News from St Mark’s

Hello, I am a Familial Adenomatous Polyposis patient, better known as having FAP. I am extremely fortunate to be under the expert guidance of St Mark's Hospital, Northwick Park, in Harrow Middlesex. St Mark's is located on the north western side of London, but is right in the middle of the world map of bowel disorder treatment.

St Mark's Hospital is a centre of excellence with an international reputation in the management of bowel disorders. St Mark's is a centre of research, which will help in the treatment of future generations. Furthermore, St Mark's helps patients on a world wide basis benefit by improving standards of treatment, through the teaching programmes the Hospital runs.

St Mark's realises the need for patients to have a clearer understanding of the nature of their condition. The Team believes that patients need to feel comfortable when discussing their situation with the Doctor, so people can make better informed choices and feel secure in the Doctor's course of action.

When a person is told they have a disease that will remain with them for the rest of their lives it is a shock. This shock increases when the Doctor explains that the disease is a killer if it is not treated.

Patients at St Mark's hospital are fortunate. All the time our understanding of FAP is improving. Imagine a policeman trying to find a criminal. The more leads the policeman follows, the closer he gets to catching the fugitive. My father was killed by FAP, long before he should have died. So were many of his ancestors before him. Not one of them stood a chance. The policeman did not know where to start looking. The policeman would not have known what to do with the criminal, even if he caught him. How times have changed.

Well St Mark's Hospital is similar to Scotland Yard and this Scotland Yard has been doing a lot of detective work. They know where to look to find FAP, they know how to tell the whether the criminal is present and whether he may be present in our children.

On Saturday November 12th 2005, St Mark's took another step forward in helping FAP patients and their families, by organising, what is probably the first ever, FAP Information Day. The day was designed to help patients understand all the important issues surrounding the management of the disease.

To begin the day Professor Robin Philips outlined the Surgical choices for FAP. Personally I have had my colon removed, I have lived temporarily with a stoma, now I have a pouch to replace my rectum, which has also been removed. When facing surgery there are some things you want to know. The Surgical Team always explains clearly what they want to do. Professor Phillips made the procedures very clear on the day.

Patients need to understand clearly what the matter with them is, then they need a sound idea of the way forward. Understanding is one of most important steps to getting on with life. I am still not sure why I was given a rectum and a colon. You can get on without them. I must ask Professor Phillips one day.

Jacquie Wright, Sandra Burke and Kay Neale run and work in the Polyposis Registry, which is designed to support FAP patients and their families. At the Information Day they explained the role of the Nurse clinics, the origins of FAP and the risks of inheriting FAP. There was also a fun session called Inner Beauty, where we got a chance to find out how much we knew about our insides other than our bowels.

Ripple Man, the nurse who examines bowel tissue for signs of FAP, very kindly explained the surveillance technique of endoscopies and allowed patients to get close up to her endoscopy equipment.

FAP sufferers need 2 things