The woman who wouldn't take no for an answer

These days the subject of "madness" is surrounded by euphemism. The word has become unacceptable; the acceptable expression is now mental wellbeing. Wallace finds all this political correctness exasperating, but agrees it is part of a determination to talk respectfully and compassionately about people who suffer the miseries of mental illness. And that new kindness must be in considerable part due to her own long-drawn-out struggles. When Wallace was a psychology student in the 1960s, "mad people" were considered frightening, alienating and, above all, different. Psychoanalysis and talking cures might work for rich neurotics, but people with psychoses were still consigned to the huge Victorian asylums dotted all over the country.

While doing undergraduate research in the back wards of such a hospital, she met the man she married, Count Skarbek, a romantic Polish aristocrat who had escaped to England during the war and qualified as a psychiatrist. It was in such wards that she gained her first insights into the sufferings of people. Although some of these institutions were humanely run and provided real asylum, others were not, and many had become almost as overcrowded and notorious as the workhouses of Dickens's Britain.

So it ought to have been a kind of miracle when, in the 1960s, new drugs were invented that could almost empty the hospitals. These anti-psychotic drugs could control the more florid symptoms of schizophrenia and manic depression (bipolar disorder). The side effects were often unpleasant, but the drugs were able to set people free from long-stay hospitals. This liberation ought to have brought about great humanitarian changes. Unfortunately, a toxic mix of incompetence, cynicism and under-resourcing turned it into one of the scandals of the 20th century.

The release of patients into care in the community - admittedly a noble ideal - was horribly mismanaged. Around the time of the 1983 Mental Health Act it was accelerated; inmates were discharged in huge numbers, without the necessary preparation or money. It was driven by a combination of wishful thinking and meanness; the tenderhearted, often influenced by fashionable theories questioning the reality of mental illness, simply thought it ought to work. At the same time, public servants and planners thought it would be cheaper than running the asylums and, besides, the valuable sites could be sold off very profitably to property developers. So the asylums were demolished, and psychiatric beds disappeared in their thousands. And the numbers are still going down: since 1990, 24,000 beds have been lost. But there was all too little community and all too little care.

As Wallace says, it was "a social experiment undertaken without any estimates of the numbers, the costs or casualties involved. And it created a new kind of misery - the displaced and abandoned people of the 1980s, carelessly decanted into seaside bedsits and back-street hostels, onto the streets or into prison, or returned to families who had been given no help". As she said at the time, care in the community was like a leaky tent in a hurricane.

Observing this terrible neglect prompted Wallace as a young journalist to write her famous campaigning series, The Forgotten Illness, 22 years ago. "Campaigning journalists," she wrote later, "should act as guardians of our unwritten constitution, continually invading and inspecting those spaces of society which by inertia and laziness we have allowed to go rotten". That is precisely what she did. She went into spaces most people would rather avoid, spending nights on urine-soaked mattresses in hostels, talking to the very disturbed, walking out after dark to meet mentally ill people among the cardboard boxes of the homeless, going to the funerals of those who had committed suicide - all victims of the care-in-the-community policy, neglect and indifference. The stories she wrote about were harrowing. So too were the pictures that went with them, taken by Snowdon, her friend and fellow campaigner.

The response to these articles was heart-rending; it inspired Wallace, with the support of The Sunday Times, The Times and News International, to found Sane, now a leading mental-health charity. More perhaps than any other individual, she has raised public awareness of people with mental illness and our failures in caring for them. She created Saneline, the only specialist mental-health helpline giving practical support 365 days a year. Hers is the voice of explanation you will almost always hear when a new policy threatens the interests of sick people and their families, and in the rare cases when a mentally ill person kills someone. Academics, politicians and ministers seek her opinion - last month she was invited to discuss the future of mental-health services and the new mental-health bill with the secretary of state for health.

She is an honorary doctor of science, an honorary fellow of the Royal College of Psychiatrists, and she received a British Neuroscience Association award in 2002. She has also done much to promote scientific research into mental illness. This has meant endless fundraising, lunches and galas and sophisticated begging; with her networking, Wallace managed personally to raise £6m from the King of Saudi Arabia, the Xylas shipping family and the Sultan of Brunei for a research centre in Oxford. It was officially opened four years ago by Sane's patron, the Prince of Wales.

These are formidable achievements and they represent years of fighting, years in the political trenches. Today, she sometimes shows the strain. The personal cost has been high: her marriage to Count Skarbek ended, and for years she was a single mother of four young children. She took them with her to mental hospitals and prison car parks, and answered constant telephone calls to the background of their piano practice.

It has been lonely spending time with sick, desperate people. And she is susceptible to other people's distress, partly because of her own tendencies to anxiety and depression. As her eldest son, Sacha Skarbek, says, "Mum is by nature melancholic. She lives in autumn rather than summer. I think that's why she understands mental-health issues so well. There's a kind of tragedy about her that helps her empathise with other people." But empathy can be a heavy burden. And she has at times felt isolated, she says, trying to keep to the vision she had in the face of opposition, when her views were out of fashion. She has had to deal with angry marches against her and even with death threats.

So what has changed since those campaigning articles of years ago? "There are some battles that Sane and the many others of us who have fought for better recognition, care and treatment have won," says Wallace. "But there are still far too many casualties. The mental-health system is still failing those with long-term mental illness and their families." And this is despite Labour's pledge to make mental health one of its top three priorities when it came to power in 1997.

The truth is that the help available today for mentally ill people in this country is shockingly inadequate. Whether in the community or in a psychiatric bed, it is patchy, underfunded and, for many, nonexistent. Expert surveys agree on this. An independent audit published in 2005 by the King's Fund reported that "there has been no shift in performance, despite the extra resources".

A 2006 report on NHS mental-health services by the research group Reform documented its own and other experts' findings of an alarming situation. Most mentally ill people face unacceptably long waiting times for treatment, during which their illnesses take deeper root. Most of the one in six people suffering from common but disabling illnesses such as depression and anxiety may never see a mental-health specialist. The government's Healthcare Commission itself reported in 2005 that only half of those with depression were receiving treatment of any kind; only 8% of people with depression had seen a psychiatrist. Few of the beds lost in the care-in-the-community policy have been replaced with the promised 24-hour supervised units in the community. Only two-thirds of community-based crisis-resolution teams operate 24 hours a day, and fewer than half of those who receive mental-health services reported that they had access to crisis care. Which means that half don't. Yet mental illness and personal disasters are no respecters of office hours. This explains in part the anguish behind the callers to Saneline, who talk constantly of feeling lonely and isolated. They are both the sufferers and their families.

As for psychiatric wards: too many are close to a national disgrace. With so few beds, only the most acutely disturbed qualify for a hospital place and are admitted (or confined) to a ward. Some inner-city units are "overcrowded, shabby, dirty and rife with aggression and fear", says Sane. "It is unforgivable," says Wallace, "that we have replaced the asylums with units where both patients and staff feel unsafe." The ominously titled In Place of Fear?, the Mental Health Act Commission report of 2006, corroborates this disturbing picture. The Department of Health's response has been a building-improvement programme - a completely inadequate reaction, according to Reform, to a crisis that involves significant difficulties with staff and standards.

This is not only a scandal, it is a mystery. True to its promises, Labour spends more on mental-health care than any other country in the EU - about 12% of total health spending compared with a European average of 5.5%. Funding has trebled in the past five years to £4.9 billion a year. There are hundreds of new crisis-resolution teams, assertive outreach teams and early-intervention teams, endless consultative papers, shiny new initiatives and good intentions; but the results are painfully inconsistent. Despite the government's emphasis on care in the community, most of the extra spending is going to psychiatric-hospital beds. But, absurdly, it is paying for fewer beds than before because they're more expensive. So nobody wins. Meanwhile, the Treasury's large increases in funds for mental health have not been ring-fenced for that alone, and have been siphoned off by NHS trusts into acute services, in their efforts to make good their budget deficits.

There was a time when Wallace was best known for her passionate campaign to stop the wholesale closing of mental-hospital beds and to prevent sick people being slung out into misery and neglect. As a result, many wrongly assumed she must be opposed to care in the community. This made her unpopular for years with the mental-health Establishment. In fact she is very much in favour of care in the community for most people, when there are the staff and money to make it work; she also believes that some mentally ill people need periods of time out in a place of refuge and safety - the meaning of the word "asylum". She believes in both, and in choice, and her concern is that there still seems to be a ruthless agenda to close inpatient beds, without the necessary support in the community.

The crisis in inpatient care is being worsened by street drugs; increasing numbers are being admitted to overstretched wards with psychotic breakdowns due to cocaine and cannabis. The government has been warned by Sane, among other groups, about growing evidence of the biochemical links between cannabis (skunk in particular) and illnesses such as schizophrenia. But instead of preparing for the problem, the Home Office took the decision five years ago, partly to save police time, to downgrade cannabis from a class-B to a class-C drug, with some tranquillisers and painkillers. "That gave out all the wrong messages," says Wallace. "Three-quarters of young people surveyed recently believe cannabis is legal and harmless. There is a significant minority, perhaps 10-20%, for whom taking cannabis - especially as a teenager, when the brain is developing - can trigger breakdown and, in some cases, lifelong mental damage."

It is not hard to imagine the disastrous effects on mental-health units; 80% of new admissions to some of London's acute psychiatric wards are estimated to be people who take street drugs. "The government's been brilliant," says Wallace, with some acerbity. "You make your acute wards unbearable, overcrowded and unsafe, you fill them with people who are having aggressive psychotic breakdowns because they are high on drugs, so there's practically no responsible psychiatrist who'd dare admit a middle-aged woman having a breakdown, or a depressed and suicidal girl. They have to take the risk of leaving them in the community. It's terrible."

Another driver for this lack of inpatient care is the government's target to prevent extended inpatient stay. For a crisis-resolution team dealing with someone in the community with an acute mental-health problem, a successful intervention, for which they would get brownie points, is one that does not involve a hospital admission. The incentive is to leave a patient to care in the community, with all its shortcomings, because each day of expensive inpatient care is a measure of failure for the team. This is just one of many such perverse incentives in the NHS.

A recently leaked report suggests the Department of Health is actually planning to fine hospitals for every day a patient remains there who could and should have been discharged. However, the crisis in psychiatric wards is only part of the problem. What most people with mental illnesses need and want is care in the community. They want to be treated at home, and to carry on with normal life as far as possible, and this should be possible. But community treatment is notoriously erratic.

Take drugs, for instance. These days there are several relatively new anti-psychotic drugs available, and they are actively recommended as best value for 60% of sufferers. These drugs are much easier to tolerate, which means patients are likely to keep taking them. One of the greatest risks to care in the community is when patients stop taking their medication and fall back into a cycle of acute breakdowns. Yet there has been huge and unnecessary variation in different health authorities: according to a Reform study carried out in 2005, of 28 Strategic Health Authorities in England, 18 were seriously under-prescribing these drugs, and so denying them to people who would do better on them. There is no good reason for this: these drugs are not new and are good value for public money as part of a whole treatment plan.

When Labour came to power with a 10-year strategic framework to improve standards in mental-health care, expectations were high all round. But mental-health service providers were told by Whitehall to concentrate their resources on meeting new targets and creating new specialist teams aimed at assertive outreach and early intervention. New crisis-resolution or home-treatment teams were set up to prevent hospital admissions by making regular visits to check whether people were taking their drugs and living safely in reasonable conditions. But some psychiatrists say these teams were created often at the expense of the existing community mental-health teams, which in some areas were left depleted and demoralised.

Even the new teams (more than 700 are now in existence) are so overstretched, many can only keep a patient on their books for a short time. "It's harder to get onto the books of one of the new mental-health-care teams," says Wallace, "than to get into Oxbridge." Like all services that rely on several people getting together at any one time, they can be difficult to co-ordinate; they also change staff frequently, so that patients meet a bewildering choice of new faces. And in recent cost-cutting, many of the new teams are being disbanded almost as soon as they are formed.

The new teams could have worked if they had not been a drain on the time of some existing community psychiatric nurses. A lifeline, literally, for some patients, this visit from a familiar face is now likely to last no more than half an hour, and in many cases is no longer weekly but once every two or three weeks. Some clients have been known to wait nine months for a replacement if their community psychiatric nurse moves on. "People are being decoupled from the one professional person they can trust and to whom their 'narrative' is known," says Wallace.

All this has not been helped by the closure of day centres that used to provide structure, community and occupation. Or by the fact that day hospitals offering transitional support between hospital and community are under threat. Nor can patients or families turn to the family doctor, who no longer provides care out of hours or at weekends - when people with mental illness are most likely to reach crisis point. This means they have nowhere to go but A&E departments, where specialist mental-health support can be scarce. As one mother caring for a young man with drug-induced schizophrenia says, "Who is the solution to the crisis when my son is holding a knife to my throat? I am."

Sane responds to an average of 1,000 callers a week on its crisis line, providing follow-up support to many more through its unique telephone outreach service. "We are picking up the pieces from a fractured system that can no longer provide the basic support people could expect to receive," says Wallace.

So why are things going so wrong? According to Wallace and other experts, the confusions in mental-health policy reflect the fact that society has never really come to terms with mental illness. "The field is riddled with paradoxes and polarisations. The 'medical model' of mental illness is at odds with the 'social model'; and they lead to very different agendas. As long as the mental-health experts cannot themselves decide how mental illness should be understood - whether or not it is a medical condition or a label imposed by society - how can we expect the government to make policies that are coherent and representative?" The current mental-health bill, so long and so controversial in preparation, reflects these confusions and disagreements in the mental-health community, between psychiatrists, civil libertarians and social workers.

In most other medical conditions, such as cancer and diabetes, Wallace says, everyone is working to the same agenda. The patient knows he is ill and wants the most effective and up-to-date treatment. So do families and professionals. Everyone has one goal: that a sick patient recovers. With mental illness, that is not always the case. Self-styled "survivors" of the psychiatric system say that it is not an illness but social discrimination. And then there is the catch-22: the more ill a person is, the less insight they may have to acknowledge it. They may see treatment as unnecessary or, at worst, punitive, and they might understandably refuse anti-psychotic drugs. And their families might get little help from professionals, who have to protect their patients' confidentiality and best interests.

In reality, people cannot choose to see a psychiatrist, to be admitted to a unit or placed in housing of their choice unless they have enough money or insurance to pay for private care. So disasters happen, great and small, noisy and silent.

Talking of these issues, Wallace begins to look drained. She has other anxieties - about her very ill companion and her frenetic round of TV studios and meetings. "A lot of suicides could be prevented - maybe as many as several hundred a year. It's just people not being available, not doing or saying the right thing at the right time. Most people really don't want to kill themselves, and at least some of these can be helped. And with the rare homicides, we believe that one in three is avoidable; we did an analysis of 69 inquiries, and the government now accepts that some are preventable."

There are, she argues, simple things that can be done. It is known that the most critical period for people at risk of committing suicide is the 48 hours after they've been discharged from hospital. Yet official guidelines recommend contact in up to seven days, which is sometimes too late. Sane can offer this contact to some through its telephone outreach workers on Saneline. But there seems to be no way for imaginative services like these to reach the majority of people because central funding mechanisms are overburdened.

What is really needed, she says, is more humanity and personal attention, less bureaucracy and politically correct judgment and jargon. That means a person who will listen, who will be there the next time, and the next, for patients and their families, in crisis times and beyond. The resource that matters the most is people.

More meaningful activity, if not employment, would make a great difference, as would more structure in a sick person's day (daycare centres, projects). More flexible benefits would help too. Finally, there should be more of a public determination that people on the edge are not allowed to fall over it.

During one of our conversations, Wallace took a call from Lorna Lake, the wife of Paul, who had taken his life after an agonising struggle with depression. Paul went missing for three months, and Lorna was ringing to say his body had just been found. They had begged for him to be visited by the crisis team or admitted to hospital, but he'd merely received a message on an answering machine. When he walked out that day, he said: "If I could go back to hospital [meaning Brookwood, demolished a few years ago], I would not have to do what I'm going to do." Marjorie Wallace is patently upset.

It is this kind of story that drives her to work ceaselessly, day and night. She doesn't rest, she doesn't exercise, she finds it hard to relax. Even when she had cancer in 1994, when her hair fell out owing to the aggressive chemotherapy, she could not stop working, writing and staying in touch with people

Recently, after a business lunch in Notting Hill, she went shopping, for a dress for a fundraising gala at which she is a key speaker; she seemed astonished to have some free time. "I feel as if I were on day release," she jokes. Then her mind races onwards, to Rory Bremner and Joanna Lumley, who are hosting the gala. Then she's off to the House of Commons and later to a TV studio: mixing with the rich and famous and exploiting her own reputation is a duty in her world, but she finds it fun too.

She recalls singing one of her favourite sentimental Victorian ballads at a party in Budapest, to raise £50,000 in a dare; it is a welcome contrast to the hospital waiting rooms and the anguished cries for help that often make up her days.

All this has been a strain on her family and her own health. When her campaigning started she had three young sons and a baby daughter. One of her sons had considerable medical problems. Now her companion of more than 20 years has Parkinson's disease, and Wallace, in remission from cancer, is too busy to bother much about checkups. But she defends her determination to be available round the clock: "The day I and Sane are not on the front line in the living rooms of distressed families, or on the acute wards, is the day that I should leave."

She is mildly optimistic about a recent government document entitled Commissioning a Brighter Future, a programme to make psychological therapies accessible through trained cohorts of cognitive-behavioural therapists. Callers to Saneline have been crying out for these therapies for years. Wallace hopes it will not go the way of so many other aspirational policies.

Some might call this a triumph of hope over experience, but Wallace is a romantic visionary still. For all the obvious weariness of the long-distance campaigner, she cannot give up fighting for those who endure mental pain.