Ian’s story – supporting people during COVID-19

"We became increasingly aware of the isolation people with epilepsy were facing during lockdown."

“In early 2020, when COVID-19 started to take hold, we heard from our consultant team that increasing numbers of positive people were very sick in local hospitals and resources were being redeployed to help these people hit by the first wave.

We were busy and lots of people were awaiting an admission to our service. When COVID-19 arrived we decided to reduce the numbers of admissions to maintain a sustainable service should our team succumb to the virus.

Reducing numbers of patients was the right decision however it was difficult as we knew that there were many people who needed our service. Very quickly the situation escalated and we were asked to close by the Government and ready ourselves to assist in the effort to support the NHS.

For fourteen weeks we stood ready to help. We continued to provide some remote services via technology. We became increasingly aware of the isolation people with epilepsy were facing during lockdown. The pandemic was magnifying the experience that many people with epilepsy experience in regular times.

Amongst the long days of lockdown there is one story of hope for the future that will stay with me and a challenge to us all to help create a more inclusive society. It is of a person who pre pandemic who was alone, not connected with others, isolated in their own community and reliant on the benevolence of others. They are a person living with epilepsy which was having a significant impact on how they viewed themselves and their life options. During the pandemic there was a shift in line with the public narrative. They embraced the national spirit and community efforts to ensure that we looked out for and after each other. Carving a new role, checking on neighbours and running errands was the first tentative steps in redefining themselves from recipient to contributor and active citizenship.

For many people living with Epilepsy the isolation may continue. Our challenge post pandemic is to ensure that people are better connected, have their skills and contributions valued and above all receive robust services for their long term health condition.”

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