Oireachtas Joint and Select Committees

Thursday, 14 March 2013

Joint Oireachtas Committee on Health and Children

Challenges Pertaining to Epilepsy in Ireland: Discussion

9:40 am

Photo of Caoimhghín Ó CaoláinCaoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

At the outset I would like to extend a warm welcome to all three witnesses, Mr. Mike Glynn, Mr. Peter Murphy and Dr. Peter Widdess-Walsh.

It is hugely important for us as legislators, leaving aside our respective party and non-party hats that we wear here, to inform ourselves as we prepare to engage even more deeply on the detail of upcoming legislation, and this particular legislation on the pricing and supply of medical goods Bill. I do not have extensive exposure to epilepsy, but I have had a number of experiences, including a very close friend who has been through this experience. The words "been through" are important because Mr. Glynn has indicated that with proper medication and treatment, some 70% to 75% of people come out the other side and that there is a good result for many of those who have a seizure experience at some point in their lives, and this could present for any of us in this room who may have never had the experience previously. That is important.

Mr. Glynn made a point regarding the immediate impact following a seizure or a series of seizures, and the life-changing consequences of that. He mentioned the driver licence issue and not being able to self-transport, the employment and education consequences, and the loss of independence. Sadly, as with many other issues we have addressed here over the years, there is also a social stigma aspect. We often think of the stigma attached to mental health, something that we, as an all-party committee, concentrate on trying to break, and will continue to do that, but there is a social stigma attached to epilepsy also and a reluctance on the part of some, perhaps many, to even expose the fact that they have this particular condition. That must be addressed.

I have a number of questions. On the increased risk of mortality in the event of generic substitution and the inexactitude of the replacement drug, do we have any statistics in terms of either domestic or international circumstances that present? I am sure it is not just anecdotal, but the witnesses may not have the detail with you here today. Would any of the three guests be able to offer any further information on the increased risk of mortality as against any of the other likely or possible consequences of not having that exact drug consistency continuing?

On the international situation, I note some uncertainty in the witness's presentation.

He referred to guidelines in regions such as the neighbouring island, north of the Border and France that discourage AED switching. However, he then stated countries that did not allow the substitution of AEDs included Britain and the North of Ireland. Can I receive clarification on this point? Are there guidelines or more prescriptive provisions?

The deadline for the submission of amendments to the Bill has passed. I advise members that I have taken the opportunity to table appropriate amendments. Members who may not be clear on this point should note that the door is not shut, even now. If concerns are raised on Committee Stage, we can introduce amendments on Report Stage. I claim no monopoly in getting this right and I am just making the point that if another issue arises, we will have another opportunity to address it next week with the Minister. Report Stage will be taken in the Dáil Chamber.

With regard to pharmacists and a lack of awareness, what engagement has there been with the Irish Pharmacy Union to try to address that significant deficiency? Outlining the problem here is not enough. Have steps been taken, through the Irish Pharmacy Union's fine periodical and other means, to inform its members of this concern?

The epilepsy monitoring units at Cork University Hospital and Beaumont Hospital remain unopened. When do the delegates expect the delay to be overcome?

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