“Make an excellent plan for your child’s end of life as soon as possible and then forget about it and just live and follow your child in whatever they want to do. A good death is priceless.” Sacha Langton-Gilks, Parent.
Together for Short Lives is one of the six national charities pressing ministers to make sure that the choices seriously ill children and families can make about their palliative and end of their life care are based on their needs, wishes and best interests – and are not restricted by the postcode in which they live.
5,000 babies, children and young people in the UK under the age of 19 die every year. A significant number are children with life-limiting or life-threatening conditions who need end of life care. 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. Yet, 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 universally available to all families preparing for their child’s death.
The charity coalition of Together for Short Lives, The Brain Tumour Charity, CLIC Sargent, Teenage Cancer Trust, Marie Curie and The National Gold Standards Framework Centre in End of Life Care, will press their ambitions for better end of life care at a Westminster reception called #FollowTheChild (31 January 2018). We are calling on the government to end a cruel postcode lottery and help families facing the unimaginable have the best possible experience by meeting its end of life choice commitment for babies, children and young people, and by implementing the NICE (National Institute for Health and Care Excellence) guideline on providing children’s palliative care. NICE calculates that by investing £12.7million in implementing its guideline on end of life care for children, non-cash savings worth £34.7million would be released back into the NHS in England.
Parent, Sacha Langton-Gilks 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.
Talking to other parents has led me to conclude that no parent should receive an incurable diagnosis for their child requiring palliative support without a palliative specialist at that meeting: it must start at the very beginning. This was true for only one family [I know]; the networks were in place locally so their choices, both before and after death, could be delivered. Without this, ‘choice’ at end of life is meaningless. 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.
Access to good end of life care for children and young people is not universal.
Research previously published by Together for Short Lives has shown that there are significant barriers which prevent some families from receiving the care they need:
Too many children cannot choose where they receive end of life care.
Just two thirds (67%) of NHS clinical commissioning groups (CCGs) in England plan and fund community children’s nursing teams to provide care out of hours and at weekends .
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. Only a third (35%) of CCGs say that they are implementing it, while a further 19% stated that they are developing plans to do so .
State funding for charities delivering vital children’s palliative care in England, including children’s hospices, is patchy and declining year on year . And there is a lack of parity between statutory funding for children’s and adult palliative care, for example on average, adult hospices in England receive 33% of their funding from statutory sources and children hospices receive an average of 22%.
NICE recommends that children’s end of life care should be joined up by managed clinical networks (MCN). Yet only one region of England has an MCN.
There are too few doctors and nurses with the skills, knowledge and experience needed to care for children at the end of their lives .
The number of children with life-limiting conditions is growing, yet never been closely monitored.
Barbara Gelb OBE, 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.
We only have one chance to get this right for each child. A bad death will stay with a family forever, affecting parents, siblings and all those close to the child. I call on the government to make sure that its end of life care choice commitment to children is met across England. 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.
Sarah Lindsell, Chief Executive of The Brain Tumour Charity, added:
“It is simply wrong that so many families facing the most profound emotional trauma – the loss of a child – are left isolated and without the services and support they need. No-one in this situation should be forced to battle for the best care for their child, or to negotiate a complex maze of provision that varies according to where they live.”
“Improving access to palliative and end-of-life services for children with life-limiting conditions must be a priority for policymakers.”
The six charities are calling on the government to commit to developing a national children’s palliative care strategy for England. This should be developed based on a national inquiry into the care and support offered to the 40,000 babies, children and young people in England with life-limiting and life-threatening conditions and their families:
Its scope should include the health, education, social care and financial support on offer to them.
The strategy should bring about a system which is joined-up around the needs of seriously ill children and their families and which implements the National Institute for Health and Care Excellence (NICE) guidance on end of life care for children.
Funding should be made available to test new approaches to implementing the strategy in pilot areas across England.
We are asking MPs and peers to help by pressing the government to initiate the inquiry, the strategy and the pilots by securing a debate, tabling parliamentary questions and/or writing letters to ministers.
As a coalition of charities, and in addition to asking for a national children’s palliative care strategy for England, we make the following calls:
- The government, Health Education England and universities should join us at a summit to discuss the children’s palliative care workforce.
- The government should commission research into the numbers, needs and locations of children with life-limiting conditions.
- The government should hold CCGs to account in meeting the end of life choice commitment for children and help them understand what they are responsible for commissioning.
- The government should increase the Children’s Hospice Grant to £25million per year – and provide parity of funding between children’s and adult hospices, as in Scotland.
- The government and the NHS should invest in and develop MCNs, building on the established children’s palliative care networks in England.
 Royal College of Paediatrics and Child Health. 2014. Why children die: death in infants, children and young people in the UK. Available to download from: http://bit.ly/2kljcMu
 The National Institute for Health and Care Excellence. 2016. End of life care for infants, children and young people with life-limiting conditions: planning and management – NICE guideline [NG61]. Available to download from: https://www.nice.org.uk/guidance/ng61