Children's Healthcare

Members' Statements – in the Northern Ireland Assembly am 10:45 am ar 11 Mawrth 2025.

Danfonwch hysbysiad imi am ddadleuon fel hyn

Photo of Linda Dillon Linda Dillon Sinn Féin 10:45, 11 Mawrth 2025

I rise to speak about a number of children's healthcare issues. I recently met two families who have children with achondroplasia, which is a form of dwarfism. At the moment, there is no clear pathway for those children when they are diagnosed. Not only that but there are no services for them. They may be lucky enough to get on to clinical trials in England or in the South, but that is the only type of service that is provided for those children.

The families understand that the condition is rare and that they therefore may not be able to have a dedicated service just for such children in the North. They ask the Minister to look at other opportunities, such as whether there is potential for an all-island service or a service that is linked with one in England, where something might be done remotely. However, at this time, there is absolutely no service. We need multidisciplinary teams so that, when the children are diagnosed, all their needs are looked at. The lack of a service will have an impact not only on the children's health but on their education, socialisation and every element of their life. I pay tribute to the parents and carers, because they are fighting for everything that those children have, and they receive nothing in return.

I ask the Minister to look seriously at our children's services and to look not only at that one condition. We heard yesterday about givinostat, which is used to treat Duchenne muscular dystrophy. We need to look seriously at what services are available for those children as well. The same multidisciplinary team approach should be applied. There are a number of other services: we know that children are often unable to access the percutaneous endoscopic gastrostomy (PEG) feeding surgery. All those issues feed into serious concerns about the health services that our children receive.

I welcome the Minister's announcement on the new children's hospital. It is positive, a good thing and much-needed. We visited the children's hospital in the Twenty-six Counties, and I hope that excellent services will be delivered there for children right across this island. However, I want to know what will be delivered when we have our hospital and what will be delivered for children and their families before we have the hospital.

I ask the Minister and the strategic planning and performance group to look at what services are currently commissioned and what can be commissioned. Let us be innovative and deliver for those families and children. In some cases, they have life-limiting conditions. Let us ensure that the life that they live is a good life.