My son is a prisoner of his mind

IT was difficult to know what to make of the "press releases" when they arrived at the offices of The Northern Echo. They came from a young man from Darlington called Peter who claimed he was being held against his will in a mental hospital because of his left-wing political beliefs.

The well-written, punchy letters kept coming for a few weeks and then suddenly stopped. They were clearly a cry for help.

That was more than three years ago. More recently I discovered the full story behind the "political prisoner": he suffers from schizophrenia, a form of mental illness which is still little-known and widely misunderstood.

His mother is Valerie, a former comprehensive school teacher who gave up her career to look after her eldest son. She suspected something was wrong with Peter from an early age.

"From the age of ten, there were problems which may have been an early sign of schizophrenia. We were told he might have attention deficit disorder," says Valerie, who lives in Darlington.

Other, more hurtful suggestions were made that Peter's parents were putting too much pressure on him to do well at school or he had "an unstable mother". The worst suggestion was that his behavioural difficulties were because he did not get on with his family.

"That really is getting things the wrong way around. The break-down in relationships is due to the illness, not the other way around," says Valerie.

Although his parents didn't realise it at the time, his behaviour was probable an early indication of schizophrenia, which usually affects boys in their late teens and young women a few years later. Caused by a chemical imbalance in the brain, the disease affects an estimated 300,000 people in the UK.

There is a false association between schizophrenia and "split personality". The reality is that the illness amounts to a breakdown of communication between different parts of the brain. Common symptoms include hallucinations, hearing voices, delusions, confused thinking and inappropriate emotional responses to situations.

Medication, combined with good family support, can relieve many of the symptoms after diagnosis but the National Schizophrenia Fellowship says supported housing, day care and employment play a vital part in recovery.

Worryingly, some psychiatrists believe many schizophrenic patients are missing out because a highly effective drug called Clozapine is still not being widely used, despite being licensed more than a decade ago.

Around ten per cent of schizophrenic patients die an unnatural death, usually suicide. In severe cases - such as Peter's - that figure goes up to 50 per cent.

As Peter became a teenager, the difficulties at school increased. "We had all kinds of problems and it was put down to normal adolescent behaviour. I taught in comprehensive schools for more than ten years, but this was different," says Valerie.

Increasingly, as he approached his late teens, Peter became prey to delusions. "He thought he was being followed, that people were watching him and talking about him," says Valerie.

A house move, from a village near Darlington into the town, helped push Peter over the edge. "In retrospect, it was the worst thing we could have done. We thought if we got him into a different environment, it would help," says Valerie.

Peter developed a fear of the new house which has never left him and he was eventually forcibly detained under the Mental Health Act - the first of three occasions when he was "sectioned" by doctors.

Looking back, Valerie says it was hard to convince doctors and other health professionals that her son was really ill. It was only when a crisis occurred that her son's condition was taken seriously.

"This is one of the worst problems for carers. It is very hard to get people to listen to you," says Valerie, who is now on the Northern area committee of the National Schizophrenia Fellowship. "The first port of call is a GP and many are not confident in dealing with something like mental illness."

Even after Peter was diagnosed and treatment began, he was adept at convincing health professionals that he was on top of his illness. "He would come across as perfectly normal and professionals are sometimes quite reluctant to recognise the fact that families know people better than they do, although that is now beginning to change," says Valerie.

One of the insidious things about schizophrenia is that sufferers can appear quite normal on the outside while entertaining fantastic delusions.

Valerie remembers leaving a case conference at a local hospital after everyone agreed that Peter was well enough to be allowed home for the weekend. "The moment we left the hospital, he told me that military intelligence was using his ears as satellite dishes to transmit messages," she says.

After several unhappy years of unsuccessful treatment, Peter's desperate parents decided to get a second opinion. The National Schizophrenia Fellowship, soon to be relaunched as Rethink Severe Mental Illness, suggested a psychiatrist called Mike Launer in Burnley who was prescribing a drug called Clozapine for patients who were not responding to other medication.

"Peter was on treatment that was making him worse. He had been put in an unsupervised hostel which we knew would not be right for him," says Valerie, who feared that her son was increasingly entertaining suicidal ideas. "We took advice from the NSF where to get a second opinion and I think that saved his life."

Valerie and her husband, who works in medical research, drove Peter the 80 miles across the Pennines to Burnley General Hospital where they met Dr Launer. The psychiatrist told the couple that he believed Peter would benefit from Clozapine as part of a structured programme of care.

Clozapine made a huge difference to Peter, allowing him to lead a relatively normal life in his own flat. The difference was so marked that Valerie cannot understand why it is not more widely prescribed.

Dr Launer estimates that around 100,000 people with schizophrenia could probably benefit from the drug - yet only around 15,000 are receiving it.

Until recently, Peter felt so well that he was working as a volunteer with 16-year-olds who have run away from home and he was pursuing a Duke of Edinburgh gold award. But after reading something about Clozapine on the Internet, Peter began refusing his medication.

"He stopped taking it because he read something on the Internet which was completely wrong. He was ill again within three or four days. The drug is now tied in with his delusions. It is pure Catch 22," says Valerie.

Peter has now been persuaded to take another drug and his mother is optimistic that he can be weaned back on to Clozapine. While the drug he is on "keeps him on an even keel", it does not take away the delusions which prevent him from leading a normal life.

Interestingly, there always seems some basis in reality for the delusions. In Peter's case, his interest in left-wing politics led him to suspect MI5.

"In the film (A Beautiful Mind) the guy thinks he is working for American intelligence against the Russians. Another young man I know thinks it's the drug barons that are after him. Other common delusions are about being chased by the Freemasons or the IRA," says Valerie.

One of the realistic things about the film is the way the delusions are depicted. "It just brings it home to you how real it is for the person who is having these thoughts," says Valerie.

Dr Launer, who treats people from all over the UK, feels strongly that Clozapine is not being used widely enough.

"People are definitely missing out. If people are not improving on other drugs within three to six months, Clozapine should be used. Patients are having to wait years, sometimes forever," he adds.

The psychiatrist was hugely impressed by Russell Crowe's depiction of a gifted schizophrenic. "It is absolutely accurate. It is a brilliant film. Crowe should have got an Oscar, his portrayal was superb," says Dr Launer. "It gave all the right messages that this guy contributed to society even though he was terribly ill."

Valerie is hoping that her son will resume his progress and in the meantime plans to get more involved in the work of the NSF. In December, the group opened its first Northern regional office in Earl's House Hospital in Lanchester, County Durham, courtesy of the County Durham mental health trust.

Valerie is now working on setting up a County Durham group to provide mutual support for people who are caring for schizophrenia patients. "You just need to be able to talk to someone who knows what they are talking about. I am happy for anyone to phone me. I don't need to know their names," she adds.

Despite the grim nature of much of her experience, she sometimes has to smile at some of the more bizarre aspects.

"My son has done some terrible things but sometimes all you can do is laugh about them," she says. "If you didn't, you would just scream."

* Peter is not his real name

To contact Valerie ring (01325) 489020.

The NSF website is www.rethink.org

The NSF regional office is on (0191) 333 3585.

SCHIZOPHRENIA

IT is one of the most common forms of severe mental illness, affecting about one in 100 at some point in their lives.

Men usually experience symptoms in their late teens and early 20s. Women get symptoms a few years later.

It is believed that the illness is caused by a breakdown of communication between different parts of the brain.

So-called "split personality" has nothing to do with schizophrenia.

People with schizophrenia are far more likely to harm themselves than others.

Common symptoms include hearing and seeing things, delusions, paranoia, depression, confused thinking, poor concentration and inappropriate emotional responses.

The illness can run in families but not necessarily. It is sometimes linked to experimentation with drugs.

Medication combined with supported housing, day care and employment all play a role in recovery.

Some 80 million working days are lost each year through schizophrenia at a cost of £3.7bn.

Treating schizophrenia costs the NHS around £1bn every year.