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Follow the child and let seriously ill children and families make end of life care choices, says charity coalition

Author: Suzanne Stevenson
26 January 2018

Six national charities are 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.

There are 5,000 babies, children and young people in the UK under the age of 19 who die every year. A significant number are children with life-limiting or life-threatening conditions who need end of life care.

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.

Members of the charity coalition include: 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.

The coalition is 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.

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.”

Commenting on behalf of the coalition, 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.”

The coalition is 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 six charities 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.

The charities will press their ambitions for better end of life care at a Westminster reception called #FollowTheChild held on 31 January 2018.

More information is available on the Together for Short Lives website.

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