Nicola Swanborough

It’s all about you - survey results

Thank you to everyone who took part in our survey – ‘It’s all about you’. Over 1,000 people completed the survey, including those with epilepsy and those affected by the condition.

The results of the survey are really valuable to the Epilepsy Society, helping to paint the landscape of epilepsy in the wider community, informing our work and the issues that we need to address in the coming years. Your views will give us a strong evidence base as we develop our strategic vision for the charity.

The top issues that people taking part in our survey were concerned or very concerned about were:

  • The stigma associated with epilepsy plus a lack of awareness and education (83% )
  • Lack of awareness of seizure first aid (83%)
  • New treatment options for epilepsy (76%)
  • Research into better diagnosis (75%)
  • Employment challenges faced by anyone with epilepsy (73%) 
  • Lack of transport for those who are unable to drive (69%)

Areas cited as being of greatest importance in improving the understanding of epilepsy and increasing support were:

  • The government (63%)
  • General public (55%)
  • Healthcare system (54%)
  • The workplace (53%)   

People told us:
“As a whole, I find the main issue with epilepsy is not the condition itself but the awareness of it and how people react to it, I have lost a couple of jobs because they claimed I was unsafe when i am on stable medication”

“Having a seizure whilst I am out by myself, would anyone stop to help? Would they know what to do even if they did?”

“Side effects of medication and reluctance of doctors to investigate problems resulting in there being many years of having seizures before getting a diagnosis and effective treatment.”

Campaigning for change

Top priorities identified by people as needing change through campaigning focused on the impact of epilepsy medication on people’s lives. This included side effects, risks posed during pregnancy and the impact of medication shortages. Unsurprisingly those taking part told us they would like to see more funding into research into epilepsy.


Research

Research is a key area of work for us at the Epilepsy Society with much of our research funded by our beneficiaries through challenges, cake sales, birthday fundraisers and direct debits.
On average, respondees believe that 24% of government funding into medical research goes to epilepsy. The actual figure is actually 0.3%.
92 % of  people said that more funding should be channeled into epilepsy to push forward the boundaries of discovery.

Areas identified as being of greatest importance for research were:

  • Understanding the causes of epilepsy with a view to eliminating seizures (78%)
  • Understanding the causes of Sudden Unexpected Death in Epilepsy in order to mitigate risk (77%)
  • Improved quality of life through treatment options, even if it did not lead to seizure freedom (75%)
  • Application of personalised treatment (64%).

And more than half of respondees would like to see more research into risks associated with anti-epileptic medication during pregnancy.

People told us:
“The only way to truly understand and overall combat epilepsy is to fund as much research and treatment as possible.”

“I have lived with epilepsy since the age of 12 . I’m now 65 and the knowledge about so many issues with drugs and not changing brands and side effects is paramount.”

Accessing healthcare

Three quarters of people feel that epilepsy care is falling behind that of other conditions such as Alzheimer’s, dementia, cancer and heart disease. 

Almost half of respondees say they do not have access to an epilepsy specialist nurse (46%), while over one third (38%) do not have access to a neurologist.

 

Chart showing access to current services

An overwhelming 88% would like to see a more extensive network of epilepsy specialist nurses across the UK. And 72% said they would like their GP to have better training in epilepsy so they could be of more support.

Alongside  this, three quarters (76%) of those who took part feel people should have better access to specialist epilepsy centres offering more advanced diagnostic equipment.

A worrying 43% of respondees were unaware that they could be referred to a specialist centre if their seizures were uncontrolled. In the 70+ age group, 78% of people knew there was a referral scheme, whereas this figure dropped to 55% among the 18-43 year olds.

When it comes to discussing different treatment options, a change of medication was the most likely option to have been considered, but still only 47% had had this conversation, with even fewer having explored other options such as brain surgery, the ketogenic diet or Vagus Nerve Stimulation.

Chart shows treatment options discussed with doctor

Helpline

Chart showing preferred options of communication for the Helpline
The survey showed that more people now prefer, or most prefer, to contact our Helpline via email (79%), compared  with 59% by phone, while apps and online chat are also popular choices.

Almost a quarter of respondees would like to see our Helpline open in the evenings – a popular choice for 25-34 year olds (42%) – and 20% at weekends.

Chart shows evening open times would be popular for our Helpline.