Young people with epilepsy report increase in seizures during lockdown

More seizures, more stress and appointments being cancelled are among the challenges faced by young people with epilepsy during the pandemic, the charity Young Epilepsy has found.

A new study from the charity underlines the difficulties posed by lockdown to the 112,700 young people with epilepsy in the UK - and the charity’s boss fears the impending recession could hit this group hard as they look to enter the job market.

Young people with epilepsy, and their families, have also told the charity that the opportunity to attend appointments remotely is helpful - and Young Epilepsy is urging the NHS to ensure virtual appointments remain an option wherever possible in the future.

Key findings from the study of nearly 300 young people with epilepsy and their parents and carers are:

• 30% of respondents reported an increase in seizures during lockdown - this may be related to a change in routine and lack of the usual support mechanisms
• The majority of young people with epilepsy report deteriorations in sleep (72%) and mood (63%) in lockdown - young people with epilepsy are four times more likely than their peers to suffer from mental health issues. Their parents and carers themselves also reported increased stress and anxiety
• Nearly a quarter (23%) also say that they've had clinical procedures or investigations cancelled during lockdown - in addition, 61% are more reluctant to go to hospital, with both issues likely to increase stress if it means a young person’s epilepsy going unmanaged
• Nearly a quarter (23%) say that they have had trouble getting medication during lockdown - respondents mentioned pharmacies not stocking their regular medication, having to drive further to get the medication or switch between brands or types of medication, while others were frustrated that existing difficulties in obtaining medicines had been exacerbated
• Most respondents (82%) say they worry that catching coronavirus would impact negatively on the frequency and severity of seizures - fever is a known trigger of seizures in some epilepsies, and one respondent said they had their first seizure in five years while suffering from Covid-19

As Young Epilepsy is aware from its work with young people with epilepsy and their families, this group already felt isolated and faced significant challenges even before the pandemic, including a higher likelihood of unemployment and mental health issues compared with the general population.

Lockdown has exacerbated the complex challenges which children and young people with epilepsy already face, and the pandemic is very likely to entrench some of those disadvantages. For example, just 34% of working-age people with epilepsy are employed, and many have co-existing conditions such as autism which create further barriers to work, meaning that the recession we’re already experiencing is a particularly bleak prospect for the young people we work with.

We are keen that in the lifting of lockdown and recovery from the pandemic, that the NHS and wider society learns lessons in how to provide the support to help these young people lead the life they want to live. Wider access to remote health appointments is one specific measure, as is the urgent rescheduling of any treatment or appointment postponed due to Covid-19 pressures”.

Mark Devlin, CEO of Young Epilepsy

Susanna Fantoni, who is aged 24, has autism and epilepsy, and is one of Young Epilepsy’s Young Reps, said: “Throughout this time I've had to postpone several appointments, and missed blood tests that I'm supposed to get every three months to make sure my phenytoin levels (my main antiepileptic drug) don't get too high and potentially put me in a coma. My meds, which were finally being ordered automatically by my pharmacy at the right time each month after a year of dose changes which confused everyone but me, are now messed up again with them giving me two months of some and not others.

“It's these small uncertainties and frustrations that add up and amount to the kind of stress that can cause a sudden peak in seizures. My seizure control has already dropped in the last month and the fear that it could continue to get worse with this ongoing stress is concerning - nobody wants to end up in A&E during a pandemic.”

New resource

In April, Young Epilepsy launched its ground-breaking digital platform, The Channel. This platform, co-produced with young people, was launched because the charity recognized that young people with epilepsy have complex and often poorly met needs - even outside of lockdown - and that there was an appetite for reliable, specialist information provided remotely. Content on The Channel, which has already been accessed by thousands of users, includes advice and guidance on a range of topics from health and wellbeing to the personal and social lives of young people with epilepsy - including staying healthy in lockdown, and issues around Covid-19.