Category Archives: Uncategorized

An expert in me.

My doctor is an expert in me. We have known each other for nearly 20 years. I don’t remember the first time we met, but I do remember we got to know each other over a period of a few months when I was first diagnosed with high blood pressure. In those days you used to see a GP for high blood pressure, though nowadays it is a nurse or even a machine that checks it and uploads the results to your medical record. We had time then, in the appointments that seemed so much less hurried than they do now, to share some details of our lives.

My doctor is an expert in me. When my wife began to fall ill, my doctor already knew quite a bit about us. I remember very clearly the day she came round to our house. I thought that Jean might have flu or a chest infection, but my doctor knew straight away that it was more serious than that and she stayed with us until the ambulance arrived.

My doctor is an expert in me. My doctor was away when I had my heart attack, but she called round as soon as she got back. I had only been home from hospital for a day and was struggling to look after Jean. My doctor was a tremendous help then, organising district nurses, social services and carers to come and help.

My doctor is an expert in me. When I go to see her it’s like seeing an old friend. She doesn’t need to search her computer to check what medication I am taking or find out how many heart attacks I have had. She asks how I am coping without Jean instead of wasting her time talking to me about smoking.

I saw my doctor on Easter Sunday. She was working in her practice all alone. I knew she was going to be there and I bought her a cake. I was the only patient there. She explained that the practice had to stay open so that patients wouldn’t go to the hospital A&E. I wondered if the other patients knew the practice was open and she said they had all been sent a text message before the weekend. It was two in the afternoon and I was the only patient she had seen all day. She made me a cup of tea and we sat together in the practice garden and shared the cake. We wondered whether in the future GPs would ever get the chance to know their patients. More time for patients and professionals to get to know eachother doesn’t seem to be part of any party manifesto. Personally I am happy to wait to see my own doctor, but if I didn’t have my own doctor, what would be the point in waiting to see a stranger who might be an expert in all sorts of things, but knows nothing of me?

My doctor looked tired and unhappy. She was due to retire last year but couldn’t find someone to take her place and she couldn’t bear the thought of the practice being forced to close, so she offered to keep working until a replacement could be found. There are not enough GPs. Politicians are desperate to appeal to voters by promising ever more without facing up to the reality that too few people are already trying to do too much. My doctor thinks that in the future GPs won’t see their own patients, but will manage teams of healthcare assistants, nurses and who knows, even robots to see their patients for them. I think it’s already getting like that.

Perhaps some things will get better. Perhaps one day they will fix it so that everyone who needs to can access my medical record when they need to. Perhaps one day my hospital appointments won’t get cancelled and then rebooked without my knowledge. But my fear is that a GP of my own, an expert in me, when I really need them, not on Easter Day, but when life has made me a person who needs to be known, will no longer be available on the NHS.

Better together

Always keen to provoke doctors, Professor Chris Ham, head of the wealthiest and most influential health think-tank in the UK, The Kings Fund asked yesterday,

He received a predictable mixture of replies, but the most important was from Public Health consultant Gabriel Scally,

Last week a group of Hackney GPs working for our locally run, managed and operated, not-for-profit out of hours provider CHUHSE met to discuss our clinical audit tool called Clinical Guardian. We were joined by a director from another Out of Hours provider who described how it was developed and how useful it has been.

Clinical Guardian allows all the documented cases to be looked at anonymously by other clinicians so that the quality can be assessed. They look at 25% of each clinician’s cases and give each case a rating of ‘excellent’, ‘good’, ‘satisfactory’, ‘reflection’ or ‘concern’. These are then compared with the average results for other clinicians to give a performance summary. The one below is mine and you can see that I come out below average.

CG

This puts me in an amber category so that next month they will look at 25% of my cases again. If I improve (I know what I have to do and sincerely hope I do!) I might improve enough to move up to a blue or green category and only 10% of my cases will be reviewed. Cases that are graded for ‘concern’ are immediately emailed to the clinician concerned and cases for reflection can be responded to on the Clinical Guardian website. One of my cases for concern was a woman who might have had a DVT. I thought she could wait until the morning before assessment but the team disagreed. Cases for reflection in my case were usually because I had failed to document enough detail.

The experience of the doctors working in Bristol was that continually auditing their doctors’ work and discussing cases significantly improved the quality of their documentation and the safety of patient care.

When I was flagged up as ‘amber’ I was asked to meet with two of our other out of hours GPs and we discussed all the cases for concern over the course of an hour in a critical, but friendly, educational supervisory session. I’m very used to clinical supervision and opening my practice up to scrutiny  which undoubtedly softened the blow, but many GPs and consultants spend their lives working without ever having their practice inspected and audited like this.

The meeting last week with other GPs was, at times tense. They didn’t like being being judged on documentation that stripped a consultation of all the vital elements and quality markers of rapport, empathy, compassion, hands-on-skill, complex-shared-decision making and confidence-building. Nor does it include what patients thought of the consultation, although feedback for CHUHSE has been excellent. This audit looks only at the quality of documentation which is only one element of quality care, but nevertheless, we all agreed, an important one. In time, as we discussed our concerns, we gradually came around to the conclusion that a process of regular clinical audit and personal feedback – especially with an emphasis on education and support would be good for us, our patients and CHUHSE.

I’ve looked at the evidence and argued in a forthcoming paper that every clinician should have regular clinical supervision for as long as they are involved in patient care. The clinical uncertainty, ethical complexity and emotional engagement that we face does not fade with experience. I recently had the opportunity to go to a Schawartz round in a London hospital where a panel that included a consultant and a junior nurse sat in front of an audience that included any member of the trust who chose to come – there were all types of doctors, nurses, physiotherapists, and more. The panel presented a case that for them was especially important. The consultant began, but before he could finish was choked with tears. A facilitator sensitively introduced the next speaker while he composed himself and he later finished his version of the events. The details of the case, I’ll not share out of respect for confidentiality. The round lasted for an hour and the audience were invited to respond. In some ways it resembled a large Balint group, except that comments could be directed to the panel and they could respond. The facilitators explained that we weren’t there to give advice, so much as help them make sense of what had happened. We were especially moved by the nurse who said at the end, “I thought it was only the most junior members of staff who felt like this”. It is through role-modelling that virtues such as humility are learned and younger clinicians learn that vulnerability is normal.

When I (or indeed, almost any clinician) discusses the intensity of clinical practice, other professionals such as social workers or psychologists for whom clinical supervision is an essential part of their work, are astonished that we go without.

If we are to survive and sustain high-quality, safe and compassionate care in the face of unprecedented demands to do ever more with ever less, we need to support one-another. One of the best ways to do this is to open our practice and ourselves up to clinical audit and regular supervision- within a supportive, ‘just-culture’. As Don Berwick said after Mid Staffs,

The most powerful foundation for advancing patient safety in the NHS lies much more in its potential to be a learning organisation, than in the top down mechanistic imposition of rules, incentives and regulations.

Further reading:

“We view clinical supervision not as something imposed on medical professionals by their regulators, managers or those responsible for their ongoing training but rather something to be provided for and championed by doctors as something that helps them in their professional lives. In a world where pressures on many professions seem to increase almost logarithmically, it becomes harder to create the space for reflection – and yet that is when it is most needed”. Highly recommended Book: Clinical Supervision in the Medical Profession

Moving on from Balint: Embracing Clinical Supervision. Essay by John Launer

Listening and learning from people living with dementia

Peter

My father at his 79th birthday in 2012

Earlier this month, I was invited to Elizabeth Bartlett’s house in Salisbury. Funded by Wiltshire council, she holds weekly experiential memory support groups for people with dementia and their carers. We were warmly invited with tea, coffee and biscuits and then divided into two groups, one –  for the people with dementia facilitated by Elizabeth and one for the carers, facilitated by her husband John. I spent 45 minutes with each group. They meet to share their experiences of living with dementia and living with people with dementia.

I was invited partly because my parents have been going to the group for the last few months and finding it incredibly supportive, but also because of my enduring professional and recent academic interest in the relationships between doctors and patients. The carers especially, were hoping that I would be able to share their concerns and experiences with other GPs and medical students.

Context matters.

Patients, on the whole, are afraid to criticise their own GP in person. Too much hinges on good relations, and rather than confront each other when things go badly, they tend to go elsewhere. There are of course, exceptions. All GPs, myself included get complaints and not infrequently, doctors and their patients fall out for a while and get back together again. I bring this up because one of my first impressions was that we had the kind of frank conversations that I probably would not have had with my own patients or even patients from my own surgery or even perhaps in a healthcare setting. Being in Elizabeth’s home and being in groups, which had a self-evident camaraderie gave their members greater confidence to speak out, uncovered shared experiences and changed the balance of power.

It mattered also that I was there to listen to the groups talk about their experiences. I wasn’t there to give advice, make a referral, review their medication, or do anything. I was conscious of the importance of listening and Dr Iona Heath’s remarkable essay, The Art of Doing Nothing. This morning I read through my medical students’ learning objectives and realised that even from the second year at medical school there is more emphasis on the advice they’re expected to give patients than the depth of understanding they’re expected to gain about their experiences. I’ve been trying hard to subvert this, but students are understandably focused on stuff they expect to be examined on.

Getting lost.

I began with the dementia group. One of the new members said that after she had passed the GP’s dementia test her daughter complained, ‘but mum, that’s because you’re so competitive!” I remember my father’s delight at passing the more sophisticated Adenbrooke’s dementia score. I wondered whether he might have been diagnosed earlier if the psychologist had come over for a family meal or sent him out with a shopping list. We would have happily cooked or suggested some groceries.

Both the dementia group and the carers said that getting lost was one of the first things they noticed. One of the carers told us that her husband got lost and wandered into a hotel in Salisbury where the staff made him a cup of tea and offered to get a taxi to take him home.  When he could not remember where he lived the hotel staff asked the taxi driver to drive him around until he recognised his home, which, before long, he did.  His very grateful wife offered to pay the taxi driver but he told her he had already been paid by the hotel and it had been a pleasure to help. Getting lost, and having trouble with shopping lists, was often apparent before problems with memory or confusion.

Familiar tasks and familiar places may be much easier and mask dementia. The brother of one of the group who has a rare form of early-onset dementia was working as a GP when he was diagnosed with dementia. He was still competent in his work and loved by his patients but had to retire. Many of his patients protested and said they didn’t care!

The importance of a diagnosis and fears about screening.

Everyone, in both groups agreed that a diagnosis helped a great deal. For most, but not all, the relief exceed the anxiety about prognosis, but for those with an earlier onset dementia, for example Pick’s disease, it was a great worry. Some of the carers and those with dementia had been upset by GPs that had dismissed or tried to normalise their concerns as forgetfulness. One carer recalled their GP saying, “Oh my father’s like that, it’s just old age’. They were equally disturbed by the thought of unsolicited dementia screening and thought that older people had been afraid that their GP might use any opportunity to diagnose them with dementia. They were, on the whole, relieved that the planned NHS screening programme had been dropped but felt strongly that someone coming to their GP with concerns about dementia should be taken seriously. Doctors, like everyone else, are value-laden and some believe that forgetfulness is normal or that trying to diagnose dementia in its early stages is futile or impossible. Before my father was diagnosed, I pushed for a diagnosis, but I pushed too soon, he wasn’t ready and I over-reacted after that, thinking that an early diagnosis was futile and harmful. Both groups and I confessed many GPs, shared concerns that even the most sophisticated tests for dementia can be unreliable but it shouldn’t stop us trying to find what’s causing worrying symptoms. Time, attention and re-testing are all important. Those with dementia, whose symptoms were incredibly diverse, wanted me to know that dementia wasn’t just forgetfulness. “We’re all different”, they said, almost in unison. It is often said that if you’ve met just one person with dementia, you’ve met just one person with dementia.

Better relations between doctors, patients and carers.

We talked in both groups about how to improve relations with GPs and I told them that I have found Atul Gawande’s questions from his new book, Being Mortal, slightly modified, incredibly useful. They make other discussions about care so much easier.
(1) What is your understanding of your health or condition?
(2) What matters to you?  Examples might be, staying at home, staying out of hospital or a nursing home, Staying alive long-enough to see your children marry or your grandchildren graduate,  Being able to see your friends, Having the trip of a lifetime, Keeping your interests going as long as possible.
(3) What are your fears? Examples might be; being in pain, getting lost, not getting to the toilet in time, falling over, being alone, dying, not recognising your spouse/ children etc.
(4) What trade-offs are you are willing to make and not willing to make? For example will you do anything to live longer? Take any amount of medication?Spend any amount of money? Take any risks? Where might you draw the line and why?

I think after speaking to the carers today that they are useful questions for a carer to ask the person they care for and to ask themselves. I think doctors should ask them too. I’ve written a blog about how to make sense of risk and what to ask (or tell) your doctor here. In it I suggest that if your doctor doesn’t think to ask these questions it would be really helpful (from my GP perspective) if someone came along to tell me what they thought about them.

I think it’s important to let the person who is affected to answer them. Apart from the obvious fact that it’s their life we’re talking about, it is also, on the whole, much harder for families to let go. In Gawande’s book he notes that about 2/3 of patients with cancer are willing to undergo treatment they don’t want, if their families want them to. In neurosurgeon Henry Marsh’s incredible book, Do No Harm, he gives an example of a young man with a serious brain injury with little hope of survival. He explains that you can ask the family the same question in one of two ways, “What would you like us to do?” or “What do you think your son/husband/brother would want us to do?” The way the first question is phrased you’re asking, “Do you love him enough to care for him after we’ve operated and he’s severely disabled with no hope of recovery?” The second question lifts that burden of responsibility, yet you can love him still.

Thinking about care and carers.

I think the physical, social, economic, emotional etc. burdens of responsibility on care-givers – who are mostly women, unpaid and under-supported, are enormous and without a doubt under-appreciated. The emotional labour of caring for someone with dementia can be enormous. Psychiatrist/ anthropologist Arthur Kleinman writes beautifully about the nature and moral responsibility of caring for his wife with dementia,

My own experience of being the primary caregiver for my wife, on account of her neurodegenerative disorder, convinces me yet further that caregiving has much less to do with doctoring than the general public realizes or than medical educators are willing to acknowledge

The conversations reminded me that I don’t think I am very good at thinking about care. A doctor’s work is mostly diagnosis and treatment, but surprisingly little involves care. One can be caring, but the physical work of care goes on out of sight of many, perhaps most doctors. Kleinman explains that from his experience he has learned that it’s almost impossible to appreciate what goes on if you’re not physically and emotionally involved in giving care yourself. In GP Dr Margaret McCartney’s book, Living with Dying, she describes how the emphasis – driven by healthy young men in policy, politics and research, is driven towards drugs and technology, which diverts resources and attention away from the immediately necessary human support that people need. The carers reminded me of how important it is that GPs care about the carers and one of them told me about someone she knew who committed suicide because of the stress of looking after someone with dementia. I was ashamed recently when a podiatrist form the local foot clinic wrote to tell me that the daughter of one of my patients with dementia cried at his appointment as she talked about how stressed she was. Even though I’d seen her with her father many times before, I really hadn’t paid enough attention to how she was coping. I called her and we met later the same day and I listened to how she struggled to cope. I don’t think I did anything much beyond listen sympathetically, but I am sure that it helped that I knew what she was going through.  It’s important for GPs not to take what patients and carers say at face-value. They want to put on a brave face and want desperately to be seen as coping. As a GP I’d want to validate that but not miss the fact that they really might need help.

Continuity of care.

An issue that was shared between people with dementia and their carers was the importance of continuity of care. It was at least as important for the carers as it was for the people with dementia, because it mattered so much that the professionals involved knew something of the context in which they were living and caring with dementia. In my own practice of 12 part-time doctors and over 13 thousand patients we have, by hard work and determination increased the proportion of appointments where a patient sees their own doctor, from 50% to 80% in 2 years. If we can do it, so can other surgeries. We prioritise people who have long term-conditions for whom it matters most, but try to make it happen for everyone.

The conversations were especially valuable in part, because we were not in a hospital or GP surgery, where the balance of power leans towards the health professionals and participants are more reluctant to criticise those that are responsible for their care. Having a group of people with different experiences and different GPs allowed me to hear about how experiences shared and diverged, about good and bad. It’s easy for me, or any health-professional to assume that our way of working is typical, or that we know about patient experiences because we know our own patients, but this showed me how limited my own perspective can be.

Stepping out of my surgery and into Elizabeth’s house has taught me a lot about how living with dementia affects people and families, and about the importance of context, power and relationships and the nature of care. It was obvious that for those people living with dementia, like my parents, the group is incredibly supportive and I can easily imagine how much groups like this could help carers and people who are cared for, for whom loneliness and isolation can massively add to their work.

I think that health professionals in training and in practice could learn some profoundly valuable lessons from taking a seat among those we are here to serve, and listening to their concerns and their experiences.

The Case for Intelligent Kindness

Here is a link to a wonderful editorial by Penny Campling about the role of Intelligent Kindness in Healthcare. It’s the kind of thing I’d love to have written myself. Please take time to read it and share it.

The virtuous cycle of kindness:

IK

Editorial: Reforming the culture of healthcare: the case for intelligent kindness

by Penelope Campling

Narrative and reflection

Day 2 of Narrative and Medicine

IMG_2285

The first 2 presentations shifted the attention to the flip side of the narrative coin, reflection.

A narrative, in the context of a therapeutic relationship, demands a response. Morally we are duty-bound to act and the action begins with reflection. Reflection comes more naturally to some people than others, but, as the superb presentations this morning showed, reflection encompasses skills that can be taught, but to be of value must be practiced. This paper by Carmen Caeiro and Carla Pereira showed how a narrative reasoning course helped physiotherapists develop understanding of patients’ experiences and themselves as well as embedding reflective practices in clinical practice. I’ve highlighted the last bit because I think it’s of tremendous importance for medical education in general and medical ethics education in particular because reflective practice is embedded in most medical curricula with little evidence about what it’s doing or whether it continues into clinical practice. The power of the hidden curriculum, the culture that socialises professionals into ways of thinking and acting, is formidable. Reflective practices are subversive of culture because they equip professionals with the conceptual tools and deliberative practices that challenge established cultural norms. The presentation by Alan Weber about a narrative and reflective writing course in Qatar, bought this into a sharp perspective.The Qatari poet Mohamed Rashid al-Ajami was jailed in 2012 for 15 years for a piece of public reflection, a poem that criticised governments across the Gulf region in the wake of the Arab Spring uprisings. Alan’s students have grown up in a culture where personal reflection is discouraged and even to begin to teach the skills has been a huge challenge. By critically analysing safe subjects like arts and literature the students developed the confidence and critical skills which they were then able to turn on themselves, the practice of medicine and culture beyond. They chose to write reflectively about issues like virginity examinations, autonomy, sexuality and other taboo issues, some too dangerous to publish, though many of their essays have been published, albeit anonymously in three volumes. It’s easy for us to think about the Qatar students as being something ‘other’, we’re reflective they are not, we can write about controversial subjects, they can not but I was reminded of Rees and Monrouxe’s work with UK medical students’ professionalism dilemmas. They asked students write about unprofessional behaviour they witnessed, which included doctors inviting students to perform intimate examinations on anaesthetised patients without their consent and bullying of students and other professionals. Reports from Kirkup and Mid Staffs about dreadful, unprofessional behaviour should remind us that we have our own taboos which are being uncovered, but all too rarely discussed in a supportive, reflective setting, where something can be done before it’s too late. If we teach reflective skills and embed reflective practices – which as I argue in a forthcoming paper we should, it can help us challenge our own and others behaviour every day. It can undermine hierarchies and make professionals more sensitive to patients’ experiences. Reflective practices teach us humility and show us that there are multiple perspectives and help us reveal them, value them and judge them sensitively and seriously.

IMG_2300 IMG_2301 IMG_2303 embedded reflection

Teaching reflective skills is not easy. When I go to the annual tutors’ day at Barts and the London it’s very common for tutors to admit their lack of confidence. Careiro and Pereira have both undertaken post-graduate studies in medical humanities at the university in Lisbon and involve sociologists and psychologists in their teaching. Their students have an 8 week course and read challenging texts by Kafka and Nietzsche as well as watching films like One Flew Over the Cookoo’s Nest and The Diving Bell and The Butterfly before each small group tutorial. The course was introduced into a new curriculum with the support of their university. For those of us working in long-established medical schools without their skills, replicating their work will be difficult, but far from impossible.

From Dr Interpretive to Dr Discursive

In Emmanuel and Emmanuel’s classic paper about four models of the doctor-patient relationship they describe an evolution from Paternalistic, via Informative and interpretive to discursive. One of the problems about narrative and medicine is that there is a tendency to get stuck on the interpretive. There is a lot of fascinating theory about how to interpret narratives. In the afternoon sessions we heard about narrative’s interpretive limits in a paper given by A. Sile about the book Exploding Into Life by Dorothea Lynch and her photographer partner Eugene Richards. The book, about Lynch’s experiences with breast cancer is illustrated with Richards’ photographs. Neither narrative nor image stand alone, both are different representations of Lynch’s experiences. Later, Richards who was a professional documentary photographer, said that he wouldn’t trust a photograph without text, and one suspects, text without a picture. I was reminded of UK artist Emma Barnard’s fantastic photographic portraits of patients who have had head and neck surgery for her patient as paper project. The photographs are presented on X-Ray acetates and then the patients are invited to respond by writing and drawing on their portraits. What she shows, beautifully and simply, is that patients can be represented in multiple forms by others and by themselves.

Medicine is, of course an interpretive practice, we interpret a medical history, signs and symptoms, blood tests and scan results, response to treatment and so on. And the things we interpret are themselves representations of the ‘thing’ we are trying to diagnose. Layer upon layer of representation and interpretation. Medicine is not a science, or even an interpretive science, though it is informed by science. It is, among other thing an interpretive practice. Kathryn Monrgomery, another narrative medicine pioneer has written about this in her book, How Doctors Think.

In the last paper I heard today, Briege Casey, who teaches a medical humanities course to nursing students in Dublin, described how established pedagogic practices such as Imagework by Iain Edgar and Ekphrasis can equip educators with simple tools to teach students sophisticated interpretive skills. With these we can help to teach wisdom and intellectual curiosity.

IMG_2312

IMG_2313

She finished with a quote from one of her students that is of profound importance to anyone concerned with patient-centred care,

how would your patients choose to represent you?

IMG_2317

Keynote by Rita Charon

Narrative justice, competence and humility.

Day 1 of the Narrative Medicine conference in Lisbon.

N&M

Details of the conference are here: http://narrativmedicin.wix.com/conference2015

This isn’t a comprehensive review for the most part because I struggled to keep up with the Portuguese interpreting, even though it was pretty amazing that they kept it up all day, in time with the speakers.

Narrative medicine is a branch of the medical humanities that has a particular power because clinical practice already begins with a patient’s history which is a natural space where narratives can be introduced. There is no equivalent for the visual or performing arts.  Medicine then shares its power selectively with the narrative medical humanities and we have conferences in beautiful places like the Calouste Galbenkian Foundation. It’s worth thinking about, but I’m not complaining. Not only because I’m here, but because I do find narratives very useful. More to the point, patients and families complain all the time that they are not given the opportunity to tell their story, their version of events, their interpretation of their symptoms, their experience of care, their fears and so on. Narrative medicine is the conceptual toolkit that enables this. It’s worth emphasising that this is not simply a matter of time, though that’s often the excuse that professionals give.

Taking a structured medical history is not the same as allowing a patient or carer (which is of increasing importance) to tell their story. I’ll be publishing a blog shortly about what people with dementia and their carers think about GPs … It’s a medical maxim that 80% or more of a diagnosis is contained in the patient’s history a figure that has barely changed in the last few decades of technological advance. And yet comparatively little close attention is given to what goes on when a history is given and received. Dinosaurs of the medical education establishment barely conceal their contempt for communication skills training and this rubs off on medical students who see it as fluffy and unscientific.

Applying scholarly rigour, Zsófia Demjen and Elena Semino explained how linguistics could reveal unappreciated aspects of the text of Henry’s Demons, a book written by a father and his son who has schizophrenia. Examples included the different types of language used to describe auditory hallucinations and how the overuse of the pronouns like ‘I, me and my’ were associated with a deteriorating mental state. Their analysis made me think that health professionals would benefit from listening more carefully to the way patients describe their symptoms and the words they use, and not just the factual content.

Narrative is not just about how we listen but how we read. E. Koopman interviewed readers who had differing experiences of depression, during and after they read 3 books about depression; The Bell Jar by Sylvia Plath, Mr Chartwell by Rebecca Hunt and The Noonday Demon by Andrew Soloman. What she discovered was that different texts affect different readers in different ways, which may seem obvious, but it is perhaps more of a concern if we think about why different doctors respond differently to a patient with depression. She showed that readers didn’t have to respond emotionally (or with empathy) to develop a deeper understanding of the experience of depression. I’ve long been sceptical about the possibilities of teaching empathy and this adds to my thoughts that it’s more important to teach medical students about how patients experience illness. Differences in the way they respond depend on their experience of depression and their intrinsic empathy, and to the way the depression narrative is told. How a patient might alter their narrative I’m not sure, but it does raise questions about narrative competence.

Narrative competence as commonly understood is the ability of professionals to be competent at taking a narrative history, but it is also how competent a patient is at giving their account. It’s essential for the professional to have narrative competence for the patient to be at ease and have sufficient trust in order to share their story, the professional must be a good listener and ask perceptive questions sensitively. But even with this (probably too rare) situation to start with, some people just aren’t very narratively inclined. Anthropologist Arthur Frank – one of the early pioneers of medical narratives, described some narratives as chaos and Galen Strawson argues that there are deeply non-Narrative people. Some people are natural story tellers, most of us know people who have ‘a gift’ for telling stories, others are masters or mistresses of poetry or literature. Some of us really struggle to find the words to describe our experiences and infants and those rendered voiceless by disease lack narrative competence.

If patients need narrative competence for narrative to ‘work’ then professionals need narrative humility to recognise that there are a usually several stories to be told, including their own, the patient’s, the carer’s, and any others who might be involved. The evening session with Alexandra Cheira, Cecilia Beecher Martins, Marijke Boucherie and Elisabete Lopes reminded me that narrative may be one of many means to justice. Philosopher Havi Carel whose work I’ve found to be extremely helpful  in everyday practice, united the speakers’ concern that health professionals do justice to patients in their capacity as knowers. Carel describes giving justice to their narratives as ‘testimonial justice’ but she also describes ‘hermeneutic justice’ in which patients’ interpretations are actively solicited and taken seriously. This need not involve narrative. Professor of general practice, Ed Piele has developed Values Based Practice in which patients’ and professional’s values are given serious attention and lead to another kind of justice. This session, like those that had gone before reminded me that for justice to be done, at the very least, there should be patients telling their own stories, or turning their analysis on professionals’ narratives and their use of patient narratives.

Nevertheless it is patients’ narratives that are central to this conference and I like to think that another early pioneer of narrative medicine, Arthur Kleinman, would be pleased.

Competition, choice and commitment

4544914097_f47d59c90e_z

Photo © Lee Jeffries flickr 500px

People who were least able to take advantage of competition and choice were,

less educated, less well-off, more likely to describe themselves as struggling financially, less likely to own their own home, less likely to have internet access, more likely to be disabled or a single parent.

They were also more likely to stick with providers with whom they had an established relationship.

They were identified in the Competition and Markets Authority (CMA) report on competition and choice between energy suppliers. Because of the associations between poverty and ill health these vulnerable people also stand to benefit least from competition and choice in healthcare.

Dr Smith was well past his due retirement, but was unable to find anyone to take over his surgery in a pretty rough part of town where he had been a single partner for nearly 40 years. His wife had been the practice manager until she had a stroke and then had to be cared for in a nursing home. He had been struggling to make money from the surgery for the last few years due to the cost of locum GPs and a locum manager. The building was desperately in need of repair. Dr Smith was tired and struggled to keep up with the paperwork, coming into work every weekend and staying late into the evenings. He hadn’t had a holiday in the last 3 years. He had survived his annual appraisals and revalidation by the General Medical Council and he was allowed to continue working even after the Care Quality Commission made a long list of recommendations after inspecting the practice. Like many GPs it was his considered opinion that the only things guaranteed by regulation and inspection were time taken away from patient care and low professional morale. Dr Smith was loved by many of his patients who known him for years and trusted him unquestioningly, though his treatment regimes were often out of date and he was tended to be pretty blunt.

One day, at work, Dr Smith had a heart-attack and died at his desk. When Dr Jones and partners took over his list, they found that the patients were more likely to be,

less educated, less well-off, more likely to describe themselves as struggling financially, less likely to own their own home, less likely to have internet access, more likely to be disabled or a single parent.

They were also more likely to be over 65 and have cognitive-impairment, learning difficulties or long-term mental illnesses. Other patients had changed GP long before Dr Smith retired. They didn’t need Friends and Family tests, NHS choices feedback, ‘I want great care’ or any other on-line rating system to recognise that the shabby waiting room and the ever-changing locum GPs weren’t ‘great’. But many of those that remained valued the long relationship that they had with Dr Smith and everything they had been through together. A fair few had been born at home and delivered by Dr Smith – twenty or thirty years ago it was common for GPs to deliver babies. He had cared for their parents and grandparents, their children and grandchildren. Personal care from a doctor they considered a family friend was of more significance than anything that could be measured and listed on a GP comparison site. According to the CMA report, energy consumers who valued long-term relationships based on trust and familiarity were also not served well by competition and choice.

The NHS is founded on the basis of equality and fraternity but liberty, as defined by competition and choice are new values for the NHS. ‘Liberating the NHS’ was the name of the 2010 government white paper that preceded the NHS Act, and the focus on liberty has increasingly eclipsed equality and fraternity. Competition and choice are enforced by a new NHS organisation called Monitor and strongly advocated by government advisers including Tim Kelsey, National Director for patients and information and Andrew Taylor, founding director of the NHS Competition and Cooperation Panel and now adviser to NHS providers on competition issues.

A situation where there is less transparency and no choice between providers cannot reasonably be defended, but questions need to be asked such as, What is the point of competition and choice in healthcare? Why must it be enforced? Who will benefit and who will lose out? What if patients don’t want to behave like consumers? What are the alternatives?

The point of choice is that it demonstrates respect for autonomy. Proponents argue that since quality between providers of care varies, patients have a right to know who is best so that they choose accordingly. They argue that if patients choose the best or cheapest providers then all providers will have to increase their quality or reduce their costs to stay in business. When choosing energy supply the cost is not the only consideration, though you wouldn’t know it from the CMA report. Other issues include ‘green energy’ and customer service and the confidence that comes with staying with an established provider.

When choosing healthcare, measuring quality is extremely difficult. Other factors like access, location, continuity or ‘customer service’ may be more important or even conflicting. For example, a service with better continuity of care – assuming such a thing is measured, may be hard to access. Quality, whatever that means, may not be the same as ‘what matters’, because what matters to a young mother joining a GP surgery may be very different for a working man with diabetes or a frail, elderly couple. ‘Choice’ when you are having a miscarriage, when you’ve broken your neck, when you have cancer or when you’ve got depression, hepatitis and diabetes all together or if you are housebound with severe agoraphobia and heart-failure may have very little to do with choice of healthcare provider and a lot to do with the quality of the relationships you have with health professionals. Leaving Dr Smith who has looked after you for 20 years because Dr Jones has got a better CQC report doesn’t make so much sense when you think about the importance of therapeutic relationships.

Healthcare is, for the most part, dependent on the quality of relationships between patients and professionals. It is interactional and cooperative. It is full of uncertainty about the nature of the problems and what should be done. More than ever it is about the care and support of patients with multiple long-term conditions in which long-term therapeutic relationships are most important. At other times care is for emergencies in which speed, not choice is key. Less often health care is transactional -for example when a patient has a clearly defined problem and is in need of a standard procedure for which outcomes are relatively easy to measure and relationships relatively unimportant. Here competition and choice may have value. But for most health care, the relationships between patients and professionals are both complex and caring and depend on mutual trust and respect and time to get to know one another.

Both the CMA and those directing health policy are of the opinion that the problems of choice and competition can be overcome by offering more choice and making it easier to choose at the same time as increasing competition. Underlying their bullish confidence is the morbid conviction that online league tables are more trustworthy than human relationships. Even more disturbingly, because choice and competition can be taken advantage of by the powerful far more easily than the vulnerable, the gap between them will be forced ever wider.

See also:

Competition, choice and quality in general practice

Patient centred care, rhetoric and reality

What’s the point of patient choice?

What’s in a name? Patients, clients or consumers?

High profile public reporting of quality doesn’t affect choice of maternity services