The Planning Begins

Anne Marie and I met up for lunch again and gently made some key decisions. We now have a Planning Wave and I will abstract the key bits here:

Determine Conference Paradigm

Research the BarCamp Model

We both feel more comfortable with this model. It requires less facilitation and the method is out there. Contrast this with OST

Research the Open Space Technology Model

OST appears to be totally proprietory. It is not easy to find "how to" information and would probably require one of us to go through (expensive) training.

Choose Paradigm

We've decided on Bar Camp. We have a local expert who ran a Barcamp at the end of January—Carl Morriws and Hacio Iaith.

Action: KU to contact Carl and invite him to meet up in a fortnight. (Done Awaiting response)

Define Theme

After much discssion we ended up violently agreeing that we wanted to explore all the ways in which people might need empowerment in, so not just "medical health" but physical, nutritional, mental, spiritual , etc. We felt that we should be using the WHO definition of health. (URL= http://www.who.int/about/definition/).

The theme is:

The unconference would create an opportunity to look at barriers, promotors, opportunites, potential solutions.

We are considering the title and strapline. We both want to avoid the word "patient" and Anne Marie wants to avoid "mpowered" too as not being a term that everyone would understand. We also want to emphasis that we are looking at the big picture in health so my current sugggestion is :

Health Camp Wales—How can we enable the people of Wales to optimise their well-being?

A tweet-up and a decision

Ann Marie and I met for lunch on 2010-01-20. This was arranged through Twitter and was thus a "tweet-up". A lot of the time was spent in that all important human activity "socialising". We now know each other a little better and that helps to build trust and understanding.

The important part of the discussion is that we have decided to organise an “unconference” in Wales to explore ways in which we can successfully empower patients to take more control of their health and work collaboratively with medical professionals.

We want to keep it to people working in health in Wales or experiencing the health system in Wales because health is a devolved power and the WAG has created significant differences in the way the NHS is run in Wales from the way it is run in England. For example, at the time of writing all prescriptions in Wales are free but there is no equivalent of NHS Choice.

We are at the very early stages of planning this but I am already looking for health professionals, patients and patient representatives who might be interested in attending. If you want to express an interest in the conference please add a comment with your name, email address, Google Wave identity (if you have one) and a short description of your area of expertise/interest.

How can I empower other patients?

It's been sometime since I did anything to develop the model I presented in my first post in this blog. The most recent post is presented as an account of an actual consultation and how it left the patient (and her supporter) feeling. It is thus part of the body of evidence I am drawing on.

Anne Marie and I have had a vigorous private debate over on Wave which had two components:

1. I was trying to use my own experiences within the NHS to demonstrate that medicine used to be much more paternalistic  than it is now but that it is not yet where we would want it to be.
2. We were to trying to understand where each other is coming from and how that affects the way we regard medical practice.

Anne Marie concluded that I am effectively an engineer and thus look for clear cut solutions. I am also sightly older than the NHS so my initial impression of medical practice were more "old-school" than Anne Marie's; what's more she is an educator and thus pretty much at the leading edge of establishing best practice in modern medicine.

I need to explain the philosophy behind defining the kinds of models that I have been using. The techniques come from my background in Business Analysis and are meant as tools to understand where an organisation has come from, where it wants to be sometime in the future and where it is now. It is then possible to articulate a set of well constructed goals and objectives, projects etc... that will move the organisation towards the desired end point. This is a purely intellectual process; the skill comes in communicating the strategy to the people who are going to be affected by and effecting the change. More often than not in the commercial world this where management fails (The Post Office and British Airways are probably cases in point.)

I hope that Anne Marie and I agree that medicine is more collaborative than it used to be but not as collaborative  as we would like. Anne Maria is doing her bit to educate new practitioners t work more closely with the people they see and help them manage their health. However, there are risks that this model will not be universally applied nor accessed by all people who need it.  South Wales in particular has a significantly large group of people who are disadvantaged by generational unemployment, poor education and digital poverty (lack of access to high speed internet connection and the ability to find and evaluate information about their health needs and opportunities).

So I've decided that rather than faff about trying to define a Nirvana I simply need to help build it. There is sufficient consensus of what the future should be amongst "forward-thinkers" that we should get on and do.

So Anne Marie, what can I do to help the patients in your GP practice to become better empowered?

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.