SUDEP Action

Making every epilepsy death count
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Epilepsy Risks and COVID-19 - Survey for people with epilepsy


Understanding how COVID-19 is impacting on people with epilepsy, their wellbeing & epilepsy risks

Living with epilepsy can be like walking a tightrope. How well you’re able to walk the tightrope can change over time, and the world around us can also impact on this. Sometimes the balancing act of managing your seizures is just right, but sometimes things can suddenly throw your epilepsy off-kilter. 

The current COVID-19 pandemic is impacting on us all - and can be challenging for people with health conditions like epilepsy - we'd like to better understand the impact this is having on you, your epilepsy, your wellbeing and how you're able to manage your epilepsy risks. 

As part of our new research project SUDEP Action & our research team at the University of Oxford, want to understand from those walking this daily tightrope how it feels to:

  • Live with epilepsy during the current COVID-19 pandemic
  • Manage different aspects of your epilepsy during day to day life
  • Take steps to reduce risks and live safely with epilepsy
  • Engage with health professionals about improving epilepsy care 

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Who can help us:

We’d love to hear from anyone living with epilepsy, or their main caregiver, including parents, guardians or support workers (UK or International). 

It takes just a few minutes – no more than 15. By sharing your information with SUDEP Action and our team of researchers, you can play a vital part in our COVID-19 Epilepsy risks project, helping us to better understand the challenges people with epilepsy are facing, both due to the COVID-19 pandemic and more generally; so we can take action to help people stay safe and live well with epilepsy during the pandemic and beyond.  

The information we gather during this important survey may also help our work as part of our 'Project Tightrope' research, which is looking at epilepsy risks & safety in the UK and local areas. 

 

People with Epilepsy - Complete the survey here

Caregivers of someone with epilepsy - Complete the survey here


Why is it important to understand the impact of COVID-19 on people with epilepsy?

SUDEP Action’s know that living with epilepsy can be risky. We aim to shine a light on some of the challenges people with epilepsy face in being able to live safely and positively with the condition. We know, sadly, too many people with epilepsy die each year because of their epilepsy, and that in many cases their deaths may have been preventable. We need this to change.     

21 people with epilepsy die suddenly each week (UK)
Nearly ½ are thought to be preventable

Our COVID-19 survey, and also our 'Project Tightrope' research aim to better understand what risks people with epilepsy are facing, and what support they have, helping them live well with the condition both during the COVID-19 pandemic & beyond.
By knowing what problems people with epilepsy face, we will better understand what can be done to help make things better – so more lives can be saved.

Having a better understanding of how COVID-19 is impacting people with epilepsy's every-day life, their access to services, their overall wellbeing and the risks they may face is really important at this time, especially if risks are increasing and people with epilepsy aren't able to access the help and support they need. .

Project Tightrope will run for a number of years, during which we aim to carry out different pieces of research:
Phase 1 – gather data on epilepsy services, risks and outcomes (including deaths) to understand what needs to change both in local areas and where possible nationally. Our COVID-19 surveys will help provide some of the data we need to collect. 

Phase 2 - test out existing tools and resources to see if we can improve things in local areas by changing local approaches to epilepsy care and risk management. We also want to make sure that where epilepsy deaths do happen, that steps are put in place to make sure the bereaved access help and support as soon as possible after their loved one’s death.

Phase 3 – hopefully, we can then start testing this model out in different areas around the UK, working towards nationwide change!

Further information:

To keep up to date on the progress of the project & to hear about SUDEP Action’s other research, projects, resources & information – sign up to our enews here.

To learn more about epilepsy risks and what can be done to reduce them – see our information pages and download our free, award winning EpSMon App to help you monitor your epilepsy.

Clinicians and researchers interested in the project are welcome to get in contact to see how they can support – please email jennifer.thorpe@sudep.org. Please remember the free award-winning SUDEP & Seizure Safety Checklist is also available to support vital epilepsy risk conversations.  

If you have questions or concerns about the project, please contact us:

SUDEP Action – [email protected] or 01235 772850

Lead Researcher – Dr Arjune Sen ([email protected])

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