Professor Frank Casey:

I thank the committee for giving me the opportunity to speak with it today. I have practised as a consultant paediatric cardiologist at the Royal Belfast Hospital for Sick Children since 1995. Since September 2021, I have also worked as a clinical professor of paediatric cardiology at Ulster University and at Queen’s University Belfast, leading a research programme in congenital heart disease. My involvement with cross-Border healthcare has been as Northern Ireland clinical lead in the development of the all-island congenital heart disease network. Over the past ten years or more, I have learned a lot about the benefits, challenges and opportunities provided by structuring the care for children with heart disease on an all-island basis.

I will briefly give the committee a background of our network in order to set the context. The care of children with heart disease, particularly in the context of paediatric cardiac surgery, is a very specialised area. Historically, paediatric cardiac surgery was carried out in two centres, namely Dublin and Belfast. Over the past 25 years, there has been a changing environment in the delivery of this surgery following a controversy relating to– as some members may recall – heart surgeries carried out in Bristol in the 1990s.

An inquiry was conducted out of that and the consensus was that such specialist cardiac surgery should be conducted in larger volume centres with a target of 400 cases per year. In Belfast or Northern Ireland, we only generate about 110 cases per year so it was not viable to continue that service in the long term, and that created an urgent need to find a solution. Essentially, there were two options for the babies and children from Northern Ireland - one was to fly the children to England and the other to have their surgeries in Dublin. For a number of years, we did have to fly children to England. It was really difficult to fly mothers and babies when there was a service a couple of hours down the road that we could not access.

Interestingly, the crucial step in finding a solution was to have someone from the outside look at this problem. In 2014, an international working group headed by a surgeon called Dr. John Mayer came and looked at the service North and South. That group did not have the same political restrictions as others and it made an important recommendation that I think applies to many areas of medicine on this island. It said the clinical and physical resources of the two jurisdictions were to be considered as one pool of resources and should be considered a network to develop a solution for patients with congenital heart disease on the island of Ireland. We moved on from that to try to develop the network. A major step was the acceptance of those recommendations and the initiation of the network. Then, in 2016, that was backed up by financial support with the equivalent of £43 million, which was a major step.

We have worked on that model since 2014 to create a cross-Border network. There have been many obstacles to overcome but it is now well established and has improved the care of children with heart disease across the island. I hope the committee has an illustration of the network as it exists on the island with two major centres, Belfast and Dublin, with the surgical and catheterisation services centred in Dublin. Importantly, it is a tree network, with satellite centres in Cork, Limerick, Galway, Derry and Craigavon and, hopefully, soon in Drogheda. This model achieves the very important goal of giving as much care as possible close to the patient’s home.

To point out some of the barriers we find to change, which I think is the same for any cross-Border health initiative, one is the fear of disintegration of the local service. That was a real fear for the families we treated in Belfast and the people working there. The parent groups were very prominent in our considerations and, indeed, performed a really important role in shaping the cross-Border network, which is a lesson for other services.

We had to challenge the existing thinking on models of healthcare and delivery of healthcare on the island of Ireland and that can still be a challenge where people tend to confine their thinking within their own jurisdiction and not look with the patient at the centre at where they can receive the best possible care. We were lucky enough to achieve the resources needed and crucial to this was the building of professional relationships. My colleague, Dr. Oslizlok, and I worked very closely together through that process. Now, ten years later, that service is well bedded in and provides a daily service and treatment for children across the island.

The key achievements are that no longer does any child have to leave the island for the procedures and treatments they need apart from heart transplantation, and we have had investment in a children’s heart centre in Belfast and, very importantly, the establishment of joint training of future cardiologists across the island, which I think will secure the future of care for the children. We have also established in parallel to that the congenital heart disease research programme.

To conclude on some of the key elements in terms of delivering cross-Border healthcare, I think this will be delivered by structured clinical networks. There might be conditions or groups of conditions where the people in the network agree on a common goal and then put a structure in place to deliver that. It does require strong clinical leadership to overcome many of the barriers. Really importantly, any cross-Border network must deliver equity of access based on clinical need regardless of place of residence. In the cardiac field that we work in, we now have a common waiting list across the island, which is a really big step forward.

One of the really important things is that you cannot do this without high-quality IT infrastructure. You also need to underpin it with proper service-level agreements and, really importantly, governance structures to maintain clinical standards.

I mentioned the family and patient engagement group. Engagement of the patients within any initiative is really important to involve them in the change. If all that is done we have found that the sum of the parts is greater and you get what we call collective intelligence, which creates a learning environment across the network. We still have lots of work to do in terms of seeing patients mutually across the Border in outpatient settings. The model that we have developed, although it may not be applicable to every setting, has points of learning for all areas of medicine. With a total population of around 7 million, I think this model is particularly relevant for the less common conditions where the jurisdiction has expertise in both areas but that is limited and it makes the best use of that. Particularly for those living in the Border areas, cross-jurisdictional care has the potential to improve their access to care and consequently their quality of life. The benefits are not just in the immediate care, but in the efficient use of infrastructure and resources.

To conclude, our experience has shown that patients are happy to receive care in either jurisdiction if that gives them the best possible access to the treatment they need. Whichever jurisdiction the expertise lies in, patients in any part of the island should have the opportunity to benefit from it.