TOGETHER for Short Lives, the UK charity for seriously ill children, is 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. This follows shocking findings by the charity into palliative care for seriously ill children in England.
Together for Short Lives has uncovered 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. The charity says it’s vital that all families caring for a seriously ill child have a choice in where their child dies.
The 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. The charity has 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.
Together for Short Lives has 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.
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 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.
George’s mum Claire said:
“We had no idea how much time we would have with George and the final weeks of his life were traumatic, but with our local NHS children’s palliative care team’s support, we were able to make choices and 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.”
George’s mum Claire is urging the public to sign her open letter to the Prime Minister to end the postcode lottery.
“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, said:
“These families are supported by some brilliant children’s palliative care services and professionals, in hospitals, in children’s hospices and at home. But many of these services are stretched to breaking point, neither commissioned nor consistently funded by NHS and local authorities.
“The government has taken welcome steps in recent years, including its support for the legal duty on the NHS to commission palliative care for both children and adults, which is part of the Health and Care Act. It has provided NHS match funding for children’s palliative care and supported children’s hospices by increasing the NHS grant and providing emergency COVID funding. As announced in the Autumn Budget and Spending Review 2021, it is also increasing NHS funding by a total of £10.8billion in the period to 2024/25. Ministers now need to make sure the NHS spends some of this additional money on children’s palliative care services so that seriously ill children can choose to receive end of life care at home in a way which is consistent with NICE standards.”
Hearing the news that your child has a life-limiting condition and is going to die young is a parent’s worst nightmare. These children often have very complex and unpredictable needs. Families have to provide highly-skilled, clinical care to their child at home, throughout the day and night, all the while coming to terms with the knowledge that their child will die before them. They do not have time to wait for this postcode lottery to end. To build back better and fairer for all from the COVID-19 pandemic, the government must bring about sustainable, 24/7 children’s palliative care for seriously ill children, for whom time is short.
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:
“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.
“Not only is this the right thing to do for families, but not acting now means the NHS will also waste money unnecessarily. Valuable non-cash savings could be generated for the NHS, by fewer unplanned, emergency admissions to hospital among seriously ill children. A poor experience of a child’s end of life will stay with a family forever. That’s why the government needs to make sure the NHS changes this cruel postcode lottery of care as a matter of urgency, helping families to make the most of every precious moment with their child.”