Around 40,000 babies, children and young people in England have chronic illnesses but the quality of care has been criticised as “patchy”, according to an All-Party Parliamentary Group (APPG).
The group’s report warned end-of-life care depended on a postcode lottery and 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 stated.
“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.”
MPs warned too few palliative care services could provide age appropriate support and highlighted problems with advance care planning.
They also raised concerns about access to palliative care out-of-hours and at weekends, as well as access to short breaks for parents under pressure from round-the-clock care.
Nikki Lancaster, whose son Lennon Ruffles died last year from a life-limiting condition, told BBC Radio’s 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.”
She added: “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.”
The APPG report comes after research by the charity Together for Short Lives published in November 2017 concluded children’s palliative care was “patchy and inconsistent”.
The charity warned the government’s commitment to high quality personalised end-of-life care was not being fulfilled in almost half of local areas in England and called for an urgent review into children’s palliative care.
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.”
Agencies contributed to this report