Getting the right support
Whether you have epilepsy or are supporting someone with epilepsy,
here you can learn from others experiences.
Mental health support
“It’s easy to forget about your mental health when you’re busy thinking about your physical health. I know my emotional wellbeing needs regular maintenance. Sometimes it’s hard to talk about it but talking really helps.”
Guidance
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Positive and negative thinking
Our brains tend to think negatively when we get distressed or are going through periods of struggle. This can turn into automatic or habitual negative thinking, which makes it difficult to break the cycle and feel better.
The Thistle Foundation has created guidance for turning negative thinking into positive thinking. Use the guide provided to become more aware of negative thinking when it happens and embrace positive thinking to change your mindset.
Clinical counselling services
Often talking to trusted family and friends can be the first step in seeking emotional support.
A range of mental health services are available on the NHS including professional counselling, though services vary across the country. These services can be accessed through your GP.
Access to these approaches can take different forms including books, online courses and information, telephone and videoconferencing therapy, groups and individual one to one support.
Some epilepsy charities will offer counselling and support services too. As with access to all specialist services in the NHS, there is often a waiting list, so you should be prepared for a wait to access this support.
Charities and helplines (Adult)
There are many different charities and organisations across Scotland who offer mental health support and guidance. We recommend using ALISS to search for options in your area.
Other national options have also been included.
Charities and helplines (Young People)
Children and young people need mental health support too, especially if they are experiencing epilepsy or caring for someone else.
Childline offers a toolbox of activities that can be used as a family.
Helplines are offered by Childline and the NSPCC.
Togetherall offers an online support space.
Anyone who is under the age of 18 and is caring for someone else is a Young Carer. Young Scot offer a range of support services for Young Carers in Scotland.
“I know it’s so difficult to imagine yourself needing that kind of support, but that’s exactly what it’s there for, to help people. When I was struggling to keep going with work I had no idea what support was available. It’s really difficult to fill out the forms and the process can be tiring but I contacted Citizens Advice and they were a great help.”
Guidance
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Exploring Benefits (Epilepsy Society, UK)
Find out what UK benefits you may be entitled to.
Understanding benefits in Scotland
Some benefit options are moving to Social Security Scotland and will become Scotland specific. Find out what benefits you may be eligible for through this system.
Contact Social Security Scotland to get advice and discuss your options.
Epilepsy Connections Fieldworkers support
Completing forms can be very difficult. Epilepsy Connections Fieldworkers offer one-to-one support for people with epilepsy. They can support you to complete forms and make appeals, including for adult disability payments. They can help you to explain your challenges and needs appropriately.
Citizens Advice Support
Citizens Advice offers advice and guidance for accessing support and making applications. You can call them on 0800 028 1456.
Quarriers Epilepsy Community Outreach (ECO) support
Quarriers Epilepsy Community Outreach team offer support to people with epilepsy and those around them in Aberdeenshire, Moray and Fife.
The team can help you identify what support is available and navigate applications for services and benefits.
For more information, including contact information, please take a look at the flyers linked below.
Epilepsy Scotland Welfare Benefits Advice
Epilepsy Scotland’s Welfare Rights service provides holistic advice on welfare benefits for people with epilepsy and associated conditions.
Access epilepsy support services
“Epilepsy made me feel so alone at times. Especially when it wasn’t controlled. I felt it stole my identity and I felt like a shell of my former self. Speaking to others about the great sadness and anger I felt really helped me. Especially to those who understood or were in a similar situation”
– Rachel
Guidance
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Quarriers Epilepsy Community Outreach (ECO) support
The Quarriers Epilepsy Community Outreach team offer support to those living in Aberdeenshire, Moray and Fife.
The team provides support for people living with epilepsy, and their families, carers and professionals.
They offer information, advice, employability support and training. They also run support groups to give people the chance to speak to others who understand what they’re going through.
Epilepsy Connections
Within Greater Glasgow & Clyde and Forth Valley, Epilepsy Connections offers a variety of support services for example:
Their Fieldworkers provide one-to-one support and guidance.
They deliver Epilepsy Futures, a free 6-month course to support self management and healthy lifestyles.
Lanarkshire Epilepsy
In North and South Lanarkshire, Lanarkshire Epilepsy offers support (both one-to-one and group, including online), activities, education, and training about all aspects of epilepsy.
Epilepsy Scotland
Across Scotland, Epilepsy Scotland offer a range of services such as:
A helpline: 0808 800 2200
A closed Facebook Support Group
Youth Groups for 8-21 year olds
Online Support Groups
Thistle Foundation Lifestyle Management
In Edinburgh, Lothian, Fife, Midlothian and beyond, The Thistle Foundation provides a variety of support for people with long term and chronic conditions.
This includes a 10-week Lifestyle Management course that provides tools and techniques to reduce stress, better manage conditions and live well.
Link Workers
Many GP practices in Scotland have a Link Worker who can work with you to find the right support in your community. Just phone up your GP practice and ask for the Link Worker.