Date published: 21 October 2018 by Anna Jackson

Rainbow Trust Children’s Charity welcomes a new report which urges the government to act swiftly to improve end of life care for children. Failure to act will risk the government not meeting its own commitments.

The report, ‘End of Life Care: Strengthening Choice’, is the first ever publication of the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care. It presents the findings of an inquiry into whether families have a genuine choice about the care that they and their child can access at end of life, and what needs to change.

The inquiry found that a postcode lottery remains in terms of the quality of care that children and families can access. Concerns include access to palliative care out of hours and at weekends, and to Short Breaks, even for a few hours, which can relieve stress and exhaustion for parents and siblings.

Other challenges include a daunting move into adult services for young people with palliative care needs, and varying access to specialist consultants and ‘advance care planning’ to set out the needs and wishes of children and their families.

It calls for more funding for children’s palliative care, including for services such as Rainbow Trust who provide practical and emotional support for families in the community. It also recommends clarifying responsibilities among the health bodies and local authorities who provide different aspects of care, such as Short Breaks.

Zillah Bingley, CEO of Rainbow Trust Children’s Charity, said:

“This report shows that getting good care and support remains a postcode lottery for too many families where a child has a life threatening or terminal condition.

There is now a large body of guidance setting out what good care looks like, but without adequate health and social care funding, and enough trained professionals in all parts of England, the government’s ‘choice commitment’ will remain a theory and not a reality.

For the families that we support, change cannot come soon enough. It is vital that the government develops a funded, cross departmental children’s palliative care strategy as a matter of urgency, recognising that choices about care should not be determined by where a child lives.”

A series of oral evidence sessions, and more than 30 written submissions from organisations including Rainbow Trust, examined the experiences of young people, families, professionals, academics, and service providers. Witnesses included 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.

You can read the final report here.

You can read Rainbow Trust’s submission here.