherapy to exercise.
As Hogman says: "Medication was our starting point, but the survey's main colour is its illustration of the importance of a holistic approach. It demonstrates that those who are unwell benefit immensely from the occupational and leisure activities that we all like."
This holistic approach to mental illness is the cornerstone of NSF philosophy, based on recognising the interplay between mental and physical health.
Hogman says: "It's just common sense. There aren't two groups in society, ill people and well people. Mental illness affects all walks of life. Most people know what they need and enjoy - such as having enough money, pleasant accommodation, things to do and people to share them with - and those who are ill are no exception.
"Without these things, the risk of people suffering illness is increased, and getting better and staying well is more difficult. The picture is further complicated by the fact that the illness itself impedes ability to access them."
Mental Health Foundation statistics support these views: psychiatric admissions are three times greater in government-defined "deprived" areas, and the risk of suicide among the unemployed is 11 times higher than among those in work.
These figures and the survey's findings do not solve the mysteries of what causes mental illness, nor do they imply that good housing or jobs can alone prevent people from becoming ill, or cure them.
However, many interacting factors, from genetics to the environment, are important in causing mental illness and give clues as to useful interventions.
One of the survey's most striking statistics is that the most appreciated interventions are not complex or specialised. Exercise, training and education were ranked top by 85% of those who had tried them, and art/music therapy was best liked by 81%. It is another indication from the survey that drawing boundaries between the needs of the well and those of the ill is frequently artificial and unhelpful.
How birdwatching and art brought a new focus
Julian Swan's story illustrates how combining medication, non-drug treatments and social inclusion can dramatically help even those with severe, long-lasting illness.
Diagnosed with schizophrenia in 1992, after hearing voices for 16 years, Julian says freedom to choose his treatment was fundamental to recovery. "I told the psychiatrist that if I wasn't better in three months I'd kill myself," he recalls. "He was so responsive, but imposed nothing. He offered a hospital bed, which I declined, but I accepted sulpiride [a typical antipsychotic]. After a fortnight, the voices and paranoia had gone. After eight years, I recently stopped taking sulpiride, and I feel fine."
Since 1995, Swan has gained a degree in English and philosophy, a postgraduate qualification in social work from Cardiff University, and is about to start a new job in youth homelessness. He is convinced that medication only partly accounts for his recovery.
"It got my brain together by resolving the chemical imbalance," he says. "Then I was offered three or four non-drug treatments, and opted for art and drama therapy. These were incredible. I did lots of painting and expressed so much. I got my mind together through being involved and included."
Swan talks of another passion, for birdwatching, but also of one frustration. "My GP says I can't have psychotherapy. I'd like a 'debriefing' after living somewhere so odd, in my head, for 20 years. Apparently, I'm too well. In a big city, you only get help in a crisis."
For Swan, an empathetic doctor offering genuine choice, and a combination of treatments, education, training and employment have been life-changing. The National Schizophrenia Fellowship survey concludes that money should be spent on more holistic approaches - investments which would ultimately reduce the wide-ranging costs of caring for the mentally ill.
Figuring out the problem
• £76 million is spent on 1.2 m annual prescriptions for schizophrenia.
• 84% of drugs prescribed for schizophrenia are old style (typical), yet new drugs (atypicals) account for 76% of medication costs.
• Postcode prescribing does happen; spending on atypicals varies tenfold across health authorities.
• Careful prescribing and individually tailored support can reduce hospital admissions. A week on a psychiatric ward costs about £960 a person, compared to £230 a week at home with support.
• A Question of Choice will be available at www.nsf.org.uk or from Lucy Widenka on 020-7330 9108. The report was prepared without any drug company funding.
