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.