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Urgent call to end postcode lottery of 24/7 end of life care for seriously ill children

News and comment

Today (19 May 2022), we publish our new report, which uncovers shocking findings around access to palliative care for seriously ill children in England. We are also launching a campaign #EveryDayEveryNight and asking the public to sign an open letter to the Prime Minister to give all children at the end of their life, access to 24/7 palliative care at home.

We have found a postcode lottery across England with some families of seriously ill children unable to choose end of life care at home that fully meets National Institute for Health and Care Excellence (NICE) standards. It’s vital that all families caring for a seriously ill child have choice in where their child dies.

Our report, 24/7 access to children’s palliative care in England, shows that in a majority of areas of England, families are unable to choose to access end of life care at home, 24 hours a day, seven days a week that meets the NICE standard. We have found that not only does this care depend on where families live, but what time of day and night they need it. The 24/7 standard is not being met in nearly four fifths (79%) of integrated care system (ICS) areas. It is only being met fully in three ICS areas (7%). It is being partially met in six (14%) ICS areas.

One of the causes is the patchy way in which this care is planned and funded by local NHS organisations: NHS clinical commissioning groups (CCGs) in just under a fifth (19%) of ICS areas have a specification which says that children approaching the end of life and being cared for at home should have 24-hour access to both children’s nursing care and advice from a consultant in children’s palliative care. The standard is partially commissioned by CCGs in just over a fifth (21%) of ICS areas – and not at all in nearly half (45%) of ICS areas.

We have estimated that there is a funding gap of £2.26million in training for specialist children’s palliative care consultants – in addition to other funding gaps in educating and training other professionals, including children’s nurses. There is also a £301million gap in NHS spending on children’s palliative care.

Use the maps from the report to find out what 24/7 children’s end of life care is like in your area.

Hear from families

Getting the right support can make a lifetime of difference. That’s what a family from Warwickshire experienced when their little boy George, who had an extremely rare condition called Batten Disease variant CLN8, was approaching the end of his life. George’s parents explain in a heart warming video that they wanted him to receive his care within the comfort of their home and thankfully they got the support they needed. Worryingly, this inquiry discovered many families are not, and this needs to change urgently.

George died in June 2019, two weeks before his sixth birthday. “We had no idea how much time we would have with George and the final weeks of his life were traumatic” says George’s mum Claire. “But with our local NHS children’s palliative care team’s support, we were able to make choices and to control his symptoms. They were at the house when we needed them, day or night, and were at the end of the phone. George was able to die at home, and they gave me time to be with him, which was precious.”

Claire said: “I am urging everyone who can to please sign my open letter to make sure every seriously ill child in England can choose to access end of life care at home, if that is what’s right for them. Our local community children’s palliative care team couldn’t save George’s life. But they did make a lifetime of difference.”

Andy Fletcher, CEO of Together for Short Lives added: “Having access to specialist children’s palliative care, when and where they need it, must be afforded to every family caring for a seriously ill child. The number of children with life-limiting conditions has trebled over the last twenty years. If ministers do not act now more and more of these children and their families will be denied choice and control over their palliative care, especially at end of life. The NHS will also be unable to meet its legal duty to commission palliative care for children and young people. It’s shocking that many families facing the heartbreak of their child dying young have little choice in their child’s end of life.”

We are joining George’s mum Claire in asking the public to sign the open letter to the Prime Minister to end the postcode lottery.


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