Children with complex medical conditions struggle to get out of hours and weekend palliative care

It is estimated there are 40,000 children living with life-limiting and life-threatening conditions in England alone.

A new report by the charity Together for Short Lives describes the commissioning of children’s palliative care as ‘patchy and inconsistent’.

Holly Smallman is one of those affected. She can have up to up to 40 seizures a day, each one potentially dangerous. Holly has a series of complex, life-limiting health conditions. Her cerebral palsy, chronic lung disease and epilepsy mean she needs 24-hour care at her home in Liverpool. This is largely provided by her family with the support of community children’s nurses and community paediatricians who work Monday to Friday 9 – 5 pm but are not available in the evenings or weekends.

Together for Short Lives submitted Freedom of Information requests to every Clinical Commissioning Group (CCG) in England asking what services they commission for children who need palliative care. In all, 199 (94%) CCGs provided data. It revealed that, while nearly all CCGs commission community children’s nursing teams, only two-thirds (67%) could say that they commission them to provide care out-of-hours and at weekends. If this support isn’t in place, families say they have to call an ambulance or go to A&E.

Holly’s mother explains: “We know how much it disrupts Holly to take her into hospital because she’s so comfortable at home. Also, because she is so immunocompromised, going into a hospital environment potentially brings more risk to her.”

Liverpool CCG said it couldn’t comment on individual cases, but that it did offer out-of-hours access to very high quality children’s palliative care. Services are provided by Alder Hey Children’s NHS Foundation Trust. Alder Hey said: “The community children’s nursing team is commissioned to provide an extended hours seven day service, but not 24/7. The community paediatricians do not provide a 24/7 service except for safeguarding.”

Following a review in 2015 into end-of-life care the government said that, where possible, children should be cared for at home with the support of community services. But this new research shows that only a third of CCGs in England could say they are implementing this commitment.

Barbara Gelb, chief executive of Together for Short Lives, said the government should undertake a review of children’s palliative care as a matter of urgency: “It is not a nine-to-five job. A child’s condition can deteriorate very quickly, and being able to call on a community service in the middle of the night is crucial to help families cope at these times. ”

A spokesperson for NHS Clinical Commissioners, the membership organisation for CCGs, said it was encouraged that the report showed improvement in some aspects but acknowledged there was more work to be done”, adding “Commissioners are having to make really difficult decisions on a daily basis about how to use the finite funding they have been allocated”.

The Department of Health has said it will look at the report’s recommendations closely. A spokesperson said the NHS is expected to provide “a personalised and dignified service” that takes account of families’ wishes. They added “We recently published the government’s end of life care commitment so that by 2020 there will be significant progress in patient choice, increased personalisation of care and improved quality and availability of services”.

Amanda Cavanagh, a medical negligence specialist at Ashtons Legal, says: “Unfortunately, as with most things, it all boils down to money. if the money is not in the pot, then the recommended provision will suffer. However, in these particular cases, it would seem that to care for these very poorly children at home would be less expensive and less dangerous for them. The child’s home is usually set up with all the equipment to support a seriously ill child and it makes sense that it would be cheaper to provide necessary clinical care to them at home, rather than take them and all their equipment to hospital”.