Hospices are struggling because they have to rely on public goodwill for donations with less than one per cent of NHS funds available to them.
There isn’t enough money or staff for all the care needed for seriously ill youngsters, Noah’s Ark Children’s Hospice points out.
The Barnet hospice is backing this year’s national ‘Children’s Hospice Week’ campaigning to show the importance of palliative care for life-threatening and limiting conditions.
Noah’s Ark provides care for 350 children every year — but has to rely on donations to raise £6 million every year.
Families are referred to the hospice from the London boroughs of Barnet, Enfield, Haringey, Camden and Islington as well as neighbouring Hertsmere.
They include Jana Catlosova and Robert Holland in Enfield who have been supported since 2020 with their two sons, seven-year-old Freddie and little Samuel, five.
Samuel was diagnosed at birth with an abnormal chromosome condition that can cause face, brain, heart and growth deficiency. This leads to hearing loss, low muscle tone, eating difficulties and hypoglycaemia.
But he is now improving and is engaging more at school, thanks to the palliative care he gets at Noah’s Ark such as respite stays, music and hydro treatment and occupational therapies. The family also have their own ‘family link’ home visitor.
“We want to be there for more families like Jana and Robert,” Noah’s Ark chief executive Sophie Andrews said.
“But we need sustainable, funding that reflects our role in the community and to relieve pressure on NHS social care.”
Many families aren’t getting the care their sick children need because of where they live, a report by the charity ‘Together for Short Lives’ has found.
The children’s palliative care sector “isn’t built to last” while access varies from area to area.
The charity lobbies the government to influence national policy for children’s palliative care.
It “shouldn’t depend on their postcode”, the charity insists.
Their report has uncovered a £310m funding gap for children’s palliative care — just 0.6 per cent of the NHS budget.
