To prevent and cure diabetes and to improve the lives of all people affected by diabetes.
Self-help groups
This text is about the various organizations in UK that have grown up to help their members. It is a straightforward description of what is available and is not written as questions and answers. People react in different ways to the shock of diabetes: some try to become hermits and hide, while others set out to try to solve all the problems of mankind (including diabetes) in a few weeks. Whatever your reaction, you should make contact with your local Diabetes UK group. You will come across people who are living with diabetes and who have learnt to cope with many of the daily problems. These people should provide an extra dimension to the information that you have been given by doctors, nurses, dietitians and other professionals.
Diabetes UK
This was founded in 1934, under the name of the British Diabetic Association by two people with diabetes, H. G. Wells, and R. D. Lawrence, a doctor based at the diabetes clinic of King’s College Hospital, London. In a letter to The Times dated January 1933, they announced their intention to set up an ‘Association open to all diabetics, rich or poor, for mutual aid and assistance, and to promote the study, the diffusion of knowledge, and the proper treatment of diabetes in this country’. They proposed that people with diabetes, members of the general public interested in diabetes, and doctors and nurses should be persuaded to join the projected association. Nearly 70 years later Diabetes UK is a credit to its founders. It has more than 190,000 members and an annual budget in excess of £16 million. In many countries, there are separate organizations for people with diabetes and for professionals, but Diabetes UK draws its strength from the fact that both interest groups are united in the same society. Diabetes UK is the largest organization in the UK working for people with diabetes, funding research, campaigning, and helping people live with the condition. The Careline (020 7424 1030, Monday–Friday, 9am–5pm) offers confidential support and information on all aspects of diabetes. During one year Careline handled in excess of 47,000 queries. In order to make Careline accessible to all, there is access to an interpreting service. Many people with diabetes experience discrimination in terms of increased premiums, restricted terms or even can have policies refused when taking out insurance. Faced with the general lack of understanding within the insurance market, Diabetes UK has negotiated its own exclusive schemes to provide policies suited to the needs of people with diabetes and those living with them. Diabetes UK Services offers competitively priced home and motor, travel and personal finance products. For details of the home, travel and motor insurance, as well as personal finance, telephone 0800 731 7431 (or e-mail diabetes@heathlambert.com).
Up to date information and news is published in Balance, a magazine that appears every other month. Diabetes for beginners is provided for newly diagnosed people, both Type 1 and Type 2 (insulin dependent and non-insulin dependent). Diabetes UK produces its own handbooks, leaflets and videotapes for teaching purposes, and also sells those produced by other publishers. It constantly lobbies for high standards of care for those with diabetes. Diabetes UK has an excellent website. Diabetes UK organizes ‘living with diabetes’ days. These are one-day conferences for people with diabetes, their carers, families and friends, giving an opportunity to talk to healthcare professionals and people living with diabetes, and to discover more about Diabetes UK. For more information contact the conference team at Diabetes UK, telephone 020 7424 1000.
Diabetes UK holidays
The first diabetes holidays for children in the UK took place in 1935 and these have grown into a large enterprise. During the summer of 2000, at 12 different sites throughout the UK, 500 children, aged between 7–18 years, enjoyed a week away with Diabetes UK. These educational holidays are organized by the care interventions team, and they give the opportunity for children to meet others with diabetes and to become more independent of their parents. They aim to give the children a good time, and encourage them to try new activities, whilst teaching them more about their diabetes and to provide a well-earned break for their parents.
Diabetes UK family weekends
The care intervention team also organizes family weekends for parents of children with diabetes. These cater for about 200 families each year. While parents have talks and discussions from specialist doctors, nurses and dietitians, there are activities for children throughout the weekend supervised by skilled and experienced helpers.
Youth Education Project
This project encourages locally organized educational events. In 2000 about 700 children took part in one of 28 events. Each event received a grant from Diabetes UK, and additional support in the form of guidelines and advice.
Local Diabetes UK branches
There are over 430 branches and parents’ groups throughout the country. These are run entirely by volunteers and, because of their commitment, large sums of money are raised for research into diabetes. Diabetes UK branches also aim to increase public awareness of diabetes, and arrange meetings for local people with diabetes and their families for support and information.
Parent support groups
Parents of young children with diabetes often feel they have special needs – and that they can offer particular help to other parents in the same boat. Over 80 parent support groups exist throughout the UK and they have added a sense of urgency to the main aim of Diabetes UK: to improve the lives of people with diabetes and to work towards a future without diabetes. In addition to self-help, the parents’ groups also raise money for research. The care intervention team now runs a ‘Parent-link’, which is a network support system for parents of children with diabetes that aims to put parents in touch from a gradually expanding database. Parent-link sends out a newsletter called Link-Up four times a year.
Joining Diabetes UK
Diabetes UK works to influence the decisions made about living with diabetes, and the more members it has, the greater its influence. Diabetes UK cannot continue to provide its services and activities to all people with diabetes without your support. If you would like more information about joining Diabetes UK, contact the Supporter Development department on 0207 323 1531 or write to Diabetes UK.
Diabetes UK’s Necrobiosis Support Network
This enables people with necrobiosis to get in touch with others with the condition. Contact the Careline.
Tadpole Club
This is a club for younger children with diabetes, their families and friends, which sends out a regular fun newsletter called the Tadpole Times. More information (including current membership fee) can be obtained from Diabetes UK.
Juvenile Diabetes Research
Foundation (JDRF)
This organization was founded in 1970 by a small group of parents of children with diabetes. The Juvenile Diabetes Research Foundation exists to find a cure for diabetes and its complications. They support diabetes worldwide and provide research funds at a comparable level to Diabetes UK.
Insulin Pump Therapy Group
This group was formed to raise funds and provide information on insulin pumps. Insulin Dependent Diabetes Trust (IDDT)
This is a registered charity formed in 1994, which is concerned with listening to the needs of people who live with diabetes. The aims of the Trust are:
• To offer care and support to people with diabetes and their carers, especially those experiencing difficulties with genetically engineered ‘human’ insulin;
• To influence appropriate bodies to ensure that a wide range of insulins remains available, to ensure that all insulin users have a continued supply of their chosen insulin;
• To ensure that all people with diabetes and carers are properly informed of the various treatments available to them, as is their right under The Patients’ Charter;
• to collect information and experiences from people with diabetes and their carers to help others in the same situation and to pass it to healthcare professionals to create a better understanding of ‘life with diabetes’;
• Where possible, to represent the direct voice of the person with diabetes, as the consumer, in relation to health care and research.
The Trust is run entirely by voluntary donations and does not accept funding from the pharmaceutical industry, in order to remain uninfluenced and independent.
