Government accused of prioritising seriously ill children in England over Northern Ireland

The parents of a sick boy who has never tasted food have accused the British Government of prioritising seriously ill children in England over those in Northern Ireland.

Jack McCrystal, 10, has a neuro-muscular disorder which means he is fed through a tube and uses a wheelchair.

His mother and father, Maura and Ronan McCrystal from Draperstown in Co Londonderry, 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 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 told PA media group: “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 (pictured) 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 caring for their son.

Earlier this year, an additional £25 million of funding was directed to support children’s hospices in England, and more recently a further £25 million 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.

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.

He was born extremely sick and doctors did not give his parents much hope of the infant surviving.

His condition was a mystery which went undiagnosed for a decade.

His mother 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.

“We became nurses ourselves overnight, having to learn how to do feeding pumps and work oxygen and saturation monitors, our house turned into a mini-hospital when Jack appeared.”

Stormont’s Department of Health said financial pressures across the health and social care system are well documented.

“The Department of Health 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.”

Caring for sick child a 24/7 commitment, says mother

Caring for a child with a serious neuro-muscular condition is a never-ending commitment, Jack McCrystal’s mother said.

They regularly travel to London for appointments with specialists and their Co Londonderry home is full of medical equipment.

Her son needs a wheelchair to get around and is fed using tubes but was full of joy and energy during a regular visit to the Northern Ireland Children’s Hospice.

Each child’s name was written outside their room in a style appropriate to youngsters.

The centre appeared less institutional and more playgroup in atmosphere, using bold and colourful decoration, while children’s books provided entertainment.

Using the hospice helped Jack’s parents realise others were going through a similar experience.

His mother, Maura McCrystal, said: “We took great comfort knowing that we were not on our own.”

The respite care means the 10-year-old’s parents can go out to have dinner together or a weekend away and spend time with his older brothers.

Jack’s mother said: “Coming here allows us to recharge our batteries.

“It is constant with Jack, it is 24/7.

“You are running to appointments. We have to go to London every 10 weeks for an appointment.”

Good specialist care while his parents are resting is critically important.

Any blockage to Jack’s feeding tubes would require a potentially life-threatening visit to an operating theatre.

His mother said: “Without this service I don’t know where we would be at.

“We depend so much on this to give us the respite that we need, without that, mentally it would be detrimental to our health and to Jack’s brothers’ health.

“It is good that we have this facility here, there is nothing else out there.

“Without this service a lot of families would be suffering.”

Copyright (c) PA Media Ltd. 2019, All Rights Reserved. Picture (c) Liam McBurney / PA Wire.