Date published: 13 April 2016 by Jessica Homer

Families caring for a life threatened or terminally ill child feel overwhelmed when they leave hospital and feel as though they lack professional emotional support, according to an audit unveiled today, Wednesday 13 April, by children’s social palliative care experts Rainbow Trust Children’s Charity.

The audit, conducted amongst Rainbow Trust’s network of expert Family Support Workers, reveals that families are not being offered enough support at home and are left feeling overwhelmed (78%), lonely (30%) and abandoned (25%), as they leave hospital and struggle to cope with the challenges of caring for a life threatened or terminally ill child at home.

The audit also highlighted that 50% of families felt little or no emphasis was placed on their emotional wellbeing by staff when they were being discharged from hospital despite 75% of families feeling that they lacked emotional support and 64% required it at least once a week.

The audit is revealed as the charity launches a national campaign to highlight the importance of social palliative care and to help fund more Family Support Workers to deliver the vital care families are calling for. Watch a short film about the Campaign entitled ‘A Day with Amelia’.

Anne Harris, Rainbow Trust’s Director of Care said,

“We know that the standard of medical care in the UK is very high but what we are finding is that families feel overwhelmingly alone when they walk out of the hospital door. Social palliative care covers the support required for children with palliative care needs outside of the medical care provided. Elements of care such as bereavement support, emotional help and support with other siblings. We are calling for more access to social palliative care to help the whole family as they face their worst nightmare.

“Our Campaign is asking the public to help us fund more of our vital Family Support Workers so that families do not have to cope alone. Every day is unthinkably tough when you have a dying child in the family. Rainbow Trust’s Family Support Workers make life easier for the whole family by doing 1,001 small things to help families in extreme and uncertain situations.”

To find out more about Sponsor a Family Support Worker Campaign and the importance of social palliative care visit rainbowtrust.org.uk/amelia