General Practice after the election

General Practice after the election. (First published on the LMC Newsletter)

In 2008, Professor Don Berwick wrote in the British Medical Journal,

Reinvest in general practice and primary care—These, not hospital care, are the soul of a proper, community oriented, health preserving care system. General practice is the jewel in the crown of the NHS. Save it. Build it.

His advice was ignored. The NHS has an unprecedented funding-gap of this governement’s own making and it has no credible plan to fill it. General Practice is in a parlous state: one in three GPs are planning to retire in the next five years, one in three training posts and one in six vacancies unfilled. Older GPs are retiring early and one in five younger ones are emigrating and many more are choosing to work part-time. The loss of MPIG could force dozens of practices to close. The consequence is that the remaining GPs cannot cope. Something has to give.

What GPs want, according to the recent BMA survey is more time with patients, with 80% ranking continuity of care as essential. They said they needed more core funding, longer consultation times and a reduction in bureaucracy. GPs are attempting to practice relationship-based, patient-centred care in an increasingly performance and guideline-centred NHS. This is in the interests of neither GPs nor patients.

In 1992, Julian Tudor Hart asked rhetorically,can contexts for clinical decision-making be structured so that doctors’ interests coincide with those of patients individually and society collectively?  He knew that the solution would “require revolutionary changes in the way care is conceived, organised and resourced.”

GPs are still reeling from the last revolutionary re-disorganisation that was the 2012 NHS Act and there is very little appetite for radical change. Having said that, British General Practice has been, in large part because of its independent contractor status, favoured by 82% of BMA respondents, incredibly innovative and new models of federating and networking are actively growing. The vast majority of GPs, despite their political differences, are deeply committed to their patients and still find great satisfaction in spending time with their patients. Our future resilience depends on the quality of this time.

It is very unlikely that there will be enough GPs to continue working the way we are. We could work a lot more efficiently by being better prepared for the patients we see, either by speaking to them on the phone or by employing community health workers/ health trainers/ physician assistants. Patients who need help with housing, benefits, hospital appointments, lifestyle changes, minor illnesses, a blood test, blood pressure check or other weights and measures could get help with all these things without having to make their case to a GP. There was a pilot project in Wales for community health workers, physician assistants are being trialed and Turntable health makes good use of them. But it is not yet clear how they can best work with primary care teams, whether they represent good value for money or whether sufficient numbers could be trained. Experimentation needs to be combined with evaluation.

What then do we want from the new government?

  1. Trust and support. As Don Berwick said in his report on Mid Staffs, “[the government] should foster whole-heartedly the growth and development of all staff, including their ability and support to improve the processes in which they work”. Money presently wasted on inspection and regulation should be spent on education, research and support.
  2. Outcomes that matter. In her essay, Arm in Arm with Righteousness, Iona Heath warns that “we risk destroying quality in healthcare in our attempts to measure it”. We should stop measuring things that don’t matter and start measuring those that do.
  3. Fair funding. For one thing, funding should reflect workload. For another, “Despite being an oft-repeated command to dying institutions, the ability to do more with less is an inherent impossibility”. The government’s pledge of 8am to 8pm seven day a week GP access is an inherent impossibility.

There is nothing the government can do to increase the numbers of GPs, but it can help to make general practice a more attractive career. Then the new GPs will come.

Power in the consultation

I called in my next patient, Jane and she sat down in front of me and we shook hands. Instead of letting go, our hands slipped back a little and our fingers interlocked, our thumbs raised …

“I’d like a referral to see a specialist”

She came out straight with it before I’d had a chance to ask her how she felt or how I could help. Her thumb twisted around the back of mine and pulled it down. One-nil.

“Ok” I replied, not being committed into an outright refusal or straightforward acceptance. Our thumbs circled, she pulled hers back defensively. “How did the FODMAP diet go?” I asked.

“I didn’t try it”, she replied brusquely, “You don’t even know what’s wrong with me and you said the blood tests were normal” Her thumb snapped down, but I pulled mine back just in time.

There was a sharp tug on my left arm, twisted behind my back. “Fill in the alcohol template,” a voice behind me hissed. A box in the corner of the computer screen listed the boxes I had to tick before Jane left the room.

“So, um, how much alcohol do you drink on an average week?” I asked and the grip on my left arm relaxed slightly.

“well …” Jane paused, I circled my thumb clockwise sensing she was getting off-guard. “I’ve been drinking a bit more lately, things have been pretty difficult at work and John and I have been arguing quite a lot since he did his back in and hasn’t been able to work”.

“I’m sorry to hear that”, I replied, genuinely sorry. “How bad has it been?” I could have beaten her then, thumbs-down, but it didn’t seem fair.

“You don’t know anything! She could have cancer!” several voices screamed through the window, a copy of the Daily Mail was pressed up against the glass. I jumped in fear and surprise and Jane nearly caught my thumb under hers again.

I quickly composed myself and tried to ignore the din outside and focus on Jane instead.

I tried to concentrate on her answer, but the door flew open, and several patients were stood outside, “I’ve been waiting for twenty minutes”, “You’ve got my prescription wrong”, “My sick-note’s run out”, “When are you going to visit my mum?”

I turned back to Jane, just as my left arm was yanked higher up my back. “She’s overdue a blood-pressure check, that’s £3k you’ll lose for the practice if you don’t hit the target for this year”, the voice behind me growled.

“Could I just check your blood pressure?” I asked. Patients rarely object to have their blood pressure checked even if it’s entirely irrelevant to their presenting complaint. We let go of each other’s hands briefly while I fitted the blood-pressure cuff.

“You’re only in it for the money! You don’t care about patients!” The taunts from outside had reached a hysterical pitch and copies of the Express and Telegraph were shoved through gap at the top of the window. “A nurse could do your job!”

I straightened up and tried to ignore them. “I guess you’ve read some stuff online about what might be causing your symptoms?” I suggested to Jane as I unwrapped the blood pressure cuff.

“Actually, I haven’t”, she confessed, “You know what it’s like, whatever you put into Google, before long you’ve come up with cancer, and that just gets you worrying. You must hate it when your patients look things up online”.

I laughed gently, it’s funny how often patients say that to me. I replied,

“No, no – really I don’t, but sometimes I think it’s like a law of the internet that whatever symptom you’ve got, you’re never more than six clicks away from cancer”

Our thumbs hovered, neither sure whether to strike.

Someone had pushed their way through the crowd of patients at the door, “You’re needed now, at the commissioning meeting” they barked angrily, pointing at the clock on my wall.

A pain shot through my shoulder as my arm was twisted even tighter, “You need to document their blood pressure and a five year follow-up on the other template and give them smoking cessation counselling”

“Thirty year old woman DIES from bowel cancer after seeing her GP THREE times!” Someone outside the window shouted.

I couldn’t think clearly. I looked at Jane and struggled to think of what next to say. Our thumbs hovered. “What do you think I should do?” She asked. Her thumb rested on my index finger in submission. “You know what I’m afraid of, I don’t want it to be cancer, I just want to feel better”.

___________

Now is a good time to be thinking about power in the consulting room. Patients are learning to be assertive consumers, NHS England and commissioners are demanding evidence that we are ‘performing’, the government is devolving public health interventions from the state to the consulting room and the media is whipping up resentment towards professional power. It is easy for doctors to think of themselves as victims, but as John Launer warns,

Even in the era of shared decision making, the vast majority of consultations are led by the doctor’s beliefs about what it is right to investigate, how it is best to treat the patient, and when to make an onward referral. All of this power may be different to the kind of power exerted upon us by governments and managers. But it is still power, of a special and privileged kind. If we cannot recognise that it infuses most of the encounters we have during our working lives, we may be at risk of abusing it.

In the scene I described above the only battle the doctor could possibly win was with the patient. Unable to do anything about the bureaucratic burden imposed upon us, we may be at risk of venting our frustration on our patients.

Another reason we might blame our patients is because, as Richard Smith pointed out in 2001, we’re still hanging on to a bogus contract,

The bogus contract: the patient’s view

  • Modern medicine can do remarkable things: it can solve many of my problems
  • You, the doctor, can see inside me and know what’s wrong
  • You know everything it’s necessary to know
  • You can solve my problems, even my social problems
  • So we give you high status and a good salary

The bogus contract: the doctor’s view

  • Modern medicine has limited powers
  • Worse, it’s dangerous
  • We can’t begin to solve all problems, especially social ones
  • I don’t know everything, but I do know how difficult many things are
  • The balance between doing good and harm is very fine
  • I’d better keep quiet about all this so as not to disappoint my patients and lose my status

The new contract

  • Both patients and doctors know:
  • Death, sickness, and pain are part of life
  • Medicine has limited powers, particularly to solve social problems, and is risky
  • Doctors don’t know everything: they need decision making and psychological support
  • We’re in this together
  • Patients can’t leave problems to doctors
  • Doctors should be open about their limitations
  • Politicians should refrain from extravagant promises and concentrate on reality

At last week’s inspired Imperial college GP training day, author and lugubrious self-confessed addict Will Self and I talked about doctors and power. If there was a ‘bottom line’ to Self’s presentation it was about this bogus contract. “Imagine”, he asked us, “if instead of billboards over the North Circular exclaiming, ‘We’re going to win the war on cancer!” we were more honest and said, “We’re all going to get cancer if we live long enough, and we’ve all got to die eventually!”

Part of the reason the bogus contract still exists is because of, as Self put it, the deep reverence with which many patients hold their doctor. Our earliest experiences of the medical profession are often as a frightened, febrile child bought by an anxious parent to a calm, authoritative figure who makes things better.

As Edward Ernst recently explained, a great deal of what makes patients feel better is to do with power and personality including the therapeutic relationship with the clinician (empathy, compassion etc.), and social desirability (patients tend to say they are better to please their friendly clinician)

The therapeutic relationship was described by psychoanalist Michael Balint, who used the term, ‘doctor as drug’. Like any drug there are indications (where it can be used), contra-indications  (where it should not be used), risks (including tolerance and dependency) and side effects (including irritability and rejection or intoxication).

Used appropriately it is a potent force for good and as Foucault noted,

What makes power good, what makes it accepted, is simply the fact that it doesn’t weigh on us as a force that says no, but that it traverses and produces things, it induces pleasure, forms knowledge, produces discourse. It needs to be considered as a productive network that runs through the whole social body much more than a negative instance whose function is repression Foucault 1984: a 61. Quoted from DA Lupton

Physician Edvin Schei agrees,

The structural and symbolic power of doctors is what makes good and right healing actions possible. 

Doctors know that without power, they will lose their potency as therapeutic agents. Self argued that patients might resent this just as they secretly desire for their doctors to retain their magic. There is an ambivalence between reverence and scepticism in their regard for the medical profession.

Most of us agree that power is unavoidable and inevitably stacked in the doctors’ favour, not only over patients, but also over nurses and other health professionals and far beyond. Unfortunately we don’t do enough to teach medical students and doctors about power and how it is used. As Kathryn Montgomery agues in her wonderful book, How Doctors Think, we don’t do encourage medical students to challenge the philosophical assumptions which underpin the practice of medicine. Medicine is neither art, nor science, but an interpretive practice that makes use of clinical reasoning, but we teach it as if it were science treating disease rather than people treating people.

Sara Donetto studied medical students’ conceptions of power in the doctor-patient relationship and discovered that they were severely limited, viewing the imbalance as a consequence of patient ignorance that could be solved by professionals educating them. It was striking that my second-year medical student’s learning objectives included ‘giving lifestyle advice to patients’, but didn’t include anything about understanding values or interpreting narratives, in other words making sense of other people and themselves. Many medical students, and for that matter, doctors, are stuck on the second of Emanuel and Emanuel‘s four models of the doctor-patient relationship, ‘Dr Informative.’ Dr Informative’s conceptual development is stranded, as the authors noted back in 1992 and Self concurred today, on a model where both doctors and patients are rational consumers. It’s a thinking that underpins much of the policy thinking that shaped and continues to drive the recent NHS reforms and is a source of despair to those patients and professionals who know that there are higher levels to which we should aspire.

Patients and professionals as partners.

In 1998, GP Julian Tudor Hart wrote,

Progress in health care depends on developing professionals as sceptical producers of health gain rather than salesmen of process, and on developing patients as sceptical co-producers, rather than consumers searching for bargains.  Productivity in health care depends on complex decisions about complex problems, involving innumerable unstable and unpredictable variables.  These decisions require increasingly labour-intensive production methods, with ever deeper, more trusting and more continuous relationships between professionals and patients.

Doctors themselves have an ambiguous relationship with power. The reverence we enjoy can just as easily make us feel uncomfortable. Scepticism shared about, for example surgery for back pain, can be mutually reinforcing, but scepticism about the doctor’s clinical judgement is unsettling. My second year medical students described feeling uncomfortable with the trust and apparent reverence shown to them by a patient who revealed what it was like being severely depressed. They felt that they hadn’t earned the power that this trust conveyed. Bearing witness to intimate stories is a form of pastoral power. Handled sensitively and skilfully it can be enormously supportive and empowering for patients, but it can easily be abused.

Self raised the idea of the therapeutic state which is a form of Foucault’s idea of governmentality in which the state devolves responsibility for public health and action on the upstream social determinants of health like housing, education, nutrition and economic security down to individuals. Moral pressure is exerted on patients to behave in ways that fulfil public health objectives, so that obese individuals have to become thin in order to reduce the pressures on the NHS and contribute more to the economy. Pressure is exerted on patients who confess to their sins of being a burden, and then promise to repent by losing weight, returning to work and helping themselves.

It was interesting to watch the medical students reflexively slipping into role, most of them remembered their learning objective to give patients lifestyle advice at the same time as they interrupted their patients’ confessions. Like many more experienced healthcare professionals, they launched into this without exploring their patients’ priorities, or wandering too deeply about the efficacy of their advice, much less the philosophical basis of their practice.

Requiring the medical professional to put the needs of the state before the concerns of the patients in front of them undermines what could be an effective therapeutic relationship, but it’s not the only barrier to effective partnerships.

Because we don’t teach healthcare professionals to challenge the philosophical, political and economic foundations of their practice, they are insufficiently self-critical and sceptical about medicine’s role and purpose. This impedes their ability to be sceptical partners with their patients and makes them anxious and defensive when challenged, rather than interested and engaged. Insight is a teachable skill. Forced to act in an increasingly commercialised health-service patients are recast as consumers of health care rather than producers of health gain. The front line also becomes a battle-ground where clinicians are forced to protect limited NHS resources from demanding patients who want too much. Under conditions where patients pay for their care, they are encouraged to consume more medicine than they need. Commercial healthcare is incompatible with therapeutic alliances.

We have to live in a real world where both reverence and scepticism can co-exist. Without trust we will have nihilism and adversity; without scepticism we have ignorance and abuse of power. Trust and scepticism can flourish in partnerships which themselves depend on consultation times that allow doctors and patients to educate each other and continuity of care to allow them to get to know one another. Given more time, we could do a lot more to help patients and more to help patients help themselves.

The real question is, can contexts for clinical decision making be structured so that doctors’ interests coincide with those of patients individually and society collectively?

Julian Tudor Hart

Other reading: 

Arm in Arm with Righteousness. Iona Heath http://www.peh-med.com/content/pdf/s13010-015-0024-y.pdf

Why are doctors unhappy? Richard Smith http://www.bmj.com/content/322/7294/1073?sso=

Doctors as victims. John Launer http://pmj.bmj.com/content/89/1049/182.full

Power and Powerlessness. John Launer http://pmj.bmj.com/content/85/1003/280.full

Unhappy doctors and what can be done. Nigel Edwards http://www.bmj.com/content/324/7341/835

Foucault on the case: The Pastoral and Judicial Foundation of medical power. http://www.ncbi.nlm.nih.gov/pubmed/15666081

The idea for the thumb-war between doctor and patient came from the play Who Cares at the Royal Court

On (not) blaming patients

Should doctors blame their patients?

(edited version published as a debate piece on Pulse Today)

Working in Hoxton in one of Hackney’s most deprived wards, where the high rates of alcohol and drug abuse, cigarette smoking, domestic violence, child abuse and all kinds of other criminal behaviour may give me more reason than many GPs for finding fault and blaming my patients, I would like to argue, briefly, that blame is not helpful.

One doctor whose patients have more reasons than most to be on the receiving end of blame is Gwen Adshead, consultant psychiatrist at Broadmoor hospital. The violent crimes her patients have committed put our patients’ ordinary misdemeanors into perspective. She describes the dividing line between good and evil in an inspiring presentation for the Forgiveness Project.

There is, I think, a distinction between blaming someone and holding them responsible. Blame implies a finality, “You’ve bought this on yourself and you’re on your own now.” As doctors, we are bound to work with patients who may be blameworthy, but they may also be vulnerable and so it is not good enough for us to cast blame when we could be helping them take responsibility. This is what Adshead does by helping her patients move on from a position of “it wasn’t me, it was my illness”, to ‘it was me, but it was an old me and I want to engage with a new me”. Understanding why patients behave the way they do and engaging with them and helping them take control is hard, therapeutic work and it is part of doctoring. But this takes time and energy that many of us feel we are desperately lacking.

Adshead’s patients like many of our own patients are no strangers to blame, fuelled by media and political rage against the poor, the obese and now immigrants with HIV for being a burden on the NHS and the economy. Blame and shame are internalized and the harshest criticism is often self-imposed.

We should also be concerned by how blame affects us because blaming others is both symptom and cause of our own unhappiness. When we are overwhelmed we tend to blame our patients for demanding too much, but consultations where our patients are blamed leave both parties feeling miserable. Refusing to blame patients is a way of showing compassion for our own distress.

It is interesting, but unsurprising that one study of GPs who work in challenging areas found that,

Doctors were motivated by the belief that helping a disadvantaged population is the ‘right thing’ to do. They were sustained by a deep appreciation and respect for the population they served, an intellectual engagement with the work itself, and the ability to control their own working hours (often by working part-time in the field of interest). In their clinical work, they recognised and celebrated small gains and were not overwhelmed by the larger context of social disadvantage.

I recently reviewed some qualitative papers that looked at parents’ experiences of consulting with sick children. Parents were acutely sensitive to accusations of timewasting and hated being made to feel stupid for consulting either when their child was not sick enough to be worthy of the doctors’ attention or so sick that they had left it too late. The conclusion I drew from the papers was that what parents wanted from doctors was not just reassurance, but confidence. It was of little use to know that their child was OK at the doctors when what they wanted was the confidence to know that they would be able to cope with a sicker child later on. Giving confidence is empowering and empowering parents helps them take responsibility. Humiliated parents are disempowered and leave anxious and upset. The next time their child is unwell, they seek help elsewhere in the hope that their fears won’t be belittled or dismissed.

It is frequently claimed that there should be no rights without responsibilities driven by a steady rhetoric of the powerful telling the powerless how to behave. But it is with power that responsibility lies. The powerful can access what they need or desire through force, wealth or contacts without resorting to rights. Rights are to protect the powerless and are therefore unconditional. When we talk disparagingly about ‘the entitled masses’ or ‘rights without responsibilities’ we miss this important distinction. Our patients need empowerment not blame. The right to compassionate, empowering care is unconditional. It is at the heart of why the NHS is so precious. And if the NHS is to be sustainable for the future, patients and professionals need to be partners, not enemies.

Starving you back to work: Why Tory policy of cutting benefits if you refuse treatment is vile

abetternhs:

Really important blog by Alex Langford. Worth reading with this paper about patient perceptions on patient-centred care and quality improvement: http://www.biomedcentral.com/content/pdf/s12913-015-0770-y.pdf

Originally posted on The Psychiatry SHO*:

The Tory manifesto it out. Like many others I was immediately drawn to page 28, where David Cameron explains how he will ‘help you back into work if you have a long-term yet treatable condition‘. But their spellchecker must be on the blink because they obviously don’t mean ‘help’, they mean ‘threaten’.

‘We will review how best to support those suffering from long-term yet treatable conditions, such as drug or alcohol addiction, or obesity, back into work. People who might benefit from treatment should get the medical help they need so they can return to work. If they refuse a recommended treatment, we will review whether their benefits should be reduced’

The idea of starving sick people back to work was first raised by the Tories last year, but despite the fact that it went down like a sack of lead crap, they’ve stuck with it.

I viscerally…

View original 483 more words

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.