Mr. John Dunne:

We thought we had an understanding with the then Minister for Social Protection, that in commissioning the cost of disability survey, a survey on the cost of caring would be also undertaken. However, in practice, it just went ahead as a survey on the cost of disability. I am happy to report that we commissioned our own cost of caring survey and we will be launching it in the next month or so. It uses the same methodology and is undertaken by the same body, so it is very much like for like. To be fair, we are not trying to recover the costs of caring here. We are saying there are practical costs. At the moment, the carer's allowance is marginally more than the jobseeker's allowance. To qualify for the carer's allowance, one has to provide a minimum of 40 hours of full-time care a week. There are all sorts of restrictions around what one can and cannot do while getting the allowance. For example, one can sit at home and read novels or magazines to one's heart's content, but if one reads a textbook to do a course, that is counted as work and that person loses the carer's allowance. It is a pretty bizarre rule, if you think about it.

There is a situation where carers getting a negligible increase on what they get as jobseekers. They have to do at least 40 hours of caring a week, some of which is quite onerous. That is the backdrop. Now we have a situation where in addition to doing the work, they have to comply with regulations and rules, which means they have to be conversant with them. They have to submit periodic reports and account for what they are doing. There are many people in Ireland whose job is to tell people what they need and inform them that, unfortunately, the resources are not available to give it to them. If we had fewer people telling others what they need, and more people delivering the resources, we might have a better match up. The point we are simply making is that if a lawyer is going to be hired, nobody is going to argue with the principle that the lawyer is spending his or her time on the matter and deserves to the paid for that time. I believe the thinking is that remuneration will be fairly modest. I do not think anyone is going to get rich out of being a decision-making representative. They can also claim such expenses as they may have. I will be perfectly honest, I do not know what they might be, but again, I think they would be fairly minimal. The point we are making is really one of principle. If it is good enough for the lawyers, for example, then why on earth is it not good enough for the family members who are doing exactly the same thing? They are doing it on top of what they have to do already, so why would they not get paid?

The Deputy's question on the register is a good one. We totally support the idea of the advance healthcare directive register. I can think of a case recently where there was an advance healthcare directive registered. The hospital was aware of it and treatment was given in the ambulance on the way in to the hospital because the paramedics did not realise that was the case. To be fair, it was an honest mistake. The register is part of the problem.

What are doctors meant to do at 1 a.m.? Are they meant to take a person's word for it? Are they meant to go and check somewhere? Where will they check? The fact there is a register is not of itself sufficient. It is helpful but it is not enough. The point is definitely worth pursuing.