Elpitha Polymerou is 17 years old. She’s in the final year of sixth form and has her sights set on being a doctor. Like all teenagers, she faces barriers: the stress of applying to university, the pressure of performance in exams and dealing with the expectations of those around her.
However, on top of managing these things, there’s another factor that affects Polymerou every single day: two years ago, she was diagnosed with coeliac disease. This means she suffers from fatigue and gastrointestinal issues, which at home, are easier to manage, but at school, can be much more difficult to do so.
She isn’t alone in this. While there isn’t data on how many students have chronic illnesses across the UK, looking at individual conditions can reveal the scale at which students are impacted. For example, it’s estimated that over 100,000 children and young people have epilepsy while up to 1 in 100 teenagers may have postural orthostatic tachycardia syndrome, a condition that affects blood flow.
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Of course, many of these students will have had support from doctors and specific charities, and therefore will already know what works best for them in terms of management. But given how much their education can be affected, how aware are their teachers? Do they understand what the conditions are, and how they can present themselves in the classroom? Do they know how to best support these students? Perhaps not, says Polymerou.
“It is often quite hard for people to understand how chronic illnesses can impact everyday life, the same is often the case with teachers as well,” she says. “Teachers should be offered training in terms of how to deal with students with chronic illnesses in the best possible way.”
Of course, there’s no one magical route to understanding chronic illnesses. Finding information from a reliable source - such as a charity that raises awareness of the illness - can be really helpful. Some, like Action for M.E., Tymes Trust or Together for Short Lives, even offer guides specifically for teachers.
But while research or drawing on experiences with past students can be useful, the impact of chronic illness will be unique for each person. Inconvenience for one person may be debilitating for another, and this can vary day by day. Some days students will be able to participate in learning as normal, others they will struggle to get out of bed.
Equally, not all illnesses are visible. Dr Lesley Kavi is the chair of PoTS UK and she says it’s important that teachers consider their own assumptions about how chronic illnesses may manifest.
“Teachers need to remember that not all illness is visible - children can be very unwell or disabled by their illness and yet look healthy. This is especially true for conditions that cause profound fatigue,” she adds.
So once a chronic condition has been brought to their attention, what should teachers do to ensure the student in question is properly supported and has the same opportunities to succeed as others?
1. Ensure all plans are kept up to date and available
Many students with chronic conditions will have an individual health care plan (IHCP), and it’s crucial that these are made in consultation with students and their families. This will vary based upon the student’s age - it’s likely an older student will participate more in the process. Many charities offer templates for these based upon the typical needs a student may have. These make great starting points but can only truly support the student once it has been individualised. Once created, these should be reviewed at least annually.
James Cooper, head of public affairs and policy at Together for Short Lives, a UK-wide children’s palliative care charity, says that the ultimate aim of these plans should always be to put the child at the centre.
“The plans need to be mindful of what the individual needs, as children who need palliative care should be able to access education,” he says.
For children who are receiving palliative care, an advanced care plan may also be needed. This will be produced by medical professionals in conjunction with the child and their family, but Cooper says that schools should take care to be prepared for the eventuality of death. “Schools can provide an important sense of normality in what can be a very turbulent and fluctuating time,” he adds.
2. Check your reasonable adjustments
Many chronic illnesses and long-term conditions are classed as disabilities under the 2010 Equality Act. As such, reasonable adjustments are required when needed and these will vary for each student.
Their plans may outline reasonable adjustments which are required for all lessons. However, it’s worth considering whether your lessons have any unique elements which might have been overlooked. For example, teachers who prefer physical learning - getting students up and out of their chairs - may exhaust someone who suffers from fatigue.
However, this doesn’t just apply to physical activity. Some chronic illnesses can cause fatigue, dislocations or other physical symptoms which make notetaking hard - being sent copies of slideshows or lesson plans in advance can be really helpful here.
The best route to making lessons accessible is to speak to students who risk missing out to discover their individual needs. Becky Kilgariff, head of information, support and programmes at the Cystic Fibrosis Trust, says that confidentiality is important. “Some may be very open about cystic fibrosis, but please don’t assume that their classmates, friends or even close friends, know about their condition,” she says.
3. Consider where chronic illness may appear in the curriculum
From religious studies to biology, it’s likely that chronic illness - and disability more widely - will appear in some form. For students with the conditions discussed, this can be unexpected and uncomfortable. Here, Kilgariff urges teachers to exercise caution.
“Cystic fibrosis, for example, is often discussed in schools when teaching about genetics and genetic conditions and sometimes this lesson can be difficult for a young person with the condition,” she adds.
It’s therefore important to face this proactively. Consider where chronic illness could feature and how this can be approached sensitively to help create a more inclusive environment.
4. Consider the impact of attendance
Chronically ill students will inevitably have higher rates of absence than their peers: they will have a lot of medical appointments to attend, and are likely to suffer from “flare-ups”.
Kate Conroy, children and families officer at the Children’s Liver Disease Foundation, says that they may also need to stay away from school when there are bugs and viruses around. “Often, children will be particularly susceptible to other illnesses, this is particularly the case for those children who have had liver transplants and are therefore immunosuppressed,” she says.
This doesn’t mean, however, that they should miss out on rewards and experiences their peers can benefit from.
Julie Thompson is the information manager at Guts UK Charity, who are committed to fighting all digestive disorders - and she says that children should be able to, as far as possible, participate in the full school experience to enable them to reach their full potential.
“Children with digestive disorders who need time off school during flares of symptoms should not be excluded from attendance awards, or excluded from school trips due to poor toilet access or safe meal provision,” she adds.
Therefore, Thompson says, teachers should avoid rewards purely based on attendance, as missing out in situations like these can lead to students with chronic illnesses becoming socially isolated.
Teachers should also ensure that absences are recorded correctly to avoid unauthorised absences causing concern. And of course, provide material from lessons as soon as possible to enable students to work whenever they feel able.
According to Conroy, teachers should check in each week with children who are unable to attend school physically. “Schools are getting much better at setting up online learning but a ten-minute call once a week can go a long way to ensuring that a young person still feels a part of their school community,” she says.
None of these things are easy - and they all require teacher time and resources - however, perhaps Polymerou puts it best: “A more inclusive approach would help chronically ill students to work to the best of our abilities.”
