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The times we are working in now need a great deal of accelerated change and there must be no negotiating that down. So my mission statement for this part of my consultancy career is to be clear that there needs to be and will be a lot of change from the work that I do with individuals and organisations and if organisations don’t want that, then it is probably best to go somewhere else.

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More reflections on self management in NHS care

Filed Under (Resources, Self Management) by Paul on 28-07-2011

Over the past year I have been working with a number of organisations to think through how the NHS can achieve much better outcomes by encouraging patients take on much greater self management of their long term conditions. Whilst few people in the NHS would ever say that they are against self management as a form of care, it has failed to become part of the central activity of the NHS and remains on the periphery.

Over the last year I have occasionally posted about this issue bringing reactions from some commentators that usually runs along the lines of – “It’s all right for articulate middle class patients, but if you saw the people who come to see me they could never self manage their illness because they don’t have the capacity.” – Their argument is that some patients demand dependency and aren’t be able to take charge of their own condition or health.

Self management (sometimes called co-production) is one of the best ways in which the NHS is going to change its value proposition for how it uses resources to improve health care in England. Value in self management is obtained through patients managing their own conditions.  The development of patients’ capacity to better manage their own health care during the 5800 annual waking hours they live with their condition will deliver much greater productivity and improvement in outcomes than any amount of concentration on the 4-5 hours in that same year that most people are in contact with NHS medical staff.

Over the next year I will be posting more and more on examples of how this actually works. In the rest of my work I will be trying to move what has been, up until now, a marginal activity into the mainstream of the NHS.  It is vital that all of these developments scale up to sufficient size to begin to change the value proposition for health care in the NHS.

In July I attended the London launch of the Rheumatoid Arthritis Self Management Programme. Because this was mobilising self management through national organisations such as the Expert Patients Programme and a national patient’s organisation this is interesting both as a specific programme and as a general approach to self management.

This launch was to introduce the production of a specific Expert Patient Programme for people with Rheumatoid Arthritis. It had taken 3 years of development to reach the launch and because this was done with the active support of senior rheumatoid arthritis doctors, it has been created with great thought given to the whole science of the condition.

Peter Taylor, Head of Clinical Trials from the Kennedy Institute of Rheumatology from Imperial College, made the case for self management from the clinical perspective. One of the problems he identified was the disconnect between the treatment goals of doctor and patient. Given the way in which rheumatoid arthritis (RA) can develop to inflict worse and worse damage to the joints, the doctor’s main aim is to limit that damage in the future .The doctor wants to halt progression and prevent future disability. Most patients want to feel better straight away. They are in debilitating and exhausting pain and need to feel better as quickly as possible.

The doctor has a long term perspective to stop deterioration. The patient needs short term relief. He suggested that these different goals were usually inadequately discussed during the consultation. The doctor was working for the patient’s long term interests but they weren’t feeling much better. .

He suggested that this interaction could be improved by a set of simple questions in which the patient asks the doctor about their condition and the immediate and long term steps. This may appear deceptively simple, but mirrors very closely the intervention encouraged in care planning for diabetes. A slightly more active stance from the patient during the consultation changes the result a great deal. It not only improves the experience of the consultation but also improves the long term outcome for the remainder of the period between consultations.

Graham Johnstone, an RA patient, talked about his experience of being diagnosed and suffering from RA and how a tailored Expert Patient Programme (EPP) course that was being run as a pilot had had a big impact on his life.

Graham was diagnosed in his 50s and experienced RA having a very debilitating and life changing impact on him, his work, and family life. He talked about what happens when you are diagnosed and how at first you research RA on the internet and get as much detail as possible. You discuss it with your family and at work and try and construct a new life that helps you deal with the pain and fatigue.

The initial experience is that you are not sure whether you are the master of the disease or the disease is the master of you. This is a phrase that people with a long term condition frequently use. The experience is of ‘losing your old life’ and of your new life being run by your condition rather than you running it. With a new condition that reminds you that it is there by constant pain you find it hard to relax and there are continual sleep problems. There are a number of very practical issues such as developing the right environment for good sleep, which you have never had to confront before but need to do so now.

One of the main themes of the EPP course was about providing the possibility of much greater control – and being positive. The course consisted of weekly meetings with a key aspect being the setting of goals and planning actions in each meeting. .

Whilst the course was factually based it was not learning the facts that were important but that you were learning how to live your life as someone with this condition. One of the most telling experiences for me was how he described learning to have a new dialogue with yourself.  This is not an abstract activity, but very, very concrete. What are you saying to yourself to get on top of how you feel and how you are living with the condition? What is the self discussion with which you engage and when and how does this work?

Whilst you are alone with this condition nearly all of your life one of the main experiences of the EPP course was that you learn to better understand your RA in the context of others with the same disease. You receive reassurance from others about the efficacy of drugs and how to cope in the longer term. Learning with others how to set realistic goals, and planning to hold yourself to each challenge, is much easier than doing this on your own.

The session concluded with Jaqui Pollack from EPP who talked about the research carried out by EPP into the overall efficacy of the courses in better self management.

The courses have a much bigger impact upon the economics of the NHS, and reduce resource usage, where they target specific patients who are already using a lot of NHS resource. If patients taking the course have a lower baseline of self efficacy then by creating better self management the outcomes of the course create more efficiency.

This may seem obvious but, for the immediate future, this is a vital issue for the economics of the NHS. If we provide new self management resources for patients with long term conditions then it is likely that some of them will improve the efficiency of the NHS. However it will be much more efficient to target patients starting off with less self management. More resources will be saved by working with the sicker patients who will use more resources when their conditions deteriorate.

As EPP said – if new courses target those patients with currently higher than average medical usage for that condition, it will maximise benefits. That is not to say that other patients do not need such courses, but if the object is to save resources then it would be best to target those that will use the most without intervention.

This is one of a number of important interventions taking place that will save resources. The issue is whether NHS commissioners, GPs or PCT clusters will want to save that money or will be more concerned with the risk of commissioning something new.

Comments:

One Response to “More reflections on self management in NHS care”


  1. So “self care” is important and part of the government’s reforms. McKinsey says that there are £1.9 – 2.5bn potential savings from a £19bn current spend (20% of that on diabetes). So why is it that PCTs are cutting back on DAPHNE and DESMOND courses, which are aimed at teaching better self management of type 1 and type 2 diabetes?

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