Dr. Corrina McMahon:

In the UK there is a series of community care centres in which they run a "Get wise, Get tested" campaign, and there are big posters involved. If somebody goes to a community care centre, he or she can get a haemoglobinopathy screen done and the community health nurse will provide the results. It is run by the NHS, so it is funded. It is complicated here in Ireland so we really need to think about the administration and how we do this.

We would link with the National Genetics Centre. We are looking at parents with a proven track record of sickle cell traits, and the mum would be pregnant again and so we would send them to the National Genetics Centre. If they already had their first baby and it had sickle cell disease, we would send them on for counselling at that point, so that they could look and see and how did this happen, what are their risks and what they should do.

I take the Senator's points about Galway and Cork. We almost had Galway on board at one point, but regrettably that fizzled out. We are just past that now. There is absolute international evidence that newborn screening saves lives. We should be doing this. I can go and beg maternity hospitals to introduce newborn screening, but we now need to have it on a sounder footing. In the UK, the Guthrie card goes to the metabolic centre and has a little punch and then they run the test, and then they send it to the haemoglobinopathy centre, which also has its little punch and the haemoglobin results are provided. Then it is sent back to the community centre, and the community centre links with the individual who has the baby or who has their own test done. That is how it happens in the UK. In Ireland, we get the tests. We ring the maternity hospitals, which send the babies to us and we see them within four weeks. Our turnaround time is to see the children within four weeks of being diagnosed. It is working well, but the issue is that it is working brilliantly for those areas that are testing, but is not working at all for those who are not.

The normal results from people we test go back to maternity hospitals, but they never get back to the kids. I try to see all of the children with the disease, and I also see all those with traits in my screening clinic, so that I can tell them their results. However, I do not have the capacity to send normal results back. The system does what it set out to do, which is to find the babies with sickle cell disease, but it is not the right way to be doing stuff.