Dr. Sin?ad Hickey:

There are a number of issues there. There is one around the covering of the bandage financially and then the whole process of issuing the bandages. The Deputy is correct. The bandages of people with severe forms of EB should be ready to collect at the public health centre monthly or whenever they collect them. I do not think there is the awareness of the importance of the sizing. They might get sizes too small. The suppliers might think they are fine without understanding the condition when in fact the people cannot use them so have to go back and look for more. This is a lot of pressure on parents who are already struggling trying to co-ordinate all the care in the home and then having to try to go back with issues with bandages as well. It is about fixing the system and building awareness there as well as making sure there is a bandage scheme for all people with EB in Ireland. Australia has a fantastic scheme where the bandages are delivered to the house every month for all types of EB, whether severe or not severe. Spain and the UK have similar. The UK has one particular supplier through pharmacies. Again, once people have a note from their clinician explaining what bandage types they need, this is all organised for them and they get that all going.