Learning Disability Today
Supporting professionals working in learning disability and autism services

Charities call for more social support for people with epilepsy

A coalition of epilepsy charities and organisations has produced a new toolkit to enhance social support for people with epilepsy.

Epilepsy can have a significant impact on quality of life, yet social support and outreach is not available in all areas of the UK. The toolkit, funded by the Scottish government, therefore aims to improve and expand social support for people with an epilepsy diagnosis in order to better the lives of people with the condition.

The impact of epilepsy on quality of life

Epilepsy is one of the most common serious neurological conditions globally, with around 626,000 people affected in the UK.

The condition is common among people with learning disabilities, with around a third who have a mild to moderate learning disability having frequent seizures.

People with epilepsy often have co-morbidities, and a European study of people with epilepsy found they had higher rates of high cholesterol, type 1 diabetes, osteoporosis and migraine than control groups.

They are also more likely to have poor mental health (including mood and anxiety disorders), difficulty sleeping and some impairment in cognitive function and memory. Studies also show people with epilepsy find it more difficult to find and stay in work, with people in the most deprived areas in the UK twice as likely to have epilepsy as those in the least.

The importance of social support for people with epilepsy

Commissioning social support for people with epilepsy can make a significant difference to people’s quality of life and wellbeing, as it recognises that epilepsy has an impact on an individual beyond the occurrence of seizures.

Types of social support vary, but it often includes providing a person with resources and knowledge and developing skills and confidence to live well and safely with epilepsy and self-manage their condition. Other types of support include:

  • Peer support meetings and activities, hosted by a support worker
  • Epilepsy self-management courses, delivered online or in person
  • One-to-one support from a support worker, or through phoneline services
  • In person or online counselling accessed through an epilepsy support organisation.

While social and clinical support should remain separate, they can also complement each other as part of a joined up approach.

Providing both types of support not only benefits the patient but can also save the health service money, as costly interventions at later stages of the condition can be avoided.

The toolkit outlines further context and information on why commissioning social support is so vital for people with epilepsy, as well as explaining how health leaders can begin to commission these services in their local area.

The need for more holistic care and support

Jason Leitch, National Clinical Director of The Scottish Government, said: “The evidence tells us that people whose epilepsy is not controlled will have poorer outcomes than the rest of the population – they are less likely to have a job, more likely to be socially isolated, more likely to have mental health problems and will usually have higher mortality.

“However, where people can access a supportive environment, together with the appropriate clinical input, then outcomes will improve. That is why this resource is so helpful. It outlines the case for providing more holistic care and support and encourages partnership between Health Boards and Local Authorities to work with the rich tapestry of third sector providers to deliver holistic support for people with epilepsy.

“Service provision in Scotland just now is uneven – but if we can encourage collective action, we can ensure that everyone with epilepsy in Scotland will receive the right support at the right time.”

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