Dr. Rosemarie Watson:

When Great Ormond Street staff came back in the 1990s, they brought with them the specialties that make a big difference to the day-to-day lives of people with EB, namely dieticians, physiotherapists, doctors and, most importantly, nurses. Everybody in our hospital learned from their experience and they stayed with us for two years to embed that information. We felt we got great training.

For our families, it was night and day. Crumlin was the only place they were coming to then. We actually saw a 33-year-old in Crumlin hospital. We must be the only specialty that ever did that. There was no adult service then so the patient came to Crumlin and it worked out fine. Obviously we do not have to do that now, which is good.