Chronic illness and education

Geoff Jones recalls his experiences of education as a child with severe chronic illness.

Access to education is often overlooked when considering chronic illness and social exclusion. Education is particularly relevant if those affected become ill during childhood. In today’s Britain, where a university education has arguably become the norm, those becoming chronically ill during childhood may find themselves placed at a significant disadvantage, adding to the societal exclusion already imposed through their physical disabilities.

I became ill aged 13 with glandular fever and was subsequently diagnosed with myalgic encephalomyelitis (ME). Over the next three years various attempts were made to provide me with an education, either via home tutoring or part-time attendance at school. Eventually I was sent to a comprehensive with a special unit for those with various medical conditions. Unfortunately, due to a lack of understanding of my condition, I experienced a major relapse and, as I reached the age of 16 shortly afterwards, the educational authorities (probably with some relief) ended their attempts to educate me.

Subsequently my health improved and being academically able with a particular interest in the sciences, I was keen to resume my studies. Unfortunately I discovered that for the post-16 year old, the authorities have no responsibility to provide an education, and in my case, refused to do so. Fortuitously, my luck changed due to my relocating to Cornwall (from Berkshire) where a more enlightened head of the local sixth form college, supported by the Cornish educational authorities, enabled me to study for a GCSE in English (I was still rather poorly) and subsequently A levels.

An important point is the role played by individuals in exclusion of the chronically ill. Rules and regulations in education and other spheres are theoretically comparable nationwide, but their implementation is not, being instead due to the individual(s) one has the fortune (or misfortune) to encounter.

On successfully completing A levels I was intent on going to university and was accepted by a few, but unfortunately my health had not kept up with my ambition. The Open University proved my saviour; with part-time courses, no time limit on completion of a degree (important as in some years I was too ill to study), and the ability to work and take exams at home, it could not have been more perfectly designed for the chronically ill. I initially completed a BSc in The Natural Sciences and recently graduated with an MSc in Medicinal Chemistry. This has enriched my life to an unquantifiable extent and enabled an engagement with various aspects of society, which would not otherwise have been possible, the confidence a decent education provides should also not be underestimated.

Unfortunately, in recent years the situation in education has worsened and those finding themselves in a similar situation are unlikely to benefit to the same degree. Systems have become stricter and less flexible. In Further Education, I was allowed considerable leeway concerning college attendance, often attending only a handful of lessons per term, while an invigilator was provided to enable exams to be taken at home: such flexibility would probably not be provided today. In higher education, Open University courses were free and there was no time limit on degree completion, whereas now courses must be paid for and degrees completed within 6 years. This would have made study impossible for me, and will make it difficult or impossible for many chronically ill today, excluding them from something that will enrich their lives and provide opportunities unavailable for those lacking an education.

The situation of the chronically ill and their exclusion from society should be taken into account when changes are made concerning the provision of education, ensuring such exclusion is not aggravated and that the chronically ill are not burdened with further obstacles in today’s society.

Geoff Jones (MSc) is a writer with lived experience of severe chronic illness since childhood. Geoff’s experience of ME began aged 13. He was too ill to attend school or manage home tutoring. As his health improved, he found accessing education was dependent on helpful and sympathetic personnel rather than on structures and regulation. Geoff’s main areas of concern are the lack of entitlement to education for children and young people with severe chronic illness and media misrepresentation of the disease.

One comment

  • Velda

    My child, now post GCSE this year faces same issues now. As a parent I am overwhelmed. My child having to choose colleges and sixth form where they appear to not have any clue about ME and how it affects young people and no support for home tutoring etc. Child support gets removed if not at school/college. Now they are 16 haveto reapply for PIP, and apply for EHCP plan (which senior school she attended did not suggest to us) to ensure some kind of package or social help network in place. We’re stuck in the mud here.

    When looking at Government website, there is not support for those test have been home schooled because of chronic illness and next steps, other than what normal healthy post 16 teenagers do. My teenager is EXCLUDED. Everything on Government website is so complex and overwhelming that it puts you off looking for help. The fiorms are so invasive, want so much evidence and are at times incomprehensible. All I wish for is my young teenager to get well first, then get further education. It is such a shame that support financially is not available, so these young people can take a year or two out to get well, and then take A-Levels at college. I’m so frustrated as a parent.

    Thank you for sharing your circumstances as I really understood you, and the tip for Open Learning/University is something we are considering. There is online learning post 16 but most are private an have to be paid for, e.g. Kings InterHigh famous for online learning, but this is only for the wealthy.
    There seems to be nothing in place for those kids who have great aspirations, extremely intelligent and want to go college, but held back due to mental or physical illness and finances. 19th July 2023

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