We were proud to stand alongside some of our inspirational supporters at the House of Commons today to press for better UK-wide services for children with life-limiting illnesses
We joined forces with five other charities at a Parliamentary event to highlight gaps in current arrangements for young people's end-of-life care, which leave too many families isolated when they are most in need of support.
The event was driven by Sacha Langton-Gilks, who lost her 16-year-old son David - known as DD - to a brain tumour in 2012.
Sacha has written a book, Follow the Child: Planning and Having the Best End-of-Life Care for Your Child, with contributions from other mothers who share their own experiences of caring for and losing a child with a terminal illness.
It calls for nationally-organised, state-funded care for children with life-limiting conditions, in place of the unequal provision that exists currently in the UK and in the US.
Sacha (pictured speaking) said: “We were able to keep DD at home partly because our local surgery happens to have specialist training for GPs in end-of-life care.
“Healthcare professionals trying to protect you by not broaching the subject of end of life mean conversations can't happen with families.
“It is outrageous that currently it's luck that dictates whether you manage a 'good death' for your child."
Our Chief Executive, Sarah Lindsell, said: “It is simply wrong that so many families with a terminally-ill child are left isolated and without the services and support they need.
“Improving access to palliative and end-of-life services for children with life-limiting conditions must be a priority for policymakers."
The six charities - The Brain Tumour Charity, Together for Short Lives, Marie Curie, Teenage Cancer Trust, Gold Standards Framework and CLIC Sargent - are calling on the government to commit to developing a national children's palliative care strategy for England.
We believe 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.