A shocking gap in services for some of the most vulnerable children in Northern Ireland means lives are being put at risk, it has been claimed.
Parents of children with life-limiting conditions are so stretched they are missing important medical appointments themselves — with devastating consequences for some.
The Northern Ireland Children’s Hospice has called for the Government to improve funding to support parents in such a position.
It comes as the Belfast Telegraph launches a week -long series, Inside The Children’s Hospice, highlighting the incredible work being done by the charity.
Every day this week we will take you inside the Newtownabbey building and reveal inspirational and heart-wrenching stories.
The Children’s Hospice is the only service of its type in Northern Ireland caring for children with very complex needs who require 24-hour specialist care.
There are more than 600 life-limited children and young people and their families living in Northern Ireland who need care that only the hospice can provide.Despite this, Government provides only a fraction of the money required to run this service. There is also no strategy for end-of-life care for children here.
Tina McCrossan, director of children’s services at the hospice, said: “I think this shows that the Government doesn’t take this issue seriously enough. It costs £3m a year to run the hospice and we get £500,000 from the Government, the rest is made up from charitable donations, legacies and fundraising events.
“We have 10 beds in the hospice but we can only afford to use seven. We need an additional £1m to be able to run the service fully.
“We are able to offer families nine nights a year. If we could open those other beds we could offer 12 or even 15 nights. Most of the children have extremely complex needs. Their parents care for them 24 hours a day, seven days a week, there is no break.’’
The Northern Ireland Children’s Hospice works hard to ensure families can access the care and support they need. As well as working with families in their own homes, it also offers short planned breaks at the Newtownabbey facility, including end-of-life care.