Research and care quality improvement
Research
The research we carry out, fund and support contributes significantly to improving the lives of people living with epilepsy.
Our research focus is on improving epilepsy care and the lives of people with epilepsy in the UK.
We support research in many different ways.
We fund research projects in areas that we think need more investigation; we provide support to research projects by giving advice and feedback; we advertise research to potential participants and share the results of projects that are relevant to our members.
We also have a group of research volunteers who support research projects by helping to shape the projects, giving feedback on ideas and documents, taking part in the research, and helping to share the results of the research.
We are also a founding partner of the Epilepsy Research Institute UK. The institute is focused on strategic investment and building the research ecosystem to advance the treatment and prevention of epilepsy.
Current research projects
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SEHOM
The SEHOM project is investigating how ambulance calls for seizures differ between calls made by care homes and calls made in other settings. It is also looking at what support care home staff need to support people with epilepsy.
Epilepsy Action have part-funded this project and are providing PPI input.
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RADOSS
People with epilepsy are sometimes taken to hospital during a seizure when they don’t need hospital care and could have managed their seizure at home.
For example, if someone has a seizure while walking down the street a passer-by may call an ambulance, but the person having the seizure may be used to managing seizures and not need any additional care.
RADOSS is investigating how paramedics decide whether someone having a seizure should be taken to hospital.
The aim of the project is to create a tool paramedics could use to make decisions about taking people to hospital, and to test this tool and make sure it works as well as possible.
Epilepsy Action are helping to shape this project. We are also organising feedback from people with epilepsy to ensure this tool does what people with epilepsy want it to do.
Epilepsy Action research volunteers are also supporting this project and making sure the voices of people with epilepsy are heard.
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Innovations
This research project is comparing people with epilepsy’s experiences of face to face and telephone neurology appointments.
The results of the research are being used to write a list of recommendations to ensure telephone appointments are as useful and accessible to people with epilepsy as possible.
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EPSET
This aim of this research project is to create a ‘core outcome set’ for epilepsy research, which is a list of things (‘outcomes’) that should be measured in every piece of research.
This is important as it will make it easier to compare different pieces of research. At the moment there is no agreement on what things should be reported in epilepsy research, so it can be very difficult to compare different pieces of research with each other.
For example, a study may find that drug x works well to control seizures, and another study may find drug x only controls seizures in women.
At the moment there is no expectation that either study reports what percentage of participants belonged to each sex, so we can’t be sure whether it actually only works in women, or whether there were just a lot more women than men participating in the second study, which could affect the results.
This will also help to identify differences between different groups of people and how their epilepsy affects them. For example, if the differences between people of different ages, genders, ethnicities, etc are always reported, it will be easier to see if there are differences between groups.
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Pre-conception care
It is recommended that people with epilepsy seek medical advice before getting pregnant, but whether this happens and how good that advice is varies a lot between people and areas.
This research is investigating why that variation exists, and how it can be overcome. The aim of the research is to identify what actions healthcare providers need to do to ensure people with epilepsy access pre-conception care, when the care should be given, and to create a way for the people receiving the care the evaluate whether it was useful.
Epilepsy Action have helped to shape this project, we have run focus groups with people with epilepsy and their friends, families and carers, and helped to share surveys.
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COVID in Wales
This project is investigating the impact COVID has on people with epilepsy in Wales.
It found that people with epilepsy are at a higher risk of getting seriously ill if they catch COVID, and has led to people with epilepsy being added to the groups that are a higher priority for receiving vaccines.
Past research projects
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Prevalence
This research project is looked at the prevalence (the number of people with epilepsy) and incidence (the number of people being newly diagnosed) of epilepsy in the UK.
This is important as it has not only told us how many people have epilepsy in the UK, it has also let us know where they are and whether there are more people with epilepsy in certain areas.
Project summary:
The number of people with epilepsy in the United Kingdom
Summary
Researchers have used information from the NHS to find out how many people in total have epilepsy (the prevalence), and how many people get a new diagnosis of epilepsy each year (the incidence).
Results
- The overall percentage of people with epilepsy in the UK is 0.94%, which means one person in every 107 people has epilepsy
- An estimated 632,559 people in the UK are living with epilepsy
- There are 28,813 new cases of epilepsy each year in the UK, which is 79 each day
- The total number of people with epilepsy and the number of new cases of epilepsy in the UK are similar to what is found in other similar countries
- Like other similar countries, in the UK there are more new cases in the young and the old. There are more new cases in the elderly now than there were in 2011
- The number of people with epilepsy has fallen slightly since 2011
- The number of people with epilepsy varies in different parts of the UK
- The number of people with epilepsy, and the number of new diagnoses of epilepsy, are more than a third higher in the most deprived areas of the UK than the least deprived
Introduction
The number of people with epilepsy changes over time. The NHS needs to know how many people have epilepsy so it can make sure there is enough support available for them. However, it can be difficult to find out the number of people with epilepsy. There are no national registers or nationwide sources that regularly collect information about epilepsy. In 2011 a previous study estimated that 1 in 103 people had epilepsy in the UK.
What the researchers did
In 2020 researchers began work to estimate the total number of people with epilepsy and the number of new epilepsy diagnoses each year. They decided to look at England, Scotland, Wales and Northern Ireland as a whole, and at each region within England.
The researchers used information collected from GP practices. The information included: diagnoses, age, prescriptions, hospital stays and other health information. They used the data recorded between 2013 and 2018.
Prevalence
Prevalence is the total number of people with epilepsy. All patients with a diagnosis of epilepsy who were prescribed an anti-seizure medication were counted. Because the total numbers are very big, prevalence is expressed as the number of people with epilepsy per 1,000 people. The researchers also investigated if prevalence was different between men and women, and between people of different ages. They also looked at how prevalence varied between areas with more or less poverty. They did this using a dataset called the Index of Multiple Deprivation, which uses local authority data on things like income, housing, health and employment to score each area on how deprived it is.
Results
- The researchers calculated that 9.37 people per 1,000 people have epilepsy in the UK. This is one in every 107 people
- In England the prevalence was 9.08 per 1,000 or one in 110
- In Scotland the estimate was 10.13 per 1,000 or one in 100
- In Wales40 per 1,000 or one in 88
- in Northern Ireland33 per 1,000 or one in 83
Prevalence by country and gender
The number of people with epilepsy in different age groups was also counted. The number of people with epilepsy increases in each age group up to the ages 75-79 years old.
The number of people with epilepsy in each region in England was calculated, and the researchers found London has the fewest people with epilepsy, where just 6.96 people per 1,000 have epilepsy. The North East has the most people with epilepsy, with 11.03 people per 1,000.
The number of people with epilepsy is higher in areas that are more deprived (which means there is more poverty in that area). In the least deprived areas, 7.56 people per 1,000 have epilepsy. In the most deprived areas, this increases to 12.07 people per 1,000. This means people in the most deprived areas are more than a third more likely to have epilepsy than those in the least deprived areas.
Incidence
The incidence of epilepsy is how many people are given a new epilepsy diagnosis in a year. The numbers are very big, so they are shown as the number of cases per 100,000 people.
The researchers looked at how many people were given a new epilepsy diagnosis during each year from 2013 to 2018.
In the same way as they did with the prevalence, the researchers looked at the incidence overall, and also incidence by gender, age group, and deprivation.
Results
- The number of new epilepsy diagnoses in the UK each year is estimated to be 42.68 per 100,000 people. This is approximately 28,800 new cases a year, or 79 a day
- The number of new epilepsy diagnoses in England per year is estimated to be 41.41 per 100,000 . This is approximately 23,400 new cases a year, or 64 a day
- The estimate for Scotland was 47.76 per 100,000 people, approximately 2,600 new cases a year
- For Wales it was 54.84 per 100,000 people, approximately 1,800 new cases a year
- And for Northern Ireland it was 48 per 100,000 people, approximately 880 new cases a year
The number of new diagnoses is highest for children aged 9 and younger. The number of new diagnoses also increases with age from 60 years old up to 89 years old, with the most new diagnoses being for people aged 85-89.
Researchers also looked at the number of new epilepsy diagnoses in each region in England. London has the lowest number of new diagnoses, with just 28.5 per 100,000 people, and the North East has the highest number, with 41.69 per 100,000 people.
The number of new epilepsy diagnoses is higher in areas that are more deprived (areas where there is more poverty). In the least deprived areas, only 35.6 people get a new epilepsy diagnosis per 100,000 people. In the most deprived areas, 58.35 people per 100,000 people get a new epilepsy diagnosis each year.
How has this changed over time?
The last time these numbers were calculated was in 2011. The total number of people with epilepsy in the UK was slightly higher then, and is slightly lower now (it is 1 in 107 now, and was 1 in 103 in 2011). There are also more older people with epilepsy now than there were in 2011.
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NELLI
NELLI is a technology that allows video monitoring to be done at home rather than in a hospital. It involves having a camera set up by your bed which films you while you rest or sleep. The footage is then ‘watched’ by an AI which pulls out the sections it thinks might be seizures, which can be passed on to your doctor. This can pick up seizures you might not be aware of, and can help to get an accurate diagnosis and treatment plan in place.
This research is testing how effective the NELLI technology is, and whether people with epilepsy in the UK would like to use it. If it is effective and acceptable to people with epilepsy, it could be used instead of in-hospital video monitoring, which could allow for more people to access video monitoring and potentially improve diagnosis and ensure treatments are as effective as possible.
Epilepsy Action organised focus groups with people with epilepsy and carers to find out about their experiences of video monitoring in the past, and how they feel about this technology.
Health and social care quality improvement
The health and social care quality improvement projects we support contribute significantly to improving the care given to people with epilepsy in the UK.
We support quality improvement projects in many different ways. We run our own projects and support projects run by other organisations by setting up workshops and feedback sessions, giving advice and information to project teams, helping to shape the aims and methods of projects, and making the voice of people with epilepsy heard in healthcare improvement projects.
We also have a group of volunteers who support quality improvement by sitting on committees and boards, giving feedback on project plans and ideas, taking part in workshops and focus groups, and helping to shape the projects.
Quality Improvement projects
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Step Together Toolkit
The Step Together toolkit is a self-assessment benchmarking toolkit that can be used by anyone providing care to people with epilepsy and a learning disability. It benchmarks the care provided against what an ideal service would look like. To learn more visit the Step Together page.