Colm Burke (Fine Gael) | Oireachtas source

I thank the witnesses for coming before the committee and commend them on their dedication and commitment. When I first came across this issue three and a half years ago, it was a case of everyone fighting for his or her own corner. It is important that we work together to help families coping with a rare disease.

Has the 2011 EU directive on cross-border health care been transposed? I understand it has not been transposed but I am open to correction. If it has not been transposed, is there any indication of when this will happen? In some cases treatment abroad presents no problems and it works out very well, but in others it can involve battles lasting for two or three months which leave families traumatised. The experience varies among HSE areas and from one medical condition to another. Have any measures been put in place to make the process more efficient and less time-consuming? Something needs to be done because the last thing a family in this situation needs is indecision. They have already come through a traumatic experience and it is important they get a decision on accessing care abroad.

Are Mr. Heffernan and Ms Daly happy with the availability of respite care based on their experience of dealing with families or can more be done to improve the availability of care? I have come across a number of families who are providing care on a 24-7 basis find they cannot access the supports they need. This is why respite care is fundamental to families.