Date published: 20 March 2025 by Sophie Wichman
Lorna Fraser, Professor of Palliative Care and Child Health, and National Institute for Health and Care Research Professor, tells us about the importance of the social palliative care which Rainbow Trust provides for seriously ill children and their families.
"Children with life-limiting conditions should have the same rights as every other child: the right to live, the right to education and the right to participate and socialise.
In order to meet these basic needs, social palliative care support is required and that is where charities such as Rainbow Trust come in. Rainbow Trust helps fill the gaps where statutory services are not there or are not able to.
When I first became aware of Rainbow Trust’s services, I was very pleased to see that their emotional and practical support was being provided for seriously ill children and their families, especially at home, and that the social care aspects of caring for a child with a life threatening illness were both understood and focused on.
Families caring for children with a serious or life-threatening illness have to cope with the cumulative effects of complex childhood illness, such as the impact on the family’s daily life, having to attend hospital appointments, long stays in hospital, being unable to do the school run and, sometimes, having to stop work. There is also a higher-than-expected number of children with life-limiting conditions living in areas of higher deprivation.
Due to advances in medicine, seriously ill children’s needs have become more complex over the years; with government funding for social care not being protected and sustained, care has had to be largely clinically focused. Additionally, the state statutory social care system is designed for older adults and therefore is a system which is very difficult for parents of seriously ill children to navigate.
From a parent’s point of view, they should not really need to know where the funding comes from. They should just know that their child’s needs will be met.
Rainbow Trust’s support is really important because it responds and reacts to the needs of families caring for a seriously ill child in a timely manner and in a timeframe that suits them, tailoring to each individual family, which many medical services cannot offer.
There are times when families prefer to have the social care they need for their seriously ill child at home or in the community and Rainbow Trust’s support plays an important part in that jigsaw.
Rainbow Trust gives crucial support to families whenever they need it during incredibly difficult times.
They continue to demonstrate the critical role of social palliative care for families, alongside the clinical care provided by healthcare services and hospices.”
