#FollowTheChild campaign calls for better end of life care

Rainbow Trust welcomes the campaign to #FollowTheChild which urges action to ensure that all seriously ill children have the best possible end of life care. The campaign is calling for all families to have access to good end of life care, wherever they live.

#FollowTheChild has been launched to coincide with the launch of a book of the same name, in which mother Sacha Langton-Gilks tells the story of her son David, who died of a brain tumour aged 16. Sacha explains that she is hugely grateful that her son died peacefully at home, but feels passionately that this should not have been down to good luck. She is now campaigning to ensure that all families have the same choices for end of life care if their child is dying.

Recent research conducted by Together For Short Lives showed that access to end of life care can vary greatly according to a child’s postcode, with 46 per cent of local NHS planning and funding bodies (Clinical Commissioning Groups or CCGs) saying they do not implement the government’s end of life care choice commitment for children and young people, and have no plans to do so. This directly impacts of the choices available to families.

Anne Harris, Rainbow Trust Director of Care, said:

‘Listening to what children and their families want is incredibly important when planning and delivering end of life care. Every family wants the best possible care for their child in the precious time that they have together. But parents can find it much harder to manage their feelings of grief and loss when their choices have been limited by a lack out of hours medical care, or the opportunity for their child to die at home was not available due to a lack of resources, for instance. Rainbow Trust supports the call to #FollowTheChild and additionally urges the government to develop a palliative care strategy which also recognises the value of emotional and practical support for families.’

#FollowTheChild is being promoted by the Teenage Cancer Trust, Together for Short Lives, the Brain Tumour Charity, CLIC Sargent, Marie Curie and the National Gold Standards Framework (GSF) Centre in End of Life Care. Among the campaign’s calls are for a national children’s palliative care strategy to be developed by government, and for children’s hospices to receive the same level of funding as adult hospices.