Dr. Sin?ad Hickey:

That is the biggest challenge that parents and carers of EB have at the moment. It is a huge stress. The home care nursing is subcontracted to agency nursing.

It is not an easy job. It involves doing a four-hour bandage change and inflicting pain on a child. It is horrendous, so it is a very niche area for a nurse to stay in and there is a real struggle around that. We have much experience of nurses being trained - and it is specialist training they need - and then moving on. With the agency care there is a lot of turnover so we get a lot of nurses moving on. I think one of the parents said in the audiovisual room last October that she had 39 nurses in one year. I think it could even have been one season. There is a huge struggle here. There is an issue with the supply of nurses in general, but then we are asking them to go into this niche area. We are asking for the implementation of a sustainable service where we can have a care co-ordinator who can co-ordinate all these nurses so the parents do not have the stress of having to do that. They will not have to worry about which nurse is going to cover next week when their nurse is on annual leave or if a nurse moves on and that training must start all over again. Then there is having the outreach nurse in place as well for the adult services. We have a fantastic system in place for the youth services at the moment, so it is about putting that into the adult services. We would then have nurses coming from the acute setting to the community to train these nurses and giving them support to help them stay as well. We need to do something around the price point of nursing to make it more attractive for nurses to stay in this setting, because that is the biggest challenge for people with EB at the moment.