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.
