COVID Inquiry – Every story matters

Published: June 19 2023
Last updated: June 19 2023

The government has just launched the latest part of the COVID-19 Inquiry – Every Story Matters.

Every Story Matters is an opportunity for everyone to contribute to the UK Covid-19 Inquiry.


Epilepsy Action submitted evidence to the inquiry in December 2022 which gave the charity the opportunity to highlight the impact the pandemic had on people with epilepsy.

But now is your chance to have your voice heard and share your experience. We would like to encourage you to share your experience of the pandemic to inform the UK Covid-19 Inquiry at

Please do let us know if you do share your experience with the Covid-19 Inquiry by contacting us on


A quick overview of what we found and said

During the pandemic Epilepsy Action asked people with epilepsy and those healthcare professionals working with epilepsy to share their experiences in the access to and provision of epilepsy healthcare services. The results were also submitted as part of the evidence to the COVID Inquiry.

This included the following findings:

  • The most immediate impact of the pandemic for many people with epilepsy was access to epilepsy healthcare services. We asked whether people had been able to contact local epilepsy services if they needed them, and only 55% of respondents said they had.
  • Many face-to-face appointments were cancelled or rearranged and replaced as remote consultations using phone or video. Some people with epilepsy have been diagnosed during the pandemic, some without ever seeing a specialist clinician in person. Others have had tests or procedures that cannot take place remotely impacted by the pandemic.
  • When asked how planned appointments had been affected, many respondents indicated that they had been offered and attended virtual appointments by telephone, with no face-to-face availability to discuss their epilepsy. Only 11% of respondents had been offered or had a video appointment.
  • Some respondents who had telephone appointments said they would have preferred a video appointment. The responses highlighted remote consultations to be adequate or even beneficial in the context of COVID 19 and managing their epilepsy. Others found that remote consultations, particularly telephone consultations, presented some additional challenges for individuals.



Given the experiences we heard from people with epilepsy, we have called on the Department for Health and Social Care, and NHS to:

  • Ensure that people with epilepsy have a choice when offered remote consultations, including telephone or video. That an offer of a face-to face appointment be made available on request, in particularly for people with additional requirements. That all people with suspected first seizures be prioritised for face-to-face appointments and that ongoing support is fully available.
  • Access to timely in-person tests and procedures be maintained wherever possible.
  • Establish clear processes for the rearranging of in-person tests and procedures at pace, establishing additional capacity, and providing advice and support for those affected.
  • Ensure access to an epilepsy specialist nurse adviceline service, contactable by telephone and email as a minimum, with clear procedures to respond and follow-up.
  • Supporting children and young people with epilepsy is planned for and includes maintaining on going medicine review and an available paediatric advice helpline service.
  • Involving people with epilepsy and epilepsy healthcare professionals in planning for restarting and delivering epilepsy health services.
  • Use the research findings and academic centre recommendations as submitted to the Inquiry to support people with epilepsy in managing their epilepsy – as we have already done with Professor Markus Reuber at Sheffield University.

These recommendations were part of the December 2022 submission of evidence to the COVID Inquiry and be part of the wider lessons learned.

We would like to actively encourage you to share your experience of the pandemic using the following link –