Champion of the 'forgotten illness' backs 'IoS' campaign

Marjorie Wallace is fretting about her make-up. Earlier, she was worrying about her hair. On top of the clutter on her City banker-size desk sits a bottle of Yves St Laurent's Opium perfume. A Pied Piper jacket finishes off her combination of black trousers with transparent lacy panels and purple gypsyish blouse. And behind her is a "hall of fame" of photos of Ivana Trump, Sir David Frost, Ned Sherrin and Prince Charles.

It all adds up to something rather glamorous. And it's in sharp contrast to the cause to which Marjorie Wallace is committed. She has spent the past 16 years highlighting the plight of the mentally ill, and as chief executive of Sane, the charity she founded to help people with schizophrenia, she has campaigned tirelessly for better treatment and more understanding.

But for all the advances made – and there have been some significant ones – she is despondent. Thursday is World Mental Health Day, but rather than it being a celebration, Ms Wallace is fearful – fearful that the proposed Mental Health Bill is going to set back the cause of the mentally ill with its emphasis on compulsory detention, and a lack of rights to assessment, care and treatment.

"It has been hijacked by the public safety agenda which has distorted the vision of trying to give people treatment. Instead we have a legalistic labyrinth," she said. "We need quick responses, we need to deal with people when they have relapses. We need to intervene before compulsory detention is necessary."

Ms Wallace is backing The Independent on Sunday's mental health campaign which urges the Government to ensure that people with mental illness have the most appropriate treatment, and not be subject to forcible treatment on leaving hospital.

Ms Wallace founded Sane after she wrote a series of articles for The Times, describing schizophrenia as "the forgotten illness". The policy of care in the community had led to the closure of the Victorian mental hospitals, but there was little support for those who had been released from them. People who had been institutionalised for years were left friendless, unable to cope by themselves.

Today, the picture is similarly bleak. Her charity's telephone service, Saneline, receives 1,000 calls a week both from people with schizophrenia and the friends and relations who care for them. The callers complain of the time it takes to see a psychiatrist – of which there is a severe shortage – as well as a continuing lack of back-up for patients and understanding of the plight of carers.

What Ms Wallace finds particularly disturbing is the lack of what she calls "sanctuary" today. She is glad that the old hospitals have gone, but horrified by conditions in psychiatric wards. "To visit one of these wards is deeply disturbing," she said. "The drugs dealers have moved in on them. Patients pace the corridors, the recreation rooms have just a few chairs, there are no paintings on the walls, no outlet for creative activities, no counselling. They are utterly empty places."

Ms Wallace is particularly concerned about the way in which families are treated by the mental health service, and her Saneline callers have convinced her that they are often blamed for the onset of mental illness. The traditional commitment to the patient-doctor relationship, and to confidentiality, means they are not kept informed.

"They are outside the circle of information, and treated as part of the problem. This culture of exclusion dominates thinking, although the new framework says carers must be involved in decisions."

Only last week, Ms Wallace received a call from a mother whose 22-year-old son had suffered a psychotic breakdown a year ago, after hearing voices and receiving "messages". After seeing a psychiatrist, he was prescribed medication, refused to take it, and disappeared. When he was found, a "crisis-resolution team" decided to send him home. He then tried to strangle his mother. She is now distraught, wanting to help him get treatment, but refused information on the grounds of confidentiality.

This tale of such suffering and sadness is typical of the thousands Ms Wallace has heard over the years. How does she stand it? She's clearly a fighter: she's come through breast cancer, she's secured millions of pounds in donations from her "hall of fame", and the Prince of Wales Centre has opened in Oxford for research into schizophrenia.

"There is an acknowledgment today of mental illness, a public awareness, and that is an improvement," she said. "But there is still a fundamental loneliness about mental illness. We should not leave people to their silent grief."

If help had been available, she might not have taken an overdose

The response to The Independent on Sunday's mental health campaign has been overwhelming. Hundreds of readers have written in support – sharing their thoughts and personal stories. Here are some of your views.

There is a major problem that the Crown Prosecution Service and judges drop cases if the complainant has a history of mental illness as there is an assumption that they are unreliable and will not be believed by juries. As this is standard practice, the mentally ill are never publicised as victims, only as perpetrators, and this assumption stands unchallenged.

Dr Geoff Searle

Consultant psychiatrist

My own interest results from my daughter developing manic depression. She was 25 – her doctor failed to recognise her illness. She lost her flat, her job and ultimately her life as no one medical would intervene to help. Had the illness been better understood and had help been more readily available, she might not have felt that no hope was possible and taken an overdose of paracetamol.

Jean Fooks

Oxford

I am writing to support your campaign concerning the new Mental Health Bill. This legislation will take much-needed funds away from delivering health care – physical and psychological – to the majority of those in the penal system.

Joe Sim

Professor of Criminology, Liverpool John Moores University

I have had a number of depressive episodes over the last 10 to 12 years. I have lost my wife, my house and job as a result. I am always amazed at the level of ignorance about the causes, symptoms and consequences that stem from mental illness in general and depressive illness in particular. Whatever can be done to demonstrate to the wider public that these conditions are not the preserve of lunatics, but of human beings such as themselves, can only be a good thing.

Niall Wilson

London SW18

Let's take what was good from the past, but not swing to extremes. Sick people deserve the best treatment and rehabilitation we can offer. Never take the easy, cruel, retrograde way of simply "locking them up". It was not so long ago that an unmarried mother was locked up and considered retrograde.

Jane Jordan

Southampton

Additional reporting by Elizabeth Boston