Before I turn to my main issue, but on the basis that this is health-related, I commend the staff in Our Lady of Lourdes hospital where I had to undergo a testing procedure. All is very well but I must say the staff there were incredibly professional and made something that should not be enjoyable in any way as enjoyable as it could be and definitely as painless as it could be. I just want to state that on the record. I turn now to an incredibly serious issue for a little child - a baby girl - and for other people and their families. In this case, we are talking about a child born last July. I will go right to the end in the sense that the child was diagnosed with hyperinsulinism. It impacts a number of people but is not that prevalent. The problem here is there was an issue with even being diagnosed in the first place. It was raised by a constituent who came to me. Luckily enough, the issue has been dealt with, but I wish to go through the problem that exists here and then the specific difficulties this family had to go through. The parents were told the treatment their child needed was in either England or Germany. They ended up being set up for six medevac planes. Hyperinsulinism is a genetic mutation. The child had lesions on her pancreas and this releases insulin willy-nilly. It is an incredibly serious condition and affects about one in 200,000 people. The parents in this case realised their child needed a PET-CT scan. They were told this could only be done in Manchester and required a specialised isotope dye. They made arrangements to travel to Manchester in January and in February, but these were cancelled at the last minute for several reasons, including the isotope not being available and, on another occasion, contamination of the dye. These problems in Manchester meant the family had to travel to Berlin. The issues they encountered there were incredible. This family was put through a great deal of stress and many issues. At one stage, the clinic in Berlin even told them Manchester had not been paid for the scans so on that basis it could not go ahead. The mother of this child had to pay €4,500 at the last minute. This is an issue that will need to be addressed, but there are many others beyond it. The family has been advised that the machine to carry out the isotope testing is available in Ireland but there is no one here able to operate it. The isotopes have to be specifically made and brought in, and in some cases this is from outside the EU. The family asked why the specialist from Manchester could not travel to Ireland to perform the scan here and were advised this relates to medical licensing issues for the medic. We need to know why this machine is not up and running if we have one here. In my follow-up contribution, I will go through some of the desperate circumstances this family was put through. In fairness to the mother, I think the family members did an awful lot of the heavy lifting themselves and got this scan done. I was only too delighted when the child was diagnosed. She is in a far better place now and thriving. Obviously, she has great parents, but we need to be able to help them in these sorts of circumstances.
Sentiment score: -0.00
I welcome what the Minister of State said at the end. I will provide the information explicitly because it is absolutely necessary. While all this is commendable with regard to cancer care, it does not deal with the issue at hand, which is this child who was diagnosed with hyperinsulinism, and the fact that we have the machine here to carry out this PET-CT scan. There is an issue with regard to the isotopes and then ensuring we have a medical practitioner who is sufficiently licensed. That is something I expect an answer on because it needs to be done. I will also be providing information the mother told me with regard to the issue they had. Following the child having seizures, she went to the GP first of all. Eventually, the GP referred them to Temple Street neurology department, and it diagnosed the child with epilepsy very quickly and spoke about the necessity to have Keppra medication, which is incredibly dangerous if a child does not have epilepsy. The parents were slow; they did not want to do this. They were actually sent from the service because they said they wanted to wait until a set of tests had been carried out. At that point, an ambulance had been called within a couple of days. I will not have time to deal with the absolute specifics of that, but it was an absolute nightmare. In fairness to the paramedics, they did a blood sugar test and it gave a reading of 0.6. It was a nightmare in the hospital but eventually, the child was diagnosed with hyperinsulinism. However, the waiting, the journeys over and back to Britain and Germany and the number of cancellations show this is an abject and absolute disaster. There is a lot more detail beyond that. I would not like to be put in that circumstance.
Sentiment score: -0.03
There is also the issue with regard to the payment. Our own health service, the HSE, should have played a better role in ensuring those bits could be dealt with.
Sentiment score: 0.38
I appreciate the flexibility the Chair has offered me, but I will need an answer. We need a solution with regard to this. I do not think this is good enough for this family or any other family that finds themselves in these circumstances. The only good news is that the child was seen and dealt with and is thriving at the moment.
Sentiment score: 0.39
And deliver the service.
Sentiment score: 0.00