24/7 end of life care for children #EveryDayEveryNight

Seriously ill children face a postcode lottery for end of life care. Time is running out for these families, so please act now to help give all children and families in England access to end of life care.

Our report reveals that seriously ill children and their families across England face a postcode lottery when trying to access end of life care at home at night, at weekends and on bank holidays.

We are calling on the government to ensure that all seriously ill children, for whom time is short, have access to 24/7 palliative care. But we need your help too.

Write to your MP now

When Claire’s son George received a terminal diagnosis of Batten Disease in 2017 she relied on the 24/7 support of her local palliative care team. The support helped George and his family enjoy the best quality of life they could with the time they had, and Claire will be forever grateful for the support she received. But in many areas of England families in the same position don’t get the same support, so Claire has written to the Prime Minister to ask him to ensure that families of seriously ill children get the support needed. Please write to your local MP about this now, and share this page using #EveryDayEveryNight.

Write to your MP

Hear from families

What does it means to have 24/7 palliative support? What happens when the 24/7 palliative support isn’t there?

George

We had support day and night

Ted

We made amazing memories

Archie

We were amongst beloved family

Charles

They were there for us

Isabelle

We had peace of mind

Florence

They were amazing

Mikey

Exhausted left without a fulfilled care package

Timmy

We had to manage alone

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.

Can you do more to help?

You can make a donation to support our work – families that can’t access care #everydayeverynight are suffering and they’re suffering alone. Please help us make sure they can get the vital care they need.

Donate now