Achievements

Since the Association's launch in 1993, we have:

• Provided a Freephone Helpline that takes calls from throughout the United Kingdom. The Helpline is staffed by volunteers who provide a 'listening ear' and emotional reassurance at times of stress. They also offer advice on practical matters of daily living with a congenital heart problem.
  
  
• Published a range of Information Sheets that have been specially written for GUCHs on topics such as Lifestyle Issues, Travel Insurance and Pregnancy as well as produced a Patient Health Passport.
  
  
• Produced an information booklet Living with congenital heart disease and a patient information video under the auspices of the British Heart Foundation.
  
  
• Published a newsletter that is written and produced by the members four times a year. Circulation is approximately 2600, which includes GUCH members, supporters, medical, healthcare and social care professionals.
  
  
• Developed this web site that receives many visitors from the UK and abroad.
  
  
• Established a Benevolent Fund to receive applications from members who are in financial hardship. A sub-committee of the Management Committee makes recommendations and awards.
  
  
• Set up a network of nearly forty Local Contacts and groups around the UK. Some groups meet regularly, with the emphasis on self-help and support.
  
  
• Organised residential weekends and Outward Bound holidays for teenagers and adults, providing GUCHs with the opportunity to meet and gain support from each other. Activity holidays encourage personal development and increase self-confidence.
  
  
• Staged regional seminars and workshops throughout the UK. Each event offers GUCH patients the chance to hear from distinguished professionals on such topics as: How To Keep Fit and Stay Healthy; Pregnancy and Genetics; The Disability Discrimination Act; Careers and Employment; Coping with Fears and Phobias.
  
  
• Contributed regularly to GUCH nurse training courses at South Bank and Leeds Universities. The Association also takes part in various study days and conferences for medical and health professionals.
  
  
• Taken part in the bi-annual European Young Heart conferences.
  
  
• Successfully applied for a Section 64 project grant from the Department of Health. The grant, which was awarded for three years, provides funds for developing the Association's services in the North of England, including the appointment of our Northern Region Co-ordinator.
  
  
• Organised various social, publicity and fund-raising events, including receptions at the House of Lords and House of Commons, a film première, concerts, parachute jumps, marathon runs and annual sponsored walks.

The GUCH Patients Association does not charge a membership fee. We rely on voluntary donations, fundraising and grants from the British Heart Foundation and the Department of Health to continue its work.