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

I have met with representatives of both organisations - Fibromyalgia Suffers of Ireland and Spina Bifida Hydrocephalus Ireland. The outline of the circumstances that present to those they are supporting is very distressing. I want to thank most sincerely all of those who have attended the committee, including those who spoke. They have given powerful testimony on the conditions both of fibromyalgia and spina bifida hydrocephalus.

I concur with the Chairman that it is not enough for us as a committee just to take note of the respective submissions and testimonies made here today. I strongly urge that we not only engage with the HSE but also copy the letter to the Minister, and include at least some of the key recommendations that both organisations have sought.

I wish to ask a few brief questions of both organisations. The testimonies have been powerful and they stand on their own merit but I wish to extrapolate some additional information if it is available, although it may not be.

I welcome Mr. John Maher back to the Oireachtas. His contribution was deeply moving and he is to be highly commended on his courage in appearing before the committee, particularly when 87% of fibromyalgia sufferers are women and only 13% are men. Is there any reason for this disproportionate ratio? While the cause of fibromyalgia has not been identified, is there a reason that a significantly greater number of women are impacted by this condition? The condition has been noted to occur in genetically pre-disposed individuals and can be seen in several family members. While I do not want to cause any upset, has the delegation noted multiple instances of this condition in families?

The point was made that fibromyalgia sufferers have to make more general practitioner, GP, visits as well as specialist and inpatient visits before a diagnosis can be made. Is the diagnosis rate improving? Is there better awareness of the syndrome among GPs? What steps are being taken to ensure health care professionals are more aware of this syndrome? Is the IMO, Irish Medical Organisation, involved in informing the medical profession of the symptoms which would lead to more speedy diagnosis?

The delegation made the point there are no supports available to sufferers. What supports could be introduced which would best benefit sufferers? I note the delegation highlighted more easy access to disability payments, medical cards, etc. Are there other areas which the delegation believes would be of real and practical help and support?

On the point made by Spina Bifida Hydrocephalus Ireland about the appointment of a paediatric consultant urologist, we do not want to wait until we have a new national paediatric hospital to have such a consultant in place. We want increased service provision and greater specialist front-line services today in the Temple Street hospital. Has Spina Bifida Hydrocephalus Ireland any indication of whether a paediatric consultant urologist will be appointed? Having a designated nursing post at Temple Street would address people presenting with these conditions as well as addressing research.

With all respect to the authors of the research report, the idea of women planning to become pregnant in a month's time is a wee bit silly. I am the father of five and we planned none of them. My wife would be the first to offer that information. Would it not be wiser to say women of child-bearing years would be part of the research on folic acid and pregnancy? As a non-medical person, I am assuming there are no downsides to folic acid levels intake. Would it be of help to show that the percentage of children born with spina bifida was significantly reduced in a particular cohort of women who took folic acid?

Is there any particular reason that a family support worker service is not provided for the large population areas of Donegal, Cork and Kerry?