Pete Bullimore will never forget the day he opened his front door to a French spy. The spy, he recalls, was disguised as a social worker. "My wife and I had applied to become foster carers, but when the social worker turned up, I was warned that she was actually a spy. It was the first of many destructive, frightening and uncontrollable voices from within that began to bombard my life," he recalls. "It was like someone had switched a radio on in my head."
Needless to say, Bullimore and his wife did not become foster carers. He was diagnosed with chronic schizophrenia, a verdict that eventually led to him losing his family and his business. "I was given enough drugs to knock out a cow. It was a case of drug 'em up and shut 'em up. I spent long periods in a secure unit and for weeks on end, I had a towel under my mouth to soak up my dripping saliva." Life wasn't much better in the outside world. "I've been spat at, verbally abused and was even slashed with a knife. The police were less than sympathetic towards my case when they discovered I was a 'known schizophrenic'."
Eventually, against his doctor's wishes, Bullimore reduced his cocktail of medication and tried a self-help model of recovery. It worked. He is now in a successful job using his experiences to help others with mental health issues, his children are proud of him, and he is happy.
More and more people like Bullimore are turning their backs on the label of schizophrenia and its conventional treatments in an attempt to reclaim their lives. In fact, many have joined a growing group of renowned psychologists and psychiatrists to form the Campaign for Abolition of the Schizophrenia Label (CASL). "The idea that schizophrenia can be viewed as a specific, genetically determined, biologically driven brain disease has been based on bad science and social control since its inception," says Paul Hammersley, who teaches cognitive behaviour therapies for psychosis at the University of Manchester, and who is leading the campaign.
Schizophrenia, a name with Greek origins that roughly translates as "shattered mind", simply does not exist, insists Hammersley. "What's more, it is extremely damaging to those to whom it is applied." There is, he says, no consistency in how people are diagnosed. "It has been shown that it is possible for 15 individuals with nothing in common to be gathered together in one room and all to be diagnosed with schizophrenia. It has also been shown that when people are tested for a second time for schizophrenia, as few as 37% of people are found to have it. Scientists can't even agree with themselves."
The significance of genetic inheritance in schizophrenia is uncertain, he adds. "There is a widespread assertion that schizophrenia has a prevalence rate of 1% in all societies. But in fact there is wide disparity between rural and urban environments and between different countries. The lowest rates have been found in the Amish population, one of the most peaceful populations, where prevalence drops below 1%, whereas in Somalia, rates of schizophrenia go through the roof. If it really is a genetic brain disease, how can such disparity be explained?"
A more likely explanation, he believes, is that the psychotic episodes that lead to a diagnosis of schizophrenia are brought on by trauma. In fact, tests have shown that a high proportion of people who have psychotic episodes have experienced trauma.
Advocates of schizophrenia as a diagnosis say it is a chronic deteriorating condition in all cases. But, says Hammersley, many people recover and, like Bullimore, some do so outside psychiatry, using techniques ranging from cognitive behavioural therapy to family intervention and self-help methods of controlling their inner voices.
Probably the most invidious feature of schizophrenia is its stigma. Statistics show that many people try to commit suicide after being diagnosed, not least because the label implies that they are dangerous and unpredictable, chronically ill, unable to work or indeed function at any level, and in need of medication that may be ineffective and will usually cause unpleasant side effects.
"When people find out about my illness, it is 50/50 whether they close me down or accept me," says Richard Shrubb, 32, from Bristol. "I hate the fact that I have the same label as that guy who's been in the news for murdering someone as a result of his schizophrenia."
"As a single word, schizophrenia can ruin a life as surely as any bullet," says Hammersley. "I know of one woman whose psychiatrist told her it would have been better for her to have cancer. Our desire to dump schizophrenia in the diagnostic dustbin is therefore not just about the poor science that surrounds it, but the immense damage that this label brings about. Lives are being ruined on the basis of a highly suspect diagnostic system."
Schizophrenia was first posited in 1896 by a scientist called Emil Kraepelin. "By 1920, Kraepelin was still saying it should be a provisional category. I think the only reason it has stayed with us is that we have not come up with anything better," says Robin Murray, professor of psychiatry at the Institute of Psychiatry.
Like many psychiatrists, he would like to see schizophrenia replaced by the term "dopamine disregulation disorder". "We know that disregulation of [brain chemical] dopamine is the final common pathway to developing psychotic symptoms," he says.
In Japan, schizophrenia has already been replaced with "integration disorder". The Japanese Society of Psychiatry felt the old term had purely negative connotations, was ambiguous and was partly to blame for the inhumane treatment of those who carried the diagnosis. But does a new name provide a solution? Even Murray has doubts. "Japanese psychiatrists have told me that the stigma has become reattached to the new label, and I can see how that could happen with dopamine disregulation disorder too."
Mary Boyle, recently retired professor of psychology at the University of East London, adds that dopamine disregulation disorder focuses on what is supposedly going on in people's brains rather than in their lives and, as such, implies that drugs are still the preferred intervention. "What we need instead is not simply a different label but entirely different ways of thinking about those psychological experiences and behaviours that have been mislabelled and misunderstood as symptoms of schizophrenia," she says.
To this end, there is support for a model that breaks down some of the symptoms of so-called schizophrenia into four categories, which include such phenomena as hallucinations, withdrawal, scrambled speech and depression. The idea is that the four dimensions of functioning could be analysed independently from each other (since not all people diagnosed with schizophrenia have all of them) and placed on a continuum, which would bring the illness into line with others such as autism spectrum disorder.
But Richard Bentall, professor of clinical psychology at the University of Wales, Bangor, isn't convinced it will take off. "Psychiatrists like to put people into categories because it's easier and quicker. The government does too because they want a simple rule about who gets treatment," he says.
At the other end of the spectrum, Jeffrey Lieberman, director of the department of psychiatry at Columbia University, insists schizophrenia's "reliability and usefulness are indisputable". Lieberman says, "People with schizophrenia have abnormalities in brain structure and function seen on neuroimaging and electrophysiological tests. In addition, the evidence that vulnerability to schizophrenia is at least partly genetic is indisputable. Unfortunately, changing the name of the condition or even abolishing the concept will not affect the root cause of the stigma - the public's ignorance and fear of people with mental illness."
Majorie Wallace, chief executive of Sane, is also in favour of keeping the term. "The difficulty with changing the name schizo-phrenia is how you would raise awareness and fund research into the causes of an illness that doesn't exist or which has become too bland a word," she points out.
Ultimately, the decision will be made by the people who compile the diagnostic manuals used by the international medical professions. A working party has already been created to explore the schizophrenia issue: their conclusions will be drawn published in 2011, when the next manuals are due to be published.