Update from Epilepsy Scotland CEO, Lesslie Young

 

Our Chief Executive, Lesslie Young looks back at our #EpilepsyIsMoreThanSeizures campaign for National Epilepsy Week.

The importance of National Epilepsy Week cannot be overstated.

It provides an opportunity to raise awareness of epilepsy in a huge variety of ways, nationwide campaigns, Parliamentary events, supporter receptions, fundraising events and bucket collections which have been the norm over recent years.

However, this year National Epilepsy Week went online with a campaign highlighting the issues that impact the lives of people with epilepsy in Scotland, alongside virtual collections.

 

#EpilepsyIsMoreThanSeizures

The aim of the campaign, based on feedback from 100 survey respondents, was to highlight one very important point: epilepsy is so much more than seizures.

Too often people wrongly assume epilepsy only affects the person, or their family, during a seizure.

A seizure is only one symptom of epilepsy and few have any knowledge or understanding of the vast array of other possible symptoms.

Some might present themselves as minor irritations, but some can and do have a huge impact on that person’s life.

Many of these symptoms are not immediately visible but that does not mean they are not significant. As a result, people might find it difficult to empathise with someone who has epilepsy the same way they might empathise with someone with a more universally known and understood condition.

EpilepsyIsMoreThanSeizures

Our survey respondents cited issues with memory, concerns over safety, anxiety, side-effects of medication and low mood as some of the other “symptoms” of epilepsy they live with every day. The impact of any one or combinations of these should not be underestimated.

There is another group of people who have epilepsy alongside associated conditions such as learning disability, autism and physical disability.

As a result, they need additional care and support. This additional support will be provided in the community, in their own homes or in residential settings, depending on their individual needs.

Therefore, we are closely following ongoing issues in the provision of social care in Scotland, that have been highlighted during the COVID19 pandemic.

 

Social care provision

No one could have been unmoved by the significant number of deaths in care homes during this crisis. I am sure we all welcome the promised review of the system.

However, we remain concerned about comments by local authorities, politicians, and journalists indicating the reduction in social care provision and support packages available.

Some have even hinted that this provision may disappear altogether in future such will be the pressure of financial constraint.

Social care provision can be vital to allow many people affected by epilepsy to lead independent, fulfilling lives, to attend education or work, or take on physical activities and attend social events safely. Things which most of us take for granted.

While we all continue to follow the news on the coronavirus exit strategy closely, we will have one eye on the topic of social care in Scotland, the provision and the available funding during and after lockdown.

In the meantime, I will take this opportunity to thank you once again for your generosity and support of Epilepsy Scotland. We need you to be able to continue to provide our services and to raise awareness of epilepsy and the impact it has on those affected, during lockdown and beyond.

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