‘The Chronic Problem with our Schools.’

Last month I was invited by Ignite Cardiff to speak at their July event. I was given the opportunity to give a talk about my past experience with our education system as someone with a long-term health condition, and give my opinion as a hopeful future educator. It was in front of 300+ people, and my first taste of public speaking, so as you can guess I was absolutely bricking it. Honestly, it was an incredible night and I’m so grateful I had the chance to get to speak about about something I’m so passionate about. After teaching myself my exams mostly from home and  hospital I want to make sure no other student out there who is already fighting for their health feels like they have to fight the system for an opportunity to be educated. I know that hundreds of children and teenagers are being failed by our current education system every year due to something they themselves have no control over, and this HAS to change.

I’ve included a transcript of my speech below if you can’t watch the video.

My name is Eleanor and I’m 21. I’m an Education student at university here in the amazing city of Cardiff.As someone with a chronic bladder condition I used to joke that my autobiography would be called this takes the piss.

Even though this may be my story, please don’t think I’m the only person in the Uk who has had a similar experience. About 1 in 7 young people – or 15% – aged 11-15 in the UK report to have been diagnosed with a long term or ‘chronic’ medical condition.

I would look any different out of  a crowd of students would I?

I’ve been battling a chronic pain condition since I was fifteen – about year 10 in educational terms. I take more injections and pills in a week than I can count and I’ve probably had more surgeries than Kim K and none of the booty to show for it.

Personally – I think the hardest thing for me was how I lost access to my education in the blink of an eye. I was always an extremely consciences student – in other words I was a massive geek – I’ve always loved learning and I always achieved good grades. But let’s not talk about maths?

When I fell in I was attending one of the best schools in Northern Ireland and even they weren’t sure what to with pupils in situations like me.

Let me give you a little background on my ‘educational journey ‘ as my lecturers call it. I grew up on the Welsh border attending the same amazing primary school as my sister. I was a huge bookworm the whole way through my childhood and loved learning and my friends.

The school were wonderful at liaising with my parents about my health as I was in and out of hospital at least once a year. I missed a lot of school but I maintained a high level of achievement due to the care and diligence from my teachers who never made me feel like I was different.

Our schools are not prepared or maybe they’re not educated enough on how these invisible illnesses can affect that 1 in 7 of their pupils. The average secondary school class in the UK has 21 students, , meaning that (on average) 3 of those pupils are fighting an invisible / chronic condition according to the WHO. Here’s a photo of the 21 girls in my year 9 class – on average 3 of us will have an invisible condition – mental or physical.

Continuing on my story, I moved back to the border of Wales from Ireland in 2013 and started at the local comprehensive. I would be repeating Y11 due to my health. On my first day my mum and I had a meeting with the head teacher.. During this meeting the head saw on my file that I had a letter from my consultant, detailing why I had not finished the former school year. As you can probably tell, I wasn’t expecting to hear from him ‘Are you sure you can do this? We had a girl like you join us before and she lasted three days.’  

This stigma is what ruins the confidence for pupils with chronic illness to even pursue their education when knocked down. But, I got those GCSE’s and started getting ready for my a levels.

Just today  the education committee in the house of commons released a report called ‘Forgotten children’ – which admits that british schools have a lack of expertise for how to intervene early to help pupils with complex medical needs .

By the time I was 17 I was pretty much bedbound due to my health and couldn’t attend college anymore. I, like many out there, was heartbroken from the idea of not going on to gain qualifications and going on to university all down to my health. So whilst researching options the idea of online distance learning came up. I received the materials and textbook online and could teach myself and learn around my health – logging on from home or hospital. My laptop became my classroom and I became my own teacher. Through hard work and perseverance, a lot of friend’s reruns and enough crisps to keep walkers going I did it and gained a place at university.

I personally asked over 500 students from online support communities (which are fab by the way, totally recommend) what they wish their schools had more of in regard to their illness and how schools could make education more inclusive and accessible to them. 6 main themes came up.

 1) Lenient
2) Accessible
3) Less afraid to ask
4) Understanding of chronic conditions
5) Open to listening to pupils
5) Educated about chronic conditions 
6) Understanding of chronic conditions

Barriers to education for those with chronic health conditions are not just in the curriculum. We need to identify the individual needs of every pupil. Educators and schools need to be flexible, understanding and kind.  You cannot expect 95% attendance from a pupil with chronic fatigue and you cannot expect a pupil with chronic pain to sit still for a whole morning.

One of my favorite things about education is the overarching push for improvement on part of everyone involved in the discipline. Just like medicine and our NHS is always changing and moving in a more holistic fashion so is the British education system.

Personally, I believe overall my journey has taught me a lot. I’ve learnt about so many exciting things happening in the education world right now that will help pupils like I once was. The new additional learning needs bill and Donaldson’s education reform in Wales for one. Education and Pedagogy is exciting and always changing

Before I end here today I just want to touch on how illnesses can be totally invisible. According to the WHO – 96% of chronic health conditions are said to be invisible – you wouldn’t be able to tell unless someone actually told you that a smile can hide so many things, including mental and physical conditions which are way more prevalent in society than we think.

15 years ago the idea of remote classrooms and learning in my own bedroom would have been doubted – but look at the success of it now.

To summarize today,  please just take away these three things;

  1. Education must be adaptable.
  2. Educators must always be open minded
  3. Teachers must be open to presenting the curriculum in a flexible way.

For education should never, ever be conditional on health.

Thank you.


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