Dying children are facing a postcode lottery in care provision, MPs have warned.
Around 40,000 babies, children and young people in England have chronic illnesses but the quality of palliative care is “patchy”, according to an All-Party Parliamentary Group (APPG).
Its report into end of life care called on the Government to meet its commitment to providing personalised care for vulnerable children.
“The reality is that the quality of palliative care that children and families can access is patchy and depends on where in England they live,” the report states.
“This is limiting the choices they can make about the palliative care they need. It is also unfair and represents a wholly unjustified health inequality.”
The APPG raised concerns about access to palliative care out of hours and at weekends, as well as provision of short breaks for parents to ease the pressure of round the clock care.
It said too few palliative care services were able to always provide age appropriate support and highlighted problems with advance care planning.
Nikki Lancaster, whose son Lennon Ruffles died last year from a life-limiting condition, told BBC 5 Live Investigates: “Looking after Lennon was a full-time job.
“He required medical intervention hourly during the day, and every two hours throughout the night.
“I honestly felt like I was solely responsible for keeping my son alive, and that’s a huge responsibility.
“To give Lennon the quality of life we wanted him to have, we depended on a network of services – for families like mine, high quality children’s palliative care is essential.
“Without it, we just couldn’t have survived. We need the Government to fulfil its commitment and help children and families make the most of every minute.”
A Department of Health and Social Care spokesman said: “We know how distressing it can be for families when a child needs end-of-life care and we expect the NHS to provide a personalised and dignified service that takes account of their wishes.
“The UK is ranked as one of the best countries in the world for palliative care and we remain dedicated to improving patient choice and ending variation for everyone through our end-of-life care commitment.”