Mary MacKinnon, RGN, MMedSci.
Honorary Senior Lecturer, University of Warwick; Diabetes Education Consultant, Sheffield
A key objective of the National Service Framework for Diabetes (DoH, 2001a) is to empower people with diabetes. There is great potential for people with diabetes to manage their own care if they know what they can and should do.
As a minimum - wherever possible - they should understand their condition and be able to fit it into their everyday lives, knowing what health care to expect (Diabetes UK, 2003) (Box 1).
Empowerment fosters independence, self-management and the ability to question and to make informed choices. This approach may cause discomfort in both those providing care and those receiving it, as the locus of control is moved nearer to the person living with the disease who is the ‘expert’ in his or her own health care. The discomfort arises because the health-care provider has historically been the ‘expert’ to be consulted by the ‘patient’, and patients are not always confident in displaying their own expertise and skills in the self-management of their life-long disease. Carers must provide information and support while allowing the person with diabetes to make mistakes and learn from them.
Few professionals involved in diabetes care would deny the importance and effectiveness of patient education, which many believe to be synonymous with empowerment (Stewart, 2002). However, there are differences. Education may be misused by some health-care professionals to extend their influence over their patients’ behaviour and increase control over them. Empowerment aims to enhance individuals’ ability to influence their own lives by helping them to make informed choices about their care (Stewart, 2002).
Sometimes family members also need substantial support to be effective and supportive themselves. Their emotional support is regarded as crucial by people with diabetes in enabling them to manage their own condition (Snoek, 2002). This is particularly so for younger patients, older people and vulnerable groups - for instance, people who are socially excluded, people with impaired mental health or physical disabilities and ethnic groups who are particularly prone to diabetes, such as people of Indo-Asian and African/Caribbean origin.
Health-care providers should not regard empowerment as a question of political correctness but should view it as an essential part of caring for the patient. The NSF (DoH, 2001a) suggests that ‘empowering people with long-term conditions in their relationships with health and other professionals enables them to assert control over their lives, build confidence and be active partners in their care’.
The DAWN study
The Diabetes Attitudes, Wishes and Needs (DAWN) study (Snoek, 2002) is the largest global psychosocial study of its kind ever conducted.
It addressed the perceptions and attitudes of more than 5000 people with diabetes and 3000 health professionals in 13 countries, and expands our understanding of the ‘inner lives’ of people with diabetes.
Its findings confirm that emotional distress is common among people with diabetes and that depression is twice as prevalent as in the general population, affecting about 15-20% of people with the condition.
Emotional problems - particularly depression - are often not recognised by health-care professionals and are therefore underdiagnosed in people with diabetes. Less than half of the health-care providers interviewed in the DAWN study felt able to identify and evaluate their patients’ psychological needs (Snoek, 2002).
Patient interviews in the study revealed that unwanted support and being put under pressure by others can have a marked negative effect on well-being and diabetes self-care.
Learning from the patient’s experience
Living with diabetes entails a process of personal lifelong learning. It means following a regimen every day, overcoming barriers and coping with the emotional burden imposed by the condition, in addition to the pressures of everyday life.
Myths and misconceptions abound around diabetes, such as: ‘Diabetes is caused by eating too much sugar’, ‘You can catch diabetes from someone else’, ‘If you have diabetes marriage is not possible’ or ‘You will need to buy diabetic jam and biscuits now you have diabetes’.
These and the influence of health-care providers, family members and the public who are not up to date in diabetes care and education may be major barriers to effective self-care, particularly at diagnosis.
I have had diabetes for four years, and it has changed my life. Following my self-diagnosis, while I was running a diabetes leadership course in Africa, I had to come to terms with my loss of health - a process that took a long time.
It involved emotional turmoil, depression, feelings of loss of control and a complete loss of professional confidence. I was also unprepared for my family’s reaction of shock and disbelief that I could have diabetes, especially as we have no family history of this condition.
Although I took more exercise and adjusted my diet, I still had symptoms six weeks after diagnosis, so I began the journey through oral hypoglycaemic agents to insulin injections.
Poor glycaemic control and constant infections continued. Within two years I had learnt that the best way to control my blood glucose levels was to take background insulin and match quick-acting insulin to my carbohydrate intake, in addition to a small daily dose of a glitazone.
Daily blood-glucose monitoring enables me to adjust insulin doses and ensure that I stay within a range in which I feel well (4-7mmol/L) - my glycated haemoglobin is below 7% - and at the same time avoid episodes of hypoglycaemia.
I have developed my own strategies for remembering to order and self-administer an extensive list of prescriptions, which includes cardioprotective medication. These measures include keeping my prescription list on a computer file so that it can be updated easily, recording all drugs and insulin doses given, food and exercise taken and any change in daily routine, such as a weekend away or a full day of meetings.
I have also learnt to fit other things into my life, such as foot care, eye screening, blood tests, review appointments and an annual flu vaccination. I have been fortunate to be truly involved in decisions about my own health care and able to make choices, thanks to supportive health-care professionals and other people with diabetes who have shared their experiences with me. Being a health-care professional in diabetes care has helped me considerably because of my familiarity with the condition and because I know when I need help and how to get it.
The expert patient
About 17.5 million people in the UK live with a chronic disease - up to 75% of those over the age of 75 fall into this category.
The Government has recognised that many people living with a chronic disease have great expertise but need further skills and confidence to self-care, to be empowered and in control of their lives (DoH, 2001b).
Lay-led self-management is advocated by the Department of Health and is the way people with chronic diseases can develop confidence and skills to manage their illness (Box 2). The Government’s vision for a successful expert patients’ programme (DoH, 2001b) is to achieve the following:
- Many more patients improving, remaining stable or deteriorating more slowly
- Many more patients effectively managing specific aspects of their condition
- Fewer patients severely incapacitated by fatigue, sleep disturbance and lack of energy
- More patients developing skills to cope with the emotional consequences of their disease
- More patients gaining and retaining employment.
An implementation group has been established to manage and oversee the introduction of the programme and identify pilot sites in primary care trusts.
Two principal trainers have been chosen to co-ordinate training and development of activity at the pilot sites, while 45 expert patient trainers and assistant trainers have been appointed around the country.
They will manage and train volunteer course tutors, deliver courses to patients and expand the programme activity to further pilot sites. There are 26 first-wave pilot sites throughout England participating in the programme, which will:
- Be mainly user-led
- Be integral to all local NHS services
- Involve partnership between NHS and patient organisations
- Be piloted from 2001 to 2004
- Become mainstream between 2004 and 2007 (MacKinnon, 2003).
The diabetes champion
The NSF (DoH, 2003) suggests that people with diabetes, and parents of children and young people with the condition, should have greater control over their care and their relationship with their health-care team and also have a strong voice in determining local services and priorities.
One way of achieving this is to identify people with diabetes who can then be resourced and given training and support to champion the views of local people with diabetes and their families. This role can be linked to local action to promote wider patient and public involvement.
The role of the ‘diabetes champion’ is evolving and will vary locally. Its success will depend on the willingness of health-care providers to value, support and listen to these champions, remembering that they are volunteers and are giving their own time, skills and experience to enhance existing diabetes services. Diabetes champions are beginning to work with primary care trusts around the country.
Standards for the quality of diabetes care in England are mainly set around biomedical targets. In achieving these targets, it is important that we do not lose sight of the person who lives with diabetes and to whom these targets actually relate. Patients must be empowered to take control of their own conditions and make decisions about their own care.
Department of Health. (2001a) National Service Framework for Diabetes: Standards. London: The Stationery Office.
Department of Health. (2001b)The Expert Patient: A new approach to chronic disease management for the 21st Century. London: The Stationery Office.
Department of Health. (2003)National Service Framework for Diabetes: Delivery Strategy. London: The Stationery Office.
Diabetes UK. (2003)What Diabetes Care to Expect. London: Diabetes UK.
MacKinnon, M. (2003)21st Annual Isle of Wight Conference on Diabetes - part 1. Report of proceedings. Practical Diabetes International 20: 3: 111-112
Snoek, F. (2002)Understanding the human side of diabetes. Diabetes Voice 47: 2, 37-40.
Stewart, A. (2002)Delivering patient empowerment in diabetes. Cardiabetes 2: 19-21.