Monday, 17 December 2012

A little bit of sport can go a long way

In this season of indulgence, I am going to indulge myself with a monologue on sports, and the meaning it can hold.

Bradley Wiggins won the Sports Personality of the Year award last night. He was the first Briton to win the Tour de France, and followed it up 9 days later with a gentle peddle to win the Gold medal in the Olympic time trial. He was my hero, before the Olympics, and remained it afterwards. He beat Andy Murray, our first grand slam winner for a million odd years, and Jessica Ennis, who for years has lived under the cloud of expectation, that seemed to assert that as she is both hugely talented, and also has a nice smile, that it was destiny to win the heptathlon in London. Have a look at footage from the moment she crossed the line in the final race of the event: was that joy or relief that we saw flicker across her face?

Across several hours of saccharine, and late running reminiscence of the last year of sport, clear themes emerged: people are emerging from a dream-like state, and it was clear that many of these sports men and women are starting to wonder whether it happened at all. Pain, sacrifice and support all emerged as prevalent sentiments. I particularly enjoyed the phlegmatic Brownlee brothers talking about how they had gone running for a couple of hours that morning, not because they wanted to run for a particularly long time, but because they got lost in West London, and decided to carry on until they found somewhere that they recognised.

But perhaps what was most telling was how many people cried. Even Teflon Coe delivered his elegantly smooth speech with tears in his eyes. This stuff matters.

But why? It's just sport. But that's the point. It matters because it is defined as a personal test. Without distraction, sport is the arena in which you show yourself how far you can go, how hard you can push yourself, and how well you can handle the pressure. Those elite sports men and women we celebrated last night had laid themselves open to scrutiny, to the risk of failure, and won. I imagine they found out things about themselves that they never knew: they discovered limits, new heights, new resolve and performances that at times they must have doubted they had.

It is the purity of sport that makes it so engaging. At an amateur level, we compete and play because it is fun, because it keeps us fit, and because it allows us to vent our competitive spirits. At an elite level, they compete to win. And we watch them, because we want to see them win.

The concept of plucky British losers is a fiction. That is the explanation given after the event of people who lost because they did not prepare well enough.

And this I think is the legacy from this year of sporting triumph: preparing hard does not guarantee you will win, but without it, you are unlikely to shine. Winning is not everything, but giving a good account of yourself means a huge amount. There is glory in winning, but more importantly, there is glory in giving yourself up to be as good as you can be, however far that takes you.

Tuesday, 11 December 2012

The shame of shame

Jacintha Saldanha is dead.  That much we know. I imagine that Mel Greig and Michael Christian, the radio DJs behind the prank, are also full of remorse. But that won't bring Jacintha back. The anguish of her family can only be compounded by the lingering sense of waste - that she felt her only option was to take her own life speaks volumes of the way she felt, or the way she was made to feel, about the mistake that she made. In fact, I still wonder whether the action of transferring a call to a colleague could actually be classed as a mistake at all. Judgement about that lies in details that I do not have.  

Life is full of unintended consequences. No one predicted that a hoax call to a hospital, made in the name of entertainment, would cause a woman to take her own life. And I don't imagine that the hospital predicted that this is what would happen. Who knows what kind of feedback and support Jacintha received - and no doubt people who spoke to her after the event are reflecting on what they said and did, and what they could have done differently.

Remorse and guilt are feelings we should all have experienced. They follow on from those moments one wishes they could do again - those times when shortcuts or risks that you took failed to come off. When looking back, the decision you took seemed crazy, but at the time it felt like the right thing to do.

In some walks of life, the price for failure can be high. In medicine, it seems that the fallout from getting things wrong is big. Often it is - it is people's lives and their health that we are dealing with. Fear of failure encourages doctors to be more aggressive in how they investigate and treat problems. The moral offset is that iatrogenesis is easier to come to terms with from the perspective of the practitioner, than fallout from inaction. Missing the diagnosis, or not doing 'everything' is considered worse that causing harm with the tests and treatments. This might sometimes be right. But it might sometimes be wrong. It really depends on the patient. And this is where Al Mulley's concept of 'preference misdiagnosis' comes in: we can only know what the right action to take is if we have spent time helping the patient to understand what it is that they want.

The communication involved in making the right preference diagnosis can be complex and time-consuming, and we don't do it well enough at the moment. Patient preference also gets confused sometimes with the preference of relatives, which often overlap with those of the patient, but not always.

But no matter how good we get at communicating risk and benefit to patients, there will always be occasions where treatments don't work, complications occur, or diagnoses are missed. And that's just the broad-brush stuff - along side all of these headline mishaps, are the day to day events that as doctors you wish you could have done better - the phrasing used, the brief snap of impatience, the wrong assumption made when describing a problem to someone. The list of potential pitfalls is endless, and yet we work in an environment, where people can display the belief that the inflexible demand for perfection makes perfection possible.

Men and women perform as well as the system allows. Issues that are often labelled as personal failings would perhaps never have happened if those individuals had been afforded better support, better back-up or more understanding from the people that they work with or for.

We will always get things wrong. I think we should aim high. But I am also convinced that nervousness about making mistakes makes mistakes more likely. People perform better when they are relaxed, happy and supported. It is only possible to be relaxed and happy if the support really kicks in when bad things happen.

I don't know whether someone put their arm around Jacintha and told her that it was OK, or whether she got a telling off. I don't know whether it would have made a difference, but it would be comforting to know that she was given support and encouragement, and that perhaps her despair came from somewhere else.

Being supportive is not about forgiving idleness or carelessness, but does perhaps rely on making the assumption that people in general, are trying their best, and that they do not want to get things wrong.

Wednesday, 28 November 2012

Imagine the perfect future, and then ground it in reality

Forgive my absence. Perhaps there is nothing to forgive. But I am back now, and a whole bunch of things have happened: I have secured my first Consultant post, starting in February. I have revelled in the thrills and spills of fatherhood. And I recently got the runners up prize with @tobyhillman in the Finnamore F20 prize, which asked us to discuss what healthcare should look like in 20 years time, and how on earth we make the necessary changes.  

Toby and I thoroughly enjoyed letting our imaginations run, and then trying to work out how we could make the vision a reality. We obviously did OK, but it would appear that one other entry did better, and to them goes my heartiest congratulations. I read their piece - it was a force of reasoning and research, and rather like watching someone else win the London marathon - I was vicariously breathless and thrilled at their achievement.

But from the relatively privileged position of thinking what the future of healthcare should look like, and what we should be aiming for comes the real world challenge of continuing to deliver health care in the current climate.

One thing struck me from my thinking around the subject: I spend much of my time at work helping elderly patients recover from their acute ill health. I spend time getting to know the patients, and how their illnesses respond to treatment. I then discharge them, and have nothing to do with them until they are readmitted to hospital. Perhaps I am over-rating the input I can have in managing patients during periods of relative wellness, but it seems to me that for my input into a patient’s care to be triggered they have to get rather poorly. There seems to be some sense in having the chance to respond sooner and at lower levels of acuity - to cut the major exacerbation or relapse off at the pass.

Current structures of care do not support the kind of collaborative, cross-boundary working that make the kind of delivery of care that I allude to possible. In particular, there is a major chasm in the delivery of healthcare formed by the different contracts that GPs and consultants work under. This might at first glance appear to be a minor issue, but its impact and effect is deep-rooted, and it makes it much more difficult for consultants in particular to work across boundaries.

We also need to have the right kind of care commissioned. We are entering a new world  of commissioning, and I doubt that many people are really that confident how it will all turn out. Just as the PCTs were getting good at commissioning, they are being disbanded, and it is difficult to shake the perception that we are starting again from scratch. The idea that GPs will have a significant role in the commissioning of care has resonance, but it is also a concern. Expert commissioning is not a part time role - it is not something that doctors have trained to do, and it is not something we can expect them to able to just do without considerable training and support.

I was struck by the risk that GP commissioning potentially poses when a GP involved in one of a local CCG told me that I shouldn’t get too comfortable at home on my nights on call as a consultant, because they were planning to commission hospital consultants to be on site 24 hours a day.

Flippantly, I asked him whether he was also commissioning pigs to fly. The point is this: commissioning is not just about writing a wish list of what you would like: the reality of having consultants on site at night means paying for that time, paying for more consultants to cover the work that needs to be done in the daytime, and also makes a statement about the importance of the acute care pathways with respect to the other work that consultants are engaged in.

Acute care is important, but so is the work that we need to do in the future to reduce the demands and use of the acute pathways, by managing chronic conditions better, pre-empting deterioration, and meeting the needs of patients away from the hospital. These work flows will become impossible if your consultant body is either working the night shift, or enjoying the inevitable time off afterwards.

Ask yourself this: if the full time consultant contract is 10 PAs a week, and a night shift is 3 or 4 PAs, where are all the consultants that will be needed to fulfill the rota requirements and the daytime work going to come from?

The way we deliver healthcare needs to change, and it will change considerably. But it needs to be grounded in what is both feasible and desirable.

Sunday, 11 November 2012

Blame the system

A couple of mornings ago, George Entwistle was given a going over by Charlie Stayt on BBC Breakfast. It was nothing like the going over that he had been given by John Humphrys on the Today programme, but it made him squirm.

We’ve seem George squirm a lot in recent weeks. It hasn’t been pretty, and at times it hasn’t seemed fair. But what was interesting about this particular episode is that Charlie was attacking him for expressing the sentiment that in the light of the Newsnight fiascos, it was important to see where the systems had failed, and seek to address them.

The answer that Charlie appeared to want was that George would seek out the individuals to blame, and punish them.

I suspect that this would have been part of George’s approach, but it is clearly not his manner to approach the issue in such an overtly belligerent fashion. In fact his managerial style seems to have been much more gentle than that, and right now, that is not what people want from him. They wanted to see him rattle his sabre, and make a bloody nuisance out of himself, to create the impression that something had been done.

There is something to lament among all of this. I can’t deny that George did a poor job of painting a good picture of himself - at times it was excruciating to see. But there is something about blame that he gets, that you see very few people publicly acknowledge. He tried to maintain that the decision-making behind Newsnight was a function of the system that exists. He placed a great deal of emphasis on systems, and how they work. A lot of the answers that he gave seemed to centre on sorting out the system, rather than focusing on the individuals. He appears to have been mocked and vilified for doing that, but I think he has been treated a little harshly.

A chap called Paul Batalden is credited with the quotation, ‘every system is perfectly designed to get the results it gets.’ It’s a good one. He wasn’t trying to say that every system is perfectly designed, but rather the product of a system is never better or worse than one could have expected, providing that one has a good understanding of how the system works.

It seems that we put an awful lot of focus on personal responsibility, and in particular, on personal blame, but we rarely pay much attention to the set of circumstances that lead to people making the decisions, or taking the actions that lead to scrutiny.

This is something that affects us a great deal in healthcare. Sometimes, the price for failure is high, and sometimes people make decisions, or take actions that result in harm. It is easy to spend time reflecting on the specific decision or action, but it is much harder to spend time reflecting on the circumstances that led to the person making that decision or action.

Every time a doctor makes a mistake, there are a whole range of factors at play, and you can perhaps boil down the issue of blame to a single question: did the working environment that that doctor was working in maximise the chances that he/she would make the best possible choice for the patient he/she was treating. If the answer to that question is ‘yes’ then it is perhaps valid to focus on the decision made by the individual, but if the answer is ‘no’ (and I would expect this to be the answer most of the time) then at least some of the reflective time needs to be spent on examining how the performance of that individual could have been improved by the environment that they work in.

Personal responsibility still exists - there is no excuse for individuals being reckless, lazy or unkind, but we need to recognise that individuals will perform better if the circumstances around them support their efforts.

George Entwistle clearly understands this, which is why it is a shame he felt he had to resign. I would have been interested to watch him see through a process of rehabilitation that was not founded only on blame, but recognised the need to focus on systems.

Tuesday, 23 October 2012

Production line surgery - curse or cure?

Last week, the BMJ featured an article on the Narayana Hrudayalaya hospital in Bangalore, and the training opportunities that might be available to British based surgical trainees, who have found their theatre time severely limited by the European Working time directive. In hospitals in India, surgical trainees have the chance to pull long hours, performing high volumes of procedures. In surgery, as in most acquired skills, practice makes perfect.

The enterprise is the brain child of cardiac surgeon Devi Shetty, and to hear him talk about how he approaches his business is remiscent of Victorian philanthropists, who sought to solve societal issues with the application of their wealth, and their logic. They offer low cost, effective treatments, and they never turn any one away because they are unable to pay. Those who cannot afford the care are subsidised by those that can.

I don't know Devi Shetty personally, but I can make a guess at some of his character traits. He is clearly clever, entrepreneurial and hard working. He is also committed to his cause, and importantly, he is unsentimental. He has to be: in striving to offer high quality health care to people who have neither the access nor the funds to access it now, he has clearly decided that the quality of the care they receive trumps some process niceties.

Thus, all of the operations in his hospitals are done one way, using the same techniques, and the same equipment. Variation in this only adds cost and time. His hospitals can be built in 6 months. They don't have air-conditioning. India can be a really hot country, but most of his patients don't have air-conditioning in their own homes, so he has reasoned that they do not need while they are in hospital. Can you argue with that kind of logic.

Shetty's production line approach to healthcare may seem to lack some of the softer touches that make being a patient easier. But one cannot say that he lacks for care and compassion: he is answering for all of us the question 'How can we marry utilitarian ideals with the reality of medicine as a business?' Shetty clearly exercises some value judgement about what is important in the healthcare process.

Furthermore, I imagine it is terrifically hard work being a doctor or surgeon in one of his hospitals: you are there as the technician on a production line of treatments, and one wonders what the challenges are in keeping the work force motivated and engaged. For how long can a surgeon work at the intensities that his systems allow and demand? Burn out might seem like the luxury of a modern work force, but Shetty's system represents a real change from traditional models of practice, in which the surgeons are not just people who operate, but clinicians who use a range of treatments modalities, of which surgery is just one option. Surgeons traditionally have been clinicians first and surgeons second.

And here is the rub: the traditional model leads to variations in practice, the scourge of healthcare outcomes. Shetty's approach to variation has been to standardise decision making and process. Thus the role of the surgeon is more restricted: the surgeon is the person who does the operation. Increasingly, the surgeon is the person who does one particular operation. From a patient's point of view it is better to have a surgeon who only does the procedure you need than to have a surgeon who sometimes does the procedure you need.

The price to pay for a shift towards a production-line model of working is in burn out rate, and job satisfaction. The risk that people will grow tired and leave, or will be less attracted to the profession in the first place is real.

The same risks exist for us here in the UK, where reduced training hours inevitably mean that trainees acquire a narrower range of competencies. We have already seen in this in the reduced confidence of surgical trainees to manage the medical complications of the procedures that they deal with, and I have no doubt that it manifests in breadth and complexity of their surgical skills. The UK risk is that surgery becomes less attractive to trainees by virtue of the fact that the training is less engaging.

Clearly the way we are practising is changing, driven by the realisation that patients have a right to surgeons that are expert in the particular operation that they need, and driven by the absolutely essential requirement that patients come to hospital to be treated, and not to be learned on by trainees.

Perhaps in achieving this, our approach has been a little back to front: to protect patients, we have reduced the number of hours that trainees can work, and subsequently, have started producing consultants with less experience. Perhaps the approach we should have taken is to standardise what it is that trainees learn, and get them to repeat it, and repeat it. For every procedure, there could (perhaps should) be the NHS standard protocol. Trainers should be obliged to teach the standard technique, so that wherever a trainee is sent, they will already be familiar with the way operations are done.

Can the surgeons of tomorrow emulate the surgeons of yesteryear? In just the same way as we have realised that the working practices of junior doctors must change, we must also realise that the working practice of consultants must change, all in the name of quality, efficiency, and access.
There is clearly scope for thought on this issue, and perhaps we should not be shy in seeking guidance from India. But we need to protect surgery as a career to which talented young men and women can aspire, and in which they can thrive.

Sunday, 7 October 2012

Where have the observatories gone?

I keep being told, I keep hearing that we are in times of great change in the NHS. I suspect that there is some element of the bias of self-centredness in all of this: I suspect that the NHS is always undergoing great change; the only thing that is different about this time is that we are the ones going through it, and for many of us, it is a new experience.

However, it is still true to say that the way that we deliver healthcare is evolving, and needs to evolve. To carry on practicing medicine the way we do today is to guarantee the future a service that will not meet its needs.

Traditionally, we have been very poor at using clinical data to inform our practice. This is perhaps surprising, as doctors like evidence. But then again, it isn't surprising at all: great care needs to be taken in how clinical data is used and interpreted. Any given data set can tell you something either about the process being measured, or the process by which the numbers were collected.

As a starting point, using clinical data allows us to see more clearly where we are going, but the quality of data available to us at the moment is rather like early maps - key features are missing, and some landmarks are misplaced. The inaccuracy of clinical data currently available is one of the main reasons that clinicians I have met are reluctant to use it.

But this is something of a chicken and egg dilemma: clinical data is not accurate because no one uses it, and no one uses it because it is not accurate. Clearly the cycle needs to be broken.

There are two rules of engagement that should to be observed: firstly, data should be used to guide enquiry, and not as the sole basis for drawing conclusions. Clinical data is a tool, not a weapon, and it should be used to support improvement, and not as a threat. Secondly, the use of data should be transparent and routine. If we want clinical data to be useful, and used, then it has to be easy to access, and it has to be easy to digest. Doctors won't get involved if they have to spend a lot of time cleaning data, collating it and then interpreting it.

As with many things, this kind of information has the potential to be powerful and informative, but it does ask for some investment. Processing and presenting the kind of information that supports clinical services requires a degree of commitment: clinical data does not make sense by chance. It requires the input of people who understand how it was collected, what factors undermine its accuracy, and how best to present information so that it makes sense. That is perhaps a gross simplification of what I mean, but we don't need to get into technicalities.

In this brave new world of GP commissioned services, effective commissioning will only be possible if there is available the right kind of information to support decision making. How will GPs know what is needed if they have no idea what the health burdens really are, or how the different services are functioning?

It was therefore with some dismay that I found out that there was no planned role for quality observatories in the new structure of the NHS, and that in particular, there was no role for the South East Coast Observatory  (find them at @secshaqo on twitter). What I have always liked about this observatory, is that their focus has always been on how best to use data to support front-line services, and how to present information in a way that is useful for the people who actually run those services.

In many ways, where the South East Coast Observatory went, I expected others to follow. In my own work on clinical dashboards, it was to Sam Riley and her team that I turned for advice. I have always particularly enjoyed their regular newsletters (http://www.issuu.com/secqo) which are both informative, and often very funny.

Clearly, I have a soft spot for them, but the mainstay of my disappointment about the abolition of the Quality Observatories is that it feels like a regressive step.

Having teams of people working specifically on the information that drives and underpins the health service was a step forward. Moving to a position where there are many fewer people specifically supporting both commissioners and clinicians undoes the advance that the Quality Observatories represented.  

Vascular surgeons have been publishing their clinical data since 1997 - they have charged ahead, but remain rather lonely pioneers in this field. I suspect a number of factors underpin the failure of other specialties to be so transparent about their performance data.

Perhaps some clinicians are unconvinced by the argument that it is worthwhile to do. Perhaps other clinicians are convinced by the need to do it, but do not have enough support to make it happen.

It is one thing to want clinicians to use the data available, and to do so with transparency. It is quite another to expect them to be the ones to collate it and publish it.

We cannot expect the use of clinical data to become routine unless we invest in the systems to make it happen. Teams like the South East Coast Observatory provide the kind of service we need. And if you don’t believe me, follow them on Twitter (@secshaqo ) and have a look at what they do.

Friday, 28 September 2012

What is truth, what is folly, and what is deceit?




At the weekend, I read with dismay Ben Goldacre's excellent article on the gaming of research results by the pharmaceutical companies (http://goo.gl/LzNHh). I have known for a while that the desire to help patients stood in conflict with the financial bottom line, and I even knew that on occasions, drug companies suppressed results that they did not like, or failed to report on negative trials.

I cut my medical teeth at the time when we started using selective COX2 inhibitors for pain, only to find out that the efficacy data had only been published up to 6 months, as the data up to 12 months showed excess mortality. These drugs have now all but fallen out of use, which is right on the one hand (their incorporation into routine practice was based on flawed data) but a shame on the other hand - there were patients, particularly with rheumatalogical diseases who now have no access to medications that they actually found useful.

Ben Goldacre reminded me of this experience. But his effect on me went much further: he made me question how many times I have prescribed patients medications which I thought would be of use to patients, because the published papers showed benefit. What, however, I have learned is that for many of the medications I use, for every positive trial, there may well be a number of trials that showed no benefit.

Have I therefore been guilty of quackery? By today's standards, my decisions have all been justified, but in the future, when I look back at the actions I used to take, or the medicines I used to use, what will I think? I suspect there will be a number of medications that I use now that I will view with either embarassment or mirth.

I began with mirth when I was reading a beautifully written article in the New England Journal the other day, looking back at 200 years of therapies described and debated in the journals pages.

Blood letting, the therapeutic use of tabacco and trying to shock the body back into health are approaches to healing that we rarely sign up for today. But they made sense in the context of the medical knowledge of the time. In just the same way that the treatment choices we use today usually make sense in terms of our medical knowledge. Usually, but not always: I don't understand the use of ritalin in ADHD, I don't always understand the healthcare reflex to use anti-pyrexials to suppress fever, which has a biological purpose.

I guess we are quite good at persuading our actions to fit our understanding, rather than vice versa. I imagine we are more persuaded by the times our choices work than when they don't - treatment failure can be understood in other terms: they were too sick, too frail or presented too late.

The rise of empiricism in medicine has not wholly dispelled by the influence of personal experience on medical practice - and perhaps it shouldn't. But there are risks: for example, we know that doctors put too few people on anticoagulants, because of their experiences of dealing with the complications, even though the evidence suggests that the benefits outweigh the risks.

But our own personal experience gives us information that no randomised controlled-trial ever could - namely what it is like to be the patient. With our senses, we can tell what the patient going through, both from the illness and from the treatment. This is crucial - the quality of experience is central to how we practice.

But perhaps our own experience also gives us useful data on how well treatments work. After all, if Ben Goldacre is right, we shouldn't place all of our faith in the numbers we read in the journals. Sometimes, they just can't be trusted.

I don't want to be a cynical practitioner, but perhaps I need to be. Perhaps it's true that we can never truly know, and perhaps it is useful to remind oneself that medical practice is about the person in front of you, and not just the empirical evidence about what works and what doesn't.

I can live with the idea that in the future we will have a better understanding of disease than we do now, but what is difficult to handle, is that for some drugs, the knowledge that they don't work that well has always been known. Failure to share this kind of knowledge amounts to corporate selfishness. In these situations, it is greed and avarice that triumph over kindness and altruism, and that just seems so unnecessary.

Sunday, 9 September 2012

Lengthening the legacy

Watching the Paralympics has been a wonderful experience. For some athletes, their adaptation to their impairment is so good that one has to look hard to figure out what their’s is. For others, you simply have to applaud how well they have coped with huge disabilities.

I have particularly enjoyed the swimming, where the water allows many of the swimmers to find a grace of movement that being on dry land robs them of. I imagine that for many of them, being in the water offers them a true escape from the rigours and trials of the real world. I wonder if it is the only that place that some of them feel unencumbered by disability. I know that most of the swimmers  I have seen can motor through the pool I great deal quicker than I can.

Over the last two weeks, we have immersed ourselves in the Paralympics, and become used to treating the vision of people with all sorts of disabilities and deformities as normal. Many of us perhaps felt some discomfort at the first sight of many of the athletes, but I would be surprised if there are not millions of us who now feel a lot more comfortable with it all than we did before.

And this is one of the great things about the games: it has opened up the reality of disability to many of us who have very little day to day experience of it.

But will it last? Look how quickly we have adapted to it. Will we decondition away from it as quickly again, or will then change sustain itself?

This is perhaps the most telling aspect of the whole paralympian endeavour: we will have to wait and time will tell. But I have a perspective on this, which may well help.

For a long time, I have felt that one of the main problems with the care of the elderly in the UK, is that we are not used to having them in our daily lives. Loneliness, as I have written before, is an affliction of old age, and too many of our elders live in social isolation, which means that when they do interface with society, it is often overwhelming for them, and it is often unfamiliar for the people they are dealing with.

There are periodic reports which bemoan the care of the elderly in both care homes and hospitals, which are usually followed by the same promises to improve training, oversight and standards. If only it were that simple: part of the challenge of ensuring dignity and respect in the care of our elderly involves integrating them into real life. If the elderly are valued and respected in everyday life, then they will be valued and respected when they enter care homes and hospitals. The level of care that the elderly receive in institutions is a reflection of the importance that society in general places upon it.

In a similar vein, there must be a lot of paralympians, and other people with disabilities, who wonder what the future impact of these games will be. If the Paralympics have been a vision of what could be, they perhaps also offer a stark contrast with what real life is actually like for these people. Life at the Olympic park has been an other-worldly vision of accessible living for people with disability, and for many the experience has been bitter sweet: if it can be this good, then why can’t it be this good all the time?

Watching elite sport is compelling: the physical tussle, the skill levels and sometimes the sheer bloody mindedness of the competitors makes it enthralling.. The paralympics is slightly different: many of the people that we have been watching would not have been elite athletes if they did not have disabilities. This has fuelled some scepticism on my part about the value of the Paralympic Games to people not directly involved with them. But these doubts are buried for ever: while the paralympics may not always be about watching the best in the world, they have been a salutary tale in what it means to overcome obstacles, to adapt to change, and a reminder that as a society we are not always very good at dealing with people who are different.

We may not see Paralympic sport on TV for another four years. The risk is that when we switch on to Rio, we will be starting from scratch, and relearning what we learned this year. All of these Paralympians will be re-entering real life next week, and for many of them it will be a good comedown. Perhaps it will make it better and easier if they notice that the peope around them are somehow different, that they make eye contact with them, that they are not uncomfortable being around them, and hopefully, that they are a bit more helpful and inclusive. That part, I guess, is down to each of us.

Sunday, 2 September 2012

The imperative for change

Mark Porter (the new Chair of the BMA council) has been counselling against the impact of rationing on the quality of health care provided by the NHS.

From this article in The Guardian (http://goo.gl/KxvdT), the rub of his argument would seem to centre on the impact that the shrinking of the services offered by the NHS would have on patients, and also the impact of undermining the clinical autonomy of doctors, GPs, in particular.

These two lines of argument may have merit. But they are worthy of deeper scrutiny, as they are built on assumptions that you may well not share.

To take the issue of the range of services and procedures offered by the NHS first, can we make the assumption that everything we offer to patients is worthwhile, cost-effective and necessary? Can we assume that all the tests we order on patients are indicated by their clinical presentation, and that all the referrals made to hospital needed in order to come to a satisfactory resolution of a patient’s spectrum of symptoms?

As doctors, we like to think that we do a good job for all of our patients, and we are quite good at presenting an argument in favour of doing an extra test. Some tests, particularly routine blood tests, become almost a reflex. Furthermore, we are never given a breakdown of the amount of money that we spend as doctors on the tests we order, and we are never expected to correlate our practice with our outcomes.

I definitely agree that if a patient needs a test, appointment or treatment for the condition that they present with, then it should be done. However, we must acknowledge that in a system that has hitherto asked from us no justification for the tests and treatments that we do carry out, there is almost certainly scope for tightening up practice a great deal. I am certain that with a little help, I could offer patients the same level of care and clinical outcomes, and spend less money. Perhaps, even by doing less, my patients would do better, shieded as they would be from the pitfalls of iatrogenesis.

For too long, clinical judgement has been the mask behind which doctors hide in order to justify clinical decisions that have no empirical basis. I acknowledge that for much of what we do, there is no clear evidence base, and we must call upon our collective experience and best understanding of the underlying science to guide what we do. There is often a high level of best intention that guides what we do. I also acknowledge that sometimes, your experience tells you to do something, even if you can’t clearly articulate why. The danger in this situation is that sometimes your gut feeling is the manifestation of your accumulated experience of similar cases, and on other occasions it is the manifestation of habit. Too often, our actions if life, and medicine in particular, are guided by the way we have done things in the past.

Furthermore, in every health service some value judgement needs to be made about the services we offer. Implicit in a nationally funded health service is the utilitarian idea that it will do the most good for the most number of people, but that in striving to achieve such a goal, it will not be able to do everything for everyone.

Over the last few years, it seems as if the focus of health care rationing has been on newer, more expensive therapies, often with marginal benefit - drugs for advanced cancers that improve survival for a few months, or drugs for dementia, that delay disease progression for 6 months. These are emotive situations, at the margins of what medicine can offer, and the whys and wherefores of engaging in expensive, and often toxic, regimens that confer little or no benefit can be difficult discussions to have.

However, the pressure placed on therapies at the fringes is heightened by the spending on traditional mainstream treatments, that have survived too long without being questioned. By saving money on treatments that we have offered on the basis of tradition rather than clinical utility, means that the money runs out before we get to budgeting for newer, more speculative therapies at the forefront of medical science.

A discussion about what should and shouldn’t be offered on the NHS is always divisive and emotive, but it needs to be done, with honesty, transparency, and with clear agreement on what the goals are. How would people feel if they knew that by not offering routine varicose vein stripping, the NHS could invest more in offering more advanced therapies for life-threatening illnesses, for example?

The current reform of the health service is overshadowed by politics, but beneath all of the manoeuvering, there is a real imperative: the future of comprehensive health care is dependent on our ability to spend the money we have more efficiently, and more effectively.

The risk of the current reforms is that healthcare becomes fragmented, restricted and profit driven. The opportunity is that healthcare becomes better coordinated and more effective. I am uncertain as to which way it will go, but that does not dent my certainty that the NHS needs to change.

Saturday, 25 August 2012

Can we ignore true despair?

For those of you that have missed me over the last few weeks, I apologise for my absence. My inaugural spell of fatherhood took its toll on my creative juices. It’s not that I haven’t had any good ideas, it’s just that a lot of the issues that I would previously have got on my hobby horse for seem less important when holding your first child.

But through all the hours that I have spent staring at my beautiful baby, the world has continued to turn, and lives have continued to have been lived. In some important cases, lives have come and gone.

Who was not moved by the grief shown by Tony Nicklinson when his right to die appeal was rejected? (http://www.youtube.com/watch?v=tpxeGY4JLdg). The law by which our society abides ought to be logical, consistent and representative of the values of society, and we as a society have yet to really come to an agreement about how we feel about assisted suicide.

Sometimes though, the strength of need shown by people you come across transcends your own moral code. However you feel about assisted suicide, we can be quite clear about how Tony Nicklinson felt about it, and we can be quite clear about the impact that the rejection of his case had on him. The only blessing from his death days after the second biggest disappointment of his life (his original stroke surely counts as number 1) is that his suffering ended. That his final days were blighted by disappointment and frustration is something that we cannot now undo. But perhaps we owe it to him to delve further into the issue.

Lots of people assume that I have a well-developed thesis on the role of assisted suicide from my work with the elderly. This however is not strictly true: I don’t think that euthanasia has much of a role with my patients, as inevitably, they are people who are reaching the end of their natural lives. The majority of my patients are frail. There are a great many fit and active elderly folks around, but they tend not to need the services of hospital-based physicians very much.

The issue that I find myself tackling is the honest communication to my patients and relatives about what they can expect from the treatments that we have to offer. In many ways, we have over-achieved, and have created an expectation of full recovery, when that is often not possible. The new frontier for geriatric medicine, I think, is in the communication of the message that often, less is more: by doing less to patients, we often achieve a better quality of life, lived outside of hospital.

If we put aside the rather tired philosophical argument that we are all dying, many of the elderly people I meet in hospital really are dying. By that I mean that they are in their final 6 months of life. This can be difficult to communicate, as I never know with any certainty how long any particular individual has left. But recognising the reality of the end of life when someone is coming up to it can really frame the discussion about what the best care for them is. By accepting the supposition, you change the goal that you are aiming for, from saving life, to protecting quality of experience. It involves doctors taking a back seat, and only intervening when it will improve the qualitative experience of the patients.

Thus my goals as a doctor to the elderly oscillate between two main objectives: on the one hand, I advocate for elderly patients to receive the same standard of care that younger counterparts receive when they have the same condition. Ageism is much less of a problem than it used to be, but we still need to be careful about how we ration access to care in these straightened times. And on the other hand, I advocate for a hands off approach when an elderly patient is reaching the end of their natural life. This is the beauty of geriatrics, as what we really try to specialise in is truly patient-centred care, with full use of up to date care, but also with a healthy dose of judgement and compassion.

And it is this reality which separates geriatric medicine from the assisted suicide debate. In general, we have no recourse to euthanasia: to over-simplify the issue a little, my patients either have a decent crack at a fully recovery, or we accept that they are reaching the end of their natural lives, and adopt a symptom-control approach. While we often find ourselves unable to cure a great many conditions, with the help of my palliative care colleagues, we can offer patients comfort and dignity in their final days, weeks or months.

The assisted suicide debate centres around slightly younger patients who have either suffered a catastrophic illness, or are staring down the barrel of a scarily progressive disease, which will inevitably take them somewhere they do not want to go. For these people, with locked-in-syndromes, or with motor neurone disease, choosing the time of their own death is the last defiant act that they can take.

And through all the complexities of ensuring the protection of the vulnerable from coercion and exploitation, as a civilised society, we owe these desperately unlucky people our support, our attention and our honest endeavour to relieve their despair.

Monday, 6 August 2012

This blog is not about the Olympics

Pauline Pearce (http://goo.gl/fCSZ8), the Hackney Heroine, has been reflecting in the press about the aftermath of the riots of last summer. She has been reflecting that not a lot has changed, that the death of Mark Duggan was perhaps no different from other deaths that have happened in the past, and in spite of the wave of tough justice that followed the rioters around, very little has changed in Hackney.

The Olympics may have arrived, but in a ringed-fenced park, with the entrance manned by soldiers (a neighbour of mine is convinced that this was the plan all along, only made acceptable to the public by engineering the failure of G4S to create the perception of crisis. I don’t agree with him, but still, it’s food for thought), a world away from the communities that surround them. The main entrance to the stadium is via the Westfield shopping centre, which is surely a commercial enterprise aimed at a different demographic than those that currently live in the surrounding neighbourhoods.

There are two ways of looking at the Olympics: some may argue that the price for being awarded the Games is the regeneration of East London, while others will maintain that the price for regenerating the East End is to host the Olympics. One has to wonder what could have been achieved for the communities that actually live there with the £9.3 billion that we have spent on the Games.

You can argue about the impact of legacy (which seems to mean getting people to play sport) and the sprucing up of the area, but can we really sit here and argue that those people who shop at the more shabby Stratford Shopping centre have seen their lives changed by all the Olympic fandango? Will they have better houses, better community facilities, or will we see the area ‘improved’ by an influx of wealthier professionals from elsewhere in London?

Pauline makes the point that not a lot has changed where she lives, and that she has been frustrated in her efforts to create a community hub, where people can gather, chat, help each other out. She wants to get the elderly there, where they can help out, soak up the feeling of belonging again, tell stories and share their experience.

And this is the interesting bit of the whole discussion that followed the riots. There was lots of hand-wringing, and talk about the disaffected, unemployed and under-educated young men and women of modern society. And yet, even though this discussion created the sense that these people were products of the society that they lived in, we still handed down to them some harsh sentences for the temporary suspension of their moral agency, in a fevered atmosphere. Can we argue that we would  have acted differently if we had found ourselves living their lives at that time?

We explained the misdemeanours of the rioters on the absence of hope and opportunity from the life choices, and then gave them no leniency in the way that we judged them. I came out of the whole period distracted from the fact that something had sparked all of this off, and focused instead on what punishment the rioters should receive.

There has been no satisfactory societal outcome from the riot: we have not rediscovered our sense of community, and we have not addressed the issues that lie at the heart of the whole episode.

And yet there is room for hope: the last 10 days or so of the Olympics have reignited a sense of national pride, that I have not experienced before. It is almost as if the reality of having invested a huge amount in hosting these Games, and then seeing all go rather well, both from an organisational and sporting point of view, has reminded us that it is OK to think big and go for it, and that, perhaps cringingly, we are in this together. We have been reminded that it feels good to see your neighbour do well.

I think what that means in contemporary Britain is captured well by what Mo Farah said, when asked whether he would have preferred to have won gold for his native Somalia.

He replied:

‘Look mate, this is my country.
This is where I grew up, this is where I started life. This is my country and when I put on my Great Britain vest I'm proud. I'm very proud.’ ( http://goo.gl/CKPhk ).