BMA - Improved self care by people with long term conditions through self management education programmes, September 2007

Improved self care by people with long term conditions through self management education programmes

Patient Liaison Group and General Practitioners Committee

September 2007

The BMA would like to see self care through self management education become central to the patient involvement agenda. Self management education programmes have the potential to improve self care and alter the way that long term conditions are managed in the UK. What is wanted is for people to own and control their condition in order for them to determine how they want to live their life rather than the condition dictating how their life is led.

Introduction
Over 15 million people in the UK are believed to live with a long term condition. A long term condition is defined by the Long-term Conditions Alliance (LTCA) as “a condition of prolonged duration that may affect any aspect of the person's life. Symptoms may come and go. Usually there is no cure, but there are often things that can be done to maintain and improve quality of life.”[1] Long term conditions account for a high proportion of NHS time and resources. It is estimated that around 80 per cent of GP consultations relate to chronic disease and patients with chronic disease or complications account for 60 percent of hospital bed days.[2]

A range of interventions have been developed and implemented to improve patient self care, with self management education, which includes the Expert Patients Programme (EPP), being the most common and well known.[3] In December 2005 the BMA published 'The Expert Patients Programme – a discussion paper' and held an associated conference in November 2006.[4] The paper examined the EPP, its progress and areas where further work was needed. It concluded that the self management of long term conditions was crucially important for the NHS and the medical profession, and that the EPP was seen as a key component of the strategy to empower patients to manage their own care.

This paper continues that work and looks at self care for people with long term conditions with a particular emphasis on self management education programmes. The focus is on what has been done in England, but the principles could be applied to the whole of the UK. The BMA has also developed the web resource 'Enabling people with long term conditions to self manage their health: a resource for GPs' with information on the types of self management education programmes available.[5] The resource can also be used by patients.

What is self care?
Self care is “the practices undertaken by individuals towards maintaining health and managing illness.”[3] Long term conditions identified as those which could benefit from patient self care include:

arthritis
chronic bronchitis / asthma
chronic glaucoma
chronic heart failure
deafness
endometriosis
epilepsy
incontinence
manic-depression and chronic depression
psoriasis
schizophrenia
ulcerative colitis.[6]

Self care uses a range of methods and aids to enable people to manage their own health which include: self monitoring, self help and support groups, self management education programmes, patient access to personal medical information, easy access to high quality information on conditions and services and patient-centred telecare. The diagram below shows some of the options for self care.

Options for self care diagram

Self care is about ‘helping people feel empowered’ rather than ‘making them empowered’. In this respect, the NHS cannot do self care to people but it can create an environment where people feel supported to self care.[7]

What are self management education programmes?
Self management education programmes are normally lay-led courses designed to train people with long term conditions to more effectively self manage some or many aspects of their own care. The courses can be either generic to long term conditions in general or specific to a particular long term condition.

Patient organisations have long championed the cause of self management. The LTCA, a coalition of UK patients’ organisations, piloted the Californian self management education programmes which later led to the Department of Health’s (DH) EPP initiative.[3]

On 1 April 2007 the EPP became the Expert Patients Programme Community Interest Company (EPP CIC) with plans to increase the current annual 12,000 course places to 100,000 by 2012.[8] The EPP is aimed at a wide range of people with different long term conditions, ages, geographical locations and ethnicity and provides lay-led support for people in the self management of their long term conditions delivered by a network of trainers and 1,400 volunteer tutors.[6]

The generic and condition specific courses available focus on five core self management skills: problem solving, decision making, resource utilisation, developing effective partnerships with healthcare providers and taking action. The aim is to enable patients to develop their communication skills, manage their emotions, manage daily activities, interact with the healthcare system, find health resources, plan for the future, understand exercising and healthy eating, and manage fatigue, sleep, pain, anger and depression.[9]

Self management education is not just patient education. Although self management education is often considered to be an aspect of patient education, these two activities can clearly be distinguished from one another. Patient education focuses on delivering knowledge and technical skills to enable patients to follow medical advice, whereas self management education aims to empower patients to take active control of their illness and apply problem solving skills to meet the challenges they face.[10]

Who can benefit from self management education?
Most people with long term conditions should be able to benefit from attending a self management education programme, but certain factors may limit some patients from being able to benefit such as the ability to understand information presented to them.

However, given the necessary skills and support, people can moderate the impact of their disease and improve the quality of their lives. When people self care they can:

experience better health and wellbeing
reduce the perceived severity of their symptoms, including pain
improve medicines adherence
prevent the need for emergency health and social services
prevent unnecessary hospital admissions
have better planned and co-ordinated care
remain in their own home
have greater confidence and sense of control
have better mental health and less depression.[7]

It is reckoned that every decade, from the ageing population alone, the number of people with long term conditions will increase by a over one million, and this will have significant resource implications on health and social care.[8] Co-morbidity is common with long term conditions and the ability for people to self care should show a positive impact not only on their own health but also on their use of the health system for existing conditions and any possible associated problems.

Self care through self management education will not, and does not aim to, eradicate the need for healthcare professionals, but doctors and the health service in general could see benefits in reduced:

visits to GPs
visits to outpatients clinics and A&E
drug expenditure.[7]

The key is for people with long term conditions to appreciate the benefits of self care and recognise through understanding and experience what they can positively do to manage their health, lessen the impact of their long term condition and reduce the likelihood of associated problems.

Can self management education make a difference?
Even though the belief is that self management education can make a difference to patients, it would be difficult to sustain its promotion if there was no evidence to demonstrate its effectiveness or potential.

There have been various short term evaluations of the EPP in particular. The DH’s evaluation of approximately 1,000 participants in the EPP indicated that the programme provides significant numbers of people with the confidence and skills to better manage their long term condition on a daily basis, and in reducing their use of services.[9]

A more significant study, the National Evaluation of self care programmes, was undertaken by the National Primary Care Research and Development Centre on behalf of the DH.[11],[12] An interim report produced in January 2004 was inconclusive in its findings as to the effectiveness of the EPP but highlighted an increase in self-efficacy: a patient’s confidence in managing their condition.[11] The final report published in December 2006 could still not prove absolutely the effectiveness of the EPP, but it made clear that people benefited from self management education, not only by improving their knowledge but in sharing their experiences and learning with other people in similar circumstances.

A chapter of a Picker Institute Europe review into patient focused interventions concentrated on self care.[3] The review found that a great deal of research had been undertaken into self care, most of which focused on education programmes, but that the majority of trials tended to measure only short term outcomes, typically 6 months or less (as the National Evaluation did). As a result it concluded that there was currently little known about the effectiveness of self care over the long term.[3] The review did find, however, that self management education led to short term improvements in health behaviour and that, while these effects tended to diminish over time, the quality of life effects were more likely to be sustained beyond the intervention period.[3]

Cost effectiveness is, of course, important. Improving people’s ability to self care should not be wasteful of resources, and there is already some evidence to show that it could be cost effective.[3] The true impact of self management education on individual health, use of resources and therefore costs to the service may only be seen through its development, proliferation and establishment as part of the package of healthcare, and after review over a longer term.

Increasing the awareness of self management education
Self care already happens. Many patients with long term conditions self manage on a daily basis, and doctors provide information, advice and aids to patients in order for them to do so. However, the BMA’s November 2006 conference on the EPP identified an acknowledged gap in doctors’ understanding of self management education programmes.

People can, and do, seek out their own information, but they also need support to understand their condition and to understand the services available. Patients rely on doctors for information about their health, in particular for long term conditions of which they have been newly diagnosed, and this means that doctors themselves need to be informed about self care and self management education in order to support their patients.

The update to the General Medical Council's 'Good Medical Practice' says that doctors should “encourage patients and the public to take an interest in their health and to take action to improve and maintain it. This may include advising patients on the effects of their life choices on their health and well-being and the possible outcomes of their treatments.”[13] It continues to ask that doctors support “patients in caring for themselves to improve and maintain their health” and encourage “patients who have knowledge about their condition to use this when making decisions about their care.”

In order to support and encourage patients to self care, GPs, for example, will need to develop consultation skills which allow them to guide patients as to their options for self care which may include indicating which self management education course could be best suited to them and how it would benefit. This is not about GPs referring a patient to a self management education programme, but about encouraging someone to find out about and take an interest in their condition and what they can do to help manage their health.

It is not only doctors that can support patients to self care, other healthcare professionals might be better placed.[14] The roles, therefore, that all healthcare professionals and health workers can play in supporting self care must be considered. The National Primary Care Research and Development Centre (NPCRDC) developed a scheme called the Whole Systems Informing Self-Management Engagement (WISE) which takes a systems approach to enable patients to better self care. WISE was designed to:

improve access to services
make services more responsive to patients
improve patient information
train healthcare professionals in ways to provide support and guidance to patients.[15]

One of the implications the NPCRDC sees for the implementation of self care support in the NHS is the need for healthcare professionals to receive the time and training required in order to help them provide effective self care support to patients so that consultations can focus on achieving shared responsibility and decision making.[15]

There are other initiatives. In January 2007 the Health Foundation launched Co-creating Health.[16] This is a new self management scheme that aims to transform healthcare for people with long term conditions by supporting ambitious UK healthcare organisations to create new models of healthcare that embed self management within mainstream health services.

The Health Foundation is investing nearly �5 million to test how far self management can produce measurable and sustainable improvements in health and healthcare. One of the provisions is a package of training including:

an advanced development programme for clinicians to develop the skills required to support and motivate patients to take an active role in their own health
a self management course for people with long term conditions to help them develop the knowledge and skills required in order to manage their condition and work in effective partnership with their clinicians.

The DH document 'Supporting people with long term medical conditions to self care. A guide to developing local strategies and good practice' is a guide for organisations to develop and deliver packages to people with long term conditions.[7] It highlights the need to train healthcare professionals to raise their self care awareness and skills, and sets out what needs to be done to support people to self care. This includes the importance of flexibility in service provision and for PCTs to support GPs and other healthcare professionals to:

identify the information people need
ensure health and social care professionals use joined-up thinking and know about other community contacts and support networks
make sure patient education and training programmes are included in the range of self care options
provide access to services in a coordinated and consistent way including healthcare, social care, benefits, housing, transport and voluntary and community services.[7]

Support from local NHS management bodies for healthcare professionals to better the self care for patients is variable. The Dorset and Somerset Strategic Health Authority developed a respected resource on consultation techniques, for health professionals in their area, with the aim of encouraging self care to improve the quality of life for patients and clinicians.[17]

Doctors, other healthcare professionals and patients also need support in terms of courses being available. This is where PCTs and practice based commissioners have a part to play. In June 2006, the BMA’s Health Policy & Economic Research Unit published 'Improving the management of long-term conditions in the face of system reform' which explored policy on long term conditions including who should commission effective pathways for those living with long term conditions, and how the healthcare system could support individuals to better manage their own healthcare.[2]

The paper highlighted the tensions and the need for joined-up working between practices and PCTs. It concluded that:

the major challenge in improving management of long term conditions is the redeployment of resources, human and financial, in health and social care
a vision for the improved management of long term conditions should be a central part of the picture for local healthcare providers
strong links are needed between local authorities and PCTs to aid the realisation of integrated care plans
there is potential in practice based commissioning to put clinicians in the driving seat of innovation; to develop pathways of care, increasing continuity, and strengthening teams of professionals
incentives are needed to support collaborative working between providers
better clinical and organisation signposting is needed for patients.[2]

The proposed increase by the EPPCIC in the number of course places available to patients will allow healthcare professionals to have confidence in telling a patient about self management education and then the patient being able to find a suitable course. It will, therefore, be essential that commissioners take advantage of the increase in course places so that they can be made available to patients.

The challenge for primary care providers is to make sure that self management education courses are available to the people who need them. The further challenge is to make sure that patients know how to access interventions such as self management course and this means making GPs and other health professionals aware of what is available and how it can help patients. This also means reaching out to groups who can benefit but do not typically engage with the health service.

Conclusions and recommendations
Improving self care is a major policy goal in health in the UK.[3] Self management training programmes have some way to go in terms of awareness and in conclusively proving effective for self care. Research into self care is ongoing and studies have produced mixed findings, but self management education has been associated with improvements in knowledge, coping behaviour, adherence, self-efficacy and symptom management.[3] The EPP has proved its worth in many respects but needs to continue developing, innovating and improving its accessibility.

The BMA’s November 2006 conference on the EPP identified some key themes, still relevant now, which emerged from the feedback received:

that the need for a long term approach and investment in empowerment for patients may see eventual benefits to the NHS
that there is a need to consider the impact on doctors. There must be a balance between benefits to both doctor and patients because of time and resource constraints
that there is a need to draw doctors’ attention to benefits of the EPP for different patients, with outcomes benefiting patients, doctors and the NHS
that the support of PCTs is crucial in helping doctors to enable patients to self care.

There is no single approach to self care and nor should there be. People are individuals and have different reactions to receiving a potentially life changing diagnosis and different ways of coping with situations. Not everyone wants to be actively involved in managing their own condition, but for the growing number of people who do more support is needed from the professionals in their care.[14] Efforts should, therefore, be focused on providing patients with the opportunities to develop practical skills and confidence in self managing their health as this has shown to be more effective than giving information alone.[3]

To further self care through self management education, the BMA makes a number of recommendations:

Every person diagnosed with a long term condition should know how to gain information on their condition and how to develop their self management skills through education available from the NHS and voluntary and community sector organisations. Every patient should also know who, as well as their GP, may be able to give advice and support.
Self management training programmes should ultimately be offered to all people with long term conditions for whom they are relevant and who are interested.
Resources and information need to be given to GPs to help them encourage self care, including information on commissioning services, in order to assist patients who wish to improve their ability to self care through attending self management education programmes.
PCTs should encourage self care through self management education programmes at a local level as part of a wider strategy for long term conditions. Costs involved for commissioners should be seen as a good investment to gain a long term benefit.
A roadmap should be developed to aid doctors, other healthcare professionals and patients through the maze of information and services to include a range of self management training programmes, not just the EPP.
The EPPCIC should develop a national scheme to provide information on self management training programmes and a checklist of useful information sources and telephone numbers.
There should be systems in place to monitor the quality of self management programmes against set standards.
Further research over a longer period should be undertaken in order to ascertain the effectiveness of self management education to both patients and the health service.
Education on facilitating self care should be included in the medical curriculum including awareness of the fragility of self care and how it can be strengthened. Training should also be provided for practising doctors on the appropriate consultation techniques for patients with long term conditions.
Healthcare professionals should be rewarded for undertaking learning and skills development for long term support of self management.

� British Medical Association 2008

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