The Dis-empowered Patient

My daughter has been suffering from vague ill-health for several years. Part of it is depression but she can suffer from extreme tiredness leading to lethargy and lack of motivation. It is bad enough that her employer is threatening a written warning if she is absent again. She has had some counselling and most recently she and the counsellor at her GP practice agreed that the tiredness is not psychological but physical; chiefly because exercise was exhausting her—not lifting her mood and lessening the depression.

She pursued a diagnosis of ME (Chronic fatigue syndrome) with her GP; he forthrightly said that he did not believe in ME (as there is no clinical diagnostic test) but nonetheless referred her to the ME clinic at the Heath.

At her first appointment the consultant rapidly ruled out ME as she does not suffer the muscle pain typical of the condition (though not all seem to agree with this) so he started to look at other possible diagnoses. He noticed that her vitamin B12 levels in her most recent blood tests were right at the bottom of the normal range so ordered more blood tests to double check. There is also a possibility that she has poly-cystic ovary syndrome so the consultant suggested more tests for hormone levels at the appropriate point in her cycle.

When she went to her GP to investigate another problem, she was given a letter inviting her to take a part in a research project to investigate sub-clinical thyroid deficiency implying that her thyroxine levels are low but not low enough to require treatment.

Last weekend she took part in the Blue Wave climate protest in London and was so tired in the evening that the friend she went to visit wouldn't let her catch the train back to Cardiff but she insisted that Carys should crash there for at least one night. She had improved enough on Sunday to come back and I picked her up from the station at 2030 or so. Unfortunately she felt too unwell to go to work on Monday or Tuesday (which is what has prompted the threat of a written warning). She had a follow-up appointment at the Heath on Tuesday afternoon. She asked me to accompany her to her appointment.

Ok, that's the back story.

What followed was a classic case of dis-empowering the patient and total lack of empathy. The first problem was that the consultant was not the one from the previous session. We were in a large teaching room with a central desk and a chair for the penitent (sorry–patient). This was set at the corner of the desk at a diagonal to the doctor's right hand. He was imposing, ruggedly handsome with a strong presence but no feeling of connection with the patient. There was a student in the room. She was not introduced but was sat (and I think I mean "was sat") about 2m to the left of the doctor and slightly behind. She took no part in the consultation except to smile at me when I met her eye. So I suspect we are talking about student dis-empowerment here as well.

He gave his name as Dr X but made no comment about my presence when my daughter introduced me. He had not read the notes before calling us in so we had sit patiently while he cursorily went through the test results. He didn't seem to read the narrative at all.

His reading of the results was that there was nothing clinically wrong. He didn't mention the hormone tests at all. He actually used the term "tired all the time"; I believe that TATT syndrome is medical shorthand for "malingering". He was sure that the tiredness was the result of the depression and completely dismissed the conclusions reached by her and her counsellor. He did order a few more blood tests.

We both left the room feeling short-changed. Attempts to start a discussion or ask questions had met with a brick wall. He was not at all interested in whether anything had changed in the 9 weeks since the first appointment at the hospital, for example she had intended to raise matters of bowel movements.

Since then she has had an initial consultation with our chiropractor, with whom we have a long-standing, trusting and friendly relationship. During the hour-long initial consultation Louise was able to offer another suggestion—Syndrome X which is connected to PCOS. Looking at the symptoms that are said to be characteristic of this collection I would say that I also fit the profile (apart from the problematic ovaries!), as does one of my sisters.

We have been researching Syndrome X and we have made the decision to try to change our diet to avoid hyper-glycaemic foods. We recognise that Syndrome X is not universally accepted so we will continue to research it before approaching our GPs.

A new model or moving along a continuum?

My intention in trying to define a new model is to try and define our target. We can then check our progress towards it. Will there be a paradigm shift or will we make continuous, smooth progress towards that vision? My feeling is that technological change is happening so quickly that we are likely to reach a tipping point in which society needs to make some very rapid changes in order to absorb the changes. Wikipedia has a good article on the philosophy of paradigm shift described by Kuhn.

I have a real problem with the amount of reading I need to do to do a good job on this topic. The Resourceful Patient stuff that Anne Marie referenced looks really interesting but is a very big read. I also had an interesting conversation with a friend (Matt Friend,in fact) over coffee and it would appear that his Master's thesis has some bearing on all of this as he looked at the literature of how markets develop.

The diagram shows Schumpeter's theory of long cycles to the development of the IT industry. It could be that we could develop a similar model for the development of medical science.
That way, I suspect, leads to a masters thesis at least.
I'm going to short circuit that and reveal the model that I want to propose as a starting point for the discussion.

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A Social Model of Health Management

A society in which a person manages her own health, and her dependents, through an open, informed and honest relationship with healthcare professionals and auxiliaries.

Note

Throughout this document the female shall embrace the male.

Definitions

Person

A human being! Includes healthcare professionals and auxiliaries when they are managing their own or a dependant's health

Dependent

A person who is legally deemed to be unable to manage her health for herself. It will be managed a legally nominated competent person.

A Social Model of Health Management

Firstly an apology—I have ignored several comments for almost a fortnight. Part of the problem is that I gained access to Google Wave and have been distracted by that, more on that later. Secondly, the weather and domestic duties have been getting me down and I have not had spare capacity to blog. However, I can reward myself with some blogging time today.

Secondly, welcome to Dr Anne Marie Cunningham as joint author of this blog. Thanks for your thoughtful post.

Let's take Anne Marieapos;s comments on my last post first.

but what are other examples where a traditional model of disability and a social model would take different actions? I'm trying to understand where the two models are in conflict with each other.

There was a perfect example on BBC Wales last night, in their documentary about the people affected by the thalidomide tragedy (Week in Week out—We're Still Here). The whole programme is a really good commentary on changing attitudes to disability but if you are pressed for time watch a segment about six minutes in when one of the people talks about the doctors' attitudes to them as small children: "They tried to replace the parts that were missing because of their perception that society would only accept them if they were as normal as possible". The old film has horrendous images of children fitted with ugly and poorly functioning prosthetics. Contrast this with the attitude of the mother of another of the children who sent her daughter to ballet lessons to improve her balance. That child is now a beautiful woman who keeps herself fit by swimming and runs her own business giving foot massage. I have to admit that in some cases the prosthetics were useful and gave the recipient a new lease of life. The point is that the medics assumed that all the children would need them and find them useful. The reality is that each differs and decisions need to be taken collaboratively.

I would also say that with regards to the cochlear implants, it is not universally accepted that having them is a bad thing.

With regards to Bobath therapy I can't see that anyone would have any objections to this.

I don't think I said that cochlear implants were always a bad thing, just that some deaf people feel sufficiently empowered to reject such a medical intervention. Similarly, I do know one empowered disabled person who rejects Bobath Therapy. However, in this case I am certain that this is a knee-jerk reaction to the word therapy. I would love to get her to visit the Centre and see what goes on there. I guess that the downside of empowerment is that it can produce stroppy people and mis-informed attitudes (I'll return to the importance of information later).

Most people in health related areas would say that we have moved beyond the very paternalistic model that you ascribe to current medicine.... as a model at least. In reality there may still be problems.

I agree! I'm trying to define the point from which we are moving. So this extremely paternalistic model is out-moded but not gone and leads to bad outcomes.

You give the example of your mother-in-law's death and state that you are sure 'in another context' her condition would have been resisted by the professionals or family. What kind of other context? If the existing model allows this to happen- and I don't think that there is any chance this is a one-off, then what is added by the new model?

The sorts of things I was thinking of here were: people who demand drugs which are not generally available and spend huge amounts of money to gain a few more months of perhaps poor quality life; where family members or members of the medical team have difficulty accepting the person's decision. I suppose too that I'm trying to contrast the old assumed omnipotence of the medical profession where it would perhaps have been anathema for a patient to withdraw from major treatment.

Anyway, perhaps I exaggerate to make a point. People are able, if they choose, to take a more active part in managing their health but this empowerment is not universal an we need to make it so. So I'm trying to define an ideal and using its antithesis to point up what we need to change.

Why we need empowered patients- a GP perspective.

It was great to see Keith start this blog. Conversation should be open, clear and transparent. As you will see from my comments on his first few posts, I'm not sure that talking about a new model of health or medicine helps at this stage. We do seem to be moving along a continuum, rather than about to experience a paradigm shift. For that reason I am more interested in talking about what is good or bad about our current situation and how we could make it better. Maybe I am too much of a pragmatist to really be an academic theorist!

Back in 2001 I was working for 6 months in public health in Avon Health Authority in Bristol. I came across a really interesting book by Muir Gray, called the Resourcesful Patient, that was available free online. He suggested that much of the authority of doctors was now passing, and that patient would and shoud have a much greater role in determining their own health care choices. Unfortunately the book is no longer freely available online- I'm not sure why- but it means that I may be getting aspects of it wrong so I will not say much more about it! (EDIT: Thanks to a reader who has directed me to this archive of the Resourceful Patient. Read and enjoy)There are some good reviews of the book around including this one by Peter Toon. In it Peter, says that although technology and the internet will allow patients to have greater access to information about their health, and will to a certain degree level the interactions between doctor and patient, many patients, particularly those from poorer backgrounds, who have had less access to education, may get left behind.

This is a big concern to me. I work in the South Wales valleys. Funding for my first post here was initially provided by the Welsh Assembly Government to try and increase academic links between GP practices in the valleys and Cardiff University, so that both could learn from each other. Julian Tudor Hart, a GP from South Wales, first described the Inverse Care Law in 1971, whereby those people who have most need for healthcare have least access to it. One would think that the NHS should be evening things out and ensuring that those who need treatment, get it. But things are not as good as they should be.

GPs in poorer areas refer less patients to secondary care, and for possibly less serious conditions like dermatology and allergies the differentials seem to be even higher. But it is worrying that in inner city London if you are identified as having cardiovascular disease you have a 1:43 chance of dying, whilst in the leafy suburbs that chance is 1:124. So is this just because GPs in poorer areas are not such good doctors and are not working hard enough? The Care Quality Commission (CQC) thinks that GPs need more incentives to make them sort this problem out. But those who have been working in Primary Care Trusts in England trying to tackle health inequalities know that the problem is more complicated than this. If you read the strategies that they are taking about to try and improve health for the most needy populations, particularly the words of David Regan, from Manchester, you will see that empowering patients  means helping patients to know about the symptoms of illness that they should be looking our for, and working with local communities. Beyond that it means improving education and reducing unemployment.

People used to ask if I was bothered by patients printing of information from the internet and bringing it to a consultation. I most certainly am not. These patients are taking advantages of the technologies available to them to empower themselves. I worry about the fact that not more of my patients do this. This is our challenge.

More on the Social Model

There have been several comments on my posts so far and I want to use two of them as the basis of this post. The first suggests that my previous post needs clarification and the second gives a wonderful name for the model I hope we can develop together.

Clarification of the Social Model of Disability

Anne Marie Cunningham said...

I can see this is going to be an interesting discussion! So would a social model of medicine say that we shouldn't bother to try and treat disease? Instead we should accommodate people who have illness and make their lives as comfortable as possible.

Under some circumstances yes! Let me use mother-in-law's death as an example. She was diagnosed with kidney cancer and had the affected kidney removed. Her quality of life improved for a while but soon she became ill again. The cancer had spread to her other kidney and secondaries had appeared. She was 77 and had been widowed for seven years. She herself took the decision that she had had a good life and could face her end. Being a Christian probably helped. She refused the treatment offered (more surgery and chemo) but accepted palliative care and died soon after. Three of her four children were with her when she died.

I can imagine that in another context her decision would have been resisted by the professionals and/or family.

I guess I get a little confused about the social model of disability. If I had broke my wrist 100 years ago I wouldn't have had the surgery that helped minimise deformity as it healed and so is encouraging a return to normal function. If I had been left with impaired function in my wrist then I would have a disability and could have been handicapped by this. Yes, efforts could be made to reduce this by adapting my car or getting me software so that I could voice dictate rather than type. I might have moved in to an area of medicine that didn't involve physical contact with patient.

All of that would have reduced the impact of my disability on my life. But the medical model has meant that I haven't had to endure that.

You seem to be confusing the Medical (or Traditional) Model of Disability with medicine in general. I have edited my previous post to make it clearer when I am talking about the former, and when the latter.

To me it seems obvious that the two models are not opposed to each other but can live easily together. Medically we do what is sensible and what the patient agrees to, whilst still helping them to live socially as best they can with whatever impairment or disability is retained.

The Social Model of Disability doesn't say medical interventions are necessarily bad. Disabled children should receive the same childhood vaccinations as any other child, for example. What it discourages is medical interventions aimed at "fixing" the impairment. Many deaf people could have some hearing restored by cochlear implants but will resist the idea. They have a perfectly good form of communication in American or British Sign Language, they have no need to hear. It's your problem that you can't understand them, so get an interpretor. This is a hardline interpretation but it exists.

However, the model does support the idea of working with health and other professionals to remove the barriers. Bobath Therapy is a good example. This uses speach, physio- and occupational therapists to help children with Cerebral Palsy and their parents overcome some of the effects of their impairments. Bobath Children's Therapy Centre Wales illustrates this with a number of fictionalised stories—I find Bethan's Story particularly affecting.

A proposed name for the model

In a comment to my previous post healthskills said…

I'm both a health provider AND a patient (tell me which health provider isn't going to, at some point, become a patient?!!).

I totally endorse 'health literacy' or becoming informed and in charge of their own health management.

I'd prefer to call it 'social model of health management' rather than medicine - because medicine continues to focus on deficits, impairments and biology without considering the psychological and social, and without considering the strengths, resilience and assets we all come to health care settings with.

For me, that says it all. We have a name for the model—Social Model of Health Management. It also suggests a Twitter tag—#smhm.

The Analogy with the Social Model of Disability

Ok, I've stated my premise, now I need to go about developing the argument!

First of all let me direct you to the post that started me thinking about all of this earnest: Why I think I am a patient and not a consumer. Even more important than the post are the comments it has generated. In fact, I would like to invite Anne Marie and everybody who has commented on the post to become co-authors of this blog! In time I will try to synthesise the comments into the model.

My Bona Fides

I gained a Biochemistry degree in 1969 from Sussex University. Later that year I wrote my first computer program and three years later I become a programmer with ICL, developing the VME operating system. After 13 years at that I joined a UK bank and eventually became an Information Architect. I beleive that the biochemistry background and a continuing interest in the biological sciences and the analysis skills required to be an Information Architect give me the skills to look back over my own experience as a cancer patient and to create a general model from that and my analysis of other people's stories.

I have also had first hand teaching about the Social Model of Disability by Alison John. Ally is a remarkable woman who lives with Cerebral Palsy and runs her own training and consultancy business, Alison John and Associates. Alison was one of the disabled^[1} young people who contributed to the development of the Social Model during the UN's International Year of the Disabled in 1981. I've worked with her as her Personal Assistant several times and she made sure I understand, and can apply, the Social Model.

It's going to be difficult to be entirely objective about this but so long as I am aware of the danger I should be able to address it.

Despite the emphasis on "me" and "I" in the foregoing this is meant to be a collaborative process, which is why I have started this blog. Please comment on the entries. I am also open to requests to become co-authors of the blog and hence the model. Either leave a comment on the blog making the request and include URL's of your blog or whatever so I can get an idea of what your contribution might be. Somebody who disagrees might be useful.

As an aside, I would be interested in using Google Wave for this process. I have requested an invitation but it will probable be a long time coming.

The Analogy

The Social Model of Disability was developed an antidote to the Medical Model of Disability. In order to spare the feelings of medical professionals the emerging preferred term for the Medical Model of Disability is the Traditional Model of Disability^[2}

In essence the Traditional Model of Disability said "You are disabled because there is a problem with you. We need to fix the problem to fix you". In other words, attempts were made to alter the disabled person in order to make them fit better into society. However the Social Model of Disability says: "You have an impairment. Because of the way society is organised it has erected various barriers that prevent you reaching your full potential. Let's try to fix society." This has given rise to legislation to try to reduce those barriers. An obvious example being the provision of ramps or lifts to enable access to buildings for people who can't manage steps for whatever reason.

In my view the Traditional Model of Disability is only a subset of the still prevailing and traditional view of Medicine in general. This model is authoritarian, cabalistic (has information only made available to insiders), hierarchic, paternalistic and even abusive^[3].

This model is currently being challenged and the proponents of change wish for an open, equal and informed relationship between the person who is managing their own health and the health professionals who are enabling them to adress any issues that arise.

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[1}For American Readers: Where I use the word disabled of any word derived from it, you should substitute handicapped but be aware that in the UK the H-word is regarded by disabled people in the same way as the N-word by black people.

[2] Personal communication from Lynne, Disability Equality Trainer, 2009-10-28.

[3] Consider the use of the "chemical cosh" to restrain difficult people or even the routine dispensing of strong sleeping pills to patients to ensure that the night staff have an easy time of it.

What is this blog about and for?

For the last three years I have kept a Livejournal blog describing my experience as I was diagnosed and treated for prostate cancer. I am no-longer receiving any treatment for the condition and so I regard myself as cured and call myself a cancer survivor.

I created that blog because I wanted to record and communicate my experience as a way of demystifying the process and helping people understand that cancer is only another treatable disease. The outcome is often (but not always) that the person is able to live a normal life or, at least, live a life in which the effects can be managed. Even where the condition is the direct cause of the death of the person it is still important to take the positives from the situation and make the information available to other people in the same situation.

I have discovered that there is a very vigorous debate going on the internet about the relationships that people have with the medical profession. It covers such things as: "What do we call such people?"; "who owns the information?"; "Whose life is it anyway?". It goes by various names: "Health Advocacy", "Participatory Medicine" and lots of others.

It seems to me that there is a paradigm shift going on. People have access to information that was previously only available to health professionals, their own information is held within the health system but it could now be owned by the person not the system. These are technological drivers. In the United States there is a huge debate on how to make health provision fair and efficacious. This is a major social change. The other driver (both technological and social) is the explosion in social media which is enabling this debate to occur between people across the world.

I am British citizen who is more than happy with the National Health Service and would never consider buying health insurance.

The thesis I want to explore in this blog is that there is a paradigm shift happening and it is akin to the ways in some societies (notably Europe and the US but by no means exclusively) have changed the way they regard and treat disabled people over the last 20 years or so. The major change has been the development of the "Social Model" of disability. I believe that we are developing a "Social model" of medicine.

I attended a "Disability Equality" training course last week and one of the participants complained that disabled people had created a new establishment when he asked who the "we" were that our trainer (who is visually impaired) kept referring to. She replied: "empowered disabled people". To my mind that is what is happening in medicine—people previously referred to as "patients" are becoming empowered and developing a new vocabulary as a result.

In coming posts I will develop this theme and look at some of the terms that are being bandied about.