Date published: 19 March 2018 by Anna Jackson
Rainbow Trust Children’s Charity is pleased to see the progress of an inquiry into end of life care for children which has been hearing from families and professionals during February and March. The inquiry, held by the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, is exploring the extent to which the government is meeting its end of life care ‘choice commitment’ for children and young people.
Building on evidence in written submissions, a series of oral evidence sessions has been hearing the experiences of young people, families, professionals, academics, and service providers. Among the witnesses have been Lucy Watts MBE, who lives with a life limiting condition, Doug Morris, whose family receives Rainbow Trust support, bereaved mother Steph Nimmo, and senior professionals from hospices and paediatric hospitals.
Topics covered have included the experience of families and professionals in holding sensitive conversations about planning for end of life care, the significant shortfall in training and recruiting community nursing staff and paediatric consultant posts, and the underfunding of children’s social care support and respite services.
Anne Harris, Rainbow Trust Director of Care, said:
‘We’re hugely grateful to the Co-Chairs of the APPG, Dr Caroline Johnson MP and Catherine McKinnell MP, for steering this inquiry to improve the care that families with seriously ill children can expect to receive.
The inquiry is shining a vital light on the factors that determine whether families have a genuine choice about the care that they and their child can access at end of life. There is now a large body of guidance setting out what good care looks like, but without sufficient prioritisation, combined with adequate health and social care funding, and sufficient trained professionals in all parts of England, the government’s ‘choice commitment’ will remain a theory and not a reality.’
Rainbow Trust’s Policy & Campaigns Manager is part of an expert group which is advising the APPG during the inquiry. The APPG will make specific recommendations to government ministers on how to improve care in a report due out in autumn 2018. You can read Rainbow Trust’s submission here.