The cancelation of clinical procedures and a rise in seizures and stress are among the challenges faced by young people with epilepsy during the coronavirus pandemic, a leading charity has found.
A new study from Young Epilepsy has uncovered the difficulties experienced by young people with the condition in the UK throughout lockdown.
“Lockdown has exacerbated the complex challenges which children and young people with epilepsy already face”
Key findings from the study of nearly 300 young people, their parents and carers, saw 30% of respondents report an increase in seizures during the lockdown period.
According to the charity, this finding could be related to a change of routine and lack of usual support mechanisms.
Meanwhile, almost a quarter (23%) said they had clinical procedures or investigations cancelled during the pandemic, and 61% reported feeling more reluctant to go to hospital.
Both these issues were likely to increase stress if it meant a young person’s epilepsy was going unmanaged, the charity warned.
Young people with epilepsy also reported that they had trouble accessing medication during lockdown (23%).
Of those who said they had this difficulty, some claimed pharmacies had not stocked their regular medication, while others were having to drive further to get the medication they needed or switch between brands or types.
Some respondents also said they were frustrated that existing difficulties in obtaining medicines had been exacerbated by the pandemic.
In addition, the study revealed that 72% of respondents reported deterioration in sleep and 63% in mood.
Overall, most people in the study (82%) were worried that catching coronavirus would impact negatively on the frequency and severity of seizures, particularly as fever was a known trigger in some epilepsies.
The charity noted that one respondent said they had their first seizure in five years when they had Covid-19.
Young people with epilepsy and their families also told the charity that the opportunity to attend appointments remotely was helpful.
As a result, Young Epilepsy is now urging the NHS to ensure virtual appointments remain an option, wherever possible in the future.
The charity was concerned before the pandemic that this patient group already felt isolated and faced significant challenges, particularly around unemployment and mental health issues.
“It’s these small uncertainties that amount to the kind of stress that can cause a sudden peak in seizures”
Mark Devlin, chief executive of Young Epilepsy, said: “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.”
Moving forwards, Mr Devlin stressed the importance of remote appointments and rescheduling treatments that were postponed because of coronavirus.
“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,” he said.
“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.”
Susanna Fantoni, who is aged 24, has autism and epilepsy, and is one of Young Epilepsy’s ‘young reps’, said throughout the pandemic she has had to postpone several appointments and missed crucial blood tests.
She added that her medication had also been disrupted and “messed up again” during the lockdown.
“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,” said Ms Fantoni.
“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.”
Nursing Times has contacted NHS England for a response.