Alison Fuller is Director of Health Improvement and Influencing at Epilepsy Action. In today’s blog, Alison discusses the work the charity does to help improve quality of life for those affected by epilepsy. Alison also shares insights into how research can help minimise the impact of the condition on people living with epilepsy, and those around them.
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:
- In-person Talk and Support groups held in many locations across the UK, where people impacted by epilepsy can share their experiences and receive support and advice
- Online Talk and Support groups for people unable to travel or who live in more isolated areas
- A befriending scheme which empowers people with epilepsy to be more independent and gives them an understanding person they can share their experiences and worries with
- A helpline to answer questions and provide information to anyone affected by epilepsy
- Specialised counselling services in Wales and Northern Ireland to support people with epilepsy and their families.
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:
- Depression and anxiety
One of the unfortunate aspects of epilepsy is the increased risk of developing depression and associated anxiety disorders. Understanding the link between epilepsy and mental health is of utmost importance for improving the overall well-being and quality of life for individuals living with epilepsy. These disorders can have a profound impact on a person’s emotional well-being, social interactions, and daily function. By identifying and addressing this link, healthcare providers can ensure the delivery of comprehensive care that encompasses both the physical and mental health aspects of epilepsy. Additionally, depression and anxiety can have a reciprocal relationship with epilepsy, where one condition exacerbates the other. For instance, the psychological distress caused by seizures and the challenges of living with epilepsy can contribute to the development or worsening of depression and anxiety. Conversely, the presence of these mental health conditions may negatively affect seizure control and overall treatment outcomes. Research which helps healthcare professionals to better recognise and manage this complex interplay could lead to more effective treatment strategies and better seizure management.
- Personalised treatments
Drug-resistant epilepsy can severely impact an individual’s quality of life, leading to distressing and disruptive seizures, limitations to daily activities, and psychological distress. By identifying and developing treatments that specifically target drug-resistant epilepsy, researchers and healthcare providers can offer new hope and possibilities for those who have exhausted conventional treatment options. The search for treatments with fewer and less serious side effects is also essential. Many people with epilepsy experience side effects from the anti-seizure medications, such as fatigue, memory problems, brain fog and mood disturbances. Finding treatments that effectively control seizures while minimising side effects would greatly enhance the overall treatment experience for people with epilepsy, and improve their quality of life. Personalised treatments offer real promise in both areas. Epilepsy is a diverse condition, with many underlying causes, seizure types and responses to treatments, all of which can vary greatly among individuals. What works for one person may not be effective for another. This individual variability poses a significant challenge in epilepsy management but also presents an opportunity for personalised treatment approaches in genetics, pharmacology, and neuroimaging. By studying an individual’s genetic makeup, researchers can identify specific genetic variations or biomarkers associated with drug response or treatment resistance. This knowledge can guide treatment decisions and help healthcare providers choose the most appropriate medication or intervention for each person. Developments within pharmacology can contribute to more targeted and effective medications. By understanding the intricate causes of epilepsy and the pathways involved in seizure generation, researchers can design medications that specifically target these pathways. Overall, personalised treatment options could maximise efficacy, minimise side effects, improve overall outcomes and have the potential to revolutionise epilepsy management.
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.
