Member Story - Parent of Beth, 16 from Scotland

So what do we do about school?

Our 15 year-old daughter Beth* has just reminded me that this Wednesday marks the first anniversary of (in her words) “the day my life came to a standstill”.

We have learnt a lot since that day in November 2020 when she suddenly crumpled at school and could barely get herself down the stairs.

Little did we know then that Beth would join a growing number of young people who would struggle to store up enough energy to take a shower, who would celebrate the odd occasion when they are well enough to walk round a shop, whose brains feel like porridge, whose bodies are intent on sleeping during the day and staying awake all night and who have got used to living with a fluctuating range of debilitating symptoms affecting every system in the body. Or that we would join a growing number of parents who spend endless tired evenings researching little-known conditions like POTS, PANS and MCAS, all of which are common with Long Covid, knowing that our GPs and paediatricians will probably have had little or no training in recognising these conditions.

Then there is schooling. Many parents on the LCK support group are understandably concerned about their children and young people missing school. Some children are managing it but find it exhausting, some manage on reduced hours and others are not able to attend at all. So how do we strike the right balance and where do we turn for support?

Perhaps in another year’s time I will be able to offer more experience. But for now here are a few of the things we are learning on this journey.

1. Health is wealth

For the first three months Beth stumbled on with school, initially part-time and then (because of the second lockdown) online. But she began to fall behind and her stress levels increased. During the mid-term break she felt a bit better, and we agreed to pause schoolwork to reduce her stress levels.

By then we could see that when she pushed herself beyond her energy limits she would pay for it later (we now know that this is Post-Exertion Symptom Exacerbation, a common symptom in Long Covid) and we were beginning to understand how critical the Stop Rest Pace approach is for people who experience PESE. Much of this is now captured in the more recent guide, A Cautious Tortoise, from Long Covid Kids.

In April the schools reopened and everyone else went back to school in person. This was difficult for Beth and we all had to reframe our assumptions. She began to accept that her education might not follow traditional routes and we talked about there being “no wrong path” and that school is not the only place to learn. We all agreed that the first priority must be to give her body the best chance of recovery.

2. Do your own research

Since then we have kept in close contact with the school. We are grateful that they have been very accepting of Beth’s illness and have agreed with us that health comes first. They have made no assumptions and have allowed us to take the lead in determining what is best for her.

Equally we have found that this is not an everyday scenario for the school. We have had to work hard to help them understand the nature of Beth’s condition and how it affects her. Now, in partnership with the school and the local authority, we are beginning to put together a formal plan for Beth’s learning. This is guided by our own efforts to understand the relevant legislation and guidance, our own research into what works for young people with this kind of condition and Beth’s own input into what she feels would work for her.

In getting to this point we found that it was time well spent to inform ourselves of the legal frameworks and guidance that the schools have to follow.

For example we found it helpful to understand the 2010 Equalities Act, and in particular the duty to make reasonable adjustments for a pupil with a disability. (The Equality and Human Rights Commission is a good source of information on this.) Under the Act, a pupil has a disability if they have a physical or mental impairment that has a long-term and substantial adverse effect on their ability to carry out normal duties. This is most certainly the case for Beth. This means that both the school, and if necessary the exam board, has a duty to consider making reasonable adjustments to help remove any substantial disadvantage brought about by her disability. This might mean, for example, that she is assessed differently as she would struggle to be examined on a whole year’s work in one go – or even to concentrate for the length of a normal exam.

We also found that here in Scotland, where we live, if a pupil needs more or different support to what is normally provided to a pupil of the same age, the school should work with the pupil and their parents (if under 16) to understand what help they need and to put in place appropriate supports or adjustments. They do not need a medical diagnosis to be eligible for this. (For a useful guide, see Additional Support for Learning: a guide for parents and carers and other guides from Enquire.) We also discovered that if the pupil is unable to attend school due to ill-health, the local authority must put in place provision to allow them to continue learning while they are absent if they are well enough to do so – and that this should be in place within 15 working days of continuous absence or 20 working days of frequent absences.

Having worked through all of this in discussion with the school we are now working positively towards putting place a learning plan, led by what Beth herself feels she can achieve just now. In her case this is likely to involve working towards a qualification in a small number of subjects, at a pace she can manage, using remote learning technology and with the support of the school.

3. Make the most of support networks

This past year has been a huge journey into the unknown. Without the help of peer support groups, including Long Covid Kids, and the wealth of information that is now accessible online, we would have floundered. It can be an isolating experience. I would encourage anyone in this situation to seek out support, not only from family and friends but also from others in a similar situation. There is no substitute for groups such as this as a place to share practical information and advice, to seek and offer support and reassurance, and to celebrate the positives together too.

*Not her real name.

Thank you to Beth and her parent for sharing their story so beautifully. If you would like to submit your own experiences of Long Covid in children, please email submissions and photographs to admin@longcovidkids.org. Anonymous submissions are always welcome.

LongCovidKids.org is a UK based international charity supporting and advocating for families, children and young people living with Long Covid. Our story started with a short film on the long-lasting symptoms of Covid in children.

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