The common view that schizophrenia is a life sentence is not true. Considerable numbers of people - up to a third - who are diagnosed with the condition have one episode and are then free of symptoms for the rest of their lives. Many more recover a meaningful and fulfilling life, learning to overcome or live with intermittant episodes of psychosis. One such is John Nash, the subject of the award-winning film A Beautiful Mind and himself a Nobel Prize winner for economics. Only a minority of people who are diagnosed with schizophrenia live with more or less ever-present symptoms.

There are many misunderstandings about schizophrenia, all of them contributing to a huge public misunderstanding about severe mental illness in general. This stigma creates a barrier to people talking about their own mental health. One in four people experience some form of mental ill health each year while one in 100 people will experience schizophrenia at some point in their lives. It is a common health problem, but one that is shrouded in ignorance.

We need to rethink severe mental illness, to challenge ourselves and our approaches, if we are to overcome the stigma and break down the barriers that prevent people accessing the best care treatment at the earliest possible stage.

It is a challenge the National Schizophrenia Fellowship will be taking up itself this year, when we change our operating name to: Rethink severe mental illness. It is a new name that will take some living up to. But we are prepared to make the effort to make it succeed. Part of that process is going back to our roots, to the reasons why people directly affected by severe mental illness founded NSF 30 years ago. We want quality support and services, and a quality of life comparable with the best. There have been advances in the understanding of mental ill health and the best methods of providing care and support. But public understanding still lags far behind the possibilities.

Experiences of what constitutes quality of life can be very different from the clinical view. One consultant psychiatrist explained that he and his colleagues usually see people when they are ill, when their symptoms are at their worst or when they are struggling to cope. Almost by definition, they do not see the people who "recover". What is true for medical experts is true for other experts as well, such as the police and indeed MPs, who tend to see members of the public in need. For all these people schizophrenia appears to be about pain, struggle and torment.

That is not the experience for all the people directly affected - the "real experts".

Take "Susan", a young women in her late twenties, diagnosed with schizophrenia when she was 19. For her, being diagnosed meant an end to an 18-month period when neither she nor her family could get help. It also meant long stays in hospital, treatment with old-style "typical" medicines, horrific side effects, losing most of her friends and having to leave college temporarily and move back home. Now "Susan" is back in full time work, studying for a Masters degree, living independently and has a wide circle of friends. She says: "It may seem strange, but I am glad I had a mental illness. It meant that I lost people who were not real friends, discovered how strong I could be and how much my family loved me. It has made me a better person."

When a clinician talks about schizophrenia, they might use terms such as: loss of contact with reality, loss of self-insight, delusions, hallucinations, hearing voices inside your own head, paranoia, fixated fears which don't have an underlying basis in fact. Inappropriate mood: very high, very low, out of keeping with reality. And blunted emotion, the ability to observe and understand emotions in other people and express them yourself in an appropriate way to the situation.

Someone living with severe mental illness might use terms such as: distressing mood swings, voices, fears, unemployment, homelessness, lack of social contacts, poverty, physical illness, sense of loss of control over your own life, being subject to compulsion, being done to rather than listened to and facing continuous, repeated discrimination in almost every walk of life.

For the clinician, the important factors are what can be measured in medical terms - stabilising mood, ending the voices, stopping delusions and reducing paranoia. A person living with a severe mental illness may take a different approach. Their priorities are mental health services that work with them ,not do to them. They want somewhere to live, money to live on, something to do, something meaningful to occupy their time and help with establishing and maintaining a social life. People want somebody to turn to when they need help, particularly in a crisis. They want to be treated as an individual, a person worthy of respect. They want access to a range of care and treatment and to have the authority to choose what suits them best. At the bottom of the list, in survey after survey, and much to the surprise of many professionals, are narrow medical interventions.

These wider personal and social factors, taken alongside medical indicators, go some way toward assessing a person's quality of life but they do not tell the full story. People want safe and secure accommodation - a home they can call their own. But a home is also much more than a shelter from the elements. People tell us that they want quality accommodation, so that they can invite friends and family round, so that they can experience an increased control over their lives and a feeling of independence and acceptance by society. In supported accommodation, quality of life can also mean having easy access to staff who care and who can be turned to in a crisis or for more general support.

But does quality of life have relevance in a narrow medical sense as well? We believe so.

Take the issue of medicine "compliance". Most people with long term conditions experience side effects of medicines they use. In mental illness these side effects can be very serious. They include muscle tremors, rigidity, heart problems and a disturbing inner restlessness. Medical research traditionally doesn't ask embarrassing questions, and in psychosis, sexual side effects went unresearched for years. The common age of onset for schizophrenia is late teens for boys. How many boys rendered impotent, growing breasts and producing breast milk are going to carry on complying with treatment? Not many. Onset in women is generally a little later. Imagine yourself a woman in her early twenties taking a medicine that has increased your weight by 40 per cent. What does that do for your self-image and self confidence? And if you are experiencing paranoia how can it help to discover that your medicine really is damaging your heart.

There is now convincing evidence that involvement in treatment leads to better recovery, and information about medicines and side effects encourages compliance. A sense of personal control is really important.

So medicine research needs to include quality of life issues if it is to provide an accurate and reliable aid to prescribing practice. It needs to ask people how they experience a particular drug, not just measure its clinical effects.

We work closely with the Cochrane Schizophrenia Group, which looked at 2,000 randomised control trials published since the Second World War. Eighty-six per cent concerned medication - but not one of those trials asked people whether they felt better.

A major problem with the evidence-based medicine industry is it assumes researchers and clinicians know what's important to people - that there is a standard list of things important to all people with a certain condition and that you can measure those clinically. We know that's not the case because personal and social outcomes are important to people.

This is a profoundly different approach to the randomised control trial and poses challenges to rethink in this area too. Quality of life measures are complex. Researching individuality is complex. There are cost implications for research and medical practice. Is it realistic to do it?

The big question is whether quality of life research can be rigorous enough for regulators like the National Institute for Clinical Excellence. In the run-up to the schizophrenia drug appraisal, we combined with two other mental health charities to survey 2,667 people - the largest ever survey of the experiences of medicines for psychosis. Yet it was not accepted by the NICE collaborating centre as valid evidence. NICE accepted it in other ways, but the collaborating centre didn't count it as part of their main evidence base.

However difficult it is, we need to act in light of major cultural and political shifts. The whole of society is moving away from medicine being solely about heroic cures towards what are essentially quality of life issues. In addition, these days, treatments get used if they are not just safe and clinically effective, but also demanded by patient power.

Quality of life is important and complex, but we can make a start in three places:

We also need to campaign for a change to the terms of reference for NICE and more generally in the attitudes decision makers take to mental welfare.

To clinical effectiveness, and cost effectiveness, let's add patient effectiveness - as experienced by people at the receiving end.

It is a long road. It isn't an easy road to travel. But we do have to go down it and the only way you ever start a journey is by taking the first step.

For more information about the work of Re-think severe mental illness - The new name for The National Schizophrenia fellowship - contact: 020 7330 9100 or visit www.rethink.org