Children with complex health needs missing school due to spats over care
5 mins read
Thursday 27 November 2025
As part of our campaign into children’s continuing care, we learned that many children who get the NHS care package miss out on their education due to gaps in nursing care and disputes over who should support during the school day.
Problems arise because of the blurred lines between educational legal duties to ensure a child with medical needs can access education, and health care duties to provide treatment for a child with health needs.
Children with continuing care needs typically need round the clock nursing care and help to breathe, eat, move and manage pain and seizures.
Parents told us they faced a range of problems including:
- Difficulties getting paid carers to go into school to support a child with a tracheostomy (a tube inserted into the windpipe that allows a child to breathe or allows mucus to be cleared from the lungs).
- Refusal from the NHS to pay for in-school nursing support for their child.
- Problems recruiting and retaining trained carers able to manage their child’s medical needs in school.
Teaching unions have blamed the fall in the number of NHS nurses in schools and efforts by health bodies to push responsibility onto already over stretched high needs funding budgets.
One parent said her daughter was prevented from attending school due to staff shortages while another time she was forced to go into her child’s school every lunchtime to see to her child’s tracheostomy needs because there was no-one else available.
“I was dropping off my daughter at school at 9.30am, then having to go back at lunchtime to change her tracheostomy in a small cupboard in the school entrance hall.”
Families in this situation are pinning hopes on guidance expected before Christmas which aims to clarify who is responsible for providing vital medical care for their child during the school day.
“The lack of guidance is the real issue. Changing a tracheostomy is seen as a reasonable adjustment in some areas but not others – so depending on where you live, you qualify for something completely different. It’s very unjust.” explained a parent of two children with complex medical needs.
What the law says
Section 100 of the Children and Families Act 2014 says schools have a statutory duty to make arrangements to support pupils with medical conditions so they can access education to ensure children with health conditions like diabetes, epilepsy, asthma, or more complex needs are not excluded. Schools must have policies, individual healthcare plans, and reasonable adjustments in place. The duty is about access to education, not delivering healthcare.
The NHS Act 2006 and Health and Social Care Act 2012 stipulate that the NHS is responsible for clinical diagnosis, treatment, ongoing medical management and specialist procedures like tracheostomy care, catheterisation and tube feeding, as well as training and indemnity for staff who support children in school. This includes responsibility for community nursing, specialist paediatric services and therapies children may need during the school day.
New guidance expected “soon”
A Department for Education official recently told Health Conditions in School Alliance (HCSA) that non-statutory guidance on medical responsibilities was currently with their lawyers, but they were hoping to publish it before the end of this year. 2015 guidance: Government is also currently reviewing wider statutory guidance for Supporting Pupils at School with Medical Conditions (in England).
The HCSA – which Contact is a member of – has lobbied for much stronger protections in the non‑statutory guidance and revisions to the 2015 statutory guidance to ensure children with health conditions are not excluded from school because of a lack of support for their health conditions. It calls for:
- Clarification that health remains the responsibility of the NHS, not schools (apart from reasonable adjustments under the Equality Act)
- Schools facilitating care only when safe and appropriate with proper training and indemnity
- An individual healthcare plan jointly developed by parents and clinicians for all children with medical conditions
Support our campaign
Sign our petition calling for urgent reform of continuing care for children with the most complex health needs who need round the clock support.
Our research including information from freedom of information requests to 42 English ICBs found:
- 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 and growing numbers of medically complex children living longer.
- Those that do get it, face breakdowns in care packages due to staffing gaps and many live in constant fear it will be taken away due to annual reassessments.
- There is a growing shortage of health-trained care staff including community children’s nurses and care agency workers. There is currently no dedicated national plan to grow and support the workforce delivering home-based care for children with complex health needs, so families aren’t always getting the care package they are entitled to.
- Children have weaker legal protections than adults who need health funded support.
Find out more about our Continuing Care campaign.
Advice and information about Continuing Care for children.
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