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!
#StudentSeptember 2023
Epilepsy Scotland launched their annual month-long campaign, #StudentSeptember, to increase awareness of epilepsy in universities and colleges across Scotland.
The #StudentSeptember campaign made universities and colleges in Scotland aware of epilepsy and the impact it can have on someone’s learning and encouraged them to undertake appropriate training to make sure students with epilepsy are properly supported and that staff are equipped to deal with someone who is having a seizure.
Many students with epilepsy feel there is a lack of understanding about epilepsy and varied levels of support for them during their studies. This is why the campaign worked to increase understanding and awareness of what support is available to students with epilepsy.
Find out more about our campaign below.
Blogs
The #StudentSeptember campaign
Stories
Podcast series
Living with Epilepsy: The Student Experience episode 1: sleep, stress and epilepsy
Living with Epilepsy: The Student Experience episode 2: ADHD, OCD and epilepsy
Living with Epilepsy: The Student Experience episode 3: social support and epilepsy
#EpilepsyOnTheMind
In February 2023, Epilepsy Scotland launched a national survey seeking the views and experiences of people living with epilepsy and the impact the condition has on their mental health.
We received 718 responses to this national survey and have used the findings to compile a report on the impacts of epilepsy and mental health.
What the survey highlights is that so many people living with epilepsy – whether their seizures are controlled or not – are mentally suffering and need specific targeted support.
We have devised five recommendations that we are calling the Scottish Government, local authorities, healthboards, and all stakeholders to consider implementing.
Recommendations
Number 1: To increase the number of mental health-trained professionals (including counsellors) available to people living with epilepsy and to increase the level of understanding of epilepsy amongst those working in mental health services.
Number 2: To increase the number of in-person support groups for people living with epilepsy and their families across Scotland.
Number 3: For interested epilepsy charities and mental health charities to work collaboratively to create a strategy to improve the mental health of people living with epilepsy in Scotland.
Number 4: To ask the Scottish Government and local authorities to take steps to increase public awareness of epilepsy to the wider public for improved societal understanding of a complex neurological condition affecting many aspects of a person’s life. Any awareness campaigns should also seek to inform people living with epilepsy and their families of information and support available to them.
Number 5: To ask health boards across Scotland to consider steps for routine screening of mental health issues in epilepsy clinics with immediate referral to mental health support where required.
You can read the full report by clicking here.
If you would like support from Epilepsy Scotland with regards to any of the issues highlighted in the report, please call our free and confidential helpline on 0808 800 2000 or email contact@epilepsyscotland.org.uk.
Time to talk about epilepsy campaign
Epilepsy Scotland developed a campaign around epilepsy and mental health. We sought the views and experiences of people with epilepsy to help shape our campaign.
Your response helped us build the campaign around the needs of people with epilepsy. Our goal was to increase awareness of epilepsy and mental health and improve the resources available for people with epilepsy.
Mental health and epilepsy stories
Blogs
Mental health and epilepsy: Anxiety
Mental health and epilepsy: Depression
Mental health and epilepsy: OCD
Mental health and epilepsy: PTSD
It’s Time to Talk about Epilepsy
Podcast
#StudentSeptember 2022
We were thrilled be launch this year’s #StudentSeptember campaign. Throughout the month of September, we campaigned to increase awareness of epilepsy in further and higher education.
We created an exciting program of content for this year’s #StudentSeptember campaign.
We:
- Shared the stories of students with epilepsy
- Shared information and resources for students with epilepsy
- Launched a #StudentSeptember podcast series
- Shared blogs exploring topics including learning, mental health, and epilepsy
You can find our content below.
Blogs
- Celebrating the launch of our new #StudentSeptember campaign
- Ailsa’s steps to higher education
- Support for students
- Life beyond studying
- #StudentSeptember: Which type of education is more accommodating for epilepsy
- The role of a volunteer: Epilepsy Scotland’s University Ambassador
Podcasts
- Living with epilepsy: the student experience episode 1
- Living with epilepsy: the student experience episode 2
- Living with epilepsy: the student experience episode 3
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
- Epilepsy Scotland’s new campaign for epilepsy and employment in Scotland
- Working with epilepsy: What are my rights?
- Epilepsy and career: Bryan’s story
- Learn about your employment rights
- Talk Epilepsy Podcast – #EpilepsyAndEmployment.
- Epilepsy and career: Graham’s story
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
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