Mum says son with life-threatening genetic condition missing out on education due to 'loophole'

Play Brightcove video ITV News Granada Reports' Emma Sweeney met Hayley Reed as she pushes for better support for pupils with medical needs like her son Hunter. A mum says her four-year-old son is missing out on starting school due to his life-threatening genetic condition, and a "loophole" in current legislation. Hayley Reed's son Hunter has a life-threatening genetic condition that affects the adrenal glands. He was due to start at St Patrick's school in Southport , in Merseyside , but Hayley says the school staff had not had the necessary training to administer an emergency injection he might have needed.

Hayley said she visited the school around 18 months before Hunter was due to start his education, explained Hunter's medical needs, and asked whether the school 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. Backed by Southport MP Patrick Hurley, they are campaigning to change the statutory guidance around schools supporting pupils with medical needs.

Hayley said she visited the school around 18 months before Hunter was due to start his education and explained Hunter's medical needs. Credit: ITV News Hunter has congenital adrenal hyperplasia (CAH), which 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. Hayley said: "It's not a dangerous drug. If you gave him too much, it wouldn't kill him.

"It would be more fatal if you didn't give the injection." 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. 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." Hayley has met with Southport MP Patrick Hurley who has now written to the Secretary of State for Education. Credit: ITV News In the letter sent from St Patrick's to Hayley, 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.

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."

Hunter was due to start at St Patrick's Catholic Primary School in Southport. Credit: ITV News The Department for Education (DfE) said: “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.” Patrick Hurley MP 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 said: “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.” Want more on the issues affecting the North? Our podcast, From the North answers the questions that matter to our region.