Helping sufferers of rare illness

MARK NICHOLLS

Patients in Norfolk with a rare illness are taking part in a new research project aimed at providing much-needed information about their condition.

UEA lecturer Dr Richard Watts believes the educational needs of patients with vasculitis - a serious inflammatory condition affecting the blood vessels - have been neglected.

Now he is heading an educational project with funding of almost £50,000 from the Arthritis Research Campaign to explore the educational needs of patients and develop a specific educational package for them.

Vasculitis patients at the Norfolk and Norwich University Hospital are being invited to take part in focus groups to establish in more detail their prime educational needs and concerns.

A smaller group of patients will then be interviewed, and a postal questionnaire will be sent out to members of a national vasculitis support group. Patients in Essex and Birmingham and Essex will also be involved.

Vasculitis is the umbrella name for a group of conditions which lead to inflammation of the blood vessels, interfering with the function of organs supplied by them, such as the kidneys, heart, and skin. In severe cases it can lead to organ failure, nerve damage. For years it was a killer condition but the use of drugs such as corticosteroids and immuno-suppressives have improved the survival rate.

Dr Watts said: “The educational needs of patients with vasculitis have been neglected, probably because they are looked after by doctors in different specialties as it can affect so many different organs in the body.

“Often vasculitis starts quickly and can be life-threatening, requiring urgent therapy with potentially toxic drugs so there may not be much time for much patient education before treatment begins. With the increased survival rate, patients require information on their disease, what the long-term outcome is going to be, possible side effects of treatment and how to self-manage.”

The handbook should be available within two years.