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?

The morals of Mindfulness

‘I don’t know what it is exactly- no one does- but even my GP tells me I’d benefit from it.’ (The Spectator 17/7/2017)

If you mention  you are seeking help for depression its odds-on somebody will mention mindfulness. It has reached a point where it feels like the thing those of us with anxiety and depression should be doing- the self-evidently right thing to do to get ourselves ‘mentally fit’ (whatever that means), booking in to do a few exercises in the mind gym.

Last week I tweeted:

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The responses were interesting. Several who felt the same way. A couple suggesting I might approach it in a different way (I’m not going to say that they thought I was doing it wrong, because that would be unkind) and one entrepreneur trying to sell me his latest product.

I’ve been interested in meditation for many years. I don’t want this to sound facetious- but I fear it will- I have often thought that I would like to learn more about Buddhism- if it didn’t require so much effort. One of the most fascinating days of my life was spent in a Zen monastery in Japan. There have been times when I’ve meditated every day, and others when I’ve not. Since retirement I have started again- a little more regularly. I’ve found it helps me to feel more centred and calm. Wanting to learn more about Mindfulness, and having benefited somewhat from learning in the past some ways to cope with ruminations using techniques based on it, I started doing a recommended on-line course. My itinerant lifestyle precludes attending a weekly group, although I think this might have been much better.

At first it was helpful, but then my mood began to dip- related to uncertainties in the world- and the guided mindfulness exercises seemed to make things worse.  The ‘thought clouds’ burst and rained their contents down on me. Being asked to think about the painful things in my life with compassion for myself reduced me to tears, while having to think compassionately about others evoked anger. Haven’t I spent most of my life worrying about everyone else? Isn’t that the problem? I found myself saying. I can’t take this. It was no good. I had to stop.

I have heard of professionals telling clients that Mindfulness will put drug companies out of business. This kind of ridiculous promotion goes on in more muted forms across the media- some of it from researchers who should know better. What we can say is:

  • People respond differently to Mindfulness. We know there are potential adverse effects. Recalling traumatic events, increasing your level of anxiety or depression, depersonalization and even psychosis.
  • Mindfulness is suggested to people who are in the throes of depression (never mind full blown crisis)- but the evidence for its effectiveness during a current episode isn’t great– and there is none at all for Mindfulness Based Stress Reduction (MBSR- trademarked by Jon Kabat-Zinn). Mindfulness Based Cognitive Therapy has been shown to prevent recurrence when you’ve had 3 or more episodes and to be as effective as drugs for preventing relapse of depression (reported as ‘Mindfulness is as effective as drugs for treating depression.’) that’s what NICE recommends it for.

There are good reasons why it might not work when you are very depressed. You are preoccupied with anxiety, worries and ruminations. You start to focus on the very things that make you feel worse- your negative thoughts (even though you are only supposed to ‘be aware’- try telling me that when I’m not in control of my thoughts- I find it hard to even pay attention). And anyway you have to motivate yourself to get going.

The other moral objection to mindfulness comes from those who see the promotion of ‘McMindfulness’ as contrary to the values with which meditation is associated in Buddhism. It has become:

  • A personal path to ‘self-fulfillment’ removed from the intention of promoting compassion for others as well as yourself.

And/or

  • A corporate tool with for helping employees work more efficiently- with greater ‘resilience’ in toxic environments- thus putting the burden of responsibility back onto the individual to learn how to cope. I took pills for many years to do that- but it was my choice to- It wasn’t suggested to me by the boss.

Neither seem to be in harmony with the ethics and morals of Buddhist belief.

Indeed the moral imperative to ‘improve yourself’ by practicing mindfulness has something of the Protestant work ethic about it-  I’m only too familiar with that.

We must dust some of the celebrity stardust off Mindfulness and see it for what it is. Another useful tool that will help some but not others. Those of us attracted to meditation will find it helpful- but not when we are acutely depressed. I’m meditating again now- and finding it helpful. I know I have work to do on why ‘self-compassion’ is so hard but I can recognise that,  and I find reading Paul Gilbert’ books on compassion and mindfulness helpful. Others using self-help materials without support might find it much more distressing. Its one of the reasons we need to be alert as to how such tools as mindfulness are being disseminated in the community- and by whom.

We ought not to  promote a therapeutic milieu where people feel they ‘must’ learn to meditate or are told ‘it doesn’t work for you because you aren’t doing it right’ or ‘do this- its better than pills’.

Please.

I don’t want your sympathy

Please don’t be offended, but when I’m not feeling well I don’t want your sympathy.

I know that I get depressed. But when someone is being sympathetic towards me it does feel rather like he or she is really thinking more about what they would feel like if this awful thing happened to them too. People can sometimes be really very kind to me when they are feeling sympathetic, and I appreciate that. I can see they do want me to feel better. But that warm feeling only lasts as long as I don’t do something to upset them- like shout at them or start arguing and tell them to go away. They can lose all sympathy for me then, because they really can’t feel very positive about the new angry version of me- and you need to feel ‘good’ about a person to have that warm glow of sympathy for them.

But when I lash out at others that is me too. That is how I can be when my mood gets low. I am irritable. I can remember a couple of times when I’ve seen pity in the faces of people around me. I’ve made them feel uncomfortable and embarrassed. But I don’t want your pity either thanks. Sometimes that has come with the implicit suggestion that I should be able to control myself better, even though I don’t think I can at the time.

What I want is for you to be curious about my life and who I am. To make a connection with me by trying to imagine exactly what it feels like to be me, in the situation in which I find myself. To be empathic. You don’t have to like me to feel empathy for me- you simply have to try and understand how and why I feel and behave the way that I do. To do that you have to have a conversation with me. When a health professional talks to me as though I am a real person we both experience something more meaningful. We meet as human beings- what Martin Buber called the I-Thou interaction. But the way that mental health services operate now, it sometimes feels impossible for anyone to get to know anyone else very well. You might be constantly being assessed as to your suitability for a service and be shuttled through many places for which you don’t seem to be ‘quite right’. No connection is made because it will only be broken again- the professionals retain their detachment. You become an ‘it’ to be processed in the system rather than a person, and you don’t feel helped either.

Some mental health professionals must, I am sure, think this is a better way of working because it feels safe and organized. But ultimately it is damaging and dehumanizing to everyone, both you and them. Sometimes they say they cannot help because you are not yet severely unwell enough- other times because you are simply too hard for them to cope with. Once again, they offer you their pity but nothing else.

Compassion has become a bit of a buzz word in the last couple of years, but I fear it is at risk of becoming commodified like so many other important qualities of health care. When you have compassion for someone you ‘suffer with’ them and you have a desire to relieve their suffering and help them. Personally I think its hard to have true compassion for someone unless you have time to get to know who they are and what their problems are- to have an ‘I-Thou’ rather than an ‘I-It’ encounter with them. There are few truly altruistic people who are universally good and willing to spend their lives helping everyone, regardless of what they know about them. The philosopher David Hume wrote that as humans we are characterized at best by limited generosity; especially on a Friday afternoon at 4.30.

So I fear unless you can truly make an empathic connection with a person rather than simply feel sympathy for them, the extent of your compassion will be limited. It will disappear as soon as they disappoint you. I’ve seen this happen to so many people with ‘troublesome’ behaviour with whom caring professionals have not made that important attempt to understand a life from a different perspective than their own. I have felt it from colleagues when my own behaviour was no longer within ‘acceptable’ limits for ‘depression’.

I think mental health professionals must take time to reflect on what motivates them to take up their profession. Many seem to want to maintain their ‘professional’ distance rather than get emotionally engaged and I fear this is all so easy to do in a fragmented and overburdened system like the one we now have. I have met many who retain the ‘I-it’ perspective as a cloak of (imagined) superiority. Some seem more driven by a feeling of pity for those of us who are more unfortunate in their lives, or move no further than sympathy- which I have indicated above has serious limitations. They do this rather than risk finding out that patients and service users are human too. For if you do that you have to admit the possibility that their ‘afflictions’ may not be unique to them. You may even be susceptible too- and then you would definitely not be satisfied with mere sympathy would you?

My memoir, ‘The Other Side of Silence: A psychiatrist’s memoir of depression is available in bookshops and on Amazon UK here. USA here.