COVID-19 Virus

#BeyondCovid – Impact of COVID on people with epilepsy

Our Policy Assistant, Anna Telfer, provides results of our COVID-19 has been affecting people with epilepsy survey and how important it is to consider the varied impacts of restrictions lifting.

COVID-19, the lockdowns and restrictions, and the associated burdens of the pandemic have significantly affected our physical and mental health and wellbeing.

While some of us are learning to adapt to the additional pressures of day-to-day life and await the lifting of restrictions with enthusiasm, for many, the impacts of the pandemic are far more enduring.

It is vital we take time to assess the impacts of the pandemic, looking at how it has, and continues to, impact people with epilepsy.


Recognising the impacts on physical and mental health

Our survey of 70 people with epilepsy, conducted in April 2021, revealed the pandemic had affected the epilepsy of 57% of respondents, with 44% seeing an increase in seizure activity.

Increased seizure activity not only affects an individual’s physical health, but can impact many aspects of their life and lifestyle.

Moreover, feelings of anxiety, stress, and isolation have impacted people with epilepsy, and for some, this has affected their seizure control.

In our survey, 80% of people with epilepsy said that COVID-19 has impacted their mental health and wellbeing.

For some, these changes in physical and mental health as a result of COVID-19 will not be fleeting.

Attention must be given to people with epilepsy to ensure support is available to promote healthy recovery from the pandemic.


The importance of specialist support

Despite the palpable impacts of the COVID-19 pandemic on people with epilepsy, 44% of people with epilepsy have experienced specialist appointments being cancelled during the pandemic, with 21% saying they have had support services stopped or cancelled.

It is vital people with epilepsy are able to access specialist support as and when it is required.

These cancellations will not only affect people with epilepsy during the pandemic, but add additional pressures to the lengthy waiting lists for neurological services which existed long before the pandemic.

This is especially true for Epilepsy Specialist Nurses, with many of them being redeployed to other COVID-19 related duties during the pandemic, further pressuring their already overstretched capacities.

Action must be taken to ensure the impacts of the pandemic do not shape the quality of timely access to specialist care for people with epilepsy in the long term.


Emerging from the pandemic

 These issues both highlighted and deepened by the pandemic are not going to be solved by the lifting of restrictions.

With many specialist appointments being cancelled and others being conducted either over the phone or virtually, there is a large population of people with epilepsy who are missing out on vital clinical support.

Moreover, as the restrictions continue to be lifted, feelings of anxiety of returning to ‘normal’ are becoming more common.

Whether it be fear of contracting COVID-19, anxiety of returning to social situations, or the fear of changing routines and busier schedules affecting seizure control, it is important to consider the varied impacts of the restrictions lifting.

If you would like support as we emerge from lockdown restrictions, please call our helpline 0808 800 2200.