Thousands of children with life-threatening conditions not getting vital NHS support

5 mins read

Thursday 30 October 2025

Over half of the most sick and disabled children in England referred for NHS-funded support have been rejected as revealed by Sky News today.

This support, known as continuing care, provides tailored care packages for children who need support to breathe, eat, move and manage their pain.  

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. Despite the number of children living with a life-limiting condition rising by 205%, the overall spend for continuing care by Integrated Care Boards (ICBs) reduced. 

Sign our petition to demand urgent reform of children’s continuing care

Contact made freedom of information (FOI) requests to all 42 ICBs in England about their funding of continuing care packages. Currently ICBs do not have to publish this information for children.    

Anna Bird, chief executive at disability charity Contact, said:

“The number of children living with life-threatening conditions has risen dramatically. But where is the support for them when they get home from hospital?  

“There is an incredibly high bar to qualify for continuing care. Those who do get it live in constant fear it will be taken away. Children have weaker legal protections than adults who need health funded support.  

“This leads to a postcode lottery of care, and many families are left to do the most complex nursing procedures at home alone, such as changing a tracheostomy, suctioning, dealing with multiple seizures, SATS monitoring and administering rescue medication.” 

Key findings from our FOI requests

Key findings of Contact’s FOI survey, shared for the first time today on Sky News, include: 

  • 53% of families referred for continuing care for their child were turned down. To apply, a family must be referred by a nurse, doctor, social worker or teacher. 
  • Overall spending on children’s continuing care went down by £2.9 million, despite massive inflation in this period. 
  • Some ICBs spent significantly more on care packages than others: The average package across all ICBs is £79,000. In Gloucestershire the average spend per care package was £159,434 in 2024, while in Birmingham it was £15,156. 
  • Some ICBs fund more care packages per child population. NHS Mid and South Essex spent 22 times more on continuing care for children than NHS Hertfordshire and West Essex despite having fewer children and young people living in their area. Children in Mid and South Essex are over 16 times more likely to receive a continuing care package than those in Hertfordshire and West Essex.

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.

Contact is calling for reform of children’s continuing care

Anna Bird added: “It is not sustainable to be up 40 times a night for years on end. Some families break, with children at risk of going into residential care and parents left in poor physical and mental health. 

“It’s imperative the government gives attention to this small but vulnerable group and improves the continuing care system. This could be done by improving oversight, strengthening the legal framework and making it more compassionate.” 

Contact is calling for: 

  • The law around children’s continuing care to be strengthened and brought in line with the adult system.
  • ICBs to be made more accountable by introducing a legal duty for ICBs and local authorities to work together. There should also be a legal duty for ICBs to report data on assessments, decisions, appeals, and outcomes to support transparency and service improvement. 
  • A legal right to independent advocacy and a formal appeals process with time limits to be established and external review to ensure already overburdened families can navigate the system and challenge decisions. 

Sign our petition to demand urgent reform of children’s continuing care

When the petition reaches 1,000 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.

“I just want some help as it’s not sustainable”

Becci Tobin, mum to Keir aged six who has the rare genetic condition GABRB3, said:

“We have been trying to get continuing care for Keir for three years. He is under palliative, gastroenterology and neurology consultants at Birmingham Children’s Hospital and requires 24 hour care, but we were told he doesn’t meet the criteria. 

“Keir can have 3-4 seizures a night and is on morphine. So I sleep downstairs with Keir so he doesn’t disturb his siblings and dad, and I have to use a pump, nebuliser, suction, peg feeding and administer medication. I was a head of department at school but had to give that up and now work at a performing arts group as much as I can. I just want some help as it’s not sustainable.” 

Sarah’s son Luke is 3 and has hypoplastic left heart syndrome and complex health needs. He requires 24/7 care. When he left hospital as a baby, he was given a continuing care package. He needs help with breathing and has to be fed by a tube every hour. Last year the continuing care package was reviewed and the ICB tried to take it away. Sarah had to appeal and said the experience traumatised her and she has never really recovered from the stress.