Mr. Tony Heffernan:

Members asked about people's actual experience of seeking respite and other support and care services. My personal experience was that we were offered respite in an acute hospital full of infection for two children who were prone to infection. For any child with multi-systematic breakdowns of their immune system and other functions, this is not, in my opinion or that of some of the doctors who cared for our children, the best place to put them. However, the practice continues.

Access to respite care is exceptionally limited, if there is any. We are self-funding and without State support, but we are transporting children from across Ireland, from Donegal to Kerry, with the LauraLynn children's hospice as one of the principal places. Typically, kids go there for one or two nights' rest after travelling for five hours on a BUMBLEance. We only have one BUMBLEance, with a second on the way.

On the opportunities to access respite care, we should not look at the opportunities but at the benefits. There is a cost saving, on which subject questions have been raised in the Dáil. The amount of money spent by the Health Service Executive on community nursing and similar facilities, including agency nurses, in providing respite and support care is phenomenal. On foot of a question asked more than one year ago, I believe the figure is approximately €78 million. The co-ordination of several areas and the provision of infrastructure such as respite care facilities such as Liam's Lodge will streamline accessibility to respite care for any family to a journey of one and a half to two hours.

Access to respite care will give them head space, which we never had. Speaking personally, we did not receive genetic counselling. One child was already dead and the other one was nearly gone and that was in a five-year period. We received a pre-implantation genetic diagnosis, PGD, and other stuff; frankly, we received information that was not aligned to what it should have been. While the actual personal experiences are strong, we are trying to be proactive. There must be greater emphasis on the patient's needs and those of the parents who are the 24-7 carers. One hears figures of which I seek a correction - one hears there are more home care packages, more home helps and other things. However, it should be quantified in hours and actual time provided to support families, not how many families are receiving home helps and other such services because the inputs and outputs are not the same. This must be improved drastically.

While I agree with all of my colleagues about collaboration, respite care, research and everything else, practical stuff can happen now, as many people are affected. The national office for rare diseases has been identified, which is welcome and a good start to a certain degree. However, if one considers the whole-time equivalents in the budgets and compares them with the volume of people employed, the investment amounts to approximately €1 per head in year one. Although this affects 6% to 8% of the population during their lifetimes, that is, 275,000 to 330,000 people, the initial budget is €1 per head. We need to prioritise.