Dr Greg Rogers (epilepsy clinical champion at the Royal College of GPs) and Nicole Crosby-McKenna explain Epilepsy Action’s new campaign – designed to bring people with epilepsy and their health professionals together to improve treatment
Epilepsy Action presents Seize Control – a new campaign designed to help you take charge of your seizure control. Backed by the Royal College of GPs (RCGP), the campaign supports people to work with their health professionals to improve their current care and treatment.
Epilepsy Action and the RCGP want to improve the lives of everyone with epilepsy. The ultimate goal of your treatment is being free of seizures, while avoiding unwanted medicine side-effects. However, only 52 per cent (just over half) of the 600,000 people with epilepsy living in the UK are seizure-free.
This means that around 288,000 people still have seizures – despite taking epilepsy medicines to try and control them. This puts their health and safety at risk. Seizures can also negatively affect a person’s employment, education, relationships and wellbeing.
Unfortunately, we know that a certain percentage of people with epilepsy could not become seizure-free with the currently available treatments. That is, around 30 per cent (just under a third) – roughly 180,000 people. However, improved treatment could still mean fewer seizures, fewer medicine side-effects or quicker recovery times.
Meanwhile, studies suggest that 108,000 people in the UK who aren’t seizure-free could be – if only they had the right treatment. So, how do you make sure you’re on the right treatment? And how would you know what that treatment might be…?
Exploring your options
A better treatment for your epilepsy will be different for every person. It might be a different dose of your epilepsy medicine or a different epilepsy medicine. Or it might include a different epilepsy treatment altogether. These could include brain surgery, ketogenic diet or vagus nerve stimulation (VNS).
Seize Control brings together information and advice about a range of epilepsy treatment options. This also includes information about when a change in treatment might be suitable for you and advice on what you should expect from your care and treatment. But how can you translate that into practical changes?
If a better treatment exists, an effective treatment review is a very important step towards finding it. The treatment review is your opportunity to talk to your health professional about your life with epilepsy.
To make informed care and treatment decisions, there are certain factors you and your health professional need to understand and discuss. These are: your current treatment(s), your seizure frequency and how that affects your wellbeing, and your treatment goals.
Some people find these kinds of appointments a bit confusing. You might be unsure what kinds of information your medical professional will ask for. You might not know how to go about getting a treatment review.
Fortunately you will find help in a range of handy resources called the Seize Control toolkit. The toolkit includes a letter to send to your doctor and a personal questionnaire about your epilepsy. Simply download them from the Seize Control webpage, print them off then complete your personal information. The next step is to either mail or hand them in to your family doctor to request a treatment review.
For more information, call the Epilepsy Helpline on 0808 800 5050 (UK only) or visit the campaign webpage. The page also shows you the easy eight-step plan for achieving better care and treatment.
Epilepsy is never just about sample letters and campaign tools – it’s about the day-to-day experiences of people living with the condition. To accompany all these useful resources, Epilepsy Action has produced a beautiful magazine-style publication called Seize Control.
In it, several people with epilepsy share their stories of using a variety of treatment options, such as the ketogenic diet or a VNS implant. These stories offer you a useful insight into what it’s like to have these treatments – to help you decide whether they might suit you.
One of those stories comes from Richard, who had a VNS device implanted to help control his seizures. Richard says: “My journey to a new treatment started with my epilepsy specialist nurse. Over the years, she went through (prescribed) every drug available for my seizure type. Sadly, none of them ever controlled my seizures.
“At this point, I was found suitable for VNS. I decided that I wanted the operation – anything to reduce my seizures.
“[The VNS] wasn’t a cure – but a definite improvement. Instead of having around two or three tonic-clonic seizures a week, I have two or three a month. Due to my improvement, my drug doses have been reduced. I think that this has improved my memory. I feel a lot better in myself.”
Seize Control is also part of the campaign toolkit and is available to download from the Seize Control webpage.
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