Dr. Eibhlín Conneally:

I am a haematologist and I am head of haematology and oncology at St. James's Hospital. I am not a sickle cell doctor or haemoglobinopathy specialist but, to date, we have not required an adult haematologist with that skill set.

As Dr. McMahon alluded, we have not had this disease in adults in Ireland before now due to a successful paediatric programme. There are about 400 people with sickle cell disease within the programme.

There are 38 adult patients in St. James's Hospital who moved to Ireland as adults or, alternatively, transitioned to St. James's Hospital because of clinical need. For example, one child needed to go to the intensive care unit in St. James's Hospital because the bed was not big enough for him. Hence, he was transferred. What we want is a planned service. There are 28 patients in the paediatric cohort who are older than 16 years and 22 patients between 15 and 16 years of age. That leaves us with a cohort of 90 patients needing adult care.

The issue concerns setting up a programme and having a chronic disease model. The best established model is the haemophilia model developed following the Lindsay tribunal in Ireland, where there are dedicated consultants operating on a hub and spoke model. The specialist resource is in a single hospital and liaises with hospitals elsewhere in the country. Approximately 90% of people with sickle cell disease in Ireland live in Dublin, mainly because of the way immigration accommodation was set up. Some people have moved to the midlands or Limerick.

It comes down to resources and funding resources and trying to have specialist people involved. There is no commissioning service within the Irish health service so, in terms of trying to establish costs, it is quite difficult. As Dr. McMahon said, the organisations and teams treating sickle cell disease in the UK and in the US are very keen to help us to get it right. They see that we are at the beginning, particularly from an adult perspective, and are keen to help.

Another important point is that patients with sickle cell disease are not automatically entitled to medical cards. That is straightforward in theory but would be a useful feature for them.

From our perspective, setting up a sickle cell service is a priority and we have the necessary colleagues who can support the service but we need nursing and medical resources. We recently interviewed for a consultant haematologist with an interest in sickle cell disease and, unfortunately, given the difficulties in recruiting consultants, it is unlikely that we will be able to appoint someone from the competition. I am happy to take questions.