The Scottish Government is currently working to develop Scotland’s first Action Plan for Neurology, which will set out a clear vision for neurological services and focus on what will bring greatest benefit to those with neurological conditions, such as epilepsy.
On Monday 12th March, the Health and Social Care Alliance Scotland (‘the ALLIANCE’) in collaboration with the Epilepsy Consortium Scotland organised a consultation event at The William Quarrier Epilepsy Centre, Glasgow to ask people who have epilepsy about;
- their experience of epilepsy services
- the types of problems they experience
- what good care looks like
- the care / services that they would like to access
- their experience of transition – for example, moving from child to adult epilepsy services
The event was facilitated by Audrey Birt of the Health and Social Care Alliance and four members of the current Epilepsy Futures group took part in this focus group event.
Our regular blogger Steven Connelly shares his thoughts about the experience.
“This week our Futures group attended a focus group at the Scottish Epilepsy Centre in Glasgow which was hosted by Epilepsy Consortium Scotland and the Alliance.
We appreciated the opportunity to participate and contribute to a plan which will help to improve life for people living with a wide range of complex neurological conditions.
The event brought together individuals from all walks of life, who have a wealth of knowledge of epilepsy and neurological conditions, and invited them to share their thoughts and experiences.
This is a topic that I feel passionate about, and I very much enjoyed working beside a room full of strong and inspiring voices.
Neurological conditions like epilepsy have a huge impact on a person’s life and can be complex, with a range of additional difficulties. Such conditions can have a significant impact to the individual, their family members and carers.
These might require input from a team of different health professionals working together to give effective treatment.
There can be a lack of communication at times, between different people, and this can lead to an often unacceptably long time to see a neurologist during the diagnosis process. In addition, care and other services can be over stretched.
It was very powerful listening to people, including some of my friends from Futures, talk about their own stories and experiences. I could relate to other people’s experiences of using services and getting support, and was deeply touched by being part of this event.”
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