Dr. Rosemarie Watson:

Those are very good questions. In the past, there were about 17 consultant specialists in the hospitals that EB patients attend but the lead specialist in most countries is usually a dermatologist. That is because of the large amount of wound care involved.

How are we trained? My training was on the job but that is a long time ago. Nowadays, we are trying to attract people in because we had a long gap during which we did not have an adult consultant. Debra Ireland is teaching in the universities to try to attract medical students early. Some of the EB patients have actually gone to the universities to talk to the students. That has been a very positive experience which we are very grateful to Debra Ireland for.

One of the problems in paediatrics is that by the time the dermatology trainees get to us, it is usually year three and while they are more experienced at that time, the downside is that they tend to have made up their minds to stay in adult dermatology or not to go into EB. As such, we have a little problem to work on in that area.

We get our training through the international conferences. We have gone individually. Great Ormond Street Hospital for Children trained us. When we opened our first EB clinics in 1996, I think, it sent over a team comprising a physiotherapist, dietician and nurse. They were with us for about two years as we did our clinics. That was absolutely amazing and it was courtesy of DEBRA UK and the people in Great Ormond Street Hospital for Children. That is generally how the training occurs.

I will ask Ms Callis to respond on the carer’s allowance.