About The GUCH Patients Association

Mission Statement

There are estimated to be over 150000 adults who were born with a heart disease in England and Wales. The number is made greater with those living in Scotland and Northern Ireland. Over half will experience medical and social problems at some time in their adult lives.

The Grown Up Congenital Heart (GUCH) Patients Associations' mission is to help adults who were born with a heart condition cope with their condition and champion their rights within all aspects of life.

How GUCH PA started

The Grown Up Congenital Heart Patients Association (GUCH Patients Association) was the brainchild of Professor Jane Somerville of the Royal Brompton Hospital, London. In August 1993, initial funding was obtained from the British Heart Foundation and a part-time administrator was appointed. Charitable status was granted in October 1994.

Medical Advancements

Advances in cardiac medicine during the last 40 years have meant that a new group has now emerged in our society. Children who once would not have survived have become adults. This has led to new thinking about what is appropriate as far as hospital care is concerned, and there is a movement throughout health services to provide specialist units for adolescents and adults with congenital heart problems - which is often hindered by lack of NHS funding.

The Difficulties To Be Faced

To most of us, many of these young people may not look particularly disabled - perhaps just a little blue in the face and hands. The reality is that they face physical limitations and an uncertain lifespan; some may need a heart transplant. For many, their normal development and education has often been impeded. They frequently feel lonely and isolated.

The Grown Up Congenital Heart Patients Association's vision was, therefore, to create a national support network run by and for young adult congenital heart patients. This network would allow similar experiences to be shared and practical advice to be offered on issues like insurance, employment, welfare benefits. Above all, it would encourage congenital heart patients to help and support each other.

Formation of the GUCH Patients Association

In 1993, work began to inform consultants and nursing staff at the specialist heart centres around the country about the Association. Members were gathered via hospital staff and personal contacts. 1993 also saw the production of the first newsletters, two a year initially. This has now increased to four issues a year. There was a great deal of enthusiasm for the Association, particularly amongst patients at the Royal Brompton Hospital, and many volunteered their services to assist in the running of the organisation.

In 1995 the GUCH Management Committee was established. They provide advice and guidance to the Trustees and Officers of the GUCH Patients Association on all aspects of the day to day running and management of the Association. The Committee is elected by the Association's members every two years and is accountable to the Trustees. The Association's first full-time National Director, Mavis Moore, was appointed in September 1999.

The aim of the Association is to provide support, but more importantly, to enable full adult living for this relatively new medical community which is growing by about 3,000 each year. They have survived as a result of advances in surgery and medicine for congenital heart disease. However, their disability leads to difficulties and disadvantage; they have problems securing the essential things in life such as employment, insurance, mortgages. Currently it is estimated that there are over 100,000 GUCH patients in the UK.

Our Aims

• To encourage GUCH patients to help and support each other by sharing knowledge and experience.
  
  
• To provide information and advice to improve the management of problems - general and medical.
  
  
• To provide support and encouragement for all GUCHs, their partners and families.
  
  
• To work with health care professionals to raise awareness of GUCH patients and their needs within health services.
  
  
• To organise events and provide opportunities for GUCHs to meet socially.
  
  
• To promote awareness and educate social care professionals, employers, insurers and the general public about the existence and the needs of Grown Up Congenital Heart patients.