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?

6 thoughts on “The keeping of stories

  1. Linda says:

    This has been my experience as a former health professional, user of services and more recently trying to set up social care for my Mum. You phrase it beautifully Linda – we all need a trusted set of people to keep our stories and that support is crucial to maintaining wellness. This really resonated with me – thank you for sharing.

  2. JudyB says:

    So true. Recent experience as a carer with hospital admissions probably about a dozen psychiatrists in 18 months.

  3. Laurie van Niekerk says:

    So true Linda- we have an enormous responsibility that comes with the privilege of being a psychiatrist. Working with young people, unfortunately the story you heard of a yp seeing several psychiatrists is a reality – too many reasons for this state of affairs to get into here.

  4. Jane says:

    Having been turned away from community mh services because although I was “obviously seriously depressed” I also had the remnants of an eating disorder I was tossed to the community eating disorders service, run by a totally different Trust. At the assessment when it came to any questions I had I wanted to know how they were commissioned and how long the contract was for – working in the NHS i knew the risks of funding disappearing and patients falling through the gap. As it was, it was irrelevant, they were seemingly shocked by the drop in my mood once therapy started and advised that perhaps this wasn’t the right time to do this, not trusting my assurances that I’d been 100 times worse and it wasn’t time to panic. If they had access to one or two of the people who I had previously had trusted with my story then I think I’d be receiving help now. Madness. Oh and if I had £10 for every time I’ve been told through the years that the reason I was “failing to respond” to whatever drugs or therapy I was partaking in was that I was too pessimistic about the likelihood of it helping I could probably fund private help. No one seems to grasp that if I were optimistic and hopeful I wouldn’t be needing anti-depressants in the first place!
    Sadly those professionals with compassion are leaving the service, taking early retirement, choosing a different career and/or becoming ill themselves and whilst money isn’t going to solve everything I can’t see anything changing without some serious investment.Thankfully public attitiude is changing, and people are speaking out so lets hope the money follows, preferably in my lifetime.

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