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Enabling people with long term conditions to self manage their health: a resource for GPs
Patient Liaison Group and General Practitioners Committee
September 2007
Introduction
It is estimated that more than 15 million people in the UK live with a long term condition. Improving self care for such people is a major policy goal in health in the UK.[1]
People with long term conditions can feel disempowered, not only by their condition but by a sense that there is nothing they can do about it. This can lead to a loss of confidence and a loss of belief that the actions they take can make a difference to their health.
The BMA’s Patient Liaison Group (PLG) and General Practitioners Committee (GPC) produced the policy paper 'Improved self care by people with long term conditions through self management education programmes'. The paper looks at self care for people with long term conditions with a particular emphasis on self management education programmes.
What is wanted is for people with long term conditions to own and control their condition. By having control they can determine how they want to live their life rather than the condition dictating how their life is led. What is needed is an intervention which facilitates someone’s confidence and ability to manage their condition in order for them to lead as normal a life as possible.
A self management education course is one such intervention. Self management courses are available, normally directly to patients, but patients need to be made aware that these courses exist and to the benefits that they can bring.
The joint PLG and GPC paper recommended that “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 can benefit GPs as well as patients. Completing a self management course may lead to the patient requiring fewer GP consultations. More important are the skills that course participants gain in order for them to use their appointments better and to be a better prepared patient. The courses are enlightening but also help patients to be realistic about their condition and what they can and cannot do. An associated benefit can be the avoidance of unnecessary deterioration of the condition.
This web resource, coupled with the policy paper, aims to contribute to a doctor’s ability to support patients to find information and improve their knowledge of their condition through self management education or other means. The resource will be updated as further material becomes available.
How GPs can enable patients to self manage
Patients with long term conditions, such as diabetes, heart disease and arthritis, already self manage their health on a daily basis. The range of strategies for self management is broad and can be divided into two categories: non-clinical self management and patient clinical interventions using diagnostic devices. The vast majority of patient self management falls into the former, more informal, category.
In order to better self manage their health, patients need be able to:
- get information about their medicines and advice about taking them
- understand their test results and what they mean for the management of their condition
- find sources of reliable and up to date health information to meet their specific needs
- find out about national and local support groups and organisations
- know about generic or condition-specific education programmes that could help them self manage better
- gain access, where appropriate, to technologies to assist them in self monitoring and self medicating.
In the south west of England, the Dorset and Somerset Strategic Health Authority have developed a resource on methods to support self care for health professionals in their area. The resource has been produced by clinicians respected in the field and should prove a useful tool.
Sources of information to enable self management
The sources of information given under the headings below are a mixture of BMA and external resources. These should also be useful to patients for information and investigation.
- Information about medicines
- Health information
- Support groups and organisations
- Generic self management education
- Condition-specific self management education
Information about medicines
It is clear that some patients’ medicine taking is less than ideal with estimates that around half of patients with a long term condition do not take their medicines as prescribed.[see reference 2] Patients diagnosed with a long term condition which requires life long medication should be made fully aware of the impact of their medication on them and their lifestyle.
It is crucially important that doctors:
- address the long term psychological impact on the patient of possibly being on medication for the rest of their life, and answer any questions
- explain the importance of taking the medicines in accordance with instructions, especially where a patient has several long term conditions requiring daily medication
- encourage patients to quickly report any side effects associated with their medicines to their GP and not wait until a review
- dissuade patients from self medicating by taking more or less of a particular medicine according to perceived symptoms, unless a rigorous self monitoring and self medication framework is in place.
Health information
Some patients will want to find out more about their long term condition. GPs should be able to support this, but a study found that clinicians had the following concerns about health information:
- the usefulness of some patient information leaflets
- whether information leaflets are up to date
- giving patients ‘too much’ information to be able to cope with
- providing information that might be frightening and not relevant.[see reference 3]
From 2008 onwards, the DH intends that information prescriptions will be provided to everyone with a long term condition or social care need. These are intended to contain “a series of links or signposts to guide people to sources of information about conditions and treatments, care services, benefits advice and support groups” with the aim of giving patients increased control and a greater ability to manage their own condition.[see reference 4]
Support groups and organisations
Patients may benefit from seeking support from peer groups or patient organisations in dealing with their condition. Patients may not realise that there are support groups or networks where they can meet, talk and find out more about their condition and how others cope with it. Some are run entirely by patients or lay people, and others may have considerable input from health professionals. There are also a large number of condition-specific organisations who can provide advice, information and support.
The BMA’s web resource Finding a self-help group or patient organisation can be used to find such groups and organisations.
Generic self management education
The most commonly known and available generic self management education programme is the Expert Patients Programme (EPP). The EPP is a quality assured, lay-led generic course designed to educate people with long term conditions to more effectively self manage some or many aspects of their own care. The courses, available England-wide, are run over six consecutive weekly sessions of 2.5 hours each week. Two volunteer tutors lead 8-16 participants through a structured programme with content covering relaxation, diet, exercise, fatigue, breaking the symptom cycle, managing pain and medication, and communication with healthcare professionals.[see reference 5]
Information for health professionals and patients about the EPP and the availability of courses can be found on the EPP website.
There are also courses for carers and for parents of children with long term conditions. ‘Looking After Me’ is a free course for adults who care for someone living with a long term health condition or disability. The course aims to enable carers to take more control of the situation to make a difference to their lives, including making time to look after their own health needs. It takes place over six weekly half-day sessions and is led by trained tutors who themselves have experience of caring for a relative.
The ‘Supporting parents programme’ is a six-week course for parents and guardians of children who have long term and life limiting conditions. The programme provides a space in which parents can support each other in dealing with the common problems they face. The aim of the programme is to support parents to develop their self confidence so they can feel more in control. The content covers:
- finding time for you
- coping with difficult emotions
- relaxation
- dealing with family issues and tensions
- communicating with family, friends, health professionals and schools
- planning for the future.
In addition to the EPP there are a number of condition-specific courses available for patients, identified below. These are often developed and run by patient or voluntary sector organisations. Some courses are led and others use purely learning materials. The BMA web resource Finding a self-help group or patient organisation is a useful starting point for doctors and patients to find out what condition-specific courses are offered by patient or voluntary organisations.
Arthritis
Arthritis Care offer a range of self management programmes for people with arthritis. Their flagship programme ‘Challenging Arthritis’ is a series of informal practical sessions that cover topics such as handling pain and fatigue and getting the most from medical care. Other courses are:
- ‘Arthritis awareness’, a one-day course for employers and organisations and for people who care for someone with arthritis
- ‘Challenging pain’, a two half-day programme which helps people tackle the pain of arthritis or a long term chronic condition and improve their quality of life through pain management techniques
- ‘Chronic disease self-management’, a series of practical sessions to help people manage a chronic long-term condition
- ‘Kids have arthritis too‘, a course for 11-16 year old pupils at key stage 3-4 which aims to make them aware of the disability caused by arthritis, give experience of the difficulties of arthritis and increase awareness of Arthritis Care’s services
- ‘Positive future workshop’, a weekend workshop for young people with arthritis
- ‘You can break the pain cycle’, a one-day self management programme to help people with arthritis manage their pain.
Asthma
Asthma UK’s ‘Be in control’ materials have been developed for healthcare professionals to help people with asthma to self manage and take better control of their asthma. They are based on an extensive review of the evidence supporting self management and have been evaluated by healthcare professionals and people with asthma.
The package of materials are available free of charge and consist of:
- ‘Making the Most of Your Asthma Review’, a booklet which outlines what people with asthma can expect to happen at their asthma review and gives examples of questions to ask
- ‘Asthma Peak Flow Diary’, for people with asthma to record their daily peak flow and/or symptoms
- ‘Personal Asthma Action Plan’, intended for use by people with asthma aged 12 and over for information about what actions to take when symptoms get better or worse. It also includes information about what to do during an asthma attack
- ‘Asthma Medicine Card’, for providing information about medicines, when to take them, how to recognise signs of worsening symptoms and information about what to do when symptoms get worse.
Deafness
The LINK Centre for Deafened People has developed a self management programme for people who are living with an acquired profound hearing loss. The programme aims to provide participants with opportunities to discover and explore a range of techniques and strategies to help in their day to day living with an acquired profound hearing loss.
The sessions let participants share and learn from other people’s experiences whilst building a portfolio of useful information and resources available in their area. There are four sessions, each taking place once a month, which cover: communication strategies, personal safety, relaxation & wellbeing, maintaining independence and action planning / goal setting.
Depression
The Manic Depression Fellowship offer self management education to people with bipolar disorder. The objective of the programme is to teach those with the disorder to recognise what triggers episodes of illness and the warning signs to watch for. Those taking part in the programme learn to take certain actions to prevent or at least reduce the severity of any episode of illness. The programme has been found to reduce suicidal thoughts. Courses are run in England and Wales for a small administration fee.
Diabetes
There are two prominent education programmes which diabetes patients can access to enhance their self management, depending on the type of diabetes they have.
‘Dose Adjustment For Normal Eating’, or DAFNE, is an evidence based and skills based education programme where people with Type 1 diabetes learn to match their insulin dose to their chosen food intake on a meal to meal basis. The course is delivered to groups of 6-8 participants over five days by trained diabetes specialist nurses and dieticians. The intention is for people to be able to eat more normally by using their medication to control their diabetes.
‘Diabetes Education and Self-Management for Ongoing and Newly Diagnosed’, or DESMOND, is a national education programme for people newly diagnosed with Type 2 diabetes. All PCTs are now required to offer the programme in order to help people better manage their Type 2 diabetes. The six-hour course is delivered over one day or two half-days to groups of 6-10 participants by two trained healthcare professionals.
Irritable bowel syndrome
The Irritable Bowel Syndrome Network runs a web-based self management programme containing the information that patients need to understand their condition. It includes detailed advice on how to manage diet and emotions, and also gives sources on where to seek further help and advice.
Pain
A pain management programme is available to patients through their local pain clinic. The programme aims to reduce the disability and distress caused by chronic pain through teaching physical, psychological and practical techniques to improve quality of life. The British Pain Society can provide information on local pain clinics by emailing clinic@britishpainsociety.org with a full address including post code. Patients must be referred to a pain clinic by a GP or hospital consultant.
This resource has been produced by the BMA Science and Education Department and the BMA Public Information Unit.
References
- www.pickereurope.org/Filestore/Publications/QEI_Review_AB.pdf (accessed August 2007)
- www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4967861 (accessed August 2007)
- www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4139969 (accessed August 2007)
- www.informationprescription.info (accessed August 2007)
- www.expertpatients.nhs.uk/public/default.aspx (accessed August 2007)