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Help every family to get 24/7 end of life care at home for seriously ill children

We and Together for Short Lives, the UK charity for seriously ill children are urging the public to sign an open letter to give all children at the end of their life, access to 24/7 palliative care at home.

Urgent action is needed following shocking findings in a new report that shows 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 that fully meets National Institute for Health and Care Excellence (NICE) quality standards.

We want every family to get the right palliative care support needed #EveryDayEveryNight which is why we are urging you to get behind the open letter and take action.

Together for Short Lives says it’s vital that all families caring for a seriously ill child have choice in where their child dies and they are calling on the UK Government to ensure that seriously ill children have access to 24/7 care for children, for whom time is short. 

The findings show that one of the causes is due to the patchy way in which care is planned and funded by local NHS organisations. The care not only depends on where families live, but also what time of day and night they need it.

Other findings:

  • 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 (care for children with life limiting conditions) around the clock.

  • Support that meets the NICE standards is fully or partially provided in just one fifth (21%) of integrated care system areas. Seriously ill children in four fifths (79%) of areas are unable to access care that meets the same standard.  

  • 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. 

We know that 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.   

Jackie’s son Jacob died last year aged 18. Jackie had been his full-time carer since he was diagnosed with a rare form of epilepsy at 8 years of age. “When you’ve got someone with special needs,” she says, “you’re always listening out. You’re always on call, you never switch off. Life would have been even harder if we hadn’t had Forget Me Not. It’s so mentally draining, all the stuff going round in your head. The knowledge that the team have there, it took the strain off. That was a massive help.

We provided end of life care during Jacob’s final days and the whole family stayed at the hospice to say their last goodbyes. “The care Forget Me Not gave not just Jacob, but myself, his dad and his sisters meant so much. We made so many more memories in those final days. During our stay, we laughed so much and Jacob had the best people looking after him.”

Lis Meates, our Director of Service Development and Delivery said: “When a family is frightened about a sudden deterioration in their child’s condition at 3am on a Saturday morning, they can’t wait until 9am on Monday to get the specialist help they need. At Forget Me Not, we’re on call 24 hours a day, 7 days a week to provide vital end of life care and support for children and their families in the hospice, at home or in other community settings. We know this makes an incredible difference to families going through the worst experience imaginable. And it takes the pressure off an over-stretched NHS.

But as a charity, we’re only able to do this thanks to the generosity of our local community, who fundraise, make donations and shop with us to help us generate the funds we need to run our hospice and staff it with expert nurses and therapists who can provide the high quality palliative care these families need and deserve. 

We don’t have time for this postcode lottery to end, we all must come together to bring about sustainable 24/7 children’s palliative care at home for seriously ill children, for whom time is short.”

Andy Fletcher, CEO for Together for Short Lives added:

“Having access to specialist children’s palliative care, when and where they need it, must be afforded to every family caring for a seriously ill child. If ministers do not act now more and more seriously ill children and their families will be denied choice and control over their palliative care, especially at end of life.” 

Could you sign an open letter to the government to ensure families of seriously ill children get the support needed?