Jack McCrystal who has a neuro-muscular disorder which means he is fed through a tube and uses a wheelchair, with mother Maura at home in Draperstown in Co Derry. Photo credit: Liam McBurney/PA Wire
Ten-year-old Jack McCrystal has a neuro-muscular disorder which means he is fed through a tube and uses a wheelchair.
His parents, Maura and Ronan McCrystal from Draperstown in Co Derry, depend on the Northern Ireland Children’s Hospice for regular specialist respite care.
British Prime Minister Boris Johnson recently announced millions of pounds of extra funding for hospice services in England, but nothing was set aside for care across the Irish Sea.
Discussions are ongoing on potential additional support for the Northern Ireland hospice sector from public funds, Stormont’s health department said.
Mrs McCrystal said: “Why should we not get that over here – are our kids not as important as the kids over in England?
“It makes me so cross, why do we have to miss out on that?
“I just feel like we don’t matter because the funding has not been provided for Northern Ireland – it is not fair.”
Jack cannot walk and weak muscle tone affects his stomach muscles, so he is tube-fed for 20 hours a day.
His mother said: “That part of things is hard, while we are sitting eating a meal we would love nothing better than to see Jack eating as well. That muscle condition (Ryr1 Myopathy) does not allow him to absorb food, he has been tube-fed from when he was about an hour old, that is all he has known – he has never tasted food.”
The hospice provides a safe environment for Jack so his parents can gain some respite from the 24/7 demands of his care.
Earlier this year, an additional £25m of funding was directed to support children’s hospices in England, and more recently a further £25m was announced by the Prime Minister.
Demand for services in Northern Ireland is high and relative costs are rising. Funding includes a mixture of state provision and charitable giving.
The Stormont Executive has not sat for more than two-and-a-half years and there are no ministers to introduce any increase corresponding to England.
The McCrystals first came to the north Belfast-based hospice more than 10 years ago, when Jack was nine months old. He was born extremely ill and doctors did not give much hope of the infant surviving. His condition was undiagnosed for a decade.
Stormont’s Department of Health said financial pressures across the health and social care system are well documented.
“The DoH faces many competing demands on its already-constrained budget. We are of course very mindful of the vital services provided by hospices in Northern Ireland. Discussions are ongoing on potential additional support for the NI hospice sector from public funds,” a spokesperson said.
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