A Merseyside mother says her four-year-old son has been "locked out" of education because of his life-threatening genetic condition and a "loophole" in current legislation. Hayley Reed, who lives in Southport, spoke to the ECHO about her son Hunter, who has congenital adrenal hyperplasia (CAH), and her campaign to change the statutory guidance around schools supporting pupils with medical needs.
According to the Department for Education, schools must have arrangements in place to support pupils with medical conditions and ensure staff receive suitable training. However, Hayley said the lack of a mandatory requirement allows schools to "opt-out", adding: "It's such a sad situation because Hunter is a happy and smart young lad and it's unacceptable that this loophole is effectively denying him the education he deserves due to his medical circumstances."
What is congenital adrenal hyperplasia
CAH is the medical name for a group of genetic conditions which affect the adrenal glands, and is a permanent, life-threatening condition. It impairs the production of cortisol, which can trigger a dangerous condition called an adrenal crisis when the body is put under stress.
These stressors can include things like a common stomach bug, a fall, or a bang on the head, and if left untreated, adrenal crisis can cause severe dehydration, dangerously low blood pressure, shock, seizures, and potentially coma or death. For people with CAH experiencing adrenal crisis, a life-saving intramuscular (IM) hydrocortisone injection should be administered immediately.
Planning for Hunter's school place
Approximately 18 months before Hunter was due to start his education, Hayley said she visited St Patrick's School in Southport, explained Hunter's medical needs, and asked whether it could safely support him. She added: "I was reassured that they could and was told we would continue discussions closer to his start date. Around eight months before Hunter was due to start, a meeting was arranged where I explained Hunter's diagnosis, his daily medication needs, the importance of specialist training, emergency procedures, and hospital admission arrangements."
The meeting went well and the school agreed that they would undertake the required training and could support Hunter. However, in the weeks leading up to Hunter starting at St Patrick's, Hayley said she became increasingly concerned because the school staff had not undertaken the training needed to administer an emergency injection, and was then told that Hunter would not be attending the school.
In the letter sent from St Patrick's to Hayley, and seen by the ECHO, the school outlined its understanding of Hayley's request for staff to administer the IM injection to Hunter, but said this was not in his individual healthcare plan. The school also cited the advice given by a specialist nurse from the endocrinology team and how it does not normally train school settings on how to give the emergency injection of hydrocortisone.
Responding to questions about Hunter's situation, and the concerns raised by Hayley about the management of his school place, a spokesperson for St Patrick's School said it is not able to comment on individual cases, but added: "We are committed to supporting children and families in accordance with the Department for Education’s statutory guidance and best practice, and would like to clarify that at no point has admission been denied to any child. We work closely with, and follow the advice and guidance of, the local authority and other relevant professionals, whose expertise helps inform our approach in all matters relating to pupil welfare and support."
Campaign to update Department for Education guidelines
The ECHO put Hayley's case to the Department for Education (DfE), and a spokesperson told us: "No child with a medical condition should be denied access to education because appropriate support arrangements have not been put in place. Schools have a statutory duty to support pupils with medical needs and should have clear policies and appropriate healthcare arrangements, including individual healthcare plans where necessary. We are working closely with the DHSC (Department of Health and Social Care) as well as stakeholders to review our supporting children and young people with medical conditions and allergy guidance."
However, Hayley said the guidance does not go far enough, and includes a "loophole" for schools to "opt out", and cites the DfE's statutory guidelines around supporting pupils at school with medical conditions. That document includes a section on "roles and responsibilities" with advice for school staff, stating: "Any member of school staff may be asked to provide support to pupils with medical conditions, including the administering of medicines, although they cannot be required to do so."
Hayley has met with Southport MP Patrick Hurley who has now written to the Secretary of State for Education to raise "serious concerns" about arrangements for administering emergency medication in schools, particularly for children at risk of adrenal crisis. In the letter, seen by the ECHO, Mr Hurley questions existing statutory guidance on supporting pupils with medical conditions, which he said appears to leave "considerable discretion" around whether individual members of staff agree to administer medication.
Mr Hurley requested that the department considers "strengthening the statutory guidance" so that schools are required to ensure the availability of trained staff where a pupil has a documented need for emergency medication. Mr Hurley told us: "It is disappointing to hear of the barriers Hayley and her son have repeatedly faced when trying to access education. While schools work hard to support pupils with medical needs, the current guidance leaves too much room for inconsistency. When children are unable to access education because essential medication cannot be administered, it is families who bear the burden and children who miss out. We need a system that provides greater certainty and protection for those who are most vulnerable."
Hayley has now launched a national campaign called The Hydrocortisone Rule so no parent has to "choose between their child’s education and their survival." There is a parliamentary petition calling on the government to mandate emergency hydrocortisone IM injection training in schools, which has generated hundreds of signatures.
