This morning, Together for Short Lives and bereaved parents Claire, Natalie and Kev officially handed over an open letter to 10 Downing Street, urging the government to finally end the postcode lottery of 24/7 end of life care for seriously ill children.
- Bereaved Mum Claire wrote an open letter which was signed by over 1,900 concerned campaigners, which she will hand over to 10 Downing Street today (22 July 2022). Claire’s son George died in in June 2019, two weeks before his sixth birthday.
- She is calling on the government to ensure that all seriously ill children have access to 24/7 care, for whom time is short
- Our report, 24/7 access to children’s palliative care in England, shows that in the 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
In May we published a new report which uncovered shocking findings around access to palliative care for seriously ill children in England. The charity found that not only does this care depend on where families live, but what time of day and night they need it.
The report found that at home end of life care for seriously ill children and their families, provided by community nurses with advice from specialist consultants, is available in just over half of local authority areas in England during normal working hours. It is met in less than a fifth of areas 24/7.
We 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, and that’s why George’s mum Claire has backed this campaign to ensure every family can access the support they did:
“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. I am really proud to travel to Downing Street to drop off this important letter to the government.”
I am representing every family with a seriously ill child who needs palliative care.”Claire, mum to George
Andy Fletcher, CEO of Together for Short Lives added: “I am delighted to be joining Claire as she hands in her open letter to 10 Downing Street. Every family caring for a seriously ill child should have access to specialist children’s palliative care, when and where they need it. It’s shocking that many families facing the heartbreak of their child dying young have little choice in their child’s end of life. The NHS now has a legal duty to commission palliative care for children and young people. 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.”