Allergy Guidance issued—but wider medical conditions guidance back for more work

Contents

Earlier this year, the Department for Education ran a consultation on updating statutory guidance for medical conditions in schools, which included expanded expectations about Allergy management.

However, instead of publishing an entire guidance policy, only the Allergy sections have been published. For the rest of this vastly extended draft guidance, the DfE has merely published a response to its consultation questions, with an announcement it was going back to have another think.

The allergy guidance gives significantly more direction to schools, and will use “forthcoming legislation” to extend the section 100 duty in the Children and Families Act 2014—now modified to include allergy safety—to FE colleges/post-16 institutions, non-maintained special schools and independent schools.

It has been welcomed by families of children who suffer life-threatening reactions that can be triggered without warning. Bereaved parents, and those too worried about their allergic child having an anaphylactic epoisode to send them to school, have campaigned for better allergy information. But they will know only too well that publishing guidance is one thing. Ensuring schools read and act on it, including training for all staff, is another.

What the new allergy guidance says

The guidance follows new duties on LA-maintained schools, academies and Pupil Referral Units (PRUs) contained in the Children’s Wellbeing and Schools Act 2026, to publish allergy safety policies. It gives clear and comprehensive messages about what should be included in a school policy, how to give adrenaline immediately if anaphylaxis is suspected, and contact emergency services.

One of the main changes is that, instead of being locked away in a school cupboard, children who need autoinjector devices (ADs, e.g., EpiPens/Jext), even those in primary school, will be expected to carry them in their school bags. In bold, it states, children should “have access to both of their two prescribed ADs at all times.”

This obviously means a child cannot leave their bag in a locker, or alternatively, they’ll need to have a separate lightweight carrier for their ADs. This will be an additional burden for a child, but where a school has a large campus, having one immediately to hand will make prompt action easier (as long as it doesn’t get lost or fall out of a bag).

Schools will need their own supplies

The Government also intends to introduce a statutory duty requiring schools to stock their own emergency ADs stored in an unlocked cupboard, which will be included in “forthcoming Regulations”. This will only apply to schools and not to early years settings or FE colleges. As we said when the consultation was published, a school-held stock of spare adrenaline devices is a sensible proposal, though it does raise the obvious question of cost. The financial implications for schools can mount up in a large school or college, having to purchase sufficient Autoinjector devices that must be periodically replaced on expiration, and on training. Allergy UK has a Schools Allergy Fund for those setting who may find the cost difficult to manage.

Schools are permitted to purchase ADs, but not nasal sprays, as spare without a prescription for emergency use. The guidance advises on how many schools should have according to setting type and size, and that they should have sufficient to cover trips off site without leaving the school short of what is required. The Guidance also states that allergies should be included in a child’s School Individual Healthcare Plan (this is not the same as an EHCP).

Trips and activities are also covered, saying settings should risk-assess off-site visits for children at risk of anaphylaxis, ensure trained staff are present, and consider whether spare adrenaline devices should be taken, but without leaving the school site without cover. The guidance points out that ensuring a child doesn’t miss out or suffers discrimination because of an allergy (or any type of disability) is also a provision of the Equality Act

The guidance also strengthens expectations not to treat serious incidents and “near misses” as unfortunate one-offs. It says they should trigger learning and a review of policies where needed and include the pupil and their parents.

Mast Cell Activation Syndrome—a poorly undersood condition

It is a comprehensive document and includes Mast Cell Activation Syndrome (MCAS), which is very under-appreciated as a cause of allergic reaction, because of its wide range of symptoms and causes. Schools, parents, and GPs would be well advised to understand the links between MCAS and conditions such as Ehlers Danlos syndrome, Postural Orthostatic Tachycardia syndrome (PoTS), and Autism. This is a growing area of research, and of great interest to me personally, as someone with all four—and I am far from alone.

All my life, I’ve been plagued by varying severity of reactions/allergies to seemingly unrelated things, from latex, plasters, white wine vinegar, cheeses, tomato sauces, fermented foods, spices… leading to some highly embarrassing social situations and a general feeling of being pathetically delicate. I now know these foods mentioned are high in histamine—something no doctor I saw every realised.

If this seems to happen to your child, you would do well to keep a list of symptoms and potential triggers and ask for a referral to a specialist who understands MCAS. This overview from Mast Cell Action is helpful, and the Fodmap Diet can help, but medical advice should be sought first. There is also increasing online content from medics and GPs, such as Dr A, about these links–including their interaction with hormones.

Why hasn’t all the guidance been published?

We covered concerns by Unison (among others) about parts of the original consultation that has implications for staffing, funding, clinical responsibility, NHS involvement and where exactly education support ends and healthcare begins.

While the case for Allergy protection was clear, the wider medical conditions draft guidance was many times longer than the original (which is still in force). The Government seems to have accepted criticism that the draft tried to do too much, while ducking some of the hardest questions.

Promoted

Pause, rethink, clarify

The consultation document was ambitious, with welcome additions such as recognition of invisible and fluctuating conditions, support before formal diagnosis, clearer unacceptable practice, stronger IHP expectations, named responsibility, incident learning and more attention to fatigue.

However, the largest areas of concern, which we also share, centred around whether the system can safely deliver what the guidance expects. There were also serious concerns over placing a lot more expectation on schools without properly resolving NHS responsibility, clinical delegation, funding, training standards, school nursing capacity or enforcement.

In its article, UNISON said schools are increasingly delivering healthcare through education staff who are not health professionals, including medication, controlled drugs and procedures such as catheterisation, tracheostomy care and enteral feeding.

The government response does answer one SNJ concern more clearly than the draft did. It says IHPs should be amended so they are understood as the school’s record of how it will deliver care plans, action plans and clinical advice. Schools should not try to summarise or make judgements about plans provided by healthcare professionals.

The allergy guidance repeats this point more explicitly: IHPs are not clinical documents, education staff are not expected to have clinical expertise, schools are not responsible for clinical assessments or NHS healthcare activities, and clinical plans should be attached or referred to, not rewritten in ways that could introduce errors.

That is a significant improvement. But it still leaves the bigger question unresolved: if the child needs clinical care in order to attend school safely, who commissions it, who trains staff, who signs off competence, who funds it, who reviews it, and who is accountable when it goes wrong?

What the response ignores

Another point of concern is where the response document acknowledged some wanted guidance to add flexibility around the attendance of children with medical conditions, including off-site education. This is dangerous territory for a Government with an attendance drive, and so it ignored it completely.

Our response, among others, also noted that while the draft included many medical conditions, it ignored those such as autism, well known for its many co-occurring conditions. This is vital to acknowledge as it’s something many do not understand. The Government responded, saying it would “work with experts and clinicians to provide a wider range of medical conditions, reflecting feedback from the consultation.”

We also included concerns over the degraded role and availability of school nursing services or how wider NHS support infrastructure will be strengthened to support the significantly expanded expectations it introduces. Without sufficient clinical oversight and workforce capacity, there is a substantial risk that increasingly complex healthcare responsibilities will continue to shift onto already overstretched school leaders, teaching staff and support staff. This risks creating unsafe variability in practice, increasing pressure on educational staff, and transferring responsibility for healthcare implementation away from NHS-commissioned services without appropriate safeguards. The guidance says nothing about any of this.

Our own contribution also suggested that instead of making another wordy text-based document, the guidance should be presented as an online portal, including links to other information, allowing it to be searchable, easier to use and easily updateable. We think this would make it much more valuable for education settings. It would become something school staff could refer to in minutes, rather than wading through reams of information that can quickly become out of date.

The DfE has now accepted that further work is needed to clarify the respective roles and responsibilities of education settings and healthcare professionals, and says it will work with DHSC before publishing the updated medical conditions guidance “in due course,” which we hope isn’t code for kicking it into the long grass, because the draft does contain genuine improvements,

Nevertheless, the final guidance cannot simply hand schools a bigger list of expectations and hope goodwill fills the gap. Families need safe, consistent support. School staff need clear boundaries, training, time and protection. Children and young people need to be able to attend, learn, eat, breathe, use the toilet, go on trips and, crucially, be believed when their condition is not obvious.

Allergy safety is now moving in the right direction, as long—as I say—it’s read and fully implemented. The wider medical conditions guidance must now catch up — properly, jointly, and with the NHS responsibilities written in.

Disabled Children’s Rights are Under Attack.
We’re fighting, but we can’t do it alone: we need your help more than ever.
We’re volunteer-run, but costs are rising. To help us keep going, please consider a one-off or, if it’s possible, a regular donation.
Read more about being a regular donor here.
We use Zeffy to fundraise, which doesn’t charge us a fee, so 100% of your donation reaches us.

DONATE TO HELP
KEEP SNJ ONLINE!

Key Content

a monkey in the jungle with a magnifying glass and a deerstalker hat

image includes graphics from the article

Don’t miss a thing!

Don’t miss any posts from SNJ – simply add your email address below. You must click the link in the confirmation email you’ll receive to activate your free subscription.

You can also keep up with us by following our

WhatsApp Channel!

Want more? Be an SNJ regular donor!

SNJ is a non-profit and everyone who writes here does so voluntarily. We need your support to help us with costs by donating once or as a regular patron. Find out more here

About
Latest Posts

Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder & co-director of Special Needs Jungle. (She/Her) Autistic parent of two young autistic adults Devoted Grandma. National SEND advisor, journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media.
She is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

Latest posts by Tania Tirraoro (see all)