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Together for Short Lives has discovered a postcode lottery across England with some families of seriously ill children unable to choose home-based end-of-life care that fully meets National Institute for Health and Care Excellence (NICE) standards ). The charity says it is essential that all families caring for a seriously ill child have a choice of where their child dies.

The report, 24/7 Access to Hospice Care for Children in England, shows that in the majority of parts of England, families cannot choose to access end-of-life care at home, 24 hours a day, seven days a week, which meet NICE standards. The charity has found that not only does this care depend on where families live, but also what time of day and night they need it. The 24/7 standard is not met in nearly four-fifths (79%) of Integrated Care System (ICS) areas. It is only fully achieved in three domains of the ICS (7%). It is partially achieved in six (14%) ICS domains.

One cause is the uneven way 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 that states that children nearing the end of life and in need of home care should have 24-hour access to both child nursing care and the advice of a child palliative care consultant. The standard is partially driven by GCCs in just over a fifth (21%) of SCI areas – and not at all in nearly half (45%) of SCI areas.

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

Getting the right support can make all the difference. That’s what a family in Warwickshire experienced when their baby boy George, who had an extremely rare condition called CLN8 variant of Batten’s disease, neared the end of his life. George’s parents wanted him to receive his care in the comfort of their own home and luckily they got the support they needed. Worryingly, this survey found that many families are not, and this urgently needs to change.

George died in June 2019, two weeks before his sixth birthday.

Claire, George’s mother, said:

“We had no idea how much time we would be spending with George and the last weeks of his life were traumatic, but with the support of our local NHS children’s palliative care team, we were able to make choices and control his symptoms. They were home when we needed them, day or night, and were just a phone call away. George was able to die at home and they gave me time to be with him, which was precious.

Claire said:

“I urge everyone who can to sign my open letter to ensure that every critically ill child in England can choose to access end-of-life care at home if that is what suits them. The children’s palliative care team in our local community could not save George’s life. But they made a lifetime of difference.

Andy Fletcher, CEO of Together for Short Lives, said:

“These families are supported by brilliant children’s palliative care services and professionals, in hospitals, children’s homes and at home. But many of these services are pushed to the breaking point, neither commissioned nor cohesively funded by the NHS and local authorities.

“The government has taken some welcome steps in recent years, including its support for the legal obligation of the NHS to order palliative care for children and adults, which is part of the Health and Care Act. It has provided NHS matching funding for palliative care for children and supported children’s hospices by increasing the NHS grant and providing emergency COVID funding. As announced in the Autumn 2021 Budget and Expenditure Review, it also increases funding for the NHS by a total of £10.8bn until 2024/25. Ministers must now ensure that the NHS spends some of this extra money on palliative care services for children so that seriously ill children can choose to receive end-of-life care at home in a way that meets NICE standards. .

Learning that your child has a fatal disease and is going to die young is a parent’s worst nightmare. These children often have very complex and unpredictable needs. Families must provide highly skilled clinical care for their child at home, day and night, while accepting the knowledge that their child will die before them. They don’t have time to wait for this postcode lottery to end. To build back better and fairer for all after the COVID-19 pandemic, the government must establish sustainable, 24/7 palliative care for critically ill children, for whom time is of the essence.

You can help these vulnerable children by signing Claire’s open letter to the Prime Minister. You can also find out about the situation in your area and get in touch with your local MPs to ask them to take action.

Andy Fletcher, CEO of Together for Short Lives added:

“Access to specialist palliative care for children, when and where they need it, must be available to every family caring for a critically ill child. The number of children with life-limiting illnesses has tripled over the past twenty years. If ministers do not act now, more and more of these children and their families will be denied choice and control of their palliative care, especially at the end of life. The NHS will also be unable to fulfill its legal obligation to commission palliative care for children and young people. It is shocking that many families faced with the grief of their child dying young have little choice about the end of their child’s life.

“Not only is it the right thing to do for families, but failing to act now means the NHS will also waste money unnecessarily. Valuable non-monetary savings could be generated for the NHS, by reducing the number of unplanned emergency admissions to hospital in seriously ill children. A bad end-of-life experience for a child will stay with a family forever. This is why the Government must ensure the NHS urgently changes this cruel postcode care lottery, helping families make the most of every precious moment with their child.