Researchers from King’s College London are doing research to empower people with epilepsy. This work encourages people to take more control over the management of their condition – and possibly have fewer seizures. Leone Ridsdale, Laura Goldstein and Adam Noble describe their new research project, which aims to design a information course for people with epilepsy. Peter Fox explains
People with epilepsy often can do certain things that lower their chances of having seizures and might reduce the impact of their epilepsy. This can include taking medicines every day and getting enough sleep. It might include knowing how much alcohol you can drink, and learning to avoid other triggers for seizures. People with epilepsy also need to learn first aid for epilepsy and tell others what to do if a seizure occurs.
The National Health Service (NHS) has so far not been great in helping people to become confident in doing these sorts of self-management tasks. People with epilepsy have, for example, often said that they are just not given enough information about epilepsy. However, things are now changing. Gone are the days when you had little say in how your epilepsy was treated. The patient voice is becoming more and more central to the workings of the NHS. And rightly so.
The King’s College London researchers are leading the way in helping the NHS change. What they are doing is developing an information course for people with epilepsy so that patients get the information on epilepsy that they want and need. The idea is that in the long run the NHS could offer the course and help people with epilepsy become ‘experts’ in their own condition.
It may be several years before such courses are available in your local area.owever, the first courses are just about to be tested in London. If you’re a local you may want to get involved in the testing process.
SMILE: course content
The King’s College London project is called ‘Self-Management education for adults with poorly controlled epILEpsy’ – or SMILE. The course being developed is based on a successful programme that has been used for several years in Europe called the MOSES programme. People who have taken the course there have learned more about epilepsy, felt more confident in dealing with their condition and have fewer seizures. Leone’s team are adapting the MOSES programme for people in the UK so that they might find better ways of living with epilepsy, too.
Laura says: “There’s a general move in the NHS to empower people to take some responsibility for managing their conditions. Obviously medical interventions are still key, but it is now recognised that we need to better support people with epilepsy to know how they can reduce the chances of seizures and minimise the impact of epilepsy on their lives. Patients themselves have been calling for this for years.”
The course that the King’s College London team are developing gives people with epilepsy lots of information about epilepsy. It will be particularly useful for anyone who has never been given this kind of information. Throughout the course, patients will be free to ask questions and discuss the information given.
Laura explains: “The package is organised into a number of modules. These teach people with epilepsy about very practical things like helping you understand what kinds of seizures you might have. Also, what features you need to be able to tell your doctor about so they can make a better diagnosis or offer a better management strategy. There is information about the kinds of tests you might have, so that you aren’t daunted by them.
“There will be sections where we look at understanding when people might become seizure-free – but also what your life might look like if you cannot. Large chunks of the course look at helping people keep better records of their seizures. This is helpful in medical management, but also in looking for patterns to see if there are things that make seizures more likely at particular times.”
The effective medical management of your seizures is very important. Being able to learn what to look for (and what to avoid) can help you. It can aid in discussions with doctors and other epilepsy specialists during consultations – helping you get the most out of them. The impact of your epilepsy might go beyond just your seizures, however.
Laura continues: “Then we also look at things like the social aspects of epilepsy, and some of the rules and regulations (driving for instance). We explore dealing with emotional problems or family issues. Finally, there is also very practical information about organisations and networks that might be useful.”
As well as getting lots of information on epilepsy, everyone taking the course is given an information book to keep which covers all the things talked about. The course also offers people with epilepsy an opportunity to meet and talk with other people with epilepsy. This is because people take the course in small groups with other people with epilepsy.
Adam explains: “We have a doctor here who taught on the MOSES programme in Germany. He said that the interaction of people with epilepsy with one another in the workshops was very important. It allows people to become more confident in self-management. It is also nice for people with epilepsy to know that they are not the only one with epilepsy and not so alone.
For your convenience
Many people with epilepsy would probably jump at the chance to learn this kind of information if it can genuinely improve their quality of life with epilepsy. The original MOSES programme has been used in Germany for 12 years now. It is an unfortunate reflection on UK epilepsy services that this idea has been slow to cross the water.
Leone says: “I think that’s partly because of the differences in neurology between Britain and Europe. There are about 10 times as many neurologists for each member of the population in most European countries.
“Perhaps people with epilepsy [in the UK] have not been given the full opportunity to actually learn about their condition. I believe Epilepsy Action has done surveys showing that there is a great unmet demand for information about how to manage their own condition.”
The SMILE courses are initially going to be delivered as ‘test courses’ over two full days at the King’s College London Denmark Hill Campus. This is so the team can see how well the courses are received by people with epilepsy and what changes might still need to be made. The sessions are delivered by professionals with knowledge about epilepsy, which is particularly important during this early stage while the SMILE course is still being finalised.
Leone explains: “Two experienced health professionals run each course. One will be an epilepsy nurse and the other one will be a neurophysiologist (that is, an EEG expert). In this way, the course leaders can both teach and observe the group as it goes along.”
Not only will these professionals be on hand to teach about self-management, they can judge how well the test course is working. Their feedback – and, of course, the feedback of people with epilepsy – will help Leone’s team finalise the course before the full-scale trial later this year.
The added benefit of having hospital professionals involved is the extra reassurance for anyone who wants to attend a course. If you happened to have a seizure, there would be trained and experienced health professionals there to make sure you are safe.
In fact, every possible effort has been taken to make things safe, accessible and convenient for the people attending the test courses coming up. If you’d like to bring a carer, friend or partner for physical, practical or just emotional support, this can be accommodated. The two-day course is fully catered, so you won’t go hungry. If you struggle to pay travel expenses, there may be money available to help you.
Epilepsy Action has been involved in several stages of the SMILE project. As a patient organisation, Epilepsy Action makes a perfect partner for the initiative. Its leaders were keen to tailor the course to the people who will ultimately be using it.
Adam explains: “The idea was that this intervention should respond to what people with epilepsy themselves want and so we have worked closely with Epilepsy Action from the start.”
Epilepsy Action has provided information where necessary and has been central to making sure that the course materials are user-friendly. The Epilepsy Action Research Network has also been involved from the beginning. The network was used as a sounding board by Leone’s team to check how useful their project would be to people in the UK.
Only now that the course is almost ready can Epilepsy Action members get involved. The team are looking for people with epilepsy who can take the test course and feed back to the team on how successful it was.
Adam says: “To take part, you need to be taking anti-epileptic drugs, live within the London area and be aged 16 or over. You also need to have had at least two epileptic seizures in the last 12 months. These seizures can be of any type. As the course is given in English, you also need to be able to speak, read and understand English well.”
Epilepsy Action members who fit these criteria are invited to get involved in this exciting new initiative! If you’d like to find out more, visit the ‘get involved’ section of the Epilepsy Action website. Alternatively, contact one of Leone’s team using the details below.
Tel: +44 (0)207 848 0638
Post: Department of Clinical Neuroscience, PO43, King’s College London, SE5 8AF
Tel: +44 (0)20 7848 5187
Post: Department of Clinical Neuroscience PO 41, Denmark Hill Campus,
London, SE5 8AF