Epilepsy Action sees a rise in demand for help during lockdown

A NATIONWIDE charity based in Leeds has been helping people with epilepsy to navigate their way through lockdown.
SUPPORT: Epilepsy Action depends on fundraisers for its income but the charity has been hit hard by event cancellations during lockdown.SUPPORT: Epilepsy Action depends on fundraisers for its income but the charity has been hit hard by event cancellations during lockdown.
SUPPORT: Epilepsy Action depends on fundraisers for its income but the charity has been hit hard by event cancellations during lockdown.

Epilepsy Action, whose headquarters are in Yeadon, has seen a big rise in demand for its information and advice services.

Its helpline has been busy answering thousands of questions during the pandemic, while its virtual groups and its forum4e message board have been helping to reduce social isolation.

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Epilepsy Action’s chief executive Philip Lee said: “Not everybody, but a lot of people with epilepsy, particularly if it is active and they are having seizures, can feel very isolated and excluded. Obviously with lockdown and the arrangements brought in because of coronavirus that sense of isolation is even more highlighted for them. So I think these virtual groups are absolutely critical.”
Epilepsy Action, which depends on fundraising for its income rather than grants, has managed to keep its vital services going despite losing an estimated £0.5m this year through cancelled or postponed events. But it has been “busier than ever” and no one has been furloughed.

Epilepsy Action’s Coffee & Chat groups are normally held in public. But virtual groups have been operating during the pandemic. Picture: Scott Higton/Mike NobleEpilepsy Action’s Coffee & Chat groups are normally held in public. But virtual groups have been operating during the pandemic. Picture: Scott Higton/Mike Noble
Epilepsy Action’s Coffee & Chat groups are normally held in public. But virtual groups have been operating during the pandemic. Picture: Scott Higton/Mike Noble

Mr Lee said its advice and information service saw some really significant spikes of interest at the beginning of lockdown in March and April. Some of its staff have been retrained and redeployed to help cope with enquiries.

Its helpline (0808 800 5050) also receives around a thousand calls a month, while its website, which gets around 150,000 unique visitors per month, is regularly updated with information and advice.

Mr Lee said demand for its e-learning courses had also quadrupled over the last three months. The most popular courses are for teachers on how to manage epilepsy in the classroom and how to look after people with the condition. Course registrations are currently running at just under 4,000 per month.

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He added: “It was astonishing to see that volume go up by quite so much and quite so quickly. But that is all about getting our information out to people, raising awareness about the condition and providing advice and information about it. Hopefully through that we are making people’s lives with epilepsy that little bit better.”

Philip Lee, the chief executive of Epilepsy Action, right, with Norman Lamb.Philip Lee, the chief executive of Epilepsy Action, right, with Norman Lamb.
Philip Lee, the chief executive of Epilepsy Action, right, with Norman Lamb.

Volunteers are also being trained how to deliver its virtual groups, which have replaced its coffee and chat face-to-face meetings that had to be suspended because of COVID-19 restrictions. They are also being taught how to deliver awareness raising sessions remotely to help employers and public services better understand epilepsy. Most of its staff are working remotely from home, while a small number continue in its covid safe office for essential work.

While no one is certain about when things will get back to normal, Mr Lee is clear about the path ahead.

He said: I think one of the most important things, from our point of view, is that things don’t stop because of what has been going on with coronavirus.

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“It has changed the environment and the way that we have to work but the fundamentals are still pretty much the same.

Epilepsy Action’s helpline receives around one thousand calls per month.Epilepsy Action’s helpline receives around one thousand calls per month.
Epilepsy Action’s helpline receives around one thousand calls per month.

There are still 600,000 people with epilepsy in the UK, for whom many are experiencing real difficulties and real problems. If anything, the coronavirus has probably highlighted the poor access to good quality services that a lot of people have to experience. It just focuses our need and the reason for us being here even that much sharper.”

HISTORY:
Epilepsy Action is marking its 70 anniversary this year.

Its chief executive, Philip Lee, knows lots about its history as he has been involved with the organisation for 32 years.

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He said the original organisation, the British Epilepsy Association, was set up by people with the condition.

They developed a range of support services for people affected by it and for professionals in the health care, education and social care sectors.

Mr Lee added: “Over that 70-year period we have been pretty much focussed on the same sort of thing in terms of looking to improve access to good quality health care services, but also raising awareness of epilepsy and looking to dispel a lot of myths and mysteries about the condition, which give rise to a lot of stigma against people with epilepsy and epilepsy itself.”

One of its roles is campaigning. A notable recent success was over the use of sodium valproate. Epilepsy Action has been campaigning since the 1980s to raise awareness of problems with the drug. Mr Lee said the drug was effective in controlling seizures but it could also cause birth defects. Recently the Cumberlege Review was published which found women were unaware about the known dangers of sodium valproate to unborn children.

For more information about the charity’s work see www.epilepsy.org.uk.

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