NHS GUCH Guide
The NHS GUCH Guide makes it clear that "all adults with congenital heart disease, whatever the complexity" are to be seen "by an expert from a specialist centre at least once."
How do you know if you have? To help, we have drawn up a list of centres and consultants. Some consulants hold clinics in other hospitals too, so you might see them at a hospital more local to you.
Recognised centres/consultants
If you are in doubt you can always phone the Helpline.
NHS GUCH Guide - Launched in 2006, the first guide to outline the structure that the NHS should be providing. Herewith link to the Department of Health site document.
NHS Guide - PDF (link to Department of Health's website)
After many years of calling for it, Professor Somerville says it has been 15 years, the long awaited NHS GUCH Guide has finally been published.
Health Minister, Rosie Winterton MP, launched the guide at the Heart Hospital in London on the 11th May. Our thanks must go to Dr Roger Boyle, head of the Heart Team at the Department of Health, and his team, especially Sue Dodd, for their hard work and determination to get the guide published. Also thanks go to the members of the group, of whom I was one, who met to agree on the guide's content.
The guide is the first Department of Health document to set out what should be available to GUCH patients in terms of care and the structure of services nationally.
This is an extremely important step, as it will enable the investment in the service to be properly directed rather than what has happened in the past, a rather haphazard approach. It does not mean however that we instantly see this structure appear, as regrettably, it does not come with a pot of money.
One of the most important points it makes is that every GUCH should be seen at least once at a specialist centre to enable a proper diagnosis tobe made by a GUCH Consultant and a care path set out. Still too many GUCHs are being treated in places where there is not a deep enough understanding of GUCH medicine. It may well be that many will have it confirmed that their condition is simple and their care can continue as previously, however I am sure some will find that they have a more complex condition and by being treated at a specialist centre they have a chance of receiving a level of care to enable them to live a better life.
The guide does however avoid some important issues for obvious reasons. It does not say how many of which type of centre are needed and where they might be. As the Minister said at the launch, it is for us, the GUCH Patients Association, to take the guide as our base and to argue for the facilities to be provided in the way we feel they should.
SURVEY - We have conducted a survey of those hospitals which have said that they consider themselves GUCH Specialist Centres in England. We plan to add Scotland, Wales and Northern Ireland soon.
Michael Cumper
Chairman of the Board of Trustees