Created in collaboration with the Thistle Foundation and funded by the Health and Social Care Alliance, the toolkit offers practical advice, guidance, and personal insights from real people with epilepsy to empower users to live their lives to the fullest.
This innovative resource builds on the success of the in-person Supported Self-Management Project, which has been taking place at the William Quarriers Scottish Epilepsy Centre (WQSEC) for past and present patients. The WQSEC is the only residential in-patient epilepsy hospital in Scotland.
It has transformed the lives of people living with epilepsy, offering person-centred support through initiatives such as lifestyle management courses, wellbeing workshops, education on what epilepsy is, memory and sleep classes and how to live a fulfilling life with the condition.
A proven model of success
The journey to creating the Epilepsy Self-Management Toolkit began with a series of workshops and a structured, supportive model for engaging with people living with epilepsy. Patients at WQSEC, who typically spend four weeks at the centre, often expressed a desire to use this time productively. Needs assessments revealed a strong demand for building self-management capacity.
The result was the Supported Self-Management Project, which included:
- A 10-week Lifestyle Management Course for past patients.
- Solution-focused sessions with trained wellbeing practitioners.
- Weekly exercise classes, volunteer-led art sessions, and tailored workshops on memory, sleep, and lifestyle management.
“This approach helped patients feel less isolated, build resilience, and gain confidence in managing their condition,” said Sam Begbie, Lifestyle Management Project Worker at WQSEC. “It has been a privilege to see the transformative impact it has had on individuals and their families.”
The toolkit expands on these successful outcomes by making the insights and strategies developed during the project available to a wider audience.
By sharing this information Quarriers is offering a valuable resource for people who have epilepsy, their families and caregivers, on how to access support and where to turn when they need advice.
Yvonne McLaughlin, who has been through the self-management workshop in person while an in-patient, reflects on the benefits: “It’s a frightening time when you are diagnosed, and you don’t have anyone to tell you what is happening. If you look up information yourself, it’s scary because you don’t know what type of epilepsy you have or how it will affect you. To know that I wasn’t alone and to find people I could reach out to for support was a huge step forward.
“When I was diagnosed, my GP wasn’t particularly involved; it took a year to get an appointment with a consultant. In that time, if I had had access to a toolkit like this, I would have been far more informed than I was. When you are thinking, who can I phone or email and ask about this thing I need help with, the toolkit is there with many of the answers and directions on where to find the help that you need.”
Access the toolkit today
The Epilepsy Self-Management Toolkit is now available online, providing practical steps to manage symptoms, connect with essential services, and enhance well-being. Visit https://toolkit.quarriers.org.uk/ to explore this invaluable, free, resource.
