Kate Nicholl: Allergy strategy is needed in Northern Ireland because every child deserves to be safe

I was in the year above her at a nearby school and I remember the profound impact her loss had on those who knew her and on the wider community.

It's strange how you can never meet a person and yet think about them often, and in the almost twenty years since, I've found myself thinking of a young girl who was loved, who mattered and who had a whole life of possibility ahead of her – that was never realised because of the cruelty of an avoidable death.

Since having my own children, the grief her family must hold is even harder for me to grasp.

Readers who are parents will know the constant state of alert that materialises with their child's first breath. As babies, we nervously watch them sleep; as toddlers, scour for hidden dangers; and as they grow, so too does the list of other worries.

Those thoughts that interrupt you throughout your day – wondering how they're getting on in school, how they’re being treated, if they're happy… It never stops and what I've learned in my work with allergy families is how blessed I am with the minor parental concerns which occupy my mind.

For allergy families, the ultimate and very real fear is that what happened to Jane McVeigh could happen to their child, that they won’t come home.

And I cannot for the life of me understand why this still is not treated with the seriousness it deserves, because Jane did everything right. She carried her medication. What failed her was the system around her.

As a politician who knows very little about a lot, I’ve learned that the people to listen to are the experts. And no one has greater expertise than the families living with severe allergies – they already know the risks better than anyone else and they plan for them every single day.

So many of the stories parents have told me – about children left out of social events, school trips and activities – are so unfair.

One mother wrote to me recently about taking her daughter to a party. As always, she had rung ahead to explain her daughter's allergies and was told it was no problem, just to speak to the chef on the day.

The place was very busy and the chef was clearly under pressure. He told her the chicken nuggets had no milk or nuts in them, but he still needed to check about egg.

She could see the empty packet sitting on top of the bin beside her, so she offered to read it herself. No egg, but they did contain milk. When she told him, he argued with her that he had no glasses on and couldn’t read it.

So her daughter didn't get her meal. But as her mum put it, "I got to take her home safe and sound to her own bed that night; instead of a 999 call to the Royal Victoria Hospital A&E dept." She went back to the party and acted like nothing had happened.

"It is just a sad reality that as an allergy parent, you are potentially putting your child's life in the hands of someone who has neither the awareness nor understanding of how one simple, silly mistake, can cost a family like mine, absolutely everything."

Experiences like these aren’t because of anything these children or their families have done. It's because the places they go just aren't prepared.

And it isn't a small issue. The UK has some of the highest allergy rates in the world, with 4 in 10 children affected. Yet for years, support has been patchy, under-resourced and left to chance.

The good news is that's starting to change. In April, the UK's first National Allergy Strategy was launched. It was drawn up by the main allergy charities, clinicians and more than 150 experts from all four nations. It calls for mandatory allergy training in schools, better access to adrenaline, a national allergy register and an Allergy Tsar to make sure government departments actually work together.

These are exactly the changes that could have made a difference for Jane: spare adrenaline, trained adults and a system that doesn't rely on one child and one pen.

Northern Ireland needs to be part of this. A strategy built across all four nations only works if every government picks it up. I want the Executive to commit to it in full, because children here deserve the same protection as children anywhere else in the UK.

Because this isn't just a health issue, or an education issue. It's everything. It's the café, the cinema, the football club, the school trip, the birthday party, the bus to and from school.

Allergies don't stop at the hospital door or the school gate, so the response can't either. Every department, every council, every business and every one of us has a part to play. Keeping these children safe needs all of society to step up, not just their families.

There are steps happening here already. The Education Minister is consulting on allergy arrangements in schools. Every school should have clear procedures, trained staff and a plan for when things go wrong, including when medication fails.

If you are a parent, a teacher or someone living with allergies, please respond – your experience matters so much here.

Following a motion from Alliance councillors, Belfast City Council is also looking at allergy awareness in leisure centres, markets, events and council buildings. Small changes in those places make a real difference.

There's something all of us can do too. A reaction can start with an itchy mouth, a rash, or a child who suddenly seems unwell or frightened. It becomes an emergency when it affects their breathing or swallowing, or when they become faint or collapse. If that happens, use their adrenaline pen straight away, then call 999 and say "anaphylaxis." Don't wait to see if it gets better.

We should all take five minutes to learn the signs at Allergy UK. If you're a teacher, a coach, a youth leader, or a parent hosting a party, make sure you know what to do if a child has a reaction.

The work to be done is wide ranging and it requires a societal effort - and with every meeting I have, the same thought I’ve had for two decades keeps coming back to me: Jane McVeigh deserved to come home from that party.

Every child deserves to be safe and included wherever they go, and all of us need to keep pushing until that is the reality across Northern Ireland.

Kate Nicholl, Alliance MLA for Belfast South