THE EPIDERMOLYSIS BULLOSA PATIENTS' CHARTER

Epidermolysis Bullosa (EB) is a rare, genetic condition in which the skin and mucosal linings of the body blister abnormally easily. It is a condition rarely encountered by most medical, nursing and paramedical staff and poses particular issues which must be addressed.

Patients with EB, or parents in the case of children, have the right:

1)  To be listened to as an expert on how the condition affects them or their child and the risks of some routine  procedures, such as the use of sticking plaster.

2) To have recognised by professional carers that knowledge of the condition is needed, even where the referral is not for an EB related matter. This may mean, where the urgency for treatment allows, consulting medical colleagues with a special interest in EB, specialist nurses and paramedical staff or DebRA.

3) To be given as full information as possible about proposed courses of treatment and how this may impinge on their EB.

4) To be cared for by dermatologically trained nursing staff, or trained paediatric nurses in the case of children, in hospital or for ward staff to have access to advice from such nurses.

5) To be referred to a consultant, acceptable to them, who has specialist knowledge of EB either to be responsible for their regular care or for a second opinion.

6) To have access to the most appropriate dressings and other medications, chosen on the basis of clinical need.

7) To be treated as a whole person, both in terms of access to a wide range of medical specialities and in bearing in mind social, psychological and emotional needs.