When it's two o'clock in the morning, and you're manic, even the UCLA medical centre has a certain appeal. The hospital-ordinarily a cold clotting of uninteresting buildings-became for me, that fall morning not quite 20 years ago, a focus of my finely wired, exquisitely alert nervous system. With vibrissae twinging, antennae perked, eyes fast-forwarding and fly-faceted, I took in everything around me. I was on the run. Not just on the run but fast and furious on the run, darting back and forth across the hospital parking lot trying to use up a boundless, restless, manic energy. I was running fast, but slowly going mad.
Thus kay jamison, psychologist and manic depressive, describes a psychotic episode in her book An Unquiet Mind. Combining the expertise of the professional with the insight of a patient, she confronted a disease that defies prediction and ruins lives. The book tells us more about mental illness than 20 articles in the British Journal of Psychiatry. "Manic depression," she wrote "is a disease that both kills and gives life. Fire, by its nature, both creates and destroys... Mania is a strange and driving force, a destroyer, a fire in the blood."
You will not find language like this in the 10,000 words of earnest rhetoric that constitute the government's new white paper on reforming the mental health act in England and Wales. Nor indeed will you find any reference to madness. It is the forbidden subject, a black hole around which we circle fearfully, ring-fencing it with phrases like mental illness, mental disorder, mental disability, anything that saves us from the difficulty of exploring the mind of someone who is losing theirs. Instead, the watchword is "protection." There has, say Alan Milburn, the health secretary, and Jack Straw, the home secretary, been a tragic toll of homicides and suicides. The current laws have failed to protect the public; the lives of patients and staff have been put at risk. We must protect the mentally ill from themselves, and from the public; we must protect the public from the mentally ill. In Scotland, an even weightier document has been published, 500 pages reviewing the mental health act as it applies to Scotland. No one can doubt that it is well-intentioned. Its stated principles include non-discrimination, equality and respect. It places patients at the centre of its proposals. It explores the need to change the way mental patients are treated, and for the first time acknowledges the role of relatives and friends-the embattled front line of those who cope every day with the mentally ill.
It will, however, take more than good intentions to reverse the 40 years of failure and neglect that have characterised this country's treatment of its mental patients, the scandal of its prematurely closed hospitals and its under-funded programme of care in the community. If you have spent any time in those wards, where the cigarette ends litter the floor and the smears of angry protest stain the walls, or if you have talked to the damaged souls who inhabit them, and the wary staff whose job it is to monitor their restless progress-you will know what I mean. Even worse is the reality that awaits the inmates when the drugs have run their course, and they are judged well enough to return to the unwelcoming world outside: the schizophrenic boy who sits in his lonely flat watching the television which is speaking to him in strange voices, or the anorexic girl who claws repeatedly at her wrists as she waits for the hospital bed that is no longer available, or the family in despair as they see their manic depressive son spiralling out of control, unable to take action until he commits a crime and the police move in.
Kay Jamison's book ends with her finding the correct level of lithium to hold her life on course, recognising that she would always swing between the "electrifying carnivals of light" and the "black, grey and tired heap" into which she plummeted when they ended. But Jamison had privileges which most of today's mental patients in Britain conspicuously lack. She benefited from her own intelligence and insight; she had the expert care of well-qualified friends and fellow professionals. Life on the NHS is very different.
we spent much of last Christmas in the closed ward of the Royal Edinburgh Hospital where our son was consigned following the onset of a manic episode. He had been involved in a confrontation with a pub bouncer who had called the police. Our son has never been violent, but he is tall and can be intimidating, so from time to time he has attracted the defensive aggression of others. He has suffered from manic depression, or bi-polar affective disorder as it is medically termed, for more than 15 years, after succumbing to it first while he was still at school. Manic depression is a relentless and unforgiving disease. It comes in cycles, but they are unpredictable. The manic phase means that all the processes of brain and body speed up to the point where life becomes like a Ferris wheel at speed, out of control, wildly exhilarating. Most normal constraints fall away, behaviour becomes loud and extreme-the medical jargon calls it "inappropriate"-money is spent like water, sleep is an optional extra. It is followed by a period of dark depression, when any action at all seems impossible for the sufferer to contemplate.
Our son has run the gamut of hospitals, from the privately financed Priory Hospitals to state-run institutions, north and south of the border. Both he and we have learnt much about the illness, the agony of confronting a person who rejects help contemptuously but needs it desperately, the despair when he is out of control, roaring down the street towards who knows what fate awaiting at the end of it. We have known the calls, from him or the police, to tell of some escapade, the requests to come and collect him or to visit him in a cell or a hospital ward. And we have known the joy and relief when gradually, as it always does, the wheel returns him to something like normality. Through this time we have seen every form of treatment, from ECT to cocktails of drugs, delivered in doses so powerful you cannot imagine he could survive them, yet absorbed into his system as if they were aspirin. It is a tribute to him and the strength of his character that he has emerged from this history of medical battering, with his warmth, charm, and independence intact. We are immensely proud of him.
Two things have marked his long and unfinished journey: the handful of doctors and nurses who stood by him through the worst of times, and whose dedication in awful circumstances is humbling. And the steady decline of the health service which should have supported him. His period of illness coincides with one of the most wretched chapters in the history of the NHS. It has seen the closing down of some of Britain's largest mental hospitals-the asylums, or places of safety, of a previous era-and the heavy reduction of available beds. In their place was substituted care in the community. The idea was that the resources tied up in the buildings and their beds would be released to provide a support service for the mentally ill once they were returned to their families and their localities. But the funds were diverted elsewhere, and the back-up was wholly inadequate. Patients, many of them still on heavy medication, were discharged by hospitals which had no means of monitoring their progress. Families, incapable of handling difficult and disruptive relatives, were left to cope on their own. GPs found their lists swollen by cases requiring specialist advice which was over-stretched and often unavailable.
Meanwhile, as medication grew more sophisticated, the need for long-term psychiatric care was judged to be less important, or even unnecessary. Investment in psychotherapy declined, the means of ensuring long-term support for patients once released into the community became stretched or even non-existent. Addressing the annual meeting of the Royal College of Psychiatrists in Belfast in 1998, the distinguished psychiatrist Hugh Freeman concluded: "I will say very little about the developments of the 1990s, except that I regard them as almost wholly disastrous." In his lecture he traced the history of mental health services in this country from the Victorian era, when those forbidding asylums were built as places of safety. Looking back at that period, what is striking is the recognition by philanthropists that the mentally ill had been scandalously treated in the past, and that what they needed most was something to occupy their minds and bodies. Thus many of the hospitals built at the time had extensive gardens and the opportunity to learn a trade. Opening a brand new wing of the Royal Edinburgh Hospital in 1894, costing?141,000-an immense sum for those days-chief physician Sir Thomas Clouston spoke of an historical healing: "Nothing we can do for the comfort of our patients is too much to atone for the cruelty of past ages."
It is hard to determine exactly when the subsequent decline began. Some would say there has always been a reluctance to allow psychiatry to operate under the same terms and conditions as other branches of medicine, and of course many of those old hospitals did become grim places as their physical condition deteriorated. Others say the erosion has been more recent, pointing out that Britain's standards of treatment were once the envy of the world, thanks to an influx of refugee specialists from Europe between the wars. Around the mid-1950s, with the development of more sophisticated drugs, the emphasis on hospital treatment was gradually replaced by a belief that the walls of the old institutions should be pulled down, and the inmates released. The famous 1959 mental health act did not, as Freeman points out, legislate for community care, but it did remove legal barriers to extra-mural treatment, and expressed general approval for a non-institutional approach. "Owing to the opposition of the treasury, however," he says, "local authorities were not given a positive duty to provide community mental health services and they did not receive a specific grant to do so."
It is a pattern that has been woefully repeated ever since. Even today, when the inadequacies of care in the community have been starkly exposed, the resources are still not there. Although grants to local authorities for community mental health care have finally been achieved, their role in the meantime has changed. They have become commissioning agents rather than providers of service. "In the 1990s," said Freeman, "long-term care within the NHS virtually ceased, being largely transferred to private facilities, with social services handling the financial aspects." Spending on mental health services within the NHS actually fell in real terms by 5.4 per cent in the first half of the 1990s, despite being an acknowledged "priority." A fellow psychiatrist described it as "one of the best-kept secrets in the country." By 1996 it was ?3 billion out of a total health budget of ?34 billion, and remains less than 10 per cent.
Although Scotland was fortunate in that it adopted a far more conservative policy than England and Wales, evidence of decline is only too noticeable within its remaining buildings. The ward where my son spent Christmas has changed from a well-furnished, cheerful place into a litter-strewn slum. We were told efforts are underway to improve things-a brand new wing for forensic patients (those once known as "criminal lunatics"), and plans to re-house most of the remaining patients-but at this level a closed ward begins to resemble a prison rather than a place of safety. The locked doors and sealed windows become bars. The staff are seen as warders rather than nurses. There grows, in the regime and attitude, a punitive rather than a therapeutic culture. And whatever the problems of controlling difficult and sometimes violent patients, the distinction between a hospital and a jail should be fundamental. Once that becomes blurred, then the whole basis for therapeutic treatment crumbles.
Last Christmas the staff, so far as we could tell, were still as caring and dedicated as they had ever been, but maintaining morale in such a place was clearly an immense strain. The patients themselves, in their drug-saturated state, seemed hardly to notice. But visiting friends and relatives were appalled. The sheer squalor around them seemed to reflect the rock-bottom state into which their loved ones had plunged, and at the same time symbolised the negligible value that the state placed on them.
Yet this is not a minority issue. The best estimate from the Office for National Statistics is that one in seven adults are affected by significant mental health problems. These can range from anxiety and depression to more severe personality disorders or schizophrenia. Around 230 people out of 1000 will visit their GP at some stage for mental health reasons, of whom 102 will be diagnosed as suffering from some form of mental illness. Of these, 24 will be referred to a specialist psychiatric service and six will become in-patients in psychiatric hospitals. In England and Wales the number of people sectioned under the mental health act rose from 16,300 in 1989 to 26,700 in 1999/2000.
as a columnist on The Times, I thought long and hard before writing about my son's experience following our visit. We owe a huge debt to his doctor and the nursing staff at the Royal Edinburgh Hospital, who have been involved with him for more than a decade. That he has not benefited from long-term care isn't their fault-he himself has usually rejected most therapy, though he is visited by a community psychiatric nurse who administers a monthly injection. Above all, I did not want to prejudice my son's future welfare. But I felt, as any parent would, a surge of anger at what I saw. Why should any patient, mental or otherwise, have to suffer these kinds of surroundings? Moreover, the timing for such an article was appropriate: both health departments north and south of the border were issuing reports on reforming the mental health act of 1984. My article appeared just after Christmas. What I had not anticipated was the huge and passionate response from readers.
Watching the onset of the process that Kay Jamison calls "running fast but slowly going mad" is agonising. Not for the sufferer, but for the onlooker. It is like seeing a car heading for certain collision. You know it is going to end in disaster, but you cannot intervene. It begins with behaviour which is merely excitable-fast talking, loud conversation, impatience with the slow and boring pace of the rest of humanity. Grandiose plans must be made, meetings set up, rendezvous made and broken. Then as the attention span diminishes, tolerance disappears, to be replaced by fury. It is at this stage that relatives long to take action. Now, if only they could persuade their son or daughter to check into hospital, something might be done. But this is the last thing on the mind of the manic depressive. Any "insight" that he may have acquired into his illness, recedes. The last thing he wants to contemplate is the empty routine of life on the ward. Doctors have no powers to intervene. You can alert the hospital and tip off the police, but if the patient is over 21, his or her rights are protected.
Almost inevitably, behaviour like this, late at night in a pub, or on the street, leads to trouble. It can be challenging, aggressive, "in your face." At some stage, it may tumble over the edge, to the point where the police become involved. Oddly, the midnight call from the station sergeant comes as a relief. The hospital will be alerted, the patient delivered into safe hands. In order to be held, however, an application has to be made for him to be "sectioned" under the mental health act. The act, framed in 1983, was drawn up largely to protect the civil rights of the mentally ill-although to many it did not look like that. Its powers of compulsion are highly controversial because it means the removal of someone's personal freedom. The very term "to section" sounds vaguely sinister, almost as if it involves a surgical operation. In fact it is a reference to the section of the act which lays down precisely the terms under which the patient can be detained in hospital, and the carefully enshrined grounds for appeal which can be put to a court if he wishes to contest it. It is a lawyer's act, not a psychiatrist's. Sectioning, which can remain in force for up to six months, has been attacked as a heavy-handed and intrusive instrument. But to the families who have to deal with the reality of mental illness, it is very often a lifeline. It represents the means by which at last the hospital is given powers to detain, and the treatment can begin.
The period that follows, for patients suffering from bi-polar disorders or other psychotic illnesses, is likely to be lengthy, traumatic and hugely demanding. Medication, however effective, takes time to work. To begin with you are dealing with a patient who is angry and bitterly resentful, who sees his surroundings as punishment, his hospital ward as a prison, and nursing staff as unreasonable warders. The target for his rage is likely to be the next visitor, or the next doctor. Parents and relatives find themselves at the receiving end, for they are the betrayers-they have connived with the authorities. The patient can see no reason for his continued incarceration. Everything seems to be conspiring against his release. The key to managing his condition at this stage is the proper "cocktail" of anti-psychotic drugs, but sometimes even they may be ineffective, and ECT can be the only solution. That too has sinister overtones, but, in extremis, it can be a lifesaver. As too is that most common of drugs, the cigarette. In the wards of mental hospitals, smoking is omnipresent, and no one protests. Without tobacco it would be hard to imagine some of those inmates, at the end of their tether, surviving at all. What they need, and all too often lack, is visitors, links with the outside world, a path they can recognise back to normality.
These points emerged time and again in the letters that poured in, by e-mail and post, following my Times article. They told stories of isolation and abandonment, of a failure to find help when it was needed most, of indifference, neglect and insensitivity:
Although we can tell when our son is becoming hypomanic, there is nothing in the system that allows us to arrange for him to be treated until it is too late. We have no parental rights because he is an adult. As he lives alone there is no one else to care. The police and the health service refuse to deal with him and he will not attend as a voluntary patient when at that stage.
My son, now 21, has also been slowly going under with mental illness and I have been trying to get proper treatment for him on the NHS for six years-since his then GP told him to go and play more football. Last New Year's Day we spent nearly two days with him in intensive care after an overdose nearly killed him. A day later a psychiatrist talked to him (still groggy) for ten minutes then discharged him. I have no idea how many times I have spent hours with him in casualty waiting for someone from the psych to see him and refuse him any help.
The potential fall-out from my son's illness lies well beyond himself and threatens to affect various family members in various ways. There seems to be a considerable contrast between (a) the attention and treatment my son receives while in a (very) secure ward and (b) the follow-up care when he is released. A consultant currently treating him admitted to me that the system had failed my son in terms of follow-up care, the result being that he is back in the secure ward, much iller and for a longer stint than before. When I raised this with the local mental health trust, they pointed out to me that only the patient has the legal right to question his treatment.
Where I disagree with you is on staff standards, which I feel have deteriorated along with the surroundings. At the Maudsley Hospital psychiatrists are rotated every six to 12 months so there is little continuity for patient or family.
There were many other letters along similar lines. One American psychiatrist, working in Britain, with whom I have corresponded at greater length, points to the stark contrast between conditions here and in the US: "Most NHS wards would be shut down in the US," he wrote. "There are a number of fine new units around Britain. For example, the acute service at Farnborough Hospital. But I believe over 400, possibly 450, consultant posts in psychiatry go unfilled. NHS consultants are stretched beyond tolerance and as a result often know their patients very little, making infrequent contacts. Care is left to junior doctors, also stretched. Unconscionable compromises are made in discharging patients to the community. Especially in London, aftercare is more a concept than a reality."
He believes that in British psychiatry there is a strong biological bias which compromises the psychological input to patient care. "Psychiatry is the bastard cousin of medicine, I am afraid. Consequently fiscal support becomes an issue only when a tragedy occurs. Then it is cosmetic and short lived."
There are two overwhelming complaints registered by families and observers. First, poor ward conditions where they are needed most. Second, the low priority placed on long-term care, which must include families and friends. Both issues have at least been recognised in the two reports referred to. Susan Deacon, the Scottish health minister, has said: "Nowhere are modern, dignified surroundings more important in the NHS than where patients with mental health problems are concerned. Sadly, thanks to years of neglect, too many of our mental health facilities are not up to the job."
At the same time both reports recognise belatedly the role of outside carers, and the need to build better contacts with them. Many GPs who deal with the mentally ill now use the services of counsellors, and there has been an expansion in what is known as "assertive outreach teams" whose aim is to close the gap between hospital and the community, to provide the support and treatment that is needed long after the patient has been discharged. It has finally been recognised that the "revolving door" scenario, whereby patients have to be regularly readmitted to hospital because they have deteriorated once outside, is not only heartless, it is inefficient and expensive. One can only hope that those who serve, either as counsellors or on outreach teams, are given proper training and the funding and back-up that have been lacking hitherto. There is still, however, a shortfall in the number of psychiatric consultants, and until this branch of medicine is properly recognised and rewarded, it is hard to see how that can be reversed.
Why has the decline in Britain's mental service been so marked? Some commentators date it back to the 1960s and the revolt against traditional psychiatry led by RD Laing and others. The denigration the profession suffered fed through into sociology and social work, ushering in an era of hostility between psychiatrists and health workers, some of whom did not even accept the reality of mental illness. Meanwhile medication emerged as the dominant treatment for serious cases, so interest shifted away from the human experience taking place behind disturbed eyes. The result was a move towards containment rather than care. The principle of long-term support for the mentally ill faded to insignificance.
And just as comprehension of madness was fading, so politics was moving into its long cycle of public spending constraint-the savings from long-term care were most welcome to the politicians of the day. But this is also the story of a decline in liberal values, both in the culture generally, and more particularly among politicians who increasingly emphasise the need to protect the public rather than care for the disordered mind. Even now the discussions, both north and south of the border, place far more emphasis on the issue of "compulsion"-the use of legal powers to commit patients to hospital against their will-than to the underlying causes that lead to a crisis in the first place. A handful of cases in which mentally ill people have attacked or murdered members of the public has dominated headlines and the minds of ministers to the point where this is seen as the most urgent problem to be addressed. Not only are the statistics negligible, the solution is far more complex and expensive than the easy option of simply locking up more patients. The organisation Mind, which campaigns for the mentally ill, points out that many "outreach programmes are strongly opposed to the use of coercive powers."
One can read page after page of well-intentioned prose in both the Scottish and the English reports without encountering that flash of compassion and commitment which goes beyond the precise requirements of the law and announces forthrightly: "What we see here is a scandal. It has been hidden for too long. We are determined to end it."
It is now 15 years since The Times devoted the whole of its leader column to a memorable indictment of Britain's mental health service. Its final paragraph ran: "It ought not to be beyond the capabilities of British society to recognise the different needs of those who need to make only one return trip through the revolving door, those who make many return trips, and those for whom the journey is one way for ever. Without such a recognition, today's tragedy of mental illness will become tomorrow's public scandal."
Tomorrow has come and gone. At least there is now a recognition of the failure of past decades. The words, the good intentions, the worthy investigations have been delivered-again. But Britain cannot claim to be a civilised society so long as it turns its back on those who are slowly going mad.
