One of the first questions I was asked by the Commons Health Committee was about personal resonsibility: “Shouldn’t people take more responsibility for their health?”
It is a dumb rhetorical question like, “shouldn’t we improve standards of care for people with diabetes?”
Clearly people should take more responsibility for their health, but considering the burden of illness falls disproportionately on the least autonomous (least educated/ wealthy/ powerful/ empowered/ able/ most old/ young) the burden of responsibility then is on those least capable of exercising it. Sir Michael Marmot’s book, Status Syndrome is a clear, succinct, accessible, evidence-based explanation of this phenomenon. The evidence base is vital in what is usually a hammer and tongs ding-dong between left and right.
The problem is that the conversation rarely moves on to the thorny question of how to make people take more responsibility. I criticised the ex-chair of the Royal College of General Practitioners and Future Forum ‘listener in chief’ Steve Field on this point a few months ago.
Sam has been my patient for the last 3 years. He has type 1 diabetes. Type 1 diabetes usually starts between childhood and early adulthood and accounts for between 5 and 15% of diabetes. The other is type 2 diabetes which starts later in life and can usually be managed in the early stages with diet and tablets. Control of type 1 diabetes requires insulin from the onset. For many people the diagnosis occurs just as they are beginning to discover their independence. Type 1 diabetes brings a catastrophic end to your independence. Suddenly you are struck with a condition that ties you down to regular meals, calorie counting, insulin injections 4 times a day and blood glucose testing, blood pressure and cholesterol tablets and regular check ups for your eyes, your feet and your kidneys, and blood tests … for the rest of your life. From independence to dependency overnight.
Poorly managed diabetes results in high blood glucose levels because there is insufficient insulin to transfer glucose from the bloodstream to the cells in the body where it is needed as fuel. Glucose is toxic to the lining of the blood vessels, especially the most delicate ones and so diabetic complications involve your eyes, kidneys, heart and extremities, especially your feet. Poor control results in blindness, kidney failure, heart disease, and painful nerve and circulation related damage to your feet, which in severe cases requires amputation. If the blood glucose is controlled you can avoid all of these complications. The higher the glucose levels the quicker the complications arise. I have seen all of these complications in a significant number of my type 1 and 2 diabetic patients far more often than I would like to.
The first time I met Sam he was a healthy looking 27 year old. Our practice nurse asked me to see him because his HbA1C blood test (the most important blood test for diabetic control) was 13.8. Good control is 6-7.5, fair control is 7.5-8.
13.8 is ‘terrible’. It heralds an impending series of catastrophes. Sam denied symptoms of excessive thirst, tiredness, weight loss or passing urine excessively. They are the classic presenting symptoms of diabetes before it is controlled. Sam said he felt fine. I could not tell if he was telling the truth or not. But I was surprised that he said he felt OK. Unlike the symptoms of diabetes, the complications develop over years and are have few symptoms of their own until they are advanced and mostly irreversible. Up to half of people with type 2 diabetes have evidence of complications at the time of diagnosis. That is why good control and regular monitoring are essential.
Looking back through Sam’s results I could see the control of his diabetes had been terrible since he was diagnosed 5 years before. A series of catastrophes were very likely. “Sam”, I implored and explained, “you know we can help you get control of this. You know that if we don’t you are going to go blind, your kidneys are going to fail, you’re going to have your legs amputated. You won’t live to your 50th birthday, you might not even make 40! It doesn’t have to be like that Sam, we can help you.”
There are a number of approaches in these situations. The “you are going to die young and horribly” approach, my experienced colleagues told me later, is usually only used once. Any more than that and the patients tend to stop coming back and they rarely change their behaviour. Sam knew about the risks. He had been thoroughly ‘educated’. More threats of horrendous complications and dying young were not going to make him ‘take responsibility’. Instead they add to feelings of guilt, depression, and self-loathing. I know that many of my patients with poorly controlled diabetes dread coming to their clinic appointments. They hate being judged on the basis of an HbA1C blood test, their cholesterol or the state of their feet, when their lives are so much more than that. They feel guilty about letting themselves and the nurses and doctors down. I have explored the sense of self-loathing that can be generated in aprevious post, Who is the NHS for? not me!
I tried other approaches. We discussed his insulin, were there any problems injecting, was he afraid of needles? No, none. And he demonstrated with no difficulty how he injected. How about side effects or low sugars (‘hypos’) which are horrible and cause a few of my patients run dangerously high sugars just avoid them. “No, no problems.”
Up to 50% of people with diabetes and other long term conditions are depressed. Depression causes people to neglect their health and I often see my patients’ diabetic control vary with their depressive symptoms. Sam was not forthcoming and it was difficult to find out much about how he felt. There are a lot of barriers between a doctor and a patient, even more between a white doctor and a young black man living in a Hoxton estate. I tried, but could not identify any signs of depression or other mental illness.
Sam had more education and better prospects than most of my patients. He was a teacher and responsible for a class of teenagers.
“What would you say to one of your students who developed diabetes, Sam?”
He shrugged his shoulders and responded exactly as one of his students might.
As hard as I tried I could not find out why a young, educated man with prospects might be prepared to die horribly and young when it was completely preventable. Clearly there are ‘things going on’ I don’t know about. If I am to help Sam we are going to have to get to know eachother.
Sam is not an exceptional case. I have seen my patients die ‘horribly and young’ from diabetes, alcoholic liver disease, smoking related lung disease, complications of surgery for obesity and infections due to injecting drugs. The price of ‘not taking individual responsiblity’ for these people was to die ‘horribly and young’.
Not taking responsibility is really complicated. There are reasons for it and they need to be understood. In yesterday’s Health Service Journal Mark Britnell, a former high-flyer in the Department of Health, now global head of health at KPMG, and recent appointee to David Cameron’s “kitchen cabinet” of health experts to advise on health service reform, proposed the NHS should take inspiration from Singapore, where healthcare is “anchored on the twin principles of individual responsibility and affordable health for all”.
I’ve responded on the HSJ website and Andy Cowper responded pithily on his HPI blog. Here are some details. Firstly Britnell compares apples and oranges. Singapore is a wealthy city state, culturally homogeneous and highly conservative. The UK is a heavily indepted country, culturally diverse, and politically liberal. Singapore had elections on May 7th this year and the People’s Action Party which has been in power since 1959 had its lowest ever majority due to a large extent to voter anger over high living costs and rising inequality. Healthcare costs play a significant role in causing this as explained in this very well written blog from Singaporemind. “The PAP government insists that Singaporeans shoulder as much of the burden for medical care as possible and they carried this idea to the extreme, making Singaporeans shoulder the highest % of medical expenses among citizens of developed countries, [even more than in the US]”. Cameron should be very wary about taking advice from someone who is advovating policy that is partly responsible for such unprecedented public discontent.
But more important than that is the right wing obsession with personal responsibility. Almost all the published evidence shows that the healthcare costs widen inequality and stop people accessing care they need. This paper, Medication Compliance, Adherence and Persistence: Current Status of Behavioral and Educational Interventions to Improve Outcomes gives an introduction. If people do not take responsibility and the threat of ‘dying horribly and young’ is not sufficient, then why do they insist that the threat of healthcare bills will improve behaviour?
I think there are 2 main reasons. The first is a medieval tendency to explain human behaviour in terms of moral values rather than complex social structures. According to this logic, ill health is on the whole a moral failing due to sloth, gluttony and so on, and if you get sick you deserve to pay for it yourself. It ignores the fact that the strongest determinants of ill health are genes and social deprivation. The second reason is their belief in idealised rational, self-interested consumers rather than complex, irrational, uncertain patients. This is the erroneous thinking that lead us to a global economic collapse. According to this logic people want to be healthy, and given sufficient freedom from a nannying state and a little nudge in the right direction will make healthy choices. This ignores the fact that a. people are not like that, and b. for a young diabetic it may be more important to assert your freedom and independence by eating what the hell you want, when you want, leaving your insulin at home and worrying about complications later.
What then are we to do?
In my experience, (11 years in General Practice) and that of my colleagues, some of whom have been doctors in the same surgery for over 25 years, if we are to help our patients who are suffering and at risk we need better continuity of care. We must try to understand our patients rather than judge them. We must remain accessible, so that they are not afraid to come back out of shame or fear of criticism or rejection. Above all we must be very patient. It can take a lifetime of practice for patients and doctors to understand eachother. By far the main part of our job as GPs is to look after our patients with long term conditions. Taking care of patients means getting to know them and sharing the burden of responsibility. It is profoundly different from a commercial relationship, founded on patient autonomy and choice. Sam’s diabetic complications – I met him 2 weeks ago, nearly blind, his diabetes control still catastrophic – are my burden and his. Other factors matter, diabetes control is far easier due to improvements in insulin pens and blood testing equipment, but in my experience, the biggest barrier to quailty of care is quality of relationships.
Shifting the burden of responsiblity onto individuals by taxing sickness is implicit in the ideology underpinning NHS reform. It flies in the face of clinical experience and all of the available evidence. What is more, it is more expensive than sharing the burden of care through general taxation.
It is morally repugnant.
For an excellent analysis of the difficulties caring for people with diabetes read, The Logic of Care: Health and the Problem of Patient Choice by Annmarie Mol.
Excellent 15min video about diabetes and individual responsibility. NB the 3rd most common reason for being removed from a US GP list is non-compliance with treatment (8mins)
Wow, eye-opening. I’ll be sharing this on Twitter, Facebook and my blog (not that it’ll reach that many people, but worth a try).
Thank you for this. As somebody with a chronic illness I loathe being told that I would take my pills more responsibly, etc., if I had to pay for them. I take them because I don’t want to die young and horribly. In my case, that’s quite enough, and I don’t think it right that I should be penalised for health problems that are absolutely no fault of my own (as if being ill were not itself a penalty anyway).
Every patient is different, of course. I have a doctor who wants to get to know me and that makes me profoundly uncomfortable. I would rather our relationship were entirely professional. I’ve been on the receiving end of a fair bit of prejudice in my time so I don’t like sharing details of my private life with somebody on whom my life may depend. I just want to exchange information, deal with the paperwork, and go.
For many people, of course, life is about living, and for some a shorter life with fewer restrictions may be worth more than a long one filled with tedious, unpleasant medical rituals. That has to be their decision. I suspect that engaging with it, and showing respect for it, may be the first step toward working out a healthy compromise.
Thanks very much for your comment. It’s so important and helpful for me as a doctor to know what patients think.
As a patient I found this post very illuminating.
From my own experience, I would say that personally I would like to be able to take control of my own treatment post cancer, because I have already managed (with a struggle) to get what I wanted, even though doctors have been reluctant to do what I wanted.
In one instance I had to involve my MEP as best ‘cosh’ to get lymphoedema treatment that had been refused by PCT.
However, I would also say that for many of us, the postcode lottery system is a massive barrier to obtaining what we should be entitled to. I have come up against this, and it is very debilitating having to fight this.
And frankly, why should patients have to expend energy in fighting for better health?
When I knew I had cancer (feminine intuition), I lay in bed working out – do I phone NHS GP and be told by receptionists I couldn’t see doctor for two weeks; or did I phone private doctor whom I knew would see me that day, realising that I would be worried about cancer.
No contest – I wanted to get on with starting treatment, so it was private.
But I was able to choose that option – why should others miss out because NHS can’t give patients what we should be entitled to – peace of mind when cancer is ‘hanging’ over us?
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I’ve been trying to get this info out into the public realm for ages. I’ve emailed the guardian nhs blog etc. Seeing your comments on the blog I wonder if you’ll take up the message
Its really interesting watching the news, newsnight, reading the papers etc, its full of people saying what needs to change in the NHS. These people are largely experts in the field. The one thing that seems to be missing from all of this is what the publics opinion is. After all its Jo public who pays the taxes, which funds these essential public services, and more to the point uses the services.
Well interestingly enough there is plenty of information out there about what Jo public thinks. Unfortunately the establishment, including most of the media are choosing to ignore this. Probably because you still think you are the gateway of information flow to the public. Maybe a while back you were, but this information is out there on the net, this is way 38 degrees have over 300,000 signatures to the NHS petition.
Anyway back to my original point.
The British Social Attitudes survey 2010 – 11 is available and has been since around December I believe. Its on its 27th edition. Therefore it must carry some weight in informing policy and opinion. It has a full section on the publics opinion of the NHS…. section 4.
An extract form the document is also attached.
Click to access nat%20british%20social%20attitudes%20survey%20summary%204.pdf
Satisfaction with the NHS is at its highest level ever.
• When Labour entered office in 1997, only a third
of people (34%) were satisfied with the NHS, the
lowest levels since our survey series began in 1983.
By 2009, satisfaction stood at 64%, the highest level
since the survey began.
• Only one in five people (19%) are “very dissatisfied”
or “quite dissatisfied” with the NHS, down 31
percentage points since 1997 (when 50% were
Even more striking.
While satisfaction with the NHS among Conservative
supporters fell initially when Labour came to power,
it rose 12 percentage points between 1996 and 2009,
reaching a high of 61% in 2009.
Wouldn’t it be interesting for the mainstream media to raise this question to the politicians. I’m sure you’d get a great reaction… think of them squirming in front of your reporters. If it ain’t broke why are you trying to fix it…. etc… etc…etc.
The other interesting thing worthy of note is this fact. Public satisfaction increases under the current structures put in place to run the NHS. Well so what you might ask.
Well the so what you might ask is this. The proposed structures have already been tried to some extent by the Tories….Goggle GP Fundholding…… and guess what there is academic research out there which suggest the aims they are trying to achieve this time were never achieved under GP fundholding. Don’t take my word for it… have a look yourselves.
Click to access PC%20led%20commissioning%2005.pdf
“While there was little robust quantitative analysis at the time
(Dowling, 1997), a recent study of data from one health
authority covering 1993 to 1997, concluded that… See More
fundholding practices were able to secure reductions in
waiting times of about 8% for their patients requiring
procedures included in the scheme, compared to all other
patients (Propper et al, 2002). These waiting times relate to
the period from the decision to admit to admission, but,
arguably, the impact of fundholding budgets on GPs’
decisions to refer is also important. There is anecdotal
evidence that some fundholder referrals were delayed due
to budgetary constraints (Bagust, 1994). More recent
research comparing the period before and after the
abolition of the fundholding scheme has shown that
fundholding status reduced the waiting times of
fundholders’ patients by 5-8% and that these practices
would probably have had higher waits than nonfundholders
had it not been for holding a budget (Dusheiko
et al, forthcoming).”
Two tier system… remember, this was when common to wait 18 months, what impact would they have when patients only wait 18 weeks. Patients of Inner city non-gp fundholders, seen later at the expense of fundholder patients
Research evidence supports the hypothesis that the more
successful primary care commissioning organisations have
higher levels of management and other professional
support (Malcolm et al, 1999; Wilkin et al, 2001; Weiner et
al, 2001; Regen et al, 2001; Mays et al, 2001; McClelland
et al, 2001; Dopson and Locock, 2002). The national
evaluation of total purchasing pilots showed a statistically
significant association between a pilot’s ability to achieve its
commissioning objectives and its per capita management
costs (Mays et al, 2001, p85). Adequate management
support is considered to be vital if primary care
commissioning organisations are to gain the confidence of
secondary care colleagues in purchasing negotiations, and
of their constituent practices which expect the organisation
to properly support primary care-led commissioning
activities. UK commissioning organisations, in general, have
had low levels of management support when seen from an
international vantage point (Weiner et al, 2001), and the
issue of commissioning capacity is regularly cited as a
reason for the perceived lack of progress with
commissioning in the NHS, given the wide range of
responsibilities given to commissioning organisations (Light,
1998a; Smith and Goodwin, 2002; Dopson and Locock,
2002; Roche, 2004; Commission for Health Improvement,
2004). There is no doubt that core commissioning activities
such as population needs assessment, service
specification and development/redesign, priority setting
and resource allocation, contract negotiation and service
monitoring need proper management and other expertise.
In addition, with the increasing interest in using managed
care techniques from the USA as part of NHS
commissioning, a range of new skills are called for
including: linking the discipline of managed care with
programme budgeting processes and Payment by Results;
developing staff, clinician and patient awareness of new
approaches to care management; developing new
incentive structures; analyzing and then risk stratifying local
population groups; developing predictive models of likely
health care needs and usage; articulating how the policies
of managed care and Patient Choice might work together
(Chambers, 2004).Light (1998b) identifies the following
requirements for commissioning organisations to be
successful, based on US experience:
• Sufficient clout (for which size may be relevant,
depending on the service) to take on powerful
The Health Foundation Primary care-led commissioning 21
• Technical skills, knowledge and infrastructure to
challenge ineffective or inefficient practices;
• Time and training to carry out complex tasks (e.g.
working with providers to redesign their services);
• The ability to improve quality and efficiency, and reduce
variations, in primary care itself.
Oh dear you do need management (sorry in tory speak bureaucracy) to achieve desired aims of a system. Even succesful GP fundholders had higher management costs….. and your going to chop management costs and achieve what!!
Click to access 11885824.pdf
One early review of the available fundholding literature
concluded that there were ‘extensive gaps in current knowledge
about the impact of the scheme’ and that the claims
that ‘GP fundholding has resulted in improvements in efficiency,
responsiveness, and quality of care are in general
not supported by the evidence’. Another review argued that
‘few reliable conclusions about fundholding, either positive
or negative, can be drawn from existing research’. A review
two years later also concluded that there was a dearth of
high quality evidence on many aspects of the fundholding
scheme, particularly in relation to referral rates, patient outcomes,
and service quality. A review of the scheme’s
effects on prescribing found that, in the short term, many
early-wave fundholders had managed to secure economies
in their prescribing by switching to cheaper, generic drugs.
However, in the longer term, such savings may not have
been sustainable. One of the last reviews available to inform
abolition concluded that ‘evidence concerning the success
or otherwise of general practice fundholding over the last six
years is incomplete and mixed’ and, unless further research
was undertaken, ‘the jury will have to remain out on whether
fundholding has secured improved efficiency in the delivery
of health care’.
Click to access Civitas_LiteratureReview_NHS_market_Feb10.pdf
Now I realise there is alot of information in this email, and it may send you to sleep… but bear with it as the NHS is to important. You see my conclusion is…. evidence suggests that patients approved of what the NHS achieved over the last decade or so…. yet this is going to be ripped up with little evidence to support it…. and what evidence there is suggests that the replacement structures will not achieve what its going to set out to do.
Unfortunately i’m not in a position to ask these questions…. but as the media you can ask them on behalf of me and more importantly the rest of the British public.
Thanks for all this Gareth. I think I covered the efficiency and satisfaction points in a previous post: https://abetternhs.wordpress.com/2011/05/12/patients-responsiblity/
I’m just a regular full time GP with a baby due any day. I’m not a journalist or the media. My experience of writing to my MP and speaking to other MPs is they are suspicious of professionals who they assume to be defending their own vested, professional interests. They are much more open to the concerns of ‘ordinary citizens’ or patients.
Seriously interested observers like yourself are a great asset to the campaign for a public NHS and democracy in general. My advice would be for you to join Keep Our NHS Public and set up a local group, write to (or even better visit) your local MP, write to your local paper (they are always looking for news), call your local radio phone ins, hold a public meeting. Whatever you have the engergy for, every little helps.
I will keep your references to add to those I have so I can keep fighting,
With best wishes, Jonathon
I’ve been having an involved conversation on twitter with Anne Marie Cunningham about this entry. However, twitter offers only so much and deep conversation in bursts of 140 chars is a bit limiting.
I think it’s fair to say that we were both perplexed by Sam’s attitude. Yes, I could sympathise with his resistance to accept his situation but to persist in that to the point where he was losing his sight and still continue his behaviour defied belief.
So, I had to keep thinking on. Sure, there was possbly an element of denial at play but that’s too glib. I’ve just recalled there are other defence mechanisms available and supression (‘Suppression is when you consciously forget something, or make the choice to avoid thinking about it’) seemed a better fit. Then, that led to thinking about coping mechanisms. But since Sam hadn’t been coping, there seemed little point in pursuing that.
Anyway, I dropped Anne Marie a final thought after I realised that Sam seemed to have a fatalistic attitude to his situation and it didn’t take much longer to find that a fatalistic reaction to diabetes is quite common – there’s a Diabetes Fatalism Scale (DFS). That in turn led me to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3042801/. It seems that white men on lower incomes are particularly fatalistic about diabetes and that there is an inverse relationship between personal motivation and fatalistic beliefs.
It’s being an interesting day. What have I learnt? Well, I certainly developed a greater insight into people’s reaction to diabetes. So, that’s good. Speaking as an Ed Tech, I’d like to consider the part twitter played in today’s activities. Anne Marie’s tweets alerted me to the issue and we’ve being sounding-boards for each other throughout the day while carrying on with other activities. We’ve exchanged links – indeed, it was Anne Marie who directed me here.
Ah, I’m nearly at the point where I can draw a conclusion. There are three domains involved in learning: Affective, Behaviour and Cognitive. In our culture, education emphasises the cognitive domain. That won’t be enough here. The affective domain is important because the appropriate emotional reaction creates the right attitude for self-motivation and the behavioural domain is important in developing the correct habits.
Honestly, while diabetes is a game changer, it’s not the end (and I am speaking from direct experience). Make the commitment to get it right and it’s a minute twice a day within a window of an hour, a few seconds checking glucose levels that doesn’t even necessarily mean interupting what you’re doing and paying attention to what you eat and getting exercise – something you should be doing whether you’re diabetic or not.
Thanks for taking the time to send some thoughtful comments. Briefly, I’d like to recommend Atul Gawande’s latest article, Hot Spotters about people who don’t take their medicine, and also the video about minimally invasive medicine I’ve posted at the end of the post. I plan to write about 2 more patients, a lifelong smoker and a patient with morbid obesity to explore self-destructive behaviour and the dr-patient relationship in detail, for a longer piece for the London Review of Books next month, that I hope will explain more detail. Because of my teaching role, I have the opportunity to interview my patients for over an hour at a time with my students, getting more details than I possibly could in an appointment. I believe that we need to change primary care to allow appointments of this length for some of our patients. Perhaps then we can deal better with the affective and behavioural components by understanding our patients lives better, Jonathon
I’m glad James’ comment turned up. Amongst many others I will share two thoughts. I appreciate that having longer to spend with someone like this really will be useful- but do you think that a one hour consultation with students present will really help? I’m sure that you involve patients as partners in these consultations but I can see it ending up being very confrontational with someone like Sam. And he might feel he is being picked upon. Perhaps this reply to James wasn’t meant to suggest that you had consulted with Sam in these circumstances. But I wonder in general how you think the presence of students changes the dynamic.
Next, is Sam a real patient or a composite of several? Even if you had changed the age, race, occupation and gender of Sam, they still might recognise themselves from this post- in the sense that they are a poorly controlled diabetic and have had several conversations with your about this. In this case would you tell Sam that you wanted to write a blog post about him? I suppose I worry about further objectifying someone who is already very vulnerable.
But thank you as always for illuminating these topics.
Thanks for commenting. Firstly I think Sam is sufficiently anonymised, I change a range of identifiable charactaristics and wait a few months before describing any of my patients. At other times I get their permission, but still anonymise unless it’s important not to. I have only met Sam twice, which is part of the problem. There are other complications which I could have discussed, but didn’t at this time. Sam would not have been appropriate, but interestingly another patient who has come to speak to the students 2 years in a row, had a period like Sam early in his diabetic life and I am good friends with a senior doctor who is nearly blind after poor control during his medical student days.
I will describe the other patients in the lrb piece. The students’ jaws were all on the floor by the patients candid and deeply moving descriptions. They were incredibly articulate and open. They were patients I knew well we trusted eachother, and they were ready to talk, but nevertheless they made for amazing teaching experiences. It is so powerful to ask someone who has had a chronic disease to describe how it has effected their life. As doctors we spend so much time on the present and future, we too rarely delve into the past. In particular I find this with my most obese patients.
I am fascinated by people do stuff to themselves that is so clearly harmful, it is my job to help them.
I have spent many hours in the House of Commons observing parliamentarians gorging and guzzling subsidised ‘unhealthy’ food and alcoholic beverages. They are the last people to pontificate about people taking responsibility for their health.
I have also seen people with genetic incurable chronic kidney disease, some with renal failure, who are doing all they can to keep a relentless condition at bay, sneak a crisp or two at a renal conference. Small, guilty acts of rebellion or treats as they prefer to think of them. In the US, these patients would be lucky to get any healthcare at all; in many countries they just die. Is that the type of society we want to aspire to?
It is extraordinarily dangerous and ignorant to advocate for shifting the costs of healthcare further down to individuals at a time when costs are increasing due to technological advantages and huge increases in prescribing: On average people over 60 received more than 42 prescription items per head in 2007. In 1997 they received on average only 21. It is absolutely clear to me that Mitchell is completely representative of Tory ideology.
Excellent article, yes I have been there feeling frustrated that patients won’t just do that one thing that I think will make them better. Deep down I always knew it was more complex and I have moderated my attitude greatly over the years but this article really showed me that my instinct was on the right track. We never really understand why some people behave the way they do but we simply need to keep caring as a society for those who aren’t in the right place to care for themselves.
The concept of ‘personal responsibility’ is so pervasive at the moment. And is therefore very dangerous. I makes me so angry that people who have the highest autonomy in our society are the ones who always claim it’s all about personal responsibility – somehow expecting people who have so much less freedom than them to exercise the same level of choice.
I have no doubt that my patients have a stake in their own healthcare – they’re the ones who are ill! The idea that somehow adding a pecuniary interest will make people ‘more responsible’ (whatever that means) is not only ridiculous, but contradicts the evidence.
(Honestly compels me to add that there is some evidence that nominal charges can be beneficial. However I am very nervous of nominal charging, as the history of prescription charges shows, nominal charges don’t stay nominal for long.)
Poor, slightly fictionalised, Sam! Could he be repressing suicidal wishes and expressing them by not taking his meds?
I explain that he is by no means unique. I’m afraid your suggestion lacks sophistication or understanding.
Ouch! I knew Sam was not unique but asked if he is suicidal and you seem to be saying: Don’t ever ask that question again! Surely some mistake?
Thousands kill themselves each year. Hundreds of thousands attempt it with varying degrees of seriousness. Numerous youths have anorexia, bulimia or self harm. You say you don’t know why Sam behaves as he does and you accept your patients are complex, irrational and uncertain not idealised, rational and self-interested. Why could he not be suicidal?
Having spent months as a voluntary patient in daily therapy on an NHS ward where many were suicidal, I realise some patients deny this and some recover after the root causes have been found and dealt with. I did not mean to imply GPs could fix them.
Apologies if I was a little harsh. Of course Sam could be suicidal and deny it to himself and to his doctor. Many patients drink, smoke and neglect themselves to a degree that is ultimately fatal and many of my diabetic patients, for all sorts of reasons have HbA1C results similar to Sam’s. That does not mean they are suicidial. Nevertheless if Sam is suicidal then the underlying reasons would contribute to his ambilvalence and neglect, and it’s my duty to try to identify them and help him to cope, so improving his diabetes and helping him
discover the will to live.
The really ugly side of the ‘personal responsibility’ argument is the blaming of people for their conditions. One of the most unpleasant side effects of having a cancer diagnosis is that you suddenly have to put up with moralising, from people who draw their medical information from the popular press. I have been told repeatedly, in subtle and less than subtle ways, that I must have done something wrong to have grown a lymphoma.
Unfortunately, it’s a short step from identifying lifestyle factors that may influence the development of diabetes, cancer, hypertension etc, to assuming that these diseases are nothing but lifestyle caused, and from there it’s an even shorter step to accepting that there are ‘deserving’ and ‘undeserving’ recipients of health care and that the undeserving are sucking the life out of the health care system and should both pay for their own treatment and put up with insults from the deserving.
The case of Sam is a tough one. What I know from my own life and from observing people around me, is that very few of us are amenable to being scared straight, whether it’s being told to give up smoking, eat better or monitor blood sugar. Partly it’s because we don’t exist as isolated individuals – if Sam connects to his best friends and family through eating sugary foods, or if constant food and blood monitoring would be viewed very negatively by the people in his life, then maybe those connections are more important to him than his sight. He may be caught between the demands of his environment and the demands of his health.
Personal responsibility is a very difficult subject. However, I think it is too easy for people to fall on the “self-harm” excuse.
I have had type 1 diabetes for 35 years. For the first 10 of those I was on the old regime of animal insulin and home urine tests, so it was almost impossible to have a “perfect” blood sugar. However, I didn’t help. I had no problems with injecting, but as a teenager, I simply wanted to be like everyone else.
When I went to university my diabetes got out of control, to the point that when I had my wisdom teeth out in hospital they refused to discharge me until I had agreed to see my diabetic consultant (at another hospital). My living it up as a student (erratic eating, excess beer) could have been handled by adjusting my insulin. I was simply treating the twice daily injections as something I had to do, and once done, I could forget about it. This may be denial, but it was partially constructive denial (I was still taking insulin, just not making the effort to determine the right amount).
The thing that I remember most from that period was when I had finally “got a grip” and sorted out my insulin, how much better I felt. I didn’t realise how bad I had felt over the previous decade: it had become normal. I think this is significant, people will not change unless they think there is something to change for.
There is, however, another aspect. I don’t expect to live to the English life expectancy, and actuaries don’t expect me to. Life should be measured in quality not quantity and when you have a medical condition this becomes more important. I know what the recommended range for spot test blood sugar to be, and my blood sugar is usually nearer the higher end. Why? Because at the lower end it is easy to slip into hypo and feeling ill, whereas periodically tipping over the high point does not result in feeling so ill (not as long as it is temporary). (Talking with other diabetics recently, I found out that it is quite a common strategy.) The Q in QALY is important, and I would suggest that when people manage their own conditions it is for the extra Q rather than for the extra Ys.
I’m coming very late to this very interesting conversation but imagine others might come here due to Ben Goldacre’s RT. One of the things we’ve explored on PatientsLikeMe is the way that groups of patients interacting with one another share their experiences of medication adherence. Without the social stigma of a healthcare professional to tell them off, patients are sharing with one another online not so much that they’re missing doses, but that they find things a struggle. They don’t use terms like adherent or compliant or perservering, they just say they find taking their meds a bit of a struggle sometimes. In a safe environment of other peers, some useful discussion can go on to share tips, advice, maybe even videos of some of the techniques people use to overcome these.
Sometimes things are structural, like in MS we see it is a real pain for people to carry needle-based medicines around with them when they travel, or the side effects cause them to take drug holidays intentionally if they have a holiday coming up (see a paper on this from our group here http://www.jmir.org/2011/1/e12/). In HIV we read tales told by patients who’ve taken drug holidays to avoid stigmatising side effects like lipodystrophy but end up losing years’ worth of progress on their viral loads. When they share this experience *as a patient*, it’s like the information comes in a much more acceptable wrapper than when it comes from healthcare professionals, and we see at least some of the HIV patients that read those stories take more notice of their adherence (http://www.jmir.org/2010/2/e19/).
In organ transplants we see patients are keenly aware that the immunosuppressants are keeping their graft organ alive so they’re in no need of persuading there, but given their large number of comorbidities their medication regime can be very complex. The patients that are getting scripts written by 3 or more doctors, picking up refills at 2 or more pharmacies – they’re perfectly aware of the need to be 100% adherent at all times, but sometimes it’s the infrastructural or regimen complexity that lets them down.
Clearly it’s not a solution for everyone, but connecting patients with other patients like them using the Internet is at least a scalable and cheap tool in the armamentarium…
What a good GP you seem to be Abetternhs. However with reference to your main argument : that self -responsibility is not always that easy to demand of a patient I would say that the problem lies partly with the way pharma meds work to actually lessen the body’s ability to have vitality. All pharmameds have a potent and toxic effect on the body. This is dealt with by the liver – which tries to purify and cleanse the system. Pretty soon the effect of constant medication lowers the vitality of the liver and therefore the body becomes sluggish, craves sugar and stimulants etc etc . The knock-on effect of this – in susceptible individuals – is the likelihood that chronic or auto immune disease will eventually develop. Other manisfestations of weak liver energy might be : lack of will power, poor motivation, mood swings, depression, mania etc etc. And then the doctor will go and prescribe more pharmameds and add to the toxic load and so on and so forth. If we are really concerned about lack of responsibility amongst patients we would re train as acupuncturists or homeopaths or any of the myriad of systems of medicine and healing with work from the inside out -and so give the poor patient half a fighting chance to make decisions about their health from a healthier place. We would also be fighting for an NHS which actually was a HEALTH service.