Bereaved parents hand in open letter to Downing Street over 24/7 palliative care 'postcode lottery'
By ITV Central Production Journalist Zahra Fatima
The parents of two Warwickshire boys who died have handed in a letter to Downing Street calling to end the "postcode lottery" to have access to 24/7 care at home.
Claire Young stood alongside Natalie and Kev Ellard as they handed in the letter signed by 1,900 people.
Both families were able to access 24/7 palliative care for their sons George Young and Ted Ellard who died at the ages of five and one respectively.
They are now working with the charity Together for Short Lives, which works with families of seriously-ill children to provide end-of-life support, to ensure families across the country get the same support wherever they live.
A report was published by the charity in May about palliative care for children.
It said there is a "postcode lottery" across England where they claimed some families of seriously-ill children were unable to access end of life care at home.
The report said end-of-life care was available in just over half of local authority areas in England during normal working hours and less than a fifth of areas in England offered 24/7 palliative care for children at home.
The Department for Health and Social Care said they were "investing £23 million in the Children and Young People hospice grant by March 2023".
Following the report, Ms Young put together an open letter which has now been handed in to the PM.
Standing outside Downing Street on Friday, July 22, she said: "Having to (have end of life) care for your child is a terrible thing to have to experience and to not have the option to do it at home is unimaginable.
"We had such immaculate care and everybody should be entitled to that across the country, no matter where you live or when you need that care, whether that's during the day, or at night, or during bank holidays".
Ms Young's son George was born in 2013 and was diagnosed with a rare condition called Batten Disease variant CLN8 in 2017. He died in 2019 just weeks before his sixth birthday.
She said: "George was full of adrenaline. He loved doing anything fast-paced and adventurous. For us to have him at home in his final days was so special.
"To be able to have him in his own bed, surrounded by his own toys, familiar sights, family and friends were able to visit.
"Thats such precious memories for me to be able to hold on to now that I don't have him.
"Every family should have that. If you lose a child it's game changing and you need every bit of joyous memory to hold on to."
Ms Young spoke of her pride in handing in the letter at Downing Street.
She said: “We had no idea how much time we would have with George and the final weeks of his life were traumatic.
“But with our local NHS children’s palliative care team’s support, we were able to make choices and to control his symptoms.
"They were at the house when we needed them, day or night, and were at the end of the phone.
"George was able to die at home, and they gave me time to be with him, which was precious. I am really proud to travel to Downing Street today to drop off this important letter to the government.
"I am representing every family with a seriously-ill child who needs palliative care.”
The charity said that in the West Midlands, there are currently 9,779 children with life-limiting and life-threatening conditions. In the East Midlands, it stands at 6,695 children.
Andy Fletcher, CEO of Together for Short Lives, said: “I am delighted to be joining Natalie,Kev and Claire as they hand in the open letter to 10 Downing Street.
"Every family caring for a seriously-ill child should have access to specialist children’s palliative care, when and where they need it.
"It’s shocking that many families facing the heartbreak of their child dying young have little choice in their child’s end of life.
"The NHS now has legal duty to commission palliative care for children and young people. If ministers do not act now more and more of these children and their families will be denied choice and control over their palliative care, especially at end of life.”
In a statement, the Department of Health and Social Care said: “We recognise that access to high-quality, personalised palliative care in the community can make all the difference for families of seriously ill children.
"We are investing £23 million in the Children and Young People hospice grant by March 2023 to provide care close to home for seriously ill children, as and when they need it."