Member's statement: Children with Life-limiting Conditions: Access to Services

Member's statement by Mrs Linda Dillon on 8 June 2026.

MLA: Mrs Linda Dillon
Party at the time: Sinn Féin
Date: 8 June 2026
Type: Member's statement
Business: Members' Statements
Heading: Children with Life-limiting Conditions: Access to Services
Assembly identifier: Official Report component 5600164

Text

I call on the Health Minister to ensure that families with children with severe, complex, life-limiting conditions do not have to lose out on spending precious time with their beautiful children because they are fighting for services to which they should have had access. I thank the Children's Hospice for its amazing services and support for such children and their families, both during their life and, unfortunately, at their death.
In recent months, I have helped two such families, including the parents of two amazing, beautiful little girls with severe complex needs requiring 24-hour palliative care. Both of the girls passed away unexpectedly, having been supported by the Children's Hospice, but both families spent precious time during which they should have been able to focus on their girls on fighting for the services that should have been in place to support them. They had to reach out to me, as one of their elected MLAs, for support. I was more than happy to offer whatever help I could. However, those families should not have been in that position. The services should have been in place to care for those children and support their families. Lila Dripps-Weir, aged two years and 10 months, died in the Children's Hospice last Sunday in the arms of her parents, Hayley and Robert, surrounded by her brothers and sister. The Children's Hospice was the beacon of light that could be relied on when all other services failed Lila and her family. We need a system that responds to the needs of those families so that an extremely difficult situation can be made a little bit easier, and so that families can focus on looking after their children and being a family. The Health Committee recently completed an inquiry into palliative care services. There are recommendations from that inquiry that would go some way to improving services. The Minister needs to lay out a plan for the implementation of those recommendations. We also need to see real and meaningful change in how social care is delivered to support families in the community. Children with life-limiting conditions and their families deserve the opportunity to be a family, make memories and do normal, everyday things. They should not have to spend endless hours on the phone or at meetings, begging for the help that they are absolutely entitled to. The system is failing them. We can, and must, do better. Lila's mummy, Hayley, is asking that we all, as MLAs and Ministers, do what we can to create change in Lila's name. The last words of my statement are hers:
"I have fought for two years and 10 months, and I don't intend to stop now."

448 words. Text as published by the Northern Ireland Assembly.

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