24/7 end of life care for children #EveryDayEveryNight

Dear Prime Minister

I was shocked to hear that many families caring for a seriously ill child cannot choose to access end of life care at home. Every family should be able to choose where their beloved child dies, with access end of life care at home, 24 hours a day, seven days a week, that meets the national quality standards.

My family were fortunate to have great exemplary children’s palliative care at home for our son George. After he began having seizures at the age of three, George was diagnosed with an extremely rare, terminal condition called Batten Disease variant CLN8.

Within a month of George’s diagnosis, he had been referred to the NHS South Warwickshire Foundation Trust children’s palliative care team. The team were amazing.

George died at home, two weeks before his sixth birthday. The final weeks of his life were traumatic. But with the team’s support, we were able to make choices and control his symptoms at home. We would not have got through George’s journey without them. The care they provided was immaculate.

A recent report by the UK charity Together for Short Lives has 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.

This cannot be right. To make sure every family of a seriously ill child in England can choose for them to die at home if that’s what’s right for them, the government should implement Together for Short Lives’ recommendations.

This includes filling the £2.26million annual gap in funding for training for specialist paediatric palliative care consultants and increasing the number of other professionals, including children’s nurses who can provide palliative care at home. It should also provide an additional £301million per year to fund children’s palliative care services in hospitals, children’s hospices and in the community.

Please act now to make sure every seriously ill child in England can choose to access end of life care at home, if that is what’s right for them. Our local community children’s palliative care team couldn’t save George’s life. But they did make a lifetime of difference.

Yours sincerely

Claire Young

The new research we’ve just published highlights how far some families are missing out on lifeline support.

• In particular, those living in parts of the North West, West Yorkshire, The Black Country and West Birmingham are facing difficulty in obtaining palliative support around the clock.
• Support that meets the NICE standards [1] is fully or partially provided in just one fifth (21%) of integrated care system areas [2]. Seriously ill children in four fifths (79%) of areas are unable to access care that meets the same standard.
• The report shows that one of the causes is the patchy way in which care is planned and funded by local NHS organisations.
• They also say there is a funding gap of £2.26 million in training for specialist children’s care consultants, with extra resources needed for education and training.
• This is on top of a £301 million gap in overall NHS spending on children’s palliative care.

You can find out more about the situation and support in your area using our interactive maps

Hearing the news that your child is going to die is a parent’s worst nightmare. For those that can’t find support, providing around the clock clinical care at home, all with little sleep and other family responsibilities, takes its toll.

99,000 babies, children and young people are living in the UK with health conditions that are life-limiting or life-threatening—and the number is rising. Many of these children have complex conditions and need specialist care 24 hours a day, seven days a week.