Overview

• Living with diabetes may be a personal issue, or may be an experience shared with an expanding global community

• Accessing practical advice and support to help live with diabetes has become much easier due to web-based resources

• A wide range of materials is available for patients, their carers and health professionals, for advice, education and advocacy

• Support organisations also provide for those with no Internet access, and those with physical barriers such as sensory impairments

Introduction

A huge amount ofhelp is available for people with diabetes, ranging from local groups offering individual support to international bodies advising patients, their carers and their health professionals (Figure 20.1). Advice and information needs to be tailored to the individual's needs and abilities, but provided sufficient time is taken most patients can understand the basic principles of diabetes care, and of course many become 'experts'. The Alphabet strategy, discussed earlier in this book, is as much about educating patients as it is about guiding clinicians on management. The Alphabet team have developed a range of readily accessible information sheets to assist in patient education (Figure 20.2). This gets the message across much more effectively than words alone.

Patient support organisations

For some, diabetes is a personal issue managed within a limited network of friends, family and health professionals, whilst for others this network extends to the wider community and beyond. Diabetes can affect anyone at almost any age. Many find amongst this diversity a common thread of shared experience. For others it is a very individual and private experience. Despite increasing public awareness of their needs, some people with diabetes may still feel isolated, stigmatised, discriminated against, or otherwise in need of support and advocacy. Others may wish to share their success at overcoming personal goals. For all types of people and for all those caring for them in any capacity, help is widely available. Over the last 20 years the accessibility of health information has blurred the distinction between advice aimed at patients and that aimed towards health professionals, so that many of the organisations provide for all through a common point of access.

The websites of some major organisations are included in the Further Reading section at the end of the chapter. Familiarity with these resources is important for clinicians, who need to be able to advise patients on the most appropriate web resources, as many are available that are misleading. They may also need to direct patients to locally relevant information that is not always as clearly signposted.

Diabetes UK

This is the major charity representing and supporting people with diabetes and their carers in the UK.

Diabetes UK has nearly 400 volunteer support groups all over the UK to provide peer support at a local as well as national level. Fundraising, campaigning, awareness raising and mutual support and advocacy are central activities, often taking place in social settings. The charity can help with practical issues such as finding affordable health insurance that does not discriminate unfairly towards those with diabetes. The charity awards a prize for those who have lived with diabetes for over 50 years, an increasing number annually.

Balance, a magazine for people with diabetes is published bimonthly and there are also regular e-newsletters keeping people up to date with what is going on in diabetes care. Many of the resources are available in different languages and there is also CD-and audiotape-based information for those with visual impairment.

Diabetes UK also provides support for health professionals through policy statements, conferences, training materials, updates, and research funding. It influences national policy as the major UK stake holder representing users of diabetes services and is consulted on policy development including that of the National Institute of Health and Clinical Excellence (NICE). It holds an Annual Professional Conference and publishes a monthly professional journal Diabetic Medicine. This journal is available free to those in the developing world through the World Health Organization's

Figure 20.1 Patient information leaflets from the Alphabet team.
Figure 20.2 Seventy years on insulin: presenting in 1938 as a seven year old with thirst and weight loss, this patient was started on insulin and rapidly regained her health. Pictured here with her current GP, Dr Tim Holt.

HINARI programme. In addition, Diabetes Update is a quarterly journal on the latest news in diabetes.

The International Diabetes Federation (IDF)

The IDF applies similar principles to the worldwide community involved with diabetes, including patients, their carers and health professionals, and the research community. Their mission is 'to promote diabetes care, prevention and a cure worldwide'. They serve as an umbrella for national diabetes organisations all over the world. As well as its role in patient advocacy and education, the IDF has a strong academic role, e.g. producing the IDF definition of the metabolic syndrome discussed in Chapter 4, which has become widely adopted.

The IDF's quarterly publication Diabetes Voice is published in English, French and Spanish, and covers all aspects of diabetes care, education, prevention, research and practical aspects of living with diabetes.

The American Diabetes Association

Whilst aimed at an American readership, the ADA's website contains lots of useful links that will be of interest to people in all countries, including those wishing to keep up with the latest research in diabetes. They also provide useful dietary advice (see Box 20.1) and recipes.

Box 20.1 Practical advice on healthy eating from the

American Diabetes Association website

• Eat lots of vegetables and fruits. Try picking from the rainbow of colours available to maximize variety. Eat non-starchy vegetables such as spinach, carrots, broccoli or green beans with meals

• Choose whole grain foods over processed grain products. Try brown rice with your stir fry or whole wheat spaghetti with your favourite pasta sauce

• Include dried beans (like kidney or pinto beans) and lentils into your meals

• Include fish in your meals 2-3 times a week

• Choose lean meats like cuts of beef and pork that end in "loin" such as pork loin and sirloin

• Remove the skin from chicken and turkey

• Choose non-fat dairy such as skimmed milk, non-fat yogurt and non-fat cheese

• Choose water and calorie-free ''diet'' drinks instead of regular soda, fruit punch, sweet tea and other sugar-sweetened drinks

• Choose liquid oils for cooking instead of solid fats that can be high in saturated and trans fats

• Remember that fats are high in calories. If you're trying to lose weight, watch your portion sizes of added fats

• Cut back on high-calorie snack foods and desserts like chips, cookies, cakes and full-fat ice cream

• Eating too much of even healthful foods can lead to weight gain. Watch your portion sizes

Patient.co.uk

The website www.patient.co.uk provides information both for patients and professionals on all sorts of health topics. Advantages of this resource are firstly its availability - it is linked to a major UK clinical software system in primary care, and secondly that it provides the same advice to both patients and clinicians but at two different levels. Patient UK articles and leaflets give a 'plain English'

version, whilst 'Patient Plus' resources cover the issues in more depth. Both are available for patients as well as their professionals. All of the materials can be printed off during consultations or in the patient's home.

Summary

People living with diabetes have an increasing need to access support from local, national and global organisations offering practical advice, help and advocacy. Clinicians need to be able to signpost such people towards the most valuable resources in order to maximise their benefits. Patient groups have an important role in funding diabetes research and in advising professional and governmental policy makers. They are an extremely active force in the battle to defeat diabetes.

Further reading

JaiveerP, SaraswathyJ, Lee JD, MorrisseyJ, PatelV. The Alphabet Strategy - A tool to achieve clinical trials standards in routine practice? Br J Diabetes VascDis 2003;3:410-3. American Diabetes Association www.diabetes.org Diabetes UK www.diabetes.org.uk International Diabetes Federation www.idf.org Patient.co.uk www.patient.co.uk

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