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Supporting those with long-term conditions

1 December 2010

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Jim Phillips

Policy Director
Expert Patients Programme Community Interest Company

Jim has been integral to the development of self-management in the UK over the last 12 years. He has worked extensively across the NHS with healthcare professionals and patient groups, looking at how to improve the levels of self-care and quality of life for people with long-term conditions. He was a key member of the Expert Patient Programme task group and went on to set up the Expert Patients Programme in England

Anyone who works in the NHS or is involved with health and social care will be acutely aware of challenges facing the sector. In the UK, over 15 million people are living with a long-term health condition. We have an ageing population, with the associated health issues that brings, and a rising tide of ill health triggered by obesity.

A common theme of many long-term health conditions and age-related illnesses is that some of the factors that can lead to better health and a reduction in the cost burden are not under the control of the clinician – there isn’t a pill that can be prescribed. The ability to manage long term conditions and lifestyle-related illness effectively is significantly affected by social and environmental factors, income, education and the ability of a person to make changes to their lifestyle. To put it bluntly, they are issues that only the patient can do something about – but often only if they have the right support at the right time.

The Wanless Report of 2002 showed that the benefits generated by an NHS that promotes health, self-care and early intervention, and that integrates services around patients, are potentially sizeable, amounting to billions of pounds.(1) This was termed the “fully engaged scenario”. The report illustrated the considerable difference in expected cost, depending upon how well our health services became more productive and how well people became fully engaged with their own health.

Yet little is done to look at how well the NHS is working towards greater engagement of people in their own health. This needs to be a key success indicator, as unless the NHS is orientated to achieving this then the current efforts to cut cost will soon be washed away by the rising tide of need.

The traditional response has been to provide more information and advice: what to eat, how much exercise, how much you should drink, etc. Yet information on its own often does not lead to changes in behaviour. In addition, conflicting messages given by health professionals often increase patients’ anxiety and confusion about they need to be doing to improve their health. This is further compounded by stories in the media.
At the heart of policy has to be a range of support programmes for patients, and training for clinicians, to better enable patients to make changes in lifestyle.

There has been considerable policy aimed at putting the patient at the centre of the NHS. This has centred around increased choice, based on good information on the performance of hospitals and clinicians, and the role of the GP as an expert guide. However, there is evidence that, for many, increased choice increases people’s anxiety – not a useful outcome for a group of people who already have raised anxiety.

So what should the response be? The ideological arguments of where and how services are delivered should be immaterial if we really start taking onboard the concept of a patent-centred NHS. It should be the interaction between the care team and the patient that begins to generate the services that are available and how, when and where they are delivered.

Care planning
The first step in this is understanding the local population. An advantage that GP practices have is a registered population. This should enable practices to begin to stratify their population group, based upon disease prevalence and risk of developing a long-term condition, and cross-reference this against the local environmental and social factors.

This, along with data on unplanned admissions, emotional wellbeing and other key health indicators – as well as an understanding of the different cultures present and their attitudes to health and health services – can enable practices and groups of practices to think through what types of interventions may be needed, who is best placed to provide them and where they are located, and what skills and tools the care teams will need.

If we are going to meet the needs of people with long-term conditions, then the clinician/patient relationship and interaction is key. A major tool in developing this is care planning and a care plan. What this is, its potential and how to care-plan actively is still poorly understood and overlooked.

The care-planning process should see a coming together of the patient’s goals and clinical goals. Establishing the starting point for the patient and what their goals are will inform the clinician of what support the patient will need to achieve these goals. This is particularly important, as often the clinician will be asking the patient to make changes in diet, lose weight, exercise, etc.

These are areas with which a patient may have been struggling for many years and can represent heavily ingrained behaviours that cannot be expected to change quickly or without support.
Out of the care-planning process, the identification of goals and what support is needed to achieve them will then determine the type of services that need to be in place to support the patient. It will also help determine how and where these services need to be delivered: community, hospital and
so on.

Regular reviews of the care plan will identify barriers that arise and additional support that may be needed. This may well involve support around changes in employment, more specialist mental health where depression or alcohol has become an issue, through to benefits advice and housing. These are all issues that impact on the person’s ability to improve their health.

Methodical planning
All of this cannot be achieved by the GP alone in one or two consultations. There needs to be a clear strategy around workforce planning to ensure that skills and time are used most effectively.

For example, health trainers can easily work with people with long-term conditions to run support programmes – these may take the form of group interventions, online learning or telephone support to help keep the patient motivated and focused on change. Some GPs may specialise in long-term conditions.

It is this combination of understanding the local population and the local determinates of health, along with good methodical care planning and patient engagement, that needs to be the engine that determines the delivery and type of local
NHS service.

Many of the tools have been developed and tested: care planning, clinician training around self-care support, psychosocially orientated cognitive behavioural therapy self-management and patient education programmes are all available and with proven outcomes.

The main task facing the NHS is how to bring together the examples of best practice and those programmes and approaches with proven benefit into a coherent model. Recent development programmes by organisations such as the Health Foundation and the Expert Patients Programme have been looking at what happens when these different elements are brought together. Emerging findings are positive, with indications of improved outcomes for patients, greater job satisfaction for clinicians and services being shaped by patient need – a bottom-up approach resulting in patient-centred services.

There is only so much the NHS can directly do for a person with a long-term health condition. The harsh fact is that much of what needs to be done to ease the burden of cost can only be done by the patient. The NHS has to ensure that the right support and encouragement is in place to enable that to happen. At the moment, the NHS is often part of the problem and not the solution.

1. Department of Health. Securing good health for the whole population. London: DH; 2004. Available from:…