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?

Sacred cows of community mental health care

A little while ago, someone I met from a third sector mental health organisation complained to me about their local community mental health team: ‘It’s a real nuisance when referrals miss the allocation meeting- then people have to wait for another week- and they might not get accepted…’

I’ve spent quite a bit of my working life trying to help things function more smoothly at the interface between primary care and specialist mental health care, so I wasn’t surprised to hear this- though disappointed that so many of the same issues keep coming up year after year- confirmed when I asked twitter whether the ‘traditional’ community mental health team allocation meetings still take place. In many places they clearly do. And that surprised me. Because this tweet pretty much summed up (for many I think) the inherent dysfunctionality of the enterprise:

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More than a decade ago, my colleague Carolyn Chew-Graham and I researched the relationship between CMHTs and GPs in Manchester and Croydon,and, as part of this project, we obtained permission to record referral allocation meetings and analyse them- in addition to carrying out in-depth interviews with GPs and  team leaders. We concluded that:

‘Inconsistency was observed in how decisions were made on whether a referral was accepted or not. Conversations tended to switch between clarifying information, inconsequential comments, comments about the referrer, comments about risk and reiterating what has already been said. It was usually difficult to identify a point in the discussion at which a clear decision was made.

The findings from the analysis of the taped meetings were thus in marked contrast to the more structured and organised way in which participants reported that decisions came about within meetings.’

When we interviewed the GPs, some were visibly distressed by the process of trying to get a person who they felt unable to help seen by mental health services. Others were more pragmatic:

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These interviews were carried out in 2006, long before the current financial crisis in the NHS. In many places the same systems still exist. Are referral allocation meetings one of the lingering sacred cows (at least in some localities) of mental health care? And what does that signify about such services?

I attended my first allocation meeting at one of the first Community Health Centres, Brindle House in Hyde, more than 30 years ago. At the time we thought we were cutting edge, and perhaps we were, discussing the GP letters over coffee every Monday morning. A decade later, I helped to set up CMHTs from scratch after the closure of a mental hospital, and it soon became apparent that everyone in the team felt overloaded by the number of referrals. We tried to solve that problem, and didn’t entirely succeed, by setting up a primary care focussed team for people with common mental health problems- but it still worked in too similar a way to the CMHT. It wasn’t easy to get mental health workers out to work closer to primary care- yet it seemed to me that was where the solution lay. I’m still arguing this.

What twitter also told me was that in many places allocation meetings have been replaced by assessment teams, Single Points of Access and triage to attempt to control the pressure of referrals into the service- followed by case allocation by team leaders. Daily instead of weekly allocation prevents delays, and meetings can be reserved for discussing how to manage the flow (water metaphors abound). Caseloads are also more effectively managed than they once were. In my opinion, CMHT professionals should not have the freedom to say ‘I’m full’ whilst at the same time resisting supervision. When working with experienced mental health professionals in collaborative care research I have found that while many appreciate more support and supervision a few expect to work completely autonomously. I support the need for 3 types of supervision- case management, clinical and developmental- to acquire new therapeutic skills, but one or more of these may be absent. Meanwhile Single Points of Access (despite their woeful lack of evidence- this is the only study I’ve ever found) and ‘assessment teams’ are at risk of becoming the new ‘sacred cows’.

When I meet to work with a group of GPs, as I did only few days ago, it’s clear that they remain very unhappy at the difficulty accessing care for their patients- despite often having good working relationships locally. While many of the ways that the interface has been ‘reconfigured’ have helped to control the demand for access to care, the question arises whether they are really the best options for the whole system- in particular patients and service users. More resources would help, absolutely, but other things need to change too. The problem with some of these new structures and ways of working is that they have increased the problem of a person being assessed several times before anyone agrees to help them- if at all. Single points of access, although ostensibly better in many places than what has gone before, cut across existing relationships between teams and primary care, and can especially disrupt doctor-doctor communication- which GPs value.  I really look forward to the proposals from the team currently working on the National Community Mental Health Pathway, but I suspect that not only ways of working need to change– but values have to be challenged too, particularly how staff arrive at their beliefs about who is ‘deserving’ and ‘not deserving’ of ‘care’. That might expose some other sacred cows and open them up for discussion.

I continue to believe that community services must work much more closely with primary care. As Emma Tiffin and her colleagues have shown in Cambridgeshire, supporting primary care with the local PRISM service ( PRISM presentation 7.12 ) who don’t accept referrals but requests for service (‘referral’ and ‘threshold’ are banned words- it’s about providing advice to GPs and supporting patients through to the best service option for them- not turning people away) things can be done differently. Services need to reconsider how they can provide a more open, accessible and helpful face to the community and that means working much more closely with primary care. Assessments should be as few as possible- and ideally the person who initially engages the person should continue to work with them. I know from talking to service users- and using services myself, how stressful that first meeting is- but so much important therapeutic work can be done in that one session. The key to ensuring this works effectively is the right kind, and level of supervision- with medical input essential.

Allocation meetings where decisions are made about whether or not to accept GP referrals, and who is going to take them, should be a thing of the past.

My last allocation meeting at Brindle House in 1984 ended with some of team performing a goodbye song- with new words to the music of Stairway to Heaven (they knew I was a Zeppelin fan). I found the verses recently when clearing out my study. Very happy memories-

but we have all moved on.

 

 

 

 

 

 

 

 

 

 

 

 

Recovery during a war on depression

 There has never been an easy time for people with severe mental illness (yes, I am calling it that) to get the help they need to recover, but at the present time it seems harder than it has at some other times in my life. The terrible impact of austerity on the provision of mental health care, combined with the redefining of ‘recovery’ as being capable of economic activity has discriminated against those who are disabled. The results have led too many people to take their own lives.

I have experienced episodes of depression throughout my adult life but I acknowledge that I am fortunate to have been able to retire from work, and to embark on what David Karp the sociologist describes as defining depression as a condition that one can get past. When I am well, as I have been for the last few months apart from a blip before Christmas (work related), I find it hard to remember just how awful I felt the last time I was severely ill. But what I’ve been working at over the last couple of years is trying to reclaim recovery for what I always originally understood it to be. Not 50% reduction in my scores on the PHQ-9, or my ability to work, but re(dis)covering the life I’ve glimpsed at times but never managed to reclaim- because I’ve learned how depression cruelly deceives you by whispering that there is nothing left in life for you. It’s so much more than unhappiness. It’s a way of being.

The current discourse about ‘depression’ hasn’t helped. I’ve spoken on social media about how there seems at times to be a war on antidepressants, but actually I think it’s more than that. I think it’s a war on what I, and many others experience as depression. There is a real sense of denial of experience- of the phenomenon (it’s really ‘misery’ and ‘unhappiness’); of the cause (it’s all about power, threat and meaning– the body doesn’t come into it- despite the fact that depression is undoubtedly experienced in the mind and the body); and the treatment (antidepressants don’t work- and anyway they aren’t antidepressant- they just numb and sedate you); and actually work is good for your mental health. Any work (no it isn’t).

Therapy has become aligned in some places with employment services and in Five Years Forward, ‘depression’ is subsumed under Improving Access to Psychological therapies only. The fact that it can have psychotic features in this setting is sometimes missed by those not trained to recognise this.

What I have learned is that first and foremost you need someone who may not agree with your view of the world, but believes you when you say this is how it is, to be there to guide you through. You have to be able to trust them. Many people find that difficult because of what they have been through in life, but so many health professionals seem to fail to understand the role they must play in engaging you.

Getting access to the right treatment for you is essential. I don’t think depression is homogenous. In my experience the part played by physical, psychological and social factors in its aetiology can change between episodes and over a lifetime. And treatment needs to be similarly tailored. When I was younger I benefited from dynamic psychotherapy in helping me to make sense of my difficult early life. Later, CBT helped me to cope with every day living. And I needed medication- and still do.

At the moment we are still in the midst of a debate between those who say there is incontrovertible evidence that antidepressants work- and those who still say that it’s mostly a placebo effect. I believe they work- for many people – but not for others. I guess one of the problems is that if you accept that medication works on depression then there must be some physical process at work in the brain- at least for some people some of the time. As I’ve said above- I think there is- but many will never be willing to consider that.

Some people experience problems with antidepressants- they can make you feel worse- I experienced awful agitation on fluoxetine. You can also have major difficulties withdrawing from them but I don’t think we yet know the true extent of this. Anecdotal evidence or internet surveys with their inherent bias, are not enough. But I believe that people experience this, and I don’t think my profession has, in the past, taken it seriously enough.

And we need better treatment for those who do not respond to antidepressants. I’ve no doubt from my own experience that people with adverse childhood experiences are less likely to respond to medication and need access to sufficient good quality therapy. The kind I had access to, longer term one-to-one, is now rarely accessible without payment. Yet I cannot see how recovery can be possible, with brief interventions only, for people who need time to build up trust because of what has happened to them in early relationships.

Beyond treatment you have to be able to rediscover living again. For me, that’s the part of the process that feels like healing. I’m still learning from the therapy I had in the past. I am rebuilding a life and finding meaning in existence again.

I am very lucky to be able to do this. It would be wonderful if those who espouse those simple absolutes about what depression is and what recovery involves might reflect on what it is like when no-one will listen to how awful you feel, and people just tell you what you should be believing and doing (what they fervently believe themselves or is economically expedient)- when that seems impossible and intolerable to you.

This is not mental health care- and if it were all I had received I would not be recovering from depression now.

Diagnosis, power and suffering

I was very fortunate in my psychotherapists. None of them tried to impose an interpretation on my experiences in a way that didn’t feel right for me. They suggested them from time to time, but they always allowed me the choice to find my own way forward. Two of them didn’t discuss diagnosis at all. However the cognitive therapist, who said that my use of antidepressants was ‘between me and my psychiatrist’ worked from the basis that I had recurrent major depression- what it says at the top of every letter from my psychiatrist to my GP- and the therapy I received was rooted in research evidence.

So it has been interesting, and worrying too, this week to watch people on social media arguing about the Power-Threat-Meaning (PTM) framework just published by the British Psychological Society. Some of its supporters have somewhat grandiosely claimed that it will ultimately replace diagnosis and that this is an ‘all encompassing’ framework. Its authors have denied this although, as widely noted, this is not what it says in the overview, where it states that continuing use of diagnosis is ‘unethical’. Nevertheless those of us, professionals and service users alike, for whom diagnosis has continuing validity, have been concerned and sometimes moved to anger by the conversation.

In my own career, I was particularly influenced by feminist approaches to therapy (especially after a memorable weekend at the Women’s Therapy Centre in the 1980s)- but my longest period of supervision was from a wonderful psychodynamic therapist who skillfully challenged me when my strongly held beliefs interfered with my ability to listen to and empathise with my patient. I can think of people I have seen in the clinic who would have found the PTM framework liberating and potentially empowering, particularly those who had experienced complex trauma in early life and had received the diagnostic label of ‘personality disorder’. But I can also think of others who would have found the idea of their problems being rooted in a response to ‘power’ difficult to understand or use in a way that made sense to them.

I didn’t experience anything like the trauma many of my patients did, but I was shamed and criticized, physically punished and experienced a degree of emotional neglect and absent parenting. The PTM framework doesn’t help me personally to make sense of that, although a therapist with a strong allegiance to it might think differently and want to try and convince me so. Neither does it help me to understand why my brother, alone amongst the members of our family, developed obsessive-compulsive disorder at the tender age of 7. I have spent my life, since my very helpful therapy ended, coming to terms with my grief for the childhood that I did not have- something which Alice Miller wrote about decades ago. I would have found the PTM framework helpful in understanding my battles with power in the NHS, and paradoxically perhaps with managers of psychological therapy services in particular when trying to increase access to therapy. But it still doesn’t explain why I amongst my colleagues was the one who got severely depressed. For that I would still argue a ‘biopsychosocial’ framework is still needed.

For me there are several principles that need to be considered:

  • All mental health professionals need to be able to work flexibly across different models in order to find what is most helpful for this person at this time in their life to understand and overcome this problem. If a therapist has too much allegiance to a particular model this can be detrimental- but I know from what people tell me that they have experienced this. Models may change over time and it may be necessary to draw from several in making sense of a problem and planning treatment.
  • Psychiatrists have power in their ability to diagnose and detain people under the Mental Health Act, but other therapists exercise direct power in the consulting room too. And we all have less power than many might imagine in the face of NHS management. It’s essential we work together effectively in teams alongside patients and service users, not in conflict with each other.
  • Diagnoses are not ‘things’ but concepts. As Robert Kendell, with whom I was a medical student in psychiatry, wrote:

‘thoughtful clinicians are aware that diagnostic categories are simply concepts, justified only by whether they provide a useful framework for organising and explaining the complexity of clinical experience in order to provide predictions about outcome and to guide decisions about treatment.’

  • The need for diagnosis is not going to disappear whatever the most evangelical adherents of new models might think. Diagnosis is used worldwide, for clinical work, epidemiology and research because it has utility. Psychiatrists are the first to admit that the current systems are problematic. I was involved in the ICD-11 for primary care, and met some of those working on DSM5 firsthand. I’ve seen how unsatisfactory the process can be. But across the world the vast majority of people with mental health problems don’t receive any mental health care at all, and if they do it is not from a highly qualified psychological therapist, but in a primary care setting. In helping doctors in many different countries to recognise the commonly occurring experience we call ‘depression’ (which exists the world over) I’ve tried to do my part to promote better care, and I certainly don’t think that is unethical- indeed quite the opposite.
  • It would be foolish to think that ‘good’ ideas don’t have unintended consequences. The libertarian wing of antipsychiatry described by Peter Sedgwick in Psychopolitics was perfectly in tune with the Thatcherite reduction in spending on mental health care in the 1980s. We must beware that statements that ‘mental illness doesn’t exist’ are not taken up by those seeking to further persecute people who are suffering terribly in the current social and politic climate. Because people are suffering.
  • And people who are suffering have a right to be ‘ill’. Cassell (1998) talks about the importance of understanding the nature of ‘suffering’. Suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. It is crucial that we respond empathically to address that suffering whatever we call it. To call it ‘illness’ does not necessarily suggest a biomedical aetiology. The ‘sick role’ has its benefits and it allows us time out of life and additional support and help in order to recover,  and if everyone’s response is ‘normal’ then why do some suffer so much more than others do?

Because there are undoubtedly those amongst us in our society who are more vulnerable and need our help.

According to those who are at the front line in the fight for social justice for people with mental illness in our community,  diagnoses are required (regardless of what it says in the PTM framework) along with deficit based descriptions which fit mental health problems with every day tasks such as difficulty in eating, bathing and dressing. Follow this link for more guidance. Med_Evidence_WCP_Guidance_final_14dec

 

We have plenty to do together to work for better mental health care. The PTM framework will be enormously helpful for some, but not for others.

Please lets not not forget how we all came to be here- to try and work together to improve the lives of service users and patients.

 

Why I’m fed up with being positive

So many people in the world now seem to be in pursuit of happiness. Worryingly that seems to be perceived to be something that primarily requires us to rework our ‘self’ with all of those self-help books I’ve complained about before; or achieve with very short-term therapy in which you don’t, God forbid, have the opportunity to get dependent on your therapist, even though every one of us, therapists included, are dependent on someone or something. And if you don’t achieve happiness I suspect the conclusion will not be anything to do with the difficulties that you have faced in your life- the traumas of childhood, the struggles of poverty, the lack of meaningful employment or the stigma that you face for being ‘depressed’. No, I am beginning to fear that in this age of relentless positivity the conclusion will be that you simply haven’t been smiling hard enough.

If there is a truly positive place in the world it is America. People serving you in shops and restaurants (mostly) smile at you and wish to ‘have a nice day’ (although the young man in the fish shop in Orkney wished me that today too- sadly). For those of us more cynical Brits who spend time in the USA (like Ruth Whippman in in her recent book ‘The Pursuit of Happiness’) it can be difficult to come to terms with a place where everyone seems to be so determined to find happiness by one means or another. In my favourite bookshop, the Elliott Bay Book Company on the top of Capitol Hill in Seattle, which by the way has a marvelous ice cream shop nearby, I found that the personal development shelves where people go to seek instruction in happiness, have now been relabeled simply as ‘self’. On the top of this section there is now label which simply said ‘self overstock’ which may or may not be intended to be ironic. I didn’t purchase anything, though I did buy a large vanilla cone from next door, which provided some relatively short-lived but exquisite pleasure.

I find the current vogue for dishonestly reframing everything in a positive way really irritating. We are not allowed to have problems any more only strengths.

Well that’s fine. I know I am a resourceful and resilient individual thank you very much with an excellent standing in the community. But can you help me with the fact that my electricity’s been cut off. That’s a problem not a bloody strength. And since I lost my job I’ve been feeling really down and I’ve had no money for 6 weeks while they sort out my benefits. I don’t mind you saying they are problems, because its true, they are, and I need some help.

This persistent and problematic level of positivity seems to have entered almost every aspect of mental health care. I suspect it wouldn’t bother me so much if it was balanced with an acknowledgement that people have real life difficulties that for which they do really need the help of others, especially mental health and social care services. And I have a suspicion that its all really about people becoming more ‘self-sustaining’ and cheaper to run.

The current wave of positivity began with the rise of the Positive Psychology movement almost two decades ago, led by the American psychologist Martin Seligman, previously better known for having come up with the term ‘learned helplessness’ to describe what happens when people feel powerless to change their lives for the better- and proposed as one of the psychological theories for how we get depressed. In her wonderful book Smile or Die: How positive thinking fooled America and the world the journalist Barbara Ehrenreich ably convinces the reader that the ‘positive thinking’ movement has not only pervaded almost every aspect of our world in the 21st century through the influence it has had on business and economic theories, but that it has also done a considerable amount of harm. We have been encouraged to believe that by thinking in ways akin to making magical wishes, we can improve our lot. That by the repetitive act of reading daily ‘affirmations’ and writing gratitude letters to express how we feel about what is positive in our lives we can increase our sense of ‘wellbeing’. Even that by thinking positively we can avoid death from cancer.

Even though the evidence for positive psychology remains weak  when viewed against what we know about other kinds of psychological treatments (and in the case of beating cancer, non-existent), it has consumed all in its path- perhaps supported by the extraordinarily powerful marketing that has accompanied it. Those who have developed it have become gurus and then very successful business people. As Ruth Whippman points out, their expertise is now being purchased to bully the unemployed into feeling better about their job prospects. And positive psychology has found its natural bedfellow in the Recovery movement where there is a similar degree of evangelical positivity about the future prospects of a person struggling with mental health problems. In the recent book Wellbeing, Recovery and Mental Health’  which ‘brings together two bodies of knowledge on wellbeing and recovery’ the authors describe a type of positive psychotherapy for people with severe mental health problems including such strategies as ‘savouring’ (I’m not sure what that means), gratitude letters, and recognizing your signature strengths; once again without providing much good evidence of its effectiveness  other than those who took part had very positive views of the programme. I do hope that was enough for them.

I’m finding all this unwarranted and dishonest positivity quite depressing. Am I alone? Or is this just another instance of my unfortunate learned helplessness?

Talking values

Our values are the principles by which we make judgments about what is important in life. We often make the assumption that because we consider ourselves to be ‘reasonable’ people, share a professional title or have similar political views we must feel basically the same way about everything- but we don’t.

I was reminded of this at a recent conference when I was talking (as I sometimes get asked to) about the importance of and ways of helping people with common mental health problems in primary care. One member of the audience expressed concern that directing resources to people with anxiety and depression was being promoted at the expense of people diagnosed with ‘real’ mental illness and told us that a member of a team working in primary care had complained to him that there was ‘nothing wrong’ with people they were being asked to see. Another asked the panel how we might help people to stop asking for help with such problems and be more ‘resilient’ instead.

If you know me at all you will be able to imagine my reaction. I’m one of those people who get help with a ‘non-psychotic’ illness, although what has been of great benefit to me is so much harder to access these days, not easier. I was also thinking of the depressed colleagues of these professionals who would find it quite difficult to admit they needed help in the face of people around them expressing these values and beliefs. I objected passionately to the use of the word ‘resilience’, as I always do and probably alienated the young woman who asked the question rather than convinced her with my reply- she disappeared soon afterwards.

Some time ago there was a push towards ‘values based practice in mental health’. According to the Oxford psychiatrist and philosopher Bill Fulford ‘Values-Based Practice’ is the theory and skills for effective health care decision making where different (and hence potentially conflicting) values are at play. Not only do health professionals hold many different values from patients and service users, they often differ considerably between each other- both between and within their respective groups. Discussion of all of our respective values is essential in those difficult areas such as the role of diagnosis, how to make care more patient-centred in the face of feeling ‘hit over the head with evidence’ (as someone said recently on twitter) and ethical dilemmas such as involuntary treatment. It is never so simple as something being ‘right’ or ‘wrong’. All of these require time to reflect, on how and why we hold particular values of our own and why completely different ones may be so important to another person- and being able to admit honestly ‘maybe I don’t have all the answers’.

On social media there is little opportunity for reflection and arguments about value-laden topics can quickly become abusive. I do think its crucial to remember how many people with mental health problems look to social media for support, and abrupt questioning by mental health professionals of the personal values they hold on topics, such as being given a diagnosis and treatment that they believe has helped them, should be viewed as ethically unacceptable by their membership organisations- just as it would be in a direct clinical encounter. Values based practice is not simply about educating a person about what is wrong with their beliefs, but starting from where that person is at and trying to understand and make sense of their values and beliefs. Neither of you is ‘right’.

I should try to understand how and why fellow professionals come to hold the views they have about people with common mental health problems. Telling them they are wrong isn’t the right way to approach the problem- I know that- but sometimes, as with all of us, emotions get in the way.  And, as I’ve witnessed in so many meetings, we can assume we are all ‘on the same page’ (or hope we are to avoid conflict) but attempted execution of the task at hand soon reveals that we all do it entirely differently because we never wanted to have those difficult discussions about our basic values. The national roll out of services- such as implementing stepped care services for depression, and IAPT, were good examples of this- approached very differently depending on the values and beliefs of those leading the process in each place, and varying considerably in effectiveness. If we do have time and place for both self-refection and conversations with fellow professionals and service users we often find we have much more in common that we imagine. We can even agree to disagree on certain topics but still work together if there is mutual respect.

I have much more time now to talk and think about those powerful emotional responses, so influenced by my personal experience and those of friends who have felt unable to disclose their problems- and how these have affected my decision-making. Can we please have more opportunities in the training of mental health professionals not just to talk with people who reinforce our values- but those who might challenge them? and I don’t mean in the setting of a conference presentation where discussion is limited and things can easily degenerate into a shouting match too. A first step, according to Gwen Adshead,  might be to ‘respect’- to be mindful of another persons differing beliefs and values. To care about their experience as much as your own. The people I have disagreed with will have arrived at their position perhaps because of particular experiences they have had- just like I have. How and why?

All of practice- not only psychiatry, is influenced by values- but insufficient attention is paid to not only what is best for the patient from the viewpoint of the doctor or therapist, but what is right for that person, at that point in their life given the situation in which they find themselves. A professional cannot and should not assume that they always have the ‘right’ values or the correct answer.

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.

The invisible patients

I had been essentially bed bound for 5 days, catheterized, cannulated and weak as a new born, in a ward for the elderly which I will call ‘ward A’, when the first senior nurse I had spied came into the 4 bedded room in which I lay. She chatted and giggled for ten minutes or so with the nursing assistants, who all stopped what they had been doing. I couldn’t hear much of what was said as I wasn’t wearing my hearing aid, but I picked up the gist that it wasn’t work related. Then, picking up her paperwork, and after a cursory glance through each of us patients as though we were invisible, the senior nurse departed again.

Five days earlier the highly professional doctors and nurses in the Emergency Department and medical assessment unit saved my life. I was diagnosed with sepsis secondary to pyelonephritis, given iv fluids and antibiotics and admitted initially to the medical assessment unit. There I was cared for by a pleasant final year nursing student, who told me her name and explained that I would be transferred forthwith to another ward for on-going care. Sadly, that was when things took a downhill turn.

If I hadn’t had anything to compare it with (see below), I might have thought that the care I received in ward A was the best on offer. On arrival I was left in a metal wheelchair in a corridor for 2 hours, with nowhere to rest my head other than a table-top and the body of my husband standing next to me. I’m 61 now, but I was by far the youngest in ward A, and I wondered if that played a part in some of the nurses apparent perception that I didn’t need any help- even though I was acutely ill, apparently rambling at times, and receiving intravenous antibiotics for the antibiotic resistant e-coli bouncing around my circulatory system that I had acquired in another hospital after a routine cystoscopy. Each morning I was expected by the night staff to get out of bed and sit in a chair with no pillow for 2 hours even though I was septicaemic and unable to support my own weight, while I waited for the day staff, a couple of whom chewed gum all the time, to ‘come and do the beds’. After 2 days I rebelled and crawled back onto the bare mattress but they didn’t come any sooner and left me until last. While lying there I heard the lady in the next bed who was barely conscious referred to as a ‘bed-blocker’. Then I refused to get up altogether at 6.30 am and my increasingly stained sheets were left unchanged for 3 days while the dressing on one of my bilateral cannulas, left in for almost a week, began to discolour and smell.

Neither the nurses nor the ever-changing doctors who visited each day introduced themselves and I couldn’t read their name badges as I didn’t have my glasses with me. I gradually learned which nurses to ask if I wanted something, and which ones would ignore me or get inpatient if my request didn’t fit with their all-important routine. Two of the staff nurses and one of the untrained nurses showed me considerable kindness- they told me that they had been hospital in-patients too and knew how important it was to be provided with information. Another left me for 2 hours in acute pain. Three days into treatment I was mistakenly given my medication orally rather than IV, but even this didn’t warrant a conversation with the lead nurse. When I made my first unsteady foray out of the room and down the corridor, fortunately without falling, I couldn’t resist a cynical snort when I saw a poster all about ward A’s dedication to providing high quality patient centered care.

Halfway through my stay, as I began to recover I was transferred to another ward, which I will call ‘B’. I was immediately greeted by the senior nurse who expressed horror at the sight of the tube hanging from my arm and insisted on its replacement. This was a surgical ward, and it was quieter, but only at first, and it soon filled up completely with post-operative patients and quite a few people as disabled as those I had shared a room with before. Everyone there introduced themselves with ‘Hello my name is’. I became visible again- as a person who was sick and needed care and assistance. Each day my bed was remade and I was able to get back into it if I needed, as I was still utterly exhausted. This was the NHS that I recognized but it felt as though I had been moved to a different hospital – not just to another floor. The mattress was even more comfortable (this was not a halo effect- my lower back no longer required a supporting pillow!). I was assured that beds were the same, yet it seemed to me that the people most at risk of pressure sores were sleeping on the oldest and most worn in the hospital. I also realised that the floor of ward B, unlike that in ward A, which had caked on dirt by the side of my bed, was actually clean.

I hate to criticize the NHS. I spent my life working in it, and I do believe it is the best health care system in the world- but I don’t think that means we should assume that all of its failings are related to lack of money and understaffing. I’ve worked in and researched health care long enough to know that isn’t true. From treating NHS employees with mental health problems who were bullied or excluded by managers and staff cliques, I know how much culture and management play a part in how effectively a unit operates, and how leadership style is crucial. That I only once saw a senior nurse in my time on ward A- and I and my fellow patients were invisible to her, was, I believe a contributing factor in why ward A was failing to provide the care it aspired to. In ward B the senior nurses were regularly seen around the unit and were approachable to patients and relatives.

After 2 weeks, I was discharged home where I am still slowly recovering. My bruises are disappearing and my desire to do something to change things has returned in force. I’m not good at being invisible- it’s a life long problem. I will be writing to the Chief Executive of the Hospital Trust … and also suggesting that if any of the Board are in doubt about the state of the beds in ward A they should be invited to spend a night (or two) in them.

Too much brain and not enough thought?

I sometimes have difficulty getting to sleep- but if you put me in a warm room, turn down the lights and start showing me pictures of brain scans I can guarantee that I will be snoring in five minutes- particularly if its after lunch.

You have probably guessed that I didn’t become a psychiatrist because I was fascinated by how the brain actually works. I was one of those medical students who wanted to spend time trying to understand what people I met were experiencing, and to find the right words or images to describe them. People with mental health problems are just like you and me (and I have them too), but with different ways of making sense of life, which can be sometimes be (for them and those around them) distressing, engrossing, terrifying, or engaging- to name but a few of the infinite possibilities. As a doctor I tried in turn to draw a person into a conversation, and then provide help and care.

What I am not, could not, and would never choose to have been was some kind of clinical neuroscientist. As you might expect from my problem in lectures, I’ve never found the intricacies of neuroimaging, neuropharmacology or neurophysiology, to name but a few of the specialties with that prefix, very exciting. Perhaps it’s because those subjects were so poorly taught to me. I get lost very quickly when I listen to someone who is talking with enormous enthusiasm, for example, about the genetics of mental illness, because sooner or later they go into minutiae that seem so far away from the ‘person’ that my brain moves to its economy setting then switches off completely.

However, young doctors who are beginning their training now in psychiatry are going to get a much better education than I got in neuroscience, and hopefully will be able to appreciate- and understand it-better than I did. This is indeed considered to be a golden time for neuroscience with many important breakthroughs. One of the recent winners of the Brain prize was a British psychiatrist. Perhaps its time has finally come and we will begin to see real benefits for patients in terms of more effective treatments.

Perhaps this will all happen, but possibly not as fast as some might believe.

When I started training in 1980, world psychiatry was moving out of what Leon Eisenberg called its ‘Brainless’ phase, dominated particularly in the USA by psychoanalytic theory, into the ‘Mindless’ era, where biological explanations took over to the point that the ‘medical’ for many became synonymous with the biomedical approach- although many of us remain firmly ‘bio-psychosocial’. Sometimes it feels as though the mental health world itself is split into those (especially psychiatrists) who are determined to show their psychosocial credentials and others who feel the need to defend against the onslaught of biomedicine. One of their favourite battlegrounds is on twitter, where blows are regularly exchanged.

I have certainly met some psychiatric colleagues who are remarkably single track in their biological view of mental illness. One or two of them were eminent neuroscientists whom I would dearly not wish to consult as a patient as it was clear they were yearning to get back to the lab where they could have a closer relationship with a sliced up brain than a living one. But I have come across many others over the years that were keenly determined to try and find new ways of helping people and demonstrated considerable empathy for their patients – even if they were highly skeptical about the role of psychotherapeutic interventions in achieving recovery.

However one of the major problems I have with neuroscience is that despite the amount of money that has been poured into researching the brain there is still so little to show that is relevant to patients. I started training more than 35 years ago, and we have been repeatedly told that the day when this investment will result in real clinical improvement is somewhere just over the horizon.

Psychiatrists cannot simply become ‘clinical neuroscientists’ or even- as some have suggested, neurologists for several reasons. Clinical neuroscience is not yet ready for clinical use. There is still a great deal to do before that point will be reached and the brain is an infinitely complex organ. Furthermore we mustn’t forget that the person who inhabits that brain is very complex too, and lives in an increasingly complex world. I have spent my life trying to help others achieve change, facilitate health care systems to change, and grow and change in my self. None of these were straightforward and I often failed.

Recently a group of eminent American psychiatrists concluded in the British Journal of Psychiatry:

‘our mental health research funding neglects immediate public health needs to focus on future discoveries, reflecting the drive for technological solutions for disorders that are unequally distributed and partly socially determined. Time frames for such payoffs have previously been consistently under- estimated’

Neuroscience may ultimately provide us with some of the answers, but I often feel when I’m in one of those lectures that I would really like to hear more how we can link up a little more across the multidisciplinary divide – and try to understand the interactions between the person, their environment and their brain. Because any real solution is always going to involve some thought about the first two of these. Instead there is so much research (and treatment) still going on in (sometimes idealogical ) silos.

Perhaps the new emphasis on neuroscience will attract more students into psychiatry, as it provides some tangible ‘medical’ credentials of a very high order (close as it is to neurology). But there is always the risk that too much of this will deter those, like me, who were fascinated by what people said, and wanted to be a doctor who listened, thought carefully about the options, discussed them, and then tried to help using every avenue available.

So I think we still have plenty to think about.

Damage

‘Mentally ill young woman killed herself hours after NHS staff called her a ‘f**king waste of space’

Sometimes a few words that catch your eye in a newspaper keep coming back to you. This  was from the Mirror a couple of weeks ago. I’m not going to say anything about the details of this particular case, but it set me thinking about the damage that is done to people in the name of care, often by the very people they are told to trust.

Many of you will say, quite rightly, that mental health care has been damaging people for years. I remember a patient of mine who had survived a leucotomy and the half-life he had lived in a long stay ward ever since. I’ve known many who have experienced awful after effects of ECT and medication and I bear responsibility for some of this myself- I was trying to help and sometimes I was successful- but not always. I have given tablets to people, which resulted in them feeling worse than they felt before they started them. But, just like we are now beginning to realize with psychological therapies too, treatments can do good but they can sometimes do harm. But how can verbal abuse by any definition of the word ever be justified as ‘treatment?’

A few days later I read the article about a well know TV presenter and his daughter who is recovering from anorexia. The original is here, (sadly behind a paywall) but it was picked up elsewhere too. He tells how she had felt suicidal after a regime, which

included an expensive regime of forced feeding, no exercise, accompanied lavatory visits to prevent them throwing up the food consumed, and monitored sleep to make sure they didn’t exercise while in bed”.

His daughter resisted and threatened to kill herself.

What I hated most about my job was treating a person against their will. It changed the nature of our relationship, sometimes (but not always) damaging it irreparably. The power inherent in my ability to engage with and forge a therapeutic relationship with a person was, for me, one of the most important and personally satisfying parts of my work. I wanted to work with a person, not against them.

In my years as a consultant I cared for quite a few young and older women with a diagnosis of anorexia and they told me what life was like in the units they had been treated in. Some experienced the style of care they were provided with as ‘punishment’, and for others I have no doubt that is what it was. What I’ve heard recently from people I’ve spoken to who went through some of those strict behavioural regimes (now strongly advised against by NICE) has confirmed that.

So what has this got to do with ‘damage’? Well I think we really do need to consider the long term harm that is inflicted every day when people are told they are ‘dependent’ because a service can only offer short term care, when what we know from attachment theory is that for a person who has never experienced secure, loving relationships, another rejection is the last thing they need. We need to consider how, when young people are sent to beds a very long way from home, this must seem like endless punishment for something they have done wrong but no-one will tell them what it is. We need to think about therapy that ‘does’ to people rather than ‘with’ them (in my experience that doesn’t work either). We need to think how it feels to be asking for help because you feel life is too awful to carry on with, but you are simply told to go away and have a warm bath. When the trauma you went through in childhood or later is simply confirmed by the way in which people treat you now. You are told ‘we have nothing for you,’ or ‘you pose too high a risk for us to manage’ or even ‘You are a f**king waste of space.’

Articles about designing our mental health services utilizing what we know from attachment theory – that the things that have happened to people early in life will affect how they behave and ‘attach’ in adult relationships, have begun to appear. Penelope Campling has talked about the need for ‘intelligent kindness’ from those working in healthcare. Yes, this costs money, and it is much harder to do it when money is short and the system is under such pressure. But some of us have long memories. Attitudes and training of staff were not necessarily so much different when the finances were healthier. Money may help but it wont solve the problem of the how the way care is provided can sometimes do much more harm than good- and the cost may be even greater than doing it differently.

I wonder what happened now to the many young women who ‘resisted’ treatment in the wards where I visited one of my most severely ill patients with anorexia. Who is caring for them now? What long term impact did a rigid unforgiving approach doing things to them rather than with them have on them? I hope that many have recovered but I cannot help wondering if some have been diagnosed with personality disorder for being ‘difficult’ and/or rejected from the system. Resistance in therapy is something to work through with a person, not punish them for.

At the end of the article the TV presenter’s daughter talks about how she was eventually helped to recover, in an NHS day care programme. Her words have stayed with me this month.

‘I had a key nurse who really understood me and saw the Maddy without the demons. She made me realize that inside me was still laughter and joy. I was lucky, but mental-health treatment should not be a lottery. The kind of unit that eventually helped me is all too rare. I feel desperately that things need to change and now is the time for action. Otherwise it will be too late’.

Maybe I am too idealistic. But I’ve resisted being damaged by the system too.