Affiliated to:

St George’s Hospital
ICD Patient Support Group

Aims and Objective of Backup:

• To provide a forum for all ICD patients and their partners and families to discuss their concerns and problems.
• To help patients with ICD's to regain their confidence and morale when experiencing problems or during times of trouble.
• To provide literature and information on all topics that are relevant to ICD patients.
• To provide information about driving, insurance, holidays, interference and any other areas where ICD patients may experience problems in day- to- day life.
• To provide emergency and technical information to other healthcare workers such as A & E departments, ITU's and ambulance crews in order to promote better understanding of patients with ICD's implanted.
• To provide a partner support group
   

The Backup group

A meeting was set up and all ICD patients were invited to attend. At this time there were about 150 patients. A brain-storming session was held and all patients were asked to set the priorities that they felt were important in setting up a support group. A steering group was put in place with a mixture of professional and patient representation and volunteers for a newsletter editor were sought. A program of meeting dates was set and some provisional dates for newsletter publication. It was agreed that 2-3 meetings a year would be held one of which would be a full day meeting. 

A partners group was also established with a help-line and contact numbers.

Funding was sought from manufacturers of ICD’s and by voluntary contributions from the patients themselves.

Discussion

The group now provides support for approximately 600 patients. A newsletter is published twice a year and all of the objectives set at the beginning have been met. A full set of patient literature is available and all patients who have an ICD implanted are given full information and any necessary counselling prior to and following implant.

A patient network is available and all new patients are offered the opportunity to discuss their fears or anxieties with other patients in similar circumstances.

A set of A & E and emergency guide-lines has been implemented as the number of ICD patients increases so that healthcare workers in primary and secondary care are able to cope with patients experiencing problems.

One of our support members is a full-time counsellor and sessions have been organised for both patients and professionals to provide some basic listening skills experience.
A recent patient survey from the ICD clinic showed a high level of satisfaction from all patients attending.