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COVID-19 update from ERUK Chief Executive Maxine Smeaton

A message from our Chief Executive, Maxine Smeaton, on how ERUK is managing the impact of COVID-19:

As you are no doubt aware, many charities have been severely impacted by Coronavirus and sadly some have even closed. We at Epilepsy Research UK have also been affected and I therefore wanted to provide you with an update both on our situation and that of the epilepsy community.

Impact of the pandemic on the epilepsy community

The pandemic has had an adverse impact on the epilepsy community in many ways:

  • People with epilepsy have experienced more seizures due to increased stress, loss of sleep and high fevers;
  • Access to medicines remains a constant concern, as does timely access to specialist epilepsy nurses and neurologists; and
  • Waiting times for epilepsy surgery and video telemetry have increased substantially. This means people with uncontrolled epilepsy are at an increased risk of SUDEP.

From a research perspective, there were a number of significant innovations on the cusp of translation which will now be challenged due to funding and collaboration issues. This will impact research into epilepsy globally and we are looking at around a two-year setback. In many cases, research has been suspended due to laboratory closures and clinicians redeployed onto front-line services. It will be challenging to get some areas of research back up and running and the recruitment of PhD students will be more difficult as a large proportion comes from overseas.

Impact of the pandemic on Epilepsy Research UK

In 2019 we embarked on an ambitious strategy to grow our impact and reach. We were in the privileged position of being able to do this following two exceptional legacies in 2018 that enabled us to safeguard our commitments to the 2020 and 2021 annual grant rounds. We have invested in innovative projects, fellowships and the commissioning of research in collaboration with other epilepsy and associated condition charities. We have also committed funds to capacity-building activities such as the development of PhD Hubs and our internationally renowned Expert Workshop programme.

To support the development of strategic funding partnerships we have been working on identifying the gaps in research and investment in epilepsy. We know that the NHS spends £1.5 billion on epilepsy services – we believe that research-driven diagnostics and treatments are the only way to support improvements in care for people with epilepsy. We are also investing time to work directly with people with epilepsy to develop priority areas and ensure we provide both help for today and hope for tomorrow.

But the outlook for fundraising is severely challenging. Currently, all mass participation and community fundraising events have been postponed or cancelled, whilst trusts and foundations have diverted their funding programmes to coronavirus-related activities.

Seizures haven’t stopped, so neither will we

In order to continue driving and enabling vital investment in research, we need to find new ways to secure support and income.

We are therefore looking to our community for help. This may be in the form of a donation now, or a gift for the future through a legacy in your Will. Or perhaps you able to share your skills, experience or contacts with us to help drive our strategy? We know that many organisations and individuals are more open to working with charities at this time, either to fundraise, offer expertise or raise awareness.

Now, more than ever, we need to prepare for the uncertain times ahead. We welcome any contributions you are able to make, or any advice or ideas you are willing to share. If you are interested, please just email me and I will be pleased to arrange a telephone call or virtual meeting to discuss this further.

Thank you for being part of this powerful community, working together to achieve a life free from epilepsy.

– Maxine Smeaton, July 2020

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