Epilepsy Scotland conducts campaigns with the aim of raising awareness about various issues. We have campaigned to have epilepsy seen as a priority in the 2021 Scottish Parliament election, on Personal Independence Payment (PIP), for Epilepsy Specialist nurses, for National Epilepsy Week and much more!

Epilepsy and employment

Epilepsy Scotland commissioned research from the Scottish Centre for Employment Research at Strathclyde University.

The research found that epilepsy and employment is not well researched or understood in Scotland, the latest figures show just 36.9% of people with epilepsy in Scotland are in employment compared to 81.3% of non-disabled people.

Although attitudes have improved, the research found employers still have poor awareness of the condition and often have misconceptions around the abilities of people with epilepsy in the workplace.

Prevailing myths, stereotyping, and stigma associated with epilepsy may also deter people with epilepsy from disclosing their condition to their employer and benefiting from reasonable adjustments. To read the full research paper click here.

Following this research, we developed an employment campaign which aimed to increase awareness of epilepsy in the workplace and engage employers with information to better support people with epilepsy.

The campaign was launched at the Cross Party Group on Epilepsy where Professor Patricia Findlay, Director of the Scottish Centre for Employment Research presented the research. We were also joined by the Minister for Just Transition, Employment, and Fair Work, Richard Lochhead MSP, who listened to the presentation and provided an update from the Scottish Government.

As part of the campaign, we secured a Member’s Debate in Scottish Parliament. Alasdair Allan MSP led the debate on epilepsy and employment and there was cross-party participation from SNP, Scottish Conservatives, and Scottish Labour MSPs. You can watch the debate here.

Throughout the campaign, we published blogs on understanding the Equality Act and reasonable adjustments. We also shared the voices of people with epilepsy, in blogs and in our #TalkEpilepsy podcast.

More epilepsy and employment information can be found in our Occupational Health guide here and all of our blogs and podcast can be found below.

 

Blogs

Podcast

#StudentSeptember

Epilepsy Scotland launched a new month-long campaign to increase awareness of epilepsy in further education.

The #StudentSeptember campaign saw us share advice and information for students to help increase awareness of epilepsy and the impact the neurological condition can have on learning.

The campaign kicked off with the launch of our new student guide, an informative guide for students, offering practical advice and covering all aspects of student life.

We also launched a podcast and a series of blogs exploring graduates with epilepsy’s experiences as students and offering advice for current and potential students with epilepsy.

Epilepsy Scotland hosted a webinar on exploring epilepsy, the brain, and how this impacts learning. The seizures while studying webinar was open to all students with epilepsy, friends and peers, potential students, and people who work with students.

The aim of the #StudentSeptember campaign was to help students with epilepsy adapt to further education as easy as possible, support them throughout their time there, and increase the understanding of epilepsy amongst their peers and institutions.

 

Blogs

2021 Scottish Parliament Election

At the start of 2021 we launched our manifesto for the Scottish Parliament election. As this was the sixth Scottish Parliament election, we decided to make six asks of the next Scottish Government and elected MSPs.

Our six asks were:

1. A national epilepsy database
2. More Epilepsy Specialist Nurses
3. Invisible condition training for benefits assessors
4. Encourage employment in people with neurological conditions
5. Support neurophysiology in Scotland
6. Funded PhDs in epilepsy

Our manifesto received media attention in The National.

We used our manifesto when engaging with candidates. We lobbied 502 candidates, asking them to support our asks.

We sent our manifesto to the five main political parties in Scotland: Scottish Labour, the Scottish National Party, the Scottish Greens, the Scottish Conservatives and Unionists, and the Scottish Liberal Democrats. They all supported our manifesto and offered personal quotes/videos of support. Epilepsy policy commitments were also made in Scottish Labour’s manifesto.

Our manifesto campaign will form the base of our Parliamentary work over the next five years. We will draw on the connections we made throughout our campaign to influence the decision-making process and ensure better policy is made for people with epilepsy.

Dumfries and Galloway Nursing

Through our social media and clinical contacts, we became aware that families in the Dumfries and Galloway Health Board area were struggling due to the lack of paediatric epilepsy specialist nursing (ESN) support.

Dumfries and Galloway were the only mainland Scottish Health Board who did not have a paediatric ESN.

We got in touch with the local MSP, Joan McAlpine, to highlight the issue to her. She met with representatives from Epilepsy Scotland and families struggling in the area. After hearing the stories from families, she committed to working with Epilepsy Scotland to get the problem resolved.
Joan McAlpine wrote to the Cabinet Secretary for Health, Jeanne Freeman MSP, who pledged to investigate the situation. The Cabinet Secretary wrote to Dumfries and Galloway Health Board and asked them to work with Joan and Epilepsy Scotland to resolve the issue.

We are delighted that following several meetings, a paediatric and complex needs nurse is now in post in the area who provides this vital epilepsy nursing support to families. Epilepsy Scotland is currently providing funding to support the nurse through their epilepsy training.

We are committed to ensure anyone living with epilepsy in Scotland has access to specialist epilepsy nursing advice and support.

Get a grip on pip

Our campaign on Personal Independence Payment (PIP) was very successful and was well covered in the media.

Epilepsy Scotland researched PIP rates for people with epilepsy compared to other health conditions. We found:

  • Of those who previously received Disability Living Allowance (DLA) 54% were rejected for PIP when the new system was introduced
  • This was the second highest refusal rate and was double the national average
  • 65% of new claims from people with epilepsy were rejected
  • We also found that of the third who chose to appeal their decision, 78% were granted the benefit

These statistics indicated that people with epilepsy are significantly disadvantaged during the PIP process. We wanted to raise awareness about this injustice and try to make the process fairer for people with epilepsy.

We lobbied politicians and notified the media of our campaign.

We submitted an Early Day Motion which was supported by several MPs from across the political spectrum.

Our campaign was also featured in various news outlets namely, the Herald, the Guardian and the Daily Record.

We started a petition which had gained over 5,000 signatures from across the UK. It had also been supported and promoted by several notable MPs, including the leader of the SNP Westminster Group Ian Blackford as well as Mhairi Black.

We have built on the success of our campaign and are in regular contact with Scottish Government and the Social Security Scotland Agency about the new devolved benefits system. We are hopeful a fairer system will be developed in Scotland and people with epilepsy will not be discriminated against when accessing disability benefits.

National Epilepsy Week - #BeyondCoivd

COVID-19 has significantly impacted people with epilepsy. From cancelled appointments and loss of support to increased seizures, greater and more widespread isolation and deteriorating mental health.

Our #BeyondCovid campaign during National Epilepsy Week (24-30 May 2021) featured stories from people who have been impacted by the pandemic, blogs from our team to help people who’s mental health has suffered during the past year, how to cope with anxiety, and advice for people who have lost their job due to the pandemic.

The #BeyondCovid campaign also featured interviews with Epilepsy Specialist Nurses on how epilepsy services will look post COVID.

You can read our articles by clicking the links below.

Impact on delivery of epilepsy services

#BeyondCovid – Future of epilepsy services in Scotland
#BeyondCovid – Impact of COVID-19

Post COVID anxiety

#BeyondCovid – Post Covid anxiety
#BeyondCovid – How the pandemic has affected me

Job losses

#BeyondCovid – Employment benefits
#BeyondCovid – Facts every person with epilepsy looking for work should know

Mental health

#BeyondCovid – Improving my mental health

Impact on people’s epilepsy

#BeyondCovid – Impact of COVID on people with epilepsy

Loneliness

#BeyondCovid – Overcoming loneliness and isolation
#BeyondCovid – How check-in service helped me during the pandemic

Recovery from COVID

#BeyondCovid – Looking to the future

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