Over half of the most sick and disabled children in England referred for NHS-funded continuing care support have been rejected.
Many families who get children’s continuing care packages live in constant fear of losing support at traumatic annual reviews.
We want to see the law and accountability around children’s continuing care strengthened and brought in line with the adult system.
No parent should have to fight for care their child desperately needs. Like Shelley, who spoke to Sky News about her battle.
Sign our petition demanding urgent reform of children’s continuing care.
Why we’re campaigning
Continuing care is an NHS care package for children who need support to breathe, eat, move and manage their pain.
“Last year at the annual review they tried to take his care package away and I had to appeal. The experience completely traumatised me and I have never really recovered from the stress. Nine months later I was faced with yet another review.”
We made freedom of information (FOI) requests to all 42 ICBs in England about their funding of continuing care packages. Currently integrated care board (ICBs) – NHS organisations who plan the care in local areas – do not have to publish this information for children.
We found:
- Of the 99,000 children in England living with a life-limiting or life-threatening condition, just 4% (4,402 children and young people) get continuing care funding.
- 53% of families referred for continuing care for their child were turned down. To apply, a nurse, doctor, social worker or teacher must make a referral.
- Overall spending on children’s continuing care fell by £2.9 million, despite high inflation in this period. 60% of ICBs decreased spending in real terms, taking into account of inflation, while 40% of ICBs increased spending.
Without this support, needs escalate for the child and family. Families who do qualify live in constant fear of their child’s care package being reduced or withdrawn despite their health not changing or even increasing. Many families describe their child’s annual reviews as traumatising.
Families also have great difficulty finding nursing staff to care for their child. Some families receive as little as £13 per hour to pay nurses helping their child live – just 79p above the National Living Wage.
Read our detailed briefing that outlines the full findings and our recommendations for change. And download the full FOI request data by ICB.
What we want
We are calling on the Government and NHS England to:
- Strengthen the law so children have the same rights to continuing care as adults.
- Make Integrated Care Boards (ICBs) accountable and transparent such as publishing data on children’s continuing care.
- Guarantee families access to independent advocacy and fair appeals.
“I am completely sleep deprived. I worry that if I sleep too deeply, I will miss his seizures or not be able to clear his airways on time.“
Download our full briefing on children’s continuing care.
What you can do
Every child deserves the right to live safely and with dignity. Parent carers are left doing complex nursing tasks alone, night after night. This must change.
Sign the petition to demand urgent reform of children’s continuing care
When the petition reaches 1000 signatures, we will hand it into the Department for Health, asking the Secretary of State for Health and Social Care, Wes Streeting MP to meet with families.
You can read more about continuing care on our webpage below.
Continuing care advice
Continuing care is an NHS-funded care package for children and young people aged under 18 with complex health needs arising from illness or disability.
