NI Children's Hospice: Families speak out at reduction in bed capacity

Families who use the Northern Ireland Children's Hospice have called for MLAs to intervene in a planned reduction in bed capacity.

The hospice is a local charity that provides specialist palliative care for more than 350 babies, children, and their families each year.

According to the organisation, it is consulting with families and staff who may be impacted.

Acting director Grace Stewart said the decision is due to funding cuts.

Ms Stewart said she profoundly regrets the reduction which was led by the need to ensure "the long-term sustainability" of the service.

"Given the loss of government funding for one of our beds, our intention is to run six beds Monday to Friday and three beds Saturday and Sunday: this is a change from our seven-beds, seven-nights model," she said.

"Despite these challenges, our unwavering commitment to supporting children and their families remains."

The Department of Health said officials would "look urgently at the issues raised, to engage with the Hospice and to provide a clear evidence base so the Minister can determine the best way forward before the end of the week".

NI Children's Hospice currently provides care for more than 350 children and their families each year.

• NI Hospice awarded freedom of borough

This is the only service of its kind in Northern Ireland and requires more than £20m annually to provide the service.

According to the charity, the majority of its funding comes from the "generosity and kindness of the local community."

Matthew Rooney's child receives respite care at the hospice and he said his family would be "lost" without it.

Mr Rooney said the service was vital to hundreds of families and the money had to be found.

"A lot of families I have spoken to have made plans for end-of-life care for their children," he said.

"They plan to have their children spend their last days here. We don't want our children to end up dying in a hospital."

'Magical place'

The father of Dáithí Mac Gabhann, who led a high profile campaign to change Northern Ireland's organ donation law, has described the hospice as a "magical place".

Dáithí's father Máirtín wrote to MLA's in which he said he was "utterly heartbroken" at the news

Máirtín Mac Gabhann has written to MLAs calling for them to prevent the reduction in beds and said he was "utterly devastated by the news".

"Dáithí uses the hospice four or times a year and we would be lost without it," he continued. "My thoughts are with the families that depend on the Northern Ireland Children's Hospice daily.

Mr Mac Gabhann told BBC News NI's Evening Extra: "People are generally afraid of the word hospice when I mention that Dáithí gets care from the hospice.

"The Northern Ireland Children's Hospice is such a magical place and I like to say to people that 'the hospice and the people who work there make the impossible possible'."

'A welcomed break'

Claire Lindsay, from Londonderry, whose 16-year-old son is currently in respite at the children's hospice, said he needs help with most daily tasks.

She said she gets little sleep and "I think that's why the break from the hospice is so welcomed from myself".

"People say you can't pour from an empty cup and all that, even for you mental health.

"But when it comes to having a child that's in your care, there's a very very small remit to be able to take time out for yourself."

'Vital service' needs urgent help

Sinn Féin assembly member Liz Kimmins, who was appointed chairperson of Stormont's health committee on Tuesday, said the hospice's announcement was a "worrying development".

She urged Health Minister Robin Swann to meet hospice managers to find ways for the department to support the service.

"We must do all that we can to protect vital services for families and children, and to ensure we see no reduction in capacity," she said.

Democratic Unionist Party MP Carla Lockhart said she has written to Mr Swann to urge immediate action to alleviate financial pressures on NI Children's Hospice services.

"These services are essential for families who face the very difficult pathway of palliative care for their child," Ms Lockhart said.

"They must receive all the support that is possible as their little one faces terminal illness."