Epilepsy is the commonest serious neurological condition. Medication is the main treatment. However, even with treatment, a third of individuals continue to have seizures. Seizures can be frightening. Most though, stop by themselves and with rest, the person can recover without medical attention.
The NHS does not offer a course that individuals with epilepsy and their family and friends (carers) can go on to learn about epilepsy. Consequently, some do not know seizure first-aid, are unsure about the effects of seizures and are fearful of them.
We interviewed patients and carers and found that this lack of knowledge and fear leads many patients to visit an Accident & Emergency (A&E) department when they have a seizure, despite not needing medical attention. Approximately 90,000 people visit A&E for epilepsy every year. A&E visits can be inconvenient for patients, with them often staying overnight in hospital.
We intend to develop and pilot a course for patients who attend A&E and their carers. It will be called: MANAGING SEIZURES: EPILEPSY FIRST AID TRAINING, INFORMATION AND SUPPORT
It will aim to empower participants by increasing their epilepsy knowledge, and confidence and ability to manage seizures. This training course will be based on a ½-day course offered by the charity, Epilepsy Society. Their interactive course is delivered by a trained instructor, typically a nurse, to small groups. It was developed for people from a variety of backgrounds, not just patients. The course will be adapted so it is relevant to patients attending A&E, who can be particularly challenged by epilepsy.
To do this, 20 patients from A&E and carers will be asked to go on the existing course and asked about what changes need to be made to the course’s content, format and delivery. To ensure its medical content is correct, we will also seek advice from experts from the professional groups supporting people with epilepsy, such as neurologists and nurses.
Once we have developed it, we will complete what is called a pilot randomised controlled trial of the course. For this pilot, 80 patients diagnosed with epilepsy will be recruited to take part with a family member or friend. Patients will be identified from 3 Merseyside A&E Departments.
Patients and carer participants will be asked to answer questions about the patient’s epilepsy, use of A&E, knowledge of and confidence in seizure management and their well-being. Patients will then be randomly assigned to one of two groups. Both groups will continue to take their medications and see their doctors and nurses as normal. One group will attend the epilepsy seizure first-aid course with their carer (called the ‘intervention group’). The other group (the ‘control group’) will not attend the course. We will ask patients and carers to fill in questionnaires on A&E use and their knowledge of and confidence managing seizures and well-being 6 and 12 months later.
The pilot trial will not test how effective the epilepsy seizure first-aid course is. Doing this would require a bigger trial, involving lots of patients and expense. Instead, the pilot trial is like a practice-run. It tells us how best to do the bigger trial. Some of the things we will learn from it include what proportion of those invited to take part agree to participate and how well the courses are attended. At the end of the trial the control group will also have the opportunity to go on the epilepsy seizure first-aid course.
Managing seizures: epilepsy first aid training, information and support
Family members and friends often give lots of support to people with epilepsy. One of the things people with epilepsy and their family and friends need to know about is what to do when a seizure happens. They also need to be able to tell others what to do.
To feel confident to do these things, some people with epilepsy and family members have told us that they want more information about epilepsy and seizure first aid. They said they want to know more about the effects of seizures, how to deal with different types and know when they do and do not need emergency medical help.
Therefore, we have made a short course for people with epilepsy and their family and friends. The course is called Seizure First Aid Training.
Each course is run by a specially trained health professional. The course was designed with the help of people who have epilepsy, ambulance staff, neurologists, nurses and emergency medicine doctors.
The course takes 3 hours to do and people with epilepsy take it together with a family member or friend. It is a group based course so there are other people with epilepsy and their family and friends at the course.
Our study is looking to see how helpful the Seizure First Aid Training course is. We want to know whether it helps people with epilepsy and their family and friends get the information they want and whether it makes them more confident managing seizures. We need to know this so the NHS can decide whether it should offer the course.
The type of study we are doing is called a pilot randomised trial. In this sort of study, patients who take part are put into one of two groups at random by a computer. The first group is called Group A and the second Group B.
Patients who get put in Group A will get to go on Seizure First Aid Training course straightaway with their family member or friend, whilst patients in Group B continue to receive their normal medical care. The health of the people in the two groups is then compared to see if the Seizure First Aid Training was helpful or not. After the two groups’ health has been compared, people in Group B then get to go on the course with their family member or friend.
At the moment we do not know if the Seizure First Aid Training course is any more helpful than the medical care patients already receive from the NHS. This means a randomised trial is the most exact and fair way to see how helpful the Seizure First Aid Training is. Each year thousands of people take part in randomised trials.
No. It is up to you. If you do not take part, the medical care of the person with epilepsy you know will not be affected.
Even if you decide to take part, you are still free to change your mind at any time. You would not need to give a reason. No new information would be collected on you. However, any information that had already been collected would be kept.
If you want to take part, a researcher will arrange to see you and the person with epilepsy that you know at a time and place that is convenient for you both. They could meet you at your home or at our university offices.
At the appointment, the researcher will explain the study to you both and answer any questions you have. You will be given this information sheet to keep and both be asked to sign a consent form. You will then both be asked to fill in a questionnaire. It will ask about how confident you are managing seizures and about your well-being. The researcher will be on hand to help you if needed. The appointment will last about one hour.
After the appointment, the researcher will use a computer programme to put the person with epilepsy that you know into either Group A or Group B. The group that they are put in will decide when the two of you get to go on the Seizure First Aid Training course. You will not be able to choose which group they are put in and we will not make the decision ourselves. We will let you know which group you have been put in and when you will get to go on the Seizure First Aid Training course.
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If you agree to participate in this study, the researcher will need to collect personal data from you. Further information about how we protect you with regard to processing your personal data can be found in the Privacy Notice here.
Managing seizures: epilepsy first aid training, information and support
Please feel free to contact the study team by any of the means below:
The Chief Investigator