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Investing in self-care support

Self-care support is a vital resource that can reduce demand on health services, writes Jim Phillips.

Self-care support is a vital resource that can reduce demand on health services, writes Jim Phillips.

Why should commissioners consider self-care programmes now?

Over the past 10 years, self-care support has become a central feature of health policy. It is promoted in the NHS Plan, the Wanless report and the white paper Our Health, Our Care, Our Say.

Last month the concept was given even more prominence when Prime Minister Gordon Brown suggested that the NHS should offer the 15 million people with long-term conditions in the UK ‘the choice of greater support, information and advice, allowing them to play a far more active role in managing their own condition'. New Department of Health guidance on the subject is expected this month.

What do we mean by self-care support?

There are three main terms that are often used:

• self-care: the actions an individual takes to maintain health, such as exercising or self-medicating for minor ailments

• self-care support: the structures put in place to support the individual, such as exercise ‘prescriptions', diet support, health information, and courses run by the national Expert Patients Programme (EPP)

• self-management: the term most used in the voluntary sector and in conjunction with programmes such as the EPP.

Surely we offer patients enough support at the moment?

Traditional patient education tends to be information focused, whereas self-care support and management programmes are designed to meet the psychosocial needs of the individual as well as providing health information.

Clinicians have often noticed that the degree to which a person is disabled by a condition is often not concurrent with the severity of the condition. It is becoming increasingly recognised that a person's beliefs about their condition and other psychological factors can have a significant impact on health outcomes.

Depression, for example, is now recognised as a major causal factor in admissions to hospital among people with a long-term condition.

Such individuals need to have the skills and confidence to:

• manage their medications and undertake activities recommended by clinicians, such as diet, or using an inhaler

• deal with the emotional impact of having a long-term condition

• manage work and family, and maintain social connections and communication.

Is there any proof that self-care support works?

Over the past few years a significant body of research has grown to demonstrate the effectiveness of self-care support.

Studies by Bob Lewin, professor of rehabilitation at the University of York, and others have shown that self-management can reduce or delay the need for operations in cardiac patients.

A DH literature review has also found self-management significantly improves psychological wellbeing and leads to more effective use of services.

The chronic disease self-management programme developed by Stanford University, and now adopted for use in the UK via the EPP, was subject to a randomised control trial before its rollout.

More than 600 people with a range of long-term conditions took part in the trial. Those on the programme had:

• reduced hospital overnight stays

• improved confidence in managing their condition

• improved psychological wellbeing

• improved partnerships with doctors

• improved quality of life.

The programme was also found to be cost-effective.

A further unexpected finding was that the programme significantly reduced

social isolation and helped create social networks, the significance of which should not be overlooked when commissioning such services in areas of high social inequalities.

Does self-care support have any shortcomings?

A key criticism of some lay-led approaches such as the Stanford programme is that they don't go far enough in reducing healthcare costs and producing changes in key biomedical markers such as blood pressure or weight.

Two main reasons have been put forward in response, which commissioners need to consider when designing services.

1 Lack of flexibility in the system, such as not giving patients control over the setting of outpatients.

A study by the National Primary Care Research and Development Centre at Manchester University, published in a peer review journal in 2004, found that an ‘open access' follow-up arrangement for patients with inflammatory bowel disease helped reduce demand, improve patient care and reduce the severity and length of acute episodes.

2 Lack of skills among clinical teams to work alongside patients in joint goal setting, agenda setting and other self-care support enablers.

What are the ingredients for a successful self-care service?

For a service to be effective in supporting an individual and their family or carer to develop skills, services need to cover the following four domains:

1 Medicines management: such as dose adjustment, with advice usually condition-specific and provided by clinicians.

2 Beliefs, coping actions, acceptance and mindfulness: tackling key misconceptions of disease and supporting the patient to move to a point of acceptance with active management.

3 Motivation, confidence and perceived control: goal setting and action planning, using cognitive behavioural methods; best developed through group interactions.

4 Anxiety and depression: can be dealt with early through lay-led group courses but may also need more specialist CBT programmes.

It is also important to remember there is no one-size-fits-all programme. For example, people newly diagnosed with type two diabetes will need a programme such as DESMOND (the well-known one-day course, Diabetes Education and Self Management for Ongoing and Newly Diagnosed); but they may well also benefit from a longer generic course that helps them to develop support networks and additional lifestyle skills and put into practice some of the agreed goals from DESMOND.

What is the department of health doing to promote self-care support?

The need to expand and diversify the range of self-care support programmes was recognised by the DH when it set up the Expert Patients Programme Community Interest Company last year.

Building on work that got under way in 2001, this not-for-profit company has been asked to increase the number of patients with long-term conditions who are put through an EPP course from 12,000 to 100,000 a year by 2012.

About 30,000 people to date have gone through the core six-week course, delivered by trained and accredited tutors, themselves also living with an LTC. Topics include healthy eating, dealing with pain and extreme tiredness, relaxation techniques, and coping with feelings of depression.

The EPP can also make available to commissioners programmes specifically tailored to different clinical conditions (such as mental illness or substance misuse), needs (returning to work), communities (such as young people, or those who speak other languages), or to those caring for an adult or child with an LTC.

What lessons have been learned about implementing self-care on the ground?

In the past there has been a tendency to recruit on a first-come, first-served basis, potentially excluding those who may benefit the most. So programmes need to be commissioned with clear criteria in mind of who would benefit.

There is a range of tools available to help identify patients who would most benefit such as the Patient Activation Measure and depression and anxiety measures. These help to detect poor motivation to change, low self-confidence, depression and anxiety – all of which-indicate poor self-management and hence higher rates of acute episodes.

There is a need for far greater integration with GP referral systems, and training for specialist nurses and clinicians to recognise these key indicators in the course of every day consultations.

In addition, clinical teams need to be able to adapt and respond to patients as their confidence and ability to self-manage improves. This may mean moving from fixed routine outpatient appointments, to jointly created care plans with fast access to a specialist when there is an acute episode.

EPP CIC is now developing a range of programmes delivered both by health professionals and lay people, modelled on an effective clinician-patient partnership where both areas of expertise are fully used; the patient's experience of living with a condition, and the expert clinical knowledge of the health professional.

Ongoing support for patients is also vital. Regular semi-structured support groups with a focus on ongoing behaviour change are a very cost-effective way of maintaining positive changes and developing healthy communities.

How much does IT cost?

The cost to PCTs wishing to run EPP courses ranges from £250-450 per person, depending on local circumstances and course requirements.

Jim Phillips is director for product development and quality at EPP CIC. For more details email

self-care support is designed to meet psychosocial needs as well

Self-care support is designed to meet psychosocial needs as well as provide information

the six-week course is delivered by trained tutors, themselves living with

The six-week course is delivered by trained tutors, themselves living with an LTC

How self care support reduces demand on services How self care support reduces demand on services

Data from about 1,000 EPP course questionnaires showed that, four to six months after completing the course:
• GP consultations decreased by 7%
• outpatient visits decreased by 10%
• A&E attendances decreased by 16%
• pharmacy visits increased by 18%
Source: EPP CIC

Patient and GP views on self-care support Patient and GP views

Kathy, Ipswich
‘I did the expert patients course because I've been on a mission to make some progress with my chronic lifelong acute eczema and asthma. I now have the confidence to search out people such as the dermatology nurse practitioner and to a new modification method for my skin, which is brilliant. I am able to swim again for the first time in 20 years. I have also been on inhalers since they were invented, and now I don't need them.'

Dr Nicola Jones, GP in south-west London
‘Doctors should see expert patients as people who really complement their skills. Some doctors may be resistant because they fear demanding patients. They perceive knowledgeable patients as scary, articulate, with yards of stuff off the internet, asking questions we don't know the answers to. That is quite a big challenge to a doctor's skills, and perhaps their ego.

‘But there are a lot of new expectations about healthcare providers and a shift in thinking is needed. GPs will find that they are asked questions they cannot answer. Medicine is so complex: it is arrogant for us to think we can know everything, and unreasonable. There is a difference between a "demanding patient" and a patient who makes "appropriate demands", which is what an expert patient will come with. They are so satisfying to a clinician.'

Regular support groups are a cost-effective way of maintaining positive changes Support Groups

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