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4. Supporting self care

Key Actions

  1. Develop a strategy to support self care.
  2. Educate and support people to manage themselves and their condition.
  3. Implement Expert Patient Programme through PCTs by 2008.
  4. Use Local Strategic Partnerships to strengthen multi-agency (community and voluntary organisations) support and co-ordination.
  5. Look to the guidance in the Public Health White Paper.

Ratio of Shared Professional Care to Self Care across the Long Term Conditions population base.

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Local health and social care partners should ensure self care and self management are priorities in local planning and commissioning and should mainstream activities to support self care. The new primary care contracting arrangements - including new GMS, PMS, PCTMS and the new pharmacy contract - will give PCTs real options for sourcing the best services to support self care.

Self care is one of the key pillars of The NHS Improvement Plan vision for a patientcentred care system and is an important strand to the Government's overall strategy for health. Supporting self care is essential to sustaining delivery of the PSA target in order to produce better health outcomes, slow disease progression, ensure better management of the sudden deteriorations often associated with long term conditions and result in improved quality of life for people.

For people with long term conditions, self care and self management have become increasingly important in improving well-being, maintaining independence and quality of life.

For example, patients with diabetes are relatively high users of health services. Yet each sufferer spends on average just three hours a year interacting with health professionals. For the remaining time, they and their families handle the daily challenges of the disease themselves.

Skills and knowledge

Health and social care providers will need to develop appropriate and accessible information, skills training and tools and equipment in order to empower patients and their carers to maximise their role as providers of care.

Developing generic self care skills

The Expert Patient Programme (EPP) has been central in spreading good self care and self management skills to a wider range of people with long term conditions. The programme provides group-based, generic training and is delivered by a network of trainers and volunteer tutors all living with long term conditions themselves. The EPP will be made available through all PCTs by 2008.

Educating about specific conditions

Educating patients to care for their specific condition is another important part of supporting self care. Disease-specific programmes such as Dose Adjustment for Normal Eating (DAFNE) and Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND) for diabetes apply the principles of peer support, but focus on enhancing the patient's skills and confidence in managing their symptoms and medication.

Information

By increasing the amount of information available to patients, health and social care providers can empower them to take better care of themselves and their own conditions. The EPP pilots and other local initiatives to support self care and self management have highlighted the need to pro-actively engage patients. This is not only about getting the right patients involved. It is also about ensuring that once they are 'through the door' they receive relevant and accessible information that meets their diverse needs.

Helping patients get the most from their medicines

Giving patients advice and support about their medicines is another important element of self management. Around half of patients with a long term condition do not take their medicines as prescribed. However, for patients to take real control of their conditions, they need fast and convenient access to medicines, involvement in decisions about those medicines, advice about how to take them and information on any side effects which they may suffer. Pharmacists have an increasing role as a source of advice for patients and their carers.

The Medicines Management Collaborative - run by the National Prescribing Centre - is focusing specifically on improving the advice and support patients get in primary care about getting the best from their medicines. The collaborative is being rolled out in waves and is already carrying out pilots in which pharmacists work with GPs to review patients' regular medicines and to offer one-to-one reviews with patients. Early results show significant improvement in the number of patients having medication reviews (for example, from 43% to 76% in October 2004 for wave 4).

Offering diagnostics and monitoring closer to home

Increasingly health communities should make available devices necessary to help people with diagnosis, treatment and monitoring of their long term condition at home or closer to home.

Case study: Portsmouth City PCT diabetes education (group education in a practice setting)

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A nurse-led service in Portsmouth is supporting practice staff to deliver group education programmes for newly-diagnosed type 2 diabetes patients and those about to start insulin treatment.

Consultant Nurse in Diabetes Sue Cradock - part of Portsmouth NHS Trust Diabetes Centre and Portsmouth City PCT - has been one of the driving forces behind a series of structured self-education programmes for patients with diabetes.

Building on their success, she is now working with a specialist diabetes nurse and a small development team in the PCT to deliver structured group education for those newly-diagnosed with type 2 diabetes and those about to start insulin treatment. The key difference is that the team are now training and supporting practice nurses and a GP to deliver group education sessions in surgery settings.

'There is good evidence that following up patients with structured group-based education slows or reverses deterioration in the patient's condition,' says Sue. 'What we are trying to do is reap some of those benefits by using existing primary care resources to better effect.'

According to Sue, it is more difficult for patients to learn in one-to-one consultations because there is a limit to what they can take in a 20-minute slot. At the group sessions, the nurse or GP can spend a couple of hours with six or more patients without using any more resources or professional time.

Take-up for the group sessions is high with between six and 12 patients attending the practice-based programmes which are run three or four times a month. As a result of the sessions, hospital doctors are reporting that the patients are more confident about adjusting their insulin and keeping their blood sugars under control. GPs and nurses say it is easier to work with newly-diagnosed patients who have participated in the programme.

Case Study: The Greater Manchester Pharmacy Project

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A pilot project run by Greater Manchester SHA is making pharmacists a port of call for people managing their long term conditions.

Advances in point-of-care testing technology mean that pharmacists can now provide accurate results for tests such as glucose, cholesterol and anti-coagulant status with relatively simple-to-use equipment. Further advances will allow more tests to be offered.

Pharmacy consultant to the project Roger Kirkbride said: 'Carrying out monitoring tests on site at the pharmacy is quicker for patients. But it also allows us to create a better link between medication and its effect, enabling us to modify a dosage there and then or advise on other lifestyle changes to help people better control their condition.'

Establishing community support networks

The voluntary and community sectors have significant expertise in supporting self care and self management. PCTs and Local Authorities should consider opportunities to work in partnership with these groups, including to develop joint training programmes to support the care of people with specific long term conditions.

More than 280 PCTs are involved in the Engaging Communities Learning Network (ECLN), facilitated by NatPaCT. Through the network, PCTs are sharing the best ways to engage communities, particularly through EPP courses. Burnley, Pendle and Rossendale PCT, for instance, is training EPP volunteer tutors to deliver the programme in a second language and looking at associated cultural issues such as whether the programmes should be offered to single gender groups.

NPDT's Healthy Communities Collaborative has created a template for multi-agency working, removed barriers which prevent statutory agencies form engaging with communities, and reduced falls in older people (32% reduction in the first year). The participating PCT sites were tasked with engaging teams of older local residents to begin work on falls prevention (and now nutrition). Some of the teams are 100% made up of older local people. The composition of the teams has had a very positive impact on the successful outcomes of the programme.

Understanding how to support self care

Supporting self care and self management is about more than giving patients information about their condition. It is about acknowledging their central role in managing their own care and empowering them and their family and carers to handle their condition as effectively as possible.

In order to support self care, health and social care organisations should:

  • ensure patients and carers have the skills and knowledge they need to understand how to best handle their condition, including how to deal with flare-ups, to adjust medicines, improve their life-styles and access health care services;
  • provide information that people are able to find easily and use meaningfully;
  • enable and empower patients and their carers to manage their own condition more effectively, for example by implementing self monitoring or providing supporting prompts and reminders for patients to identify when they should be doing something and attending for care;
  • provide a trusted and consistent person to contact, and
  • ensure support is available from a knowledgeable patient as well as broader peer networks and community support.

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