The keeping of stories

When I was a doctor I was a keeper of stories- and I don’t mean just the person who entered those stories into casenotes. As Danielle Ofri says in her memoir of life at Bellevue Hospital in New York, Singular IntimaciesI often felt the weight of balancing so many patients’ stories within me. I remembered what people told me, the expressions on their faces, their pain and anguish, the events of their lives, and the impact that what had happened to them not only had on the person telling their story to me- but how it affected me- the listener.

From the general practitioners, psychologists and psychiatrists who have seen me through episodes of depression to the nephrologist I visit every year for my kidney disease there are a small number of people who know my story of ill health. I used to be able to count the ones who have been important on one hand but as I grow older it now takes two. There aren’t very many because most saw me for many years, through periods when I was very unwell, and much less frequently, in times of good health too. We knew each other. It was such a relief that I didn’t have to repeat my story each time we met. When my mood deteriorated, they remembered how I could be, what I had achieved in my life, and helped me to distinguish the person that I might really become from the one beaten down by the overwhelming impact of depression and anxiety. Over time, I was able to develop sufficient trust in each one to allow them to help me. I believed that they cared what happened to me, and the hope that they held for me each time I became unwell acted as a lantern to light the way on the road to recovery. They have been the keepers of my story.

Seeing the same health professional over time, something we call relational continuity of care, really matters. It is particularly important in primary care, where person-focused rather than disease focused care is far preferable for people with multimorbidity- older people like me with sometimes several different conditions. A recent systematic review led by Professor Sir Denis Pereira Gray, a veteran advocate of continuity of care who consulted in the same house as both his father and grandfather, has shown that it saves lives. Being able to see the same doctor really is a matter of life and death. Yet our policymakers have prioritised fast access over continuity so that it can now be increasingly difficult to see the same GP.

Continuity is also crucial in mental health care. When, at the recent Royal College of Psychiatrists International Congress, a mother told an audience the story of how her teenaged son had seen nine difference consultant psychiatrists in one year, many of us were shocked. How could such fragmentation of care have been allowed to come about in our mental health care system? How could the impact be anything less than highly detrimental? Yet it is clear from the reaction of so many people with whom I’ve discussed this in the last month that this story is so far from unusual. Nevertheless there is evidence that continuity of care is associated with better quality of life for people with severe mental illness. Another more recent study that compared mental health care systems based on continuity or specialisation pointed towards reduced length and number of hospitalisations, and faster or more flexible transitions between services in continuity systems. And both patients and staff (unsurprisingly) preferred continuity models.

This is not however to say that the old ‘sectorised’ model of the past, with one consultant overseeing a community, was without problems. Sectors were often too large, with one consultant perpetually overstretched, and there was limited opportunity for choice when the relationship between doctor and patient broke down, or a sector consultant had particularly strong views about certain diagnoses, or treatments. When I arrived to take up my first consultant post in general adult psychiatry, I found to my horror a ‘blacklist’ of patients my predecessor had refused to see or admit to his unit- most of whom I eventually managed to engage and help. I saw many for second opinions from within and even outside our organisation. The NHS was more flexible then and extensive paperwork was not required. Later, working side by side with a colleague across one sector, we were able to provide our population with more choice, and between us a range of different expertise and interests.

Now service users and patients are shuttled from one functional team to another – from community to crisis team, to in-patients, to recovery, back to their GP and then back again around the circle- each with a different consultant. Add to that the problems with staff retention in both mental health and primary care and the savage cuts to services and I fear we may have a generation of doctors who no longer know both the pleasure, and responsibility, of the keeping of stories. Instead they have become, like those who saw me in hospital last year, the anonymous faces who struggle to piece enough information together to get through the day safely, relying even more on patients, if they are able, to fill in the necessary gaps. We seem to have forgotten that it is the power of the relationships that are forged between us – professionals and patients- that matter, not the number of ‘contacts’ we have notched up; and these sustain not only our quality of life- but life itself. For me as a doctor it was the power of those stories and my ability over time to make a difference in how they ended that fulfilled me, and sometimes prevented me from moving on even when other things in a job were getting difficult. How much is lack of continuity, and the increasing sense of anomie accompanying it, not only caused by failure to retain staff, but fuelling it?

And, most of all, we patients feel increasingly unsafe  too.

Anonymous, anxious and wary as we wonder: Who is the keeper of my story now?

A life in the NHS

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.’

The friends and family test

Not long ago the NHS introduced a patient feedback test asking people if they would recommend a service to their friends and family. I may have missed it, but I would have thought we should really be asking staff too if they would suggest that their friends or loved ones might want to use the mental health service in which they work? Would they be satisfied enough with the quality of care?

Supporting colleagues who are themselves suffering from mental health problems or have family members in need of help is always eye-opening. In some places it’s really hard to get through the barriers to care and access the kind specialist advice and help a person would really benefit from. I’ve been lucky in that, despite not being psychotic or actively suicidal (colleagues may disagree about the psychotic, I get fairly paranoid when I am really down) I’ve generally managed to get therapy when I’ve needed it. I have good GP care. I went privately for cognitive-behavioural therapy not only because of the impossible wait where I live, but because I wanted to see someone who knew something about depressive rumination.  Even then, having helped me a great deal, he generously refused to accept payment from a fellow professional. I know most people are not quite as lucky as I have been.

Getting access to mental health care these days seems to depend on whether you want to kill yourself imminently or if you are hearing voices telling you to kill someone else. My colleagues in psychiatry get annoyed with me when I say you only need to ask these two questions now in the mental state assessment, but how easy is it really to see someone who can provide specialist advice on a serious mood disorder before you are at the end of your tether? Waiting list for psychological therapies are long, and they often don’t have parallel advice available to them for reviewing the often complicated medications that people are on and may have been taking for years. NICE guidelines say both should be available in severe depression, yet if you are under the care of the community mental health team (CMHT) some psychological therapies services will not see you until you are discharged from the care of the CMHT. I’ve heard this several times now. Why is this allowed to go on? It is contrary to national guidance. If it were happening for serious physical illness it would be a subject of a Radio 4 report. If people cannot access care when they are in the early stages of relapse, it is hardly surprising that they reach the point where detention sometimes seems to be the only option to those trying to care for them.

Do people who get depressed who work in mental health care have the same problem getting help? What do they think when they are told bluntly don’t ‘you don’t meet our referral criteria’ and get sent back to a GP who is asking for expert advice because he or she doesn’t know what else to do? Do they demand access and get it? Are they as lucky as I have been, because I think I have been fortunate to access skilled and high quality care.  I know it can be done if there is a will.

I’ve pretty much worked in the community the last few years, but I’ve visited a lot of mental health units to talk to people about taking part in research. You only have to walk into a cancer unit, as I did not so many months ago to visit a friend, to be shocked at the gross disparity between the physical environments that people with mental health problems, and those who work with them, have to tolerate when compared with those who have physical illness.  I know the entrance hallway isn’t always what the hospital is actually like inside, and the care provided in acute units has not escaped criticism either. We have the Francis Report after all.  Nevertheless I cannot help feeling that the state of our shrinking, poorly staffed, ill-resourced and physically unappealing mental health units, separated as they were from physical health care a decade ago in the new Mental Health Trusts, are a sign of where our priorities lie as a society. I cannot imagine recommending that a member of my family should be treated in one now, although I have at other times in the past.

I’d be fascinated to hear from anyone who works in mental healthcare who would be perfectly happy for friends or family with severe mental illness to be (hypothetically at least) treated in their own service. Take the test.