Institutions – Patching the Soul

I arrived in this world seven years after the birth of the National Health Service. My life has been framed by it. I was born in a cottage hospital and regularly weighed by the nurse at the district clinic. As I grew I was taken to the General Practitioner who for many years had a surgery attached to the side of his home. I don’t remember much about those visits other than on one occasion my mother took me along expecting the GP to advise her (and me) what should be a reasonable bedtime. I know she was disappointed by his response.
‘She’ll sleep when she’s tired.’
An American psychiatrist I met many years later suggested I may have had ‘Oppositional Defiant Disorder.’ I remember retorting, ‘No I’ve just always been difficult.’ My mother certainly seemed to think so anyway.
When I left school, I studied medicine, and qualified as a doctor and then as a psychiatrist, working in the NHS in Scotland and the North of England for over 30 years. I was, and still am, proud to have been part of the massive social experiment that began the day Aneurin Bevan was symbolically handed a large bunch of keys by the matron of Park Hospital in Davyhulme.

I’ve seen firsthand what life is like in a country where the market governs healthcare. Several years ago I spent a few months studying the American health system as a Harkness Fellow in healthcare policy. A few memories from my time travelling between clinics in Washington State remain with me, indelibly burned into my memory.

• The young woman with poorly controlled asthma stifling her tears because she had to say goodbye to her doctor even though she was not moving away from town. She had changed jobs and her new employers’ insurance system contracted with a different ‘provider’.

• The middle-aged man on the telephone in the waiting room pleading with his friend down the line. ‘Can you lend me some money…I can’t afford to pay for my insulin.’

• The young man in paint splashed overalls who lay flat on the front seat of the bus writhing in agony, getting himself to the Emergency Room by public transport; probably to avoid having to pay for an ambulance he could not afford.

• The general practitioner who told me how she struggled to help a young woman in her clinic who was acutely psychotic. Her basic state medical insurance didn’t cover specialist mental health care, so the visiting psychiatrist, who was in the next office, was unwilling to either see her or advise.

• The nephrologist who specialized in treating African Americans in a southern state with a high prevalence of diabetic renal disease who told me that he could personally ensure his low income patients without health insurance got the care they needed through his academic interest in them, but others would not. He seemed curiously accepting of the status quo. ‘That’s how it is here.’

Don’t get me wrong. The NHS is a complex many-headed beast, fraught with problems. I have not only benefited from it, but I have suffered from it, and seen others do so too. I have struggled with and been bullied by bureaucratic and hostile management and survived an attempt to remove me with some serious consequences for my mental health. I’ve also known visionary managers some of whom became friends. But I’ve also seen the NHS try and fail to entirely abolish traces of the mentality of the huge county asylums it inherited in 1948. I’ve worked with many extraordinarily compassionate and caring practitioners, yet I still hear service users relate examples of attitudes and behaviour towards them, which are all too familiar from my early days as a consultant in a decaying mental hospital.

The gap between physical and mental healthcare, which was wide even when the new district general hospital psychiatric units were attached to the rest of the hospital by long corridors, grew to a chasm with the separation into acute and mental healthcare trusts. Despite evidence that investment in mental health care might have significant impact on the spiraling costs of physical healthcare, the concept of ‘parity’ still seems something to which little more than lip service is paid. Mental health care has been cut by a greater percentage in funding than any other area. And now, with the decline in numbers of GPs and funding of primary care, where 90% of mental health care is provided, we should not be surprised that it is harder than ever for people to get the help they need when they are in acute distress.

Throughout my adult life I’ve been in receipt of mental health care, most of it provided by NHS staff, who went the extra mile even though I wasn’t always easy to help. I’m still and always have been contrary. No one ever suggested it wasn’t in his or her contract to treat me but the goodwill that used to ensure mental health professionals didn’t have to receive treatment in the places where they work has largely disappeared. Rules reminiscent of what I encountered in my times in the USA are becoming increasingly used to determine who gets help.
‘We’re not commissioned to provide care for people with (you name it- Aspergers, Autism, Personality Disorder, Analgaesic abuse….the list grows).’

And now I’m getting older, and I have recently been diagnosed with kidney disease, I know there is a very real possibility I will one day be as dependent (a sorely unfashionable word I know) on the NHS as the day I was born, only this time for dialysis. I’m worried about whether the NHS will exist when I really need it to save my life, or whether I will struggle, as the patients I saw in the USA, to obtain care from an uncaring system.

Last time I visited Park Hospital, now known as Trafford General Hospital, the black and white pictures of the great day the NHS was founded were still on the walls of a corridor in an old part of the building, but clearly forgotten and sorely neglected. Their state seemed to me to represent the ways in which successive governments have tried to forget, suppress or actively derail Bevan’s extraordinary achievement. For all of our sakes let us not sleep walk compliantly into a future when it will suddenly not be there for any of us to depend upon.

In order to do this we must never stop being ‘difficult’. I prefer to call it ‘creatively contrary.’

You don’t have to dig very far into the history of most families to find someone who spent some time in an asylum. More than one person in my own family has ended up in the building ‘round the bend’ in the road, out of sight. A story was told about my Scottish great uncle who stayed on voluntarily as a gardener in hospital for the rest of his life which was, I guess, the family way of lessening the stigma of having a husband and father who went into the asylum and never came out. A much closer relative spent many months in a crumbling monolith in Lincolnshire in the seventies. When I went to see him, everyone in the train carriage would watch as I got off the train in the middle of nowhere. There was only one possible destination: a place which carried the taint of madness. And then there was my father. Although there were times in his life when his mood was very bleak, he wasn’t admitted as a patient; he would never have dreamt of even seeking help. But he spent a period in his youth working contentedly on the farm at the Towers Hospital in Leicester alongside those inmates who were well enough to be let outside into the extensive grounds, to milk the cows, collect the hens’ eggs and care for animals. Unlike my uncle, I think he really was just working as a farmer.

So it’s been interesting in the last week to reflect on the nature of asylum and the associated stigma following the response to the new book by Barbara Taylor The Last Asylum describing her periods in Friern Hospital, which is now luxury apartments and the acclaim for ex- mental health nurse Nathan Filer winning the Costa book award with his novel The Shock of the Fall. I was extraordinarily moved by the article Nathan Filer wrote for the Guardian this week on the state of current in-patient care, Mental health care- where did it all go so wrong. He describes the experience of his best friend Bryon Vincent who was admitted to the place where Nathan himself had worked some years before, after attempting suicide. What is experienced by Byron as the patient, and Nathan as his friend and visitor, is a ‘care’ system which is in a ‘God-awful mess’. Unlike Barbara Taylor’s book, this is not an account from the past; an historic description of the last days of a Victorian relic. It’s a much more contemporary description, even though the ward into which Byron was finally admitted was itself due to close because of budget cuts.

As Byron says:

“There was a pervasive air that things were disintegrating, one day I found a member of staff hiding in a bush. Alarms would sound and not be switched off for hours. The ward was more a place of crisis management than one of respite. I really felt for most of the staff, it was obvious they were doing their best under what were clearly incredibly difficult circumstances”

There are times when a person is in such a dark and tormented place that they need a place to be safe, to feel listened to and to be physically cared for. Sometimes they may need this for weeks or months, yet there is constant pressure to reduce the length of stay in psychiatric in-patient beds to little more than a few days. Nathan Filer’s friend Byron describes the pervading atmosphere succinctly: “The modern system seems much more focused on bureaucratic risk avoidance than it is on care.” Mental health workers now spend a great deal of their time trying to find beds for people often many miles from where they live, and where it is almost impossible for family and friends to visit them. I’ve commented before in this blog on the physical state of some in-patient units. With the closure of many of the new wards purpose built in the last decade with exorbitant Private Finance initiative funding, the situation is only going to get worse.

Mental health care in this country is in crisis.

I began to train in psychiatry at a time when the old asylums were beginning to close. I worked in modern though not particularly homely units attached to large general hospitals. They were situated in the community in which they served. Families and friends could visit. Home visits were possible. The aim, which wasn’t nearly achieved, was nevertherless to try and destigmatise ‘mental illness’ by providing care in a different kind of setting from the dark places built out in the fields, and on the same site as people were treated for physical illness. Many of my patients had physical illness too and were treated in the other half of the hospital. People in the acute wards and the maternity hospital benefited from the proximity of mental health expertise.

When as a consultant I found myself with beds in an asylum, at Whittingham Hospital in Lancashire, I was horrified by some of the attitudes of the staff I met whose families had worked there for generations. There had been evidence of cruelty and mismanagement at the hospital in the 1960s and 70s and an inquiry, yet little seemed to have changed. So the asylum era is not a period I hold any romantic notions about. The old asylums not only failed to meet the needs of many of the (excessive) numbers of people who ended up there, but contributed greatly to the fear of mental illness and being ‘put away.’ Many people were subject to abuse and neglect within their walls. Yet now, we seem to be in a period in which, as local units are closed down and what beds remain are centralised, there is a danger of recreating these asylums. Places where you will have to be really mad to get admission to, in which an increasing proportion of people will be most probably detained against their will, and which will once again be a source of fear and great stigma.

If we are really going to combat the stigma of mental illness, one of the things we have to do as a civilised society is put greater value on how we care for people who are too vulnerable to care for themselves and who do not always fit in with society’s prevailing norms. These are the people who may find it difficult to trust you enough to give you ‘Time to Talk,’ because they will be fearful about what your motives are, and whom you will tell; who will need empathy, care, reassurance , financial support, tolerance and sometimes a place where they can simply just be. Much as I understand the motives behind the antistigma campaign that Mind is currently running in England, there are many people out there at the moment who need a lot more than a cup of tea and a chat to help them get by. They need asylum in the other sense of the word. A place offering protection and safety.

So when a colleague told me the intention was to close all the local beds and build a new mental health unit on a ‘greenfield’ site I suggested they might also want to build a farm too. And you know I wasn’t entirely being facetious.