Is it just me…?

Editor in Chief, Robert Chamberlain looks at a new report that highlights the postcode lottery of palliative care for children with life-limiting health conditions.

Having recently become involved with the Ambitions Partnership for Palliative and End of Life Care, my eyes are being opened to the many challenges of providing palliative care.
One issue in particular, of which I was unaware, is the inconsistent level of care and support provided to children with terminal illness (and their parents).

A new report produced by Together for Short Lives describes what clinical commissioning groups (CCGs) and local authorities do to plan, fund and monitor care for the 40,000-plus children with life-limiting and life-threatening conditions in England.

The research, collected during 2017, is based upon freedom of information requests sent to every CCG and upper-tier local authority in England. In all, 199 (94%) CCGs and 126 (83%) local authorities provided responses.

The findings highlight real concerns over the availability of care services, especially at night times and weekends.

Worrying findings

  • Describing the commissioning of palliative care for children as ‘patchy and inconsistent’, the report, Commissioning Children’s Palliative Care in England: 2017 Edition uncovers some alarming statistics:
  • Most commissioners are failing to assess the numbers and needs of children with life-limiting and life-threatening conditions. Just 43% of CCGs and 23% of local authorities assess the number and needs of children who require palliative care. However, only 4% of CCGs and 2% of local authorities could state how many children with these conditions are in their area.
  • Almost half (46%) of CCGs are failing to implement the Government’s end of life care choice commitment and, disturbingly, have no plans to do so. Just over a third (35%) responded that they are implementing this guidance, while a further 19% stated that their plans to do so are in development.
  • Most CCGs have not implemented the new clinical guidance for children who need palliative care. Fewer than a third (31%) of CCGs stated that they are currently implementing the new National Institute for Health and Care Excellence guideline on End of life care for infants, children and young people with life-limiting conditions: planning and management. A further 27% stated that their plans to implement this guidance are ‘in development’. Of concern, only 29% of CCGs commission services that can provide a paediatric palliative care multidisciplinary team that meets the requirements of the guidance.
  • There is a major discrepancy between services commissioned between 8am and 6:30pm, Monday to Friday and services commissioned to provide care out of hours. Just 67% of CCGs commission community children’s nursing teams to provide care out of hours. Although 64% commission services to provide community paediatricians, only 29% commission them to provide out of hours care.
  • More than one in five (21%) local authorities are failing to meet their legal duty to commission short breaks for children with life-limiting and life-threatening conditions.
  • CCGs and local authorities are failing to fund voluntary sector children’s palliative care organisations, including children’s hospices. 22% of CCGs and 72% of local authorities do not commission these services.

Time to act

Listening to the harrowing accounts of parents who have to rely upon A&E departments ’out of hours’ is heartbreaking. How can it be acceptable to leave such vulnerable children without round-the-clock support?

Guidelines are simply not sufficient and are clearly being ignored by the majority of CCGs and local authorities. These important standards must become mandatory and steps taken to ensure their implementation across the country.

The sad irony of the current situation is that there is an economic argument for addressing the shortfalls. Speaking on Radio 5, Barbara Gelb OBE, Chief Executive of Together for Short Lives explained that a £14m investment to improve palliative care for children would result in a saving of £35m for the NHS. What can be the argument for Government inaction?

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