Epilepsy in Scotland, and the case for a National Epilepsy Action Plan.
The most common serious neurological condition in Scotland, and the case for a National Epilepsy Action Plan within the Long Term Conditions Framework.
This is an accessible HTML version of our MSP briefing. Other formats: unredacted PDF · redacted campaign PDF.
Foreword from our Chief Executive
I would like to congratulate you on your election to the Scottish Parliament. The early days of this new Parliament coincide with National Epilepsy Week, a fitting moment to begin a conversation that has been overdue for years.
Epilepsy is the most common serious neurological condition in Scotland, affecting more than 80,000 people. Despite this, outcomes for people with epilepsy remain uneven and, in many cases, unacceptable. Too many individuals still face delays in diagnosis, inconsistent access to specialist care, and avoidable risks to their health and lives. These challenges are not new. They have persisted for years without the level of coordinated action needed to resolve them.
Through my 18 years as Chief Executive of Epilepsy Scotland, I have seen both the progress that can be made and the consequences when epilepsy is not prioritised. I have also seen the growing evidence of inequality in outcomes, particularly for those living in more deprived communities, where the risks associated with epilepsy are often greater.
Here's the truth: there is now a strong case for a national, coordinated framework that sets clear expectations for epilepsy care across Scotland, improves consistency in access to services, and ensures that support is based on need rather than postcode. This includes timely diagnosis, regular review, access to specialist expertise, and clear pathways of care, alongside improved training, data, and public awareness.
The following briefing sets out the current challenges, the opportunities for reform, and the practical steps that can be taken to improve outcomes for people with epilepsy. The case for change is well understood. What is needed now is delivery.
The Scottish Government's emerging adult Long Term Conditions Framework, and its newly proposed complementary paediatric version, may, with requisite MSP scrutiny, support, and external expert guidance, provide the right architecture for this. Epilepsy Scotland is calling for a National Epilepsy Action Plan to be one of the first condition-specific workstreams under that framework, building on Scotland's existing strengths in paediatric epilepsy care, the Scottish Epilepsy Register, and the Psychology Adding Value Epilepsy Screening (PAVES) programme.
Epilepsy Scotland stands ready to work with you to achieve that.
Lesslie Young OBE
Chief Executive, Epilepsy Scotland
Why Scotland needs a National Epilepsy Action Plan
Epilepsy is the most common serious neurological condition in Scotland, affecting more than 80,000 people. More than two people die from epilepsy-related causes each week. People living in more deprived communities are more likely to develop epilepsy and to experience poorer outcomes, including earlier mortality. This makes epilepsy a public health issue, and a social-justice issue closely linked to poverty and inequality.
The Scottish Government's own Long Term Conditions Framework consultation paper recognises that conditions that are major contributors to the burden of disease, but which happen not to have a strategy, receive less resource than conditions which have a framework or action plan
(paragraph 24). Epilepsy is exactly that condition. There is no current national action plan or framework for epilepsy in Scotland.
80% of consultation respondents supported a balanced approach combining cross-cutting framework work with condition-specific action plans. Epilepsy, major burden, no current action plan, ready clinical infrastructure, is the textbook case for the condition-specific half of that balance.
Scotland already has world-leading paediatric Managed Clinical Networks. The Government's own consultation paper cites epilepsy as a Safe healthcare quality success, 100% of women with epilepsy in NHS Greater Glasgow and Clyde offered specialist appointment
due to the Scottish Epilepsy Register. The model works; a National Epilepsy Action Plan would make it national, consistent and resourced.
A National Epilepsy Action Plan, commissioned under the Long Term Conditions Framework, would set the template for how condition-specific protections can be built into the framework's cross-cutting approach, addressing a concern raised by many in the consultation, and one that an epilepsy action plan, with its existing clinical infrastructure, is well-placed to answer.
Aligned with Scotland's priorities
- Tackling health inequalities. Care based on need, not postcode.
- Reducing child poverty. Early support for children with epilepsy improves life chances.
- Preventative healthcare. Better diagnosis and review reduce avoidable harm and admissions.
- Innovation in life sciences. Drawing on Scotland's brain-health and digital tech sector.
Six pillars for a fairer, safer system
Epilepsy Scotland's proposed National Epilepsy Action Plan is built around six interconnected pillars. Together, they would deliver consistent, evidence-led care, and the policy infrastructure to keep improving it.
These six pillars map directly to the Long Term Conditions Framework's emerging themes, they are not a parallel ask. They are how epilepsy fits within the framework.
01. Minimum standards of care
Timely diagnosis, regular clinical review, clear referral pathways, and access to specialist expertise, including epilepsy specialist nurses, for every person in Scotland.
Success: Every person with a first suspected seizure receives timely specialist assessment, with national standards set through the action plan and reported publicly by NHS Board.
02. Paediatric care that builds on Scotland's strengths
High-quality, coordinated support from the moment of diagnosis, extending the world-leading paediatric Managed Clinical Networks and pathways already in place.
Success: Current gold-standard paediatric care protected, and the same coordinated approach extended to adult care.
03. National training standards
Recognised training across health, education and community settings, including the safe administration of emergency medication such as midazolam.
Success: Nationally recognised standards for consistent care and training across Scotland.
04. A boost for Scottish life sciences
Support for Scotland's neurolongevity, brain-health and mental-health technology sector to drive research, digital innovation, earlier intervention and better use of data to improve epilepsy outcomes.
Success: Scotland-led innovation in epilepsy diagnosis, care and prevention.
05. Better data, better decisions
Improved data on epilepsy outcomes, including epilepsy-related deaths, to strengthen service planning, prevention and accountability.
Success: Annual public reporting of epilepsy outcomes by NHS Board.
06. Public awareness and first aid
Greater understanding of epilepsy, seizures and seizure first aid across public services and communities, reducing stigma and improving safety.
Success: Reduced stigma and fewer avoidable 999 call-outs.
How you can help deliver change
As a newly elected MSP, you have a platform to improve the lives of people with epilepsy in your constituency or region. You can also help secure national change for the more than 80,000 people living with epilepsy across Scotland. Here are practical ways you can help us deliver a National Epilepsy Action Plan.
- Champion a National Epilepsy Action Plan within the LTCF. Publicly back the case for epilepsy to be one of the first condition-specific workstreams published under the Scottish Government's Long Term Conditions Framework, and raise it in Parliament, committee work and constituency surgeries.
- Ask Parliamentary questions. Press for published data on epilepsy diagnosis waiting times, specialist nurse provision and epilepsy-related deaths in Scotland.
- Bring us to Parliament to share our expertise. We can provide expert knowledge, testimony and ideas about epilepsy, the wider health and social-care system in Scotland, and practical ways to improve it, including in committee hearings.
- Visit Epilepsy Scotland. We'd be delighted to brief you on the issues affecting your constituents and arrange visits to our services.
- Support training in your constituency. Encourage schools, employers and community organisations in your area to take up our epilepsy awareness training.
- Help reduce stigma. Share our public-information messaging on seizures and first aid, particularly during Purple Day (26 March) and National Epilepsy Week.
Optional, additional action
Join or promote our upcoming events. Take part in, share or champion our upcoming events in partnership with Glasgow 2026 All In, and support individual fundraisers helping to raise awareness of epilepsy across Scotland. See the Upcoming fundraising section for what's coming up.
Take action in Parliament
Questions you can table this term. Adapt these to your style. Epilepsy Scotland can supply background data and refined drafting at publicaffairs@epilepsyscotland.org.uk.
Where to start
- Programme for Government debates.
- Health, Social Care and Sport Committee inquiry.
- Members' Business motions, debates and Parliamentary Questions.
To ask the First Minister
Q1.
To ask the First Minister how the Scottish Government will ensure that epilepsy is included in the first wave of condition-specific action plans under the Long Term Conditions Framework.
Suggested supplementary: The consultation paper itself recognises that conditions without dedicated policy attention receive less resource than those with a framework or action plan. Will the First Minister commit to a National Epilepsy Action Plan in this Parliamentary term?
Q2.
To ask the First Minister what assessment the Scottish Government has made of the postcode lottery in epilepsy care across NHS Boards.
Suggested supplementary: Will the First Minister commit to a National Epilepsy Action Plan, building on the Scottish Epilepsy Register and the Scottish Paediatric Epilepsy Network, to end this variation?
Q3.
To ask the First Minister whether the Scottish Government will commit to publishing annual data on epilepsy-related deaths by NHS Board, as part of the accountability mechanisms within the Long Term Conditions Framework.
Suggested supplementary: Better data is one of six pillars in Epilepsy Scotland's proposed National Epilepsy Action Plan. Does the First Minister agree that publishing epilepsy outcomes by NHS Board should be standard practice under the framework?
To the Scottish Government
Q1.
To ask the Scottish Government what plans it has to commission a National Epilepsy Action Plan as one of the first condition-specific workstreams under the Long Term Conditions Framework.
Suggested supplementary: Will the Cabinet Secretary commit to a published statement of intent in the next Programme for Government, and to meet Epilepsy Scotland to scope the action plan?
Q2.
To ask the Scottish Government what assessment it has made of inconsistent epilepsy specialist nurse provision across NHS Boards, and how a National Epilepsy Action Plan would address this.
Suggested supplementary: Will the Government meet Epilepsy Scotland to discuss the Reveal the Truth campaign's proposals on national specialist provision standards under the framework?
Q3.
To ask the Scottish Government whether nationally recognised training in midazolam administration will be embedded as part of an epilepsy action plan under the Long Term Conditions Framework.
Suggested supplementary: The campaign sets out a path to national training standards. Will the Government engage with Epilepsy Scotland on a National Epilepsy Action Plan this term?
A draft motion you can table
Lodge this as a motion in your name (or adapt). Members' business motions need cross-party support to be debated, Epilepsy Scotland can help circulate.
Title: National Epilepsy Action Plan.
That the Parliament notes that epilepsy is the most common serious neurological condition in Scotland, affecting more than 80,000 people; further notes that more than two people die from epilepsy-related causes in Scotland every week and that access to diagnosis, specialist support and ongoing review can vary by NHS Board and local pathway, with people in more deprived communities more likely to develop the condition and to experience worse outcomes including earlier mortality; recognises the Scottish Government's commitment to a Long Term Conditions Framework, with the first condition-specific action plans expected from March 2026; recognises Epilepsy Scotland's Reveal the Truth campaign in calling for a National Epilepsy Action Plan as one of the first such workstreams under the framework, to set consistent minimum standards of care across NHS Boards, expand epilepsy specialist nurse provision, embed nationally recognised training including in the safe administration of midazolam, and improve public reporting of epilepsy-related outcomes; commends the work of Epilepsy Scotland, the Scottish Epilepsy Register and the Scottish Paediatric Epilepsy Network; and considers that a National Epilepsy Action Plan would build on Scotland's world-leading paediatric Managed Clinical Networks, the PAVES programme, and would set the template for protecting condition-specific provision within the framework's cross-cutting approach.
If you sit on the Health, Social Care and Sport Committee
Engage the Committee Clerks to suggest a review on epilepsy and related neurological care issues. Raise epilepsy at evidence sessions on NHS provision, specialist nursing or health inequalities, and propose Epilepsy Scotland as a witness for relevant inquiries.
Other ways to act
- Submit written questions on specifics. Written questions get detailed answers in 10 working days, useful for waiting times, specialist nurse counts, or Board-level data.
- Request a constituency briefing or visit. We will brief you, your team or your local NHS partners on the case for change in your area.
- Lodge a Members' Business motion. If your motion gathers cross-party support, you can have it debated in the Chamber. We can help circulate.
- Secure a debate in the Chamber. Once a Members' Business motion has 18 or more cross-party signatures, request a slot from the Parliamentary Bureau via your Business Manager. Committee debates and Government time are other routes, we can advise on which is most winnable for a National Epilepsy Action Plan.
- Speak in the Programme for Government debate. Reference epilepsy and the National Epilepsy Action Plan in your PfG contribution, a public marker that's easy to follow up.
We can help. Need help drafting a question, motion or speech about epilepsy, public health or related issues? Reach out, we can lend a hand. Email publicaffairs@epilepsyscotland.org.uk.
Letter to the Cabinet Secretary
Below is a template letter you can send to the Cabinet Secretary for Health and Social Care, in your own name. Adapt the wording to your constituency and your style. Our public-affairs team can supply additional background or refined drafting on request.
The Cabinet Secretary for Health and Social Care
The Scottish Government
St Andrew's House
Regent Road
Edinburgh EH1 3DGDear Cabinet Secretary,
I am writing in my capacity as a Member of the Scottish Parliament, on behalf of the more than 80,000 people in Scotland living with epilepsy, many of whom are my constituents. The early days of this Parliament coincide with National Epilepsy Week, a timely moment to act on a condition that has been historically underserved.
Epilepsy is the most common serious neurological condition in Scotland. More than two people die each week from epilepsy-related causes. Outcomes remain unequal, particularly in our most deprived communities. Specialist nursing, training in the safe administration of midazolam, paediatric-to-adult transition, and the data we need to improve are uneven across NHS Boards. The Scottish Government's own Long Term Conditions Framework consultation paper acknowledges that conditions without a dedicated framework or action plan receive less resource than those with one.
I am therefore writing to ask the Scottish Government to commit to a National Epilepsy Action Plan as one of the first condition-specific workstreams under the Long Term Conditions Framework. This would build on Scotland's existing strengths in paediatric epilepsy care, the Scottish Epilepsy Register, and the Psychology Adding Value Epilepsy Screening (PAVES) programme, and would set the template for protecting condition-specific provision within the framework's cross-cutting approach.
I would welcome the opportunity to discuss this with you directly, alongside Epilepsy Scotland, who stand ready to support the design and delivery of the action plan at no cost to Government. I will also be raising the case for change in Parliament, through Parliamentary Questions, Committee work and the Programme for Government debate this term.
Yours sincerely,
[Your name]
Member of the Scottish Parliament for [your constituency]
MSP campaign toolkit
The MSP campaign toolkit is a set of editable Canva designs for LinkedIn, Instagram, X, Facebook and TikTok. Take a selfie holding the campaign poster, drop the image and your constituency name into one of the templates, and post with #RevealTheTruth.
How to use the toolkit
- Open the Canva template pack: canva.link/wp8prinf93z9bmn (also available via epilepsy.scot/msp-toolkit).
- Drop your selfie and constituency name into a template.
- Post and tag #RevealTheTruth and #NationalEpilepsyWeek.
Tag Epilepsy Scotland
- Instagram: @epilepsyscotland
- X: @epilepsy_scot
- Facebook: /EpilepsyScotland
- TikTok: @epilepsy_scotland
- LinkedIn: /epilepsy-scotland
What's on the templates
Each template carries the pledge "I pledge to back a National Epilepsy Action Plan", the word epilepsy in the headline rendered as a black redaction bar, a "Selfie with poster" placeholder for your photo, your name and constituency, the Epilepsy Scotland logo, and the campaign hashtags #NationalEpilepsyWeek and #RevealTheTruth. The templates come in cyan, deep-blue and brand-purple colourways.
National Epilepsy Week (18 to 24 May) is a timely moment to launch, but the campaign continues beyond it.
About Epilepsy Scotland
Founded in 1954, Epilepsy Scotland is the national charity for the more than 80,000 people living with epilepsy across Scotland. We exist to ensure their voices are heard, by services, by employers, by communities, and by government.
Our mission
To work with people living with epilepsy to ensure that their voices are heard.
Our vision
People living with epilepsy, free from stigma and discrimination, with access to high-quality care and support, valued and included in society.
What we do
- Free Helpline and Check-In. Our freephone helpline (0808 800 2200) supports anyone affected by epilepsy. Our Check-In service provides regular calls for people going through difficult periods.
- Wellbeing Support. One-to-one sessions, peer groups, counselling, relaxation classes, helping people manage anxiety, stress and isolation linked to epilepsy.
- Youth Service (ages 8 to 24). Youth groups, residentials, school workshops and one-to-one support helping young people thrive with epilepsy.
- Welfare Rights. Specialist benefits advice, application support, appeals and tribunal representation.
- Training and Awareness. Epilepsy awareness training for care providers, teachers and employers, including safe administration of emergency medication.
- Influencing. Working with government, parliament, the NHS and the public to drive better policy and reduce stigma.
What epilepsy is, and what it isn't
Epilepsy is a neurological condition characterised by a tendency to have recurrent seizures. There are over 40 different seizure types and many different causes, including genetics, stroke, brain injury and infection. For many people the cause is never identified.
Quick facts
- Epilepsy can develop at any age, but is most commonly diagnosed in childhood or after the age of 60.
- Around 1 in 70 people in Scotland live with epilepsy.
- Most seizures last a few seconds to a couple of minutes and stop without the need for emergency treatment.
- Epilepsy is associated with higher rates of mental-health difficulties, unemployment and premature death.
Common myths
- Myth: You should put something in someone's mouth during a seizure.
- Never. It can cause serious injury. Cushion their head, time the seizure, and stay with them.
- Myth: Everyone with epilepsy has flashing-light triggers.
- Photosensitive epilepsy affects only around 3% of people with the condition.
- Myth: Epilepsy is rare.
- It's the most common serious neurological condition in Scotland.
- Myth: People with epilepsy can't lead full lives.
- With the right management, most people work, study, drive and live independently.
The numbers behind the condition
The figures below are drawn from Public Health Scotland's most recent practice-level data, supplemented by published evidence on epilepsy outcomes. They show a growing population in need of consistent, high-quality care.
Headline figures
- 80,886 people in Scotland live with epilepsy (2025). Source: PHS GP prevalence, July 2025.
- 1 in 70 people in Scotland have epilepsy. Source: PHS GP prevalence, July 2025.
- Two or more epilepsy-related deaths per week in Scotland. Source: National Records of Scotland.
- Around 70% of people could be seizure-free with the right medication and care. Source: International League Against Epilepsy.
Four-year trend in diagnosed prevalence
| Year | People diagnosed |
|---|---|
| 2022 | 76,813 |
| 2023 | 78,544 |
| 2024 | 79,749 |
| 2025 | 80,886 |
A postcode lottery in prevalence
Diagnosed prevalence (the share of the population diagnosed with epilepsy) varies across Scotland's NHS Boards in 2025.
| NHS Board | Diagnosed prevalence |
|---|---|
| Western Isles | 1.7% |
| Orkney | 1.7% |
| Highland | 1.6% |
| Fife | 1.5% |
| Tayside | 1.4% |
| Greater Glasgow & Clyde | 1.4% |
| Lanarkshire | 1.4% |
| Grampian | 1.4% |
| Forth Valley | 1.4% |
| Ayrshire & Arran | 1.4% |
| Dumfries & Galloway | 1.4% |
| Borders | 1.3% |
| Shetland | 1.3% |
| Lothian | 1.2% |
Voices from those we support
Each year Epilepsy Scotland's services reach thousands of people across Scotland. The voices below are drawn from those we have supported through our Helpline, Wellbeing Service and Check-In Service, and they show why a national, coordinated approach to epilepsy matters.
I feel much more supported and knowing that the Helpline exists helps to reduce my anxiety around my epilepsy. The Epilepsy Scotland Helpline staff listened to the problems I was having and facilitated counselling and support for me. Their empathy and support helped me to find some positivity and determination to live a good life despite my epilepsy.
— Dave, who contacted the Epilepsy Scotland Helpline
My mood has improved, and I've noticed a reduction in my seizure activity.
— A participant in our Adult Wellbeing Service
Having the support is wonderful when someone understands the impact epilepsy can have on mental health.
— A user of our Check-In Service
Quotes published by Epilepsy Scotland (service-user stories and Adult Wellbeing Service report).
Upcoming fundraising
National Epilepsy Week events with Glasgow 2026 All In
Event 01: Breaking Barriers, Resilience on the Global Stage
Tuesday 19 May, 12:30 to 14:30. A panel discussion with four world-class athletes talking honestly about drive, determination and what it takes to perform at the highest level while living with epilepsy. Tickets include a post-panel networking session.
Hosted by Kieron Achara MBE, with Stephanie Inglis, Katie Ford, Annie Brooks and Dai Greene. Venue: 200 SVS Conference and Events, Glasgow. RSVP via Eventbrite.
Event 02: Let's Get Quizzical, 1980s Quiz Party
Wednesday 20 May, 18:00 to 21:00. A 1980s and Commonwealth Games-themed quiz party at Berlinkys, hosted by actor Tom Urie (River City) and fitness influencer Starboy Squire. Big hair, big tunes, big prizes, and Tom on the turntables all evening.
£20 per person, teams of up to 6, welcome drink, 1980s fancy dress encouraged. Venue: Berlinkys, Glasgow. RSVP via Eventbrite.
Both events are part of the Glasgow 2026 Commonwealth Games All In programme.
Individual fundraiser: Caitlin Andrew, running the length of the UK
Caitlin Andrew, 25, from Clydebank, is taking on 827 miles from Land's End to John o' Groats, running a marathon every day for 35 days, from 1 June to 5 July. She is running in memory of her best friend Tyla-Neve Malone, who died from epilepsy aged 19 in March, and aims to become the first Scottish woman to run the length of the country. Donate via JustGiving.
Tyla being so massive in everybody's life, let's do the biggest thing for her and get her name and her memory out there.
— Caitlin Andrew, speaking to STV News
Event: The Kelpies Experience
Saturday 10 October 2026. A guided aerial experience around Andy Scott's monumental horse-head sculptures in Falkirk. Climb to the horse's mouth via cables, ladders and suspended platforms, then descend with a free-hanging abseil or a quick-flight rope drop, and uncover the story behind this iconic artwork.
£30 booking, £250 minimum fundraising target, 1.5 hours, helmets and harnesses provided. Book at epilepsyscotland.org.uk.
Take on a challenge
We support fundraisers running every distance, from local 10ks to the London, Edinburgh and Loch Ness marathons, and we have a team in every Scottish Kiltwalk: Glasgow, Dundee, Aberdeen and Edinburgh. Sign up, train with us, and we'll back you the whole way.
More ways to fundraise: visit the fundraising section of epilepsy.scot.
Seizure first aid
You do not need to be a qualified first aider to help someone during and after a seizure. Most seizures will stop on their own and will not require any intervention. The guidance below is for a tonic-clonic seizure: when someone suddenly loses consciousness, falls and starts convulsing (jerking).
During the seizure
- Time the seizure (the convulsive part).
- Move any objects that could cause injury.
- Put something soft, a jacket or flat cushion, under the person's head.
- Loosen tight clothing around the neck.
- Remove their glasses if they are wearing them.
- Reassure others and stop people crowding around.
Once the jerking stops
- Wipe away any vomit or saliva to keep their airway clear.
- Tilt their head slightly backwards to maintain the airway.
- Check whether they have injured themselves.
- Turn the person onto their side (recovery position).
- Check nothing has blocked their airway, such as dislodged dentures or inhaled food.
- Stay with them until their breathing and colour have returned to normal.
- Talk gently to help re-orientate them, and stay with them until they are fully recovered.
What not to do
- Do not move the person unless they are in danger (for example, on a busy road or at the top of stairs).
- Do not try to stop the convulsing or restrain the person.
- Do not put anything in the person's mouth or between their teeth.
- Do not offer food or drink until they are fully conscious and their breathing has returned to normal.
Call 999 if
- it is the person's first seizure, as far as you know;
- they are badly injured beyond first aid;
- they may have inhaled food, drink or vomit;
- the convulsions last five minutes, or longer than is normal for that person;
- one seizure follows another with no full recovery in between;
- the person is having problems breathing after the seizure has stopped.
Do not hesitate to call an ambulance if you have any concerns.
Source: Epilepsy Scotland, epilepsy.scot/about-epilepsy/first-aid. Free training in seizure first aid is available from Epilepsy Scotland: see About Epilepsy Scotland.
Get in touch
We'd welcome the chance to meet you, brief your team and discuss how a National Epilepsy Action Plan can deliver better outcomes for the more than 80,000 people in Scotland living with epilepsy.
Office
Epilepsy Scotland48 Govan Road
Glasgow G51 1JL
0141 427 4911
Helpline
Freephone, free and confidential. Monday to Friday, 10:00 to 16:30. 0808 800 2200.
Online
- Web: epilepsy.scot
- Public affairs: publicaffairs@epilepsyscotland.org.uk
To set up a meeting
Lesslie Young OBE, Chief Executive: lyoung@epilepsyscotland.org.uk
Epilepsy Scotland is a Scottish charity, established 1954. Company No. SC163987. Scottish Charity No. SC000067. Registered office: 48 Govan Road, Glasgow G51 1JL.