Mr. Peter Murphy:

With regard to the numbers and where the numbers come from, Ms O'Donnell has made the point, but I want to highlight the real significance of gathering the numbers as a very early step in this process. I am aware it has been discussed a lot here.

A register is already in existence at Beaumont Hospital, which is an epilepsy and pregnancy register. It is a national register and this is being mooted by a number of parties, including the Department and the Minister, as a potential solution to this. There are a number of challenges to overcome but the infrastructure is, potentially, already in place. It only gathers data relating to epilepsy and does not gather bipolar information. It also only gathers the information for a limited period after a child is born. The key issue with the register is that for many years it has not been funded by the State but by industry support, which has recently run out. With investment by the State, there is a framework and an opportunity to transform and expand an existing register to gather data on pregnancies and information on individuals affected, as well as their treatment needs and the effectiveness of their treatment.

We were asked whether we were up to speed in Ireland. In our response in recent times we have been very much up to speed and the HPRA has been very proactive, as have all parties, in addressing the risk issues. The key point in respect of the risk for the future is that a lot of things were done in 2014 and a lot of boxes were ticked at that time. A lot of letters were sent out and information materials were developed and distributed by the HSE and the drug company. There were drug safety newsletters and changes to patient leaflets and everybody is now aware of this, including specialists and pharmacists. Sending out information has never been the problem. The problem is that the information is not getting through, for whatever reason, to some women on the ground.

Every time we in Epilepsy Ireland raise this issue we get two reactions. One is to ask if we will ever stop talking about it as people feel they already know about it. The other is from upset individuals like those who, following the "Prime Time" programme last year, could not sleep because they had never heard of the issue. The Organisation for Anti-Convulsant Syndrome did a survey of 100 pharmacies last year and found that less than 20% were even aware of the existence of the pharmacy card. It is not a question of doing things but of monitoring what is being done and the impact on the ground. We need to know that we will not be back here in two or three years' time having the same conversation. From the point of view of FACS Forum and Epilepsy Ireland, that is one of the critical questions.

The pharmacy regulator has set specific expectations for pharmacies. There is a mixture of trust and enforcement and all parties, including the HPRA and the HSE, need to be really clear about what they are going to do if we are still reporting medications going out in bags in six months' time, or the fact that 20% of women are still not aware of this.