The recent COVID-19 (Coronavirus) pandemic is having a significant impact on the way in which we all live our lives. As the pandemic takes over the media, Government, services, and put restrictions on us because of the lockdown – these changes can have a serious impact across many different areas.
For people with epilepsy, how you access your healthcare teams and services may be very different, and your daily routines, epilepsy, wellbeing and how you look after your epilepsy might also have changed.
For people who have lost a loved one to epilepsy, these uncertain times can be impacting on your grief and bereavement in many different ways. And those who have not been bereaved by epilepsy simply may not understand the impact the COVID-19 pandemic is having on you.
For health professionals who help people with epilepsy, your services and ways of working may have changed dramatically, and you and/or your colleagues may be redeployed to COVID-19 services. Epilepsy services may also be facing increased pressure, or a large drop in engagement because of the pandemic & government lockdown.
SUDEP Action are concerned about the impact COVID-19 is having across the epilepsy and bereaved communities - leading to increasing risks, worsening wellbeing and more epilepsy-related deaths.
We are working with some of our leading experts to research these issues, helping us gain a better understanding that can inform our future work, so we can continue to help those who need it, support those who have been bereaved and do all we can to save lives now.
Find out more about our 3 research projects by clicking the links below:
Epilepsy Bereavement & COVID-19 - Survey for those bereaved by epilepsy
Epilepsy Risks & COVID-19 - Survey for people with epilepsy & carers
Epilepsy Risks & COVID-19 - Survey for health professionals
If you have any questions, concerns or would like to get involved in the project, you will find contact details at the bottom of each of the research pages.
If you can help SUDEP Action with our work in any other ways, we'd love to hear from you, so please do get in touch: [email protected] or 01235 772850.
This research was funded by SUDEP Action charity 1164250 (England & Wales) and supported by the Oxford NIHR Biomedical Research Centre, Newcastle University and the Epilepsy Deaths Register.
We are grateful to the following organisations for promoting this work , allowing for global reach: BAND Foundation, CURE, Dravet Syndrome UK, Epilepsy Action, Epilepsy Connections, Epilepsy Foundation America, Epilepsy Research UK, Epilepsy Society, Epilepsy Sparks, IBE, ILAE, Matthew’s Friends and the Neurological Alliance.