A national children’s palliative care charity has called on the UK Government to reform the way care for children with life-limiting conditions is funded, warning that the current regime is unsustainable.
Families are feeling “abandoned” and “overwhelmed” as demand for children’s palliative care rises, and deficits increase for providers, Together for Short Lives said in its new report, titled Built to Last? The State of Children’s Palliative Care in 2025.
“Our system is not built to last, and it is continuing to fail too many seriously ill children”
Nick Carroll
In the report, the charity laid out that despite improvements in funding for children’s palliative care in the last year, with funding promises from both the UK Government and some devolved administrations, “major gaps” remain, in particular in 24/7 end-of-life care at home.
These services, which are often led by nurses, are not available in “too many areas”, the report said.
According to Together for Short Lives, for there to be safe staffing – according to the Royal College of Nursing’s standards – there should be 4,960 community children’s nurses in England. There are, the report said, only 973.
“Similar shortages”, the report said, were also being faced in the devolved nations.
A survey of families who have encountered children’s palliative care services formed part of the report.
Of those who responded to Together for Short Lives’ survey, only 50% said they felt well supported by services, with 9% saying they did not feel supported at all.
The report highlighted “significant variation” in the way children’s palliative care is planned, funded and administered from area to area in the UK, with a particularly stark difference in the availability of 24/7 services.
There had been a 33% increase in the past year of local NHS organisations commissioning these services formally, but the report said this still meant only around 19% of English integrated care boards (ICBs) currently do it.
The “key barriers”, Together for Short Lives said, to further improving services were workforce availability, funding, leadership and accountability.
Following the publication of the report, Together for Short Lives, alongside a group of children’s hospices, presented its findings to MPs in an event held by the all-party parliamentary group for children who need palliative care.
Among the hospices represented at this event was children’s palliative care provider Derian House. Chief executive Karen Edwards said hospices were “struggling”, and said they should not have to rely on the charity of their local communities to fund essential care.
Karen Edwards
She said: “Hospices play a vital part in our healthcare system, but this care is at risk. Increasing demand, long-term underinvestment and rising costs, mean many hospices are struggling to maintain their services.”
The Together for Short Lives report issued a series of recommendations for UK governments, including a demand on central government to close a £310m funding gap in England for children’s palliative care as part of its upcoming NHS 10-year plan.
It also called on the UK Government to increase funding for the education and training of specialist healthcare professionals, including community children’s nurses, and for the abolition of tuition fees for student nurses in England.
Further, it demanded that the government should hold ICBs and other local organisations to account on the provision of children’s palliative care, and for an overall transition into a “sustainable funding system” for the sector.
Further, all governments of the UK were told to use the existing workforce “more equitably”, and to train more specialist professionals, including nurses and medics.
Together for Short Lives chief executive Nick Carroll, in his foreword to the report, spoke further about the postcode lottery families are facing due to uneven provision.
“Every child deserves the chance to live a full life, supported by care that enables them and their families to thrive,” said Mr Carroll.
“Children’s palliative care provides this essential support to children with life-limiting and life-threatening conditions and their families —helping them spend precious time together, creating memories, and accessing the care they need, when and where they need it.”
He added: “Our system is not built to last, and it is continuing to fail too many seriously ill children.
“Across the UK, workforce shortages, funding shortfalls and a lack of leadership and accountability have created an unacceptable postcode lottery in access to children’s palliative care.
“Precious NHS resources are being wasted as families have to endure unnecessary hospital admissions, delayed discharges and a lack of choice and control.”
Nursing Times contacted the UK Government for comment.
