A campaign has been launched to give all children at the end of their lives access to 24/7 palliative care at home.
The Huddersfield-based Forget Me Not Children’s Hospice has joined forces with Together Short Lives to urge the public to sign an open letter calling for an end to the ‘postcode lottery’ for care in England.
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.
West Yorkshire is one of the areas where care was found to be unavailable. Forget Me Not wants every family to get the right palliative care support needed.
The campaign #EveryDayEveryNight is urging the public to get behind the open letter and take action. Sign up at https://www.togetherforshortlives.org.uk/changing-lives/speaking-up-for-children/campaigning-for-change/24-7-end-of-life-care-for-children-everydayeverynight/
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.
For parents who 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 eight years of age.
Jackie, of Birstall, said: “When you’ve got someone with special needs 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.
“Forget Me Not 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, Forget Me Not’s 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, seven 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.”