The parents of a sick boy with a rare disorder have accused the Government of prioritising seriously ill children in England over those in Northern Ireland.
Jack McCrystal, 10, has a neuro-muscular condition and is fed through a tube and uses a wheelchair.
His mother and father, Maura and Ronan from Draperstown, Co Derry , depend upon the Northern Ireland Children’s Hospice to provide regular specialist respite care.
Prime Minister Boris Johnson recently announced millions of pounds of extra funding for hospice services in England but nothing was set aside for people here.
Discussions are ongoing on potential additional support for the Northern Ireland hospice sector from public funds, Stormont’s health department said.
Maura 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.
Maura 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 get respite from the 24/7 demands of caring for their son.
Earlier this year £25million of funding was directed to support children’s hospices in England and more recently a further £25million was announced by the PM.
Demand for services in Northern Ireland is high and relative costs are rising.
Funding includes a mixture of State provision and charitable donations.
Stormont 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.
His condition was a mystery which went undiagnosed for a decade.
Maura said: “We did not know what the future held for us or for Jack. We did not know how long we were going to have him, if it was just days or weeks, the doctors could not tell us anything.”
A Department of Health spokesman said financial pressures across the health and social care system are well documented.
He added: “Discussions are ongoing on potential additional support for the Northern Ireland hospice sector from public funds.”
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