Quality of life is a vital part of epilepsy management and how a person responds to their lived experience. It covers all aspects of a person’s experience, from seizure management to independence, mood, relationships and self-esteem. However, quality of life is often overlooked when considering new approaches to treating epilepsy.
At Epilepsy Action we recognise the importance of well-being and quality of life, and the impact this has on people with epilepsy – not only on those living with the condition, but also on their families and carers. It is our aim to ensure everyone impacted by epilepsy can live a life that is as happy and full as possible. To achieve this aim, we offer a range of support services to improve mental well-being, encourage independence and reduce isolation. These services include:
By providing individual and group support to people affected by epilepsy, we help improve their understanding of the condition, empower them to make informed decisions relating to health and social care and build their resilience to improve their quality of life.
Our collaboration over the past two years with the UK Epilepsy Priority Setting Partnership (PSP) which was funded and led by Epilepsy Research UK, underpins our commitment to enhancing the lives of people with epilepsy. The UK Epilepsy PSP brought together individuals with lived experience, healthcare professionals, and researchers to identify and prioritise key areas for research and improvement. Actively engaging with each of these groups has ensured the voice of people with epilepsy is central to the priorities, and that their needs are well articulated so solutions can be found. This is a commitment we plan to continue as proud founding partners of the Epilepsy Research Institute UK (link to announcement).
Priority 8 of the UK Epilepsy PSP ‘Top 10’ research priorities is: ‘How can quality of life be improved for people with epilepsy, their families and carers, including those bereaved by epilepsy?’ This is central to the research work Epilepsy Action supports and engages with. We are excited to be involved in new research projects investigating how best to improve the quality of life for people with epilepsy. ‘Quality of life’ is a broad term, but one which we encourage all researchers to refer to when planning research.
Below are two potential areas where research can have a significant impact on quality of life:
These advancements could significantly improve the lives of individuals with epilepsy, providing them with more effective treatments, greater seizure control, and a better overall quality of life.
Continued investment in research and collaboration between scientists, healthcare providers, charities and individuals with epilepsy will pave the way for these game-changing advancements in the field.
Large-scale, impactful change in the area of quality of life for people with epilepsy is within reach. With more focus on research in these areas, increased funding for projects, and dedicated efforts from those who know how important it is, we could see real-world improvements within the next decade. That is why we at Epilepsy Action are committed to supporting this UK Epilepsy PSP priority and excited to see where this work will lead.
To find out more about Epilepsy Action’s vital work and services, please visit their website.