Of the 2,020 individuals surveyed by NfP Synergy, 79% recognised that children’s hospices care for those with terminal illnesses.
However, only 51% thought that children’s hospices care for individuals with an irreversible condition and only 35% recognised they care for those with a progressive condition without a cure.
“We often encounter a perception that children’s hospices are focused solely on end of life and while this is a very important part of our work, we undertake a lot of work with children and families often well before this stage,” said chief executive of Acorns, David Strudley.
Strudley is concerned that this misunderstanding could mean that children and families are missing out on support:
“Our key concern from the survey findings is the public don’t fully understand exactly who children’s hospices care for. The potential knock-on effect is that children and families in genuine need don’t realise hospices can help them and aren’t accessing support which could make a huge difference,” Strudley explained.
While this was a local survey, it is not just a local problem.
Barbara Gelb OBE, CEO of national charity Together for Short Lives, commented: “These survey findings are revealing and show a real lack of understanding that children’s palliative care is about so much more than end of life care.
“Children’s hospice services provide a lifeline to families; raising public awareness of the wide range of support available is vital to ensuring that families get the care and support they need.
“The findings also reflect a broader concern that Together for Short Lives has about the need for commissioners and policy makers to recognise and fully understand the breadth of support these services provide for children throughout the journey of the illness which can be over many years. Funding of children’s palliative care services needs to better reflect this.”