Too many seriously ill children and their families are still unable to access decent end of life care, with a “cruel postcode lottery” meaning many cannot decide where they die, charities have warned.
Having to plan and prepare for a child’s end of life care and death is the “most stressful, heart-breaking, lonely and isolating thing that any parent can face”, they argued.
But despite a Government commitment to end of life choice, access to good end of life care support, planning and care based on choice is not available to all families, the coalition of charities, which includes the Teenage Cancer Trust, said.
They said 5,000 babies, children and young people in the UK under the age of 19 die every year, a significant number of whom are children with life-limiting or life-threatening conditions who need end of life care.
But they said there are too few doctors and nurses with the skills and knowledge needed, while children’s hospices need more funding.
Almost half (46%) of local NHS planning and funding organisations in England are failing to implement the Government’s end of life care choice commitment for children and young people and have no plans to do so.
And just two thirds (67%) of clinical commissioning groups (CCGs) in England plan and fund community children’s nursing teams to provide care out of hours and at weekends, the coalition, which also includes Together for Short Lives, the Brain Tumour Charity, CLIC Sargent, Marie Curie and the National Gold Standards Framework (GSF) Centre in End of Life Care, said.
Sacha Langton-Gilks, whose teenage son David, known as DD, died of cancer at the age of 16, said that when parents are told their child has an incurable diagnosis and will need end of life care, they should be provided with a palliative specialist to offer them advice at the meeting.
“It must start at the very beginning,” she said.
“It was down to luck that my son, DD, had a calm and peaceful death at home, as he wished, and yet I consider that good death the greatest achievement of my life and my biggest consolation in grief.
“That luck should dictate whether you are able to follow your child’s wishes and manage a good death for them is outrageous.
“Maternity networks do not run without consultant obstetricians, midwives and health visitors, and children and young people’s palliative and end of life care cannot run without paediatric palliative consultants and community children’s nurses.
“There is no rehearsal for either birth or death – there’s only one chance to get it right.”
Find out more about our collaboration with 6 national charities & families with lived experiences to help children and young people access the end of life care they need and deserve: https://t.co/GKIqYJG9mI #FollowTheChild 🔄 pic.twitter.com/yD4aW03WDY— Together4ShortLives (@Tog4ShortLives) January 26, 2018
The coalition wants the Government to commit to developing a national children’s palliative care strategy for England and to increase the Children’s Hospice Grant to £25 million per year and provide parity of funding between children’s and adult hospices, as in Scotland.
Barbara Gelb, chief executive of Together for Short Lives, said: “It is heart-breaking for any parent to come to terms with the fact that their child is likely to die soon.
“Yet even in these most desperate of circumstances, when end of life care has been well planned and is consistent with the needs and wishes of children and their families, parents can take comfort in knowing that their child died in the place they chose.
“NHS bodies, including CCGs, must plan and fund end of life care on the basis of children’s needs, and not on where they live.”