Kate O'Connell (Dublin Bay South, Fine Gael) | Oireachtas source

I apologise for my late arrival. I had another engagement. I will briefly touch on the valproate issue. I am a pharmacist by profession and have been dispensing valproate for years. We talk about awareness of the side effects and when they happened and so on. In terms of where we go from here, women with epilepsy who want to have a baby have an additional requirement for folic acid. It is all very well complaining about the past - as a pharmacist, I understand people's issues - but the focus should surely be on proper folic acid supplementation to mitigate against any of the side effects of medications that women often must take to keep them seizure free and maintain their pregnancies.

Folic acid is something I feel particularly strongly about, not only in relation to neurological conditions. There is additional need for higher strength folic acid. It depends on weight but I understand the current practice is 5 mg, 20 times the dose. That is not commonly known. That message must be delivered through GPs and community pharmacists because when it comes to access the community pharmacist generally knows first when someone is pregnant because pharmacists sell the pregnancy test. I have done some work with my party on having folic acid placed beside pregnancy tests. I have also done the sums on the cost of providing folic acid free of charge and have looked at what is done in other countries. There are some things that we cannot change now but we can protect population health in the future with proper folic acid supplementation. If anyone here is doing work on this, I ask that he or she address the issue.

One of the witnesses spoke about access to medication. I agree that the focus of the system is on quality-adjusted life years, QALYs, which determine whether one takes X, Y or Z tablet. When Orkambi was being approved it was widely noted that it was not only an issue of curing a condition or living longer but also what the increase in lung function could mean for somebody. That discussion has started and it is not as cold and clinical as it used to be. There is a way to go on this but the message should go out that whereas Orkambi did not go through the system or tick the boxes, a dispensation was made because of the particularly high rate of cystic fibrosis in Ireland. Advocates put their names out publicly and showed what the small increase in lung function gave them in terms of quality of life.

It may have been discussed before I arrived but there is an issue with rapid neurological disorders such as motor neurone disease and some of the rapid cycling types of MS, for which home care packages kick in at 65 years. Motor neurone disease is often a younger person's condition affecting some patients in their mid-40s. It does not matter what a person's means are or if he or she is a billionaire. People with a condition such as motor neurone disease require a medical card because they require access to services. The witnesses know this. It is very concerning that individuals, including some who do not have family members, who are faced with the burden of this very frightening condition and a bundle of paperwork may be told that they cannot access services because they are below 65 years and have a condition that is sometimes associated with older people. Have any of the witnesses or the organisations they represent done any work we could present to the Minister for Health showing how we could make it easier for people in such desperate circumstances to access services, home care packages and the grants they require to convert their homes as their condition progresses. Many people who have rapid progressing conditions want to live in their own homes. Sadly, I have often dealt with people who have died before they have had the appropriate adaptations made to their homes. I would be interested to hear of any work on this or any proposals the organisations may have put to the Minister on it as it may be something that could be easily fixed. No doctor will sign off on something that says a patient has a rapid progressing neurological disorder unless the patient has it. I cannot see why GPs must certify and there is so much rigmarole when a definitive diagnosis has been made of a serious neurological disorder.

I sit on the Committee of Public Accounts. Recently the Environmental Protection Agency was before the committee on water quality. I referred to a National Geographic report on the high level of drugs, illicit and otherwise, found in the water supply in some cities.

Last week it was reported that all the shrimp in Suffolk - I do not know if anyone else has read about the shrimp in Suffolk - have tested positive for cocaine. By the looks of things, the excretion of illicit substances into our water supply is becoming a huge issue. We talk here about people taking alcohol and other drugs consciously in pregnancy, but are the witnesses aware of any work or studies on increases in neurological disorders or conditions among neonates in this regard? Is there any link between this and water quality? Is any of the witnesses' organisations undertaking a body of work in this regard? I have been waiting for three weeks for a reply from the EPA regarding the work it is doing on this. Perhaps someone within the witnesses' fields is doing work on the very clear carcinogenic, teratogenic and neurotoxic effects of illicit substances, or perhaps it is only me thinking about these matters.