Epilepsy Action this week releases the results of a new survey. Sadly, the results are not surprising. People with epilepsy all over the UK could – and should – have access to better treatments to improve their health and wellbeing
'Epilepsy' is an umbrella term. It encompasses over 40 different types of seizure and at least 29 distinct syndromes. These can show up with a variety of symptoms and can be treated with a – thankfully – ever-increasing array of drugs, therapies and devices.
Still, one thing about this very diverse condition seems pretty constant. People who have seizures will tend to agree – seizures are rubbish. For many of us, they can strike at any time and undermine our independence. Their treatment can mean taking drugs that make us tired or moody. They affect our abilities to drive, to work or to carry on a relationship.
Recurrent seizures for many people go way beyond being a medical issue. They affect many aspects of our lives and how we feel about ourselves – they affect our overall wellbeing. They affect our quality of life.
This National Epilepsy Week, Epilepsy Action releases the results of a recent survey: the Seize Control Patient Survey 2015. The survey asked almost a thousand people with epilepsy about their seizures and the effects of those seizures on their lives.
Sadly, the results weren't too surprising. Of the 934 survey respondents, 685 people had active seizures. Those people similarly felt that that was rubbish. In fact, the more seizures people had, the greater the negative impact on their sense of health and wellbeing.
So far, so obvious. Fortunately, the survey forms part of a greater campaign by Epilepsy Action. That campaign is designed to help you work with medical professionals to improve your treatment.
Everyone with epilepsy deserves access to the best treatment, whatever that may be – a different drug, a diet, a new device. Now entering its second phase, the Seize Control campaign aims to empower you to find out what that best treatment might be.
Epilepsy is different for everyone. Thankfully, one statistic highlighted in the Seize Control Patient Survey 2015 was that those people who did not have active seizures were largely unaffected by problems with health and wellbeing.
Of the 934 survey respondents, 26 per cent (just over a quarter) were seizure-free. In this group, only 10 per cent reported having poor health and wellbeing. This is certainly great news for this group of people with epilepsy.
Survey respondents were split down into groups depending on how many seizures they had. Unfortunately, the news wasn't as positive for those people living with more seizures.
The group who were living with frequent seizures (more than one each month) reported a greater impact. In this group, 46 per cent (almost half) rated their health and wellbeing as poor or very poor.
Those people with the greatest number of seizures reported the worst impact on health and wellbeing. These people were in the group defined as having very frequent seizures – one or more each week. In this group, 53 per cent (over half) reported their health and wellbeing as poor or very poor.
For many people in the group with very frequent seizures, this is a long-term problem. Over half of the people in this group have been living with seizures for over a decade.
The Seize Control Patient Survey 2015 also looked in-depth at the quality of life of the people with epilepsy who took part in the study. This involved assessing specific indicators of a person's mental health and frame of mind – exploring someone's energy levels, mood, concentration, stress and anxiety. Unfortunately, these results followed a pattern very similar to those associated with health and wellbeing.
In the seizure-free group of respondents, a third reported stress and/or anxiety levels as being poor or very poor. These figures were almost doubled in the groups reporting frequent and very frequent seizures.
In the frequent seizures group, 62 per cent of respondents (well over half) rated anxiety levels as poor or very poor. Again, the group experiencing very frequent seizures were the worst affected in terms of anxiety. A worrying 64 per cent (almost two thirds) rated anxiety levels as poor or very poor.
What can we do?
These results suggest one obvious fact – that to reduce the number of seizures you have will have a very clear positive impact on how much you enjoy your life.
The Seize Control campaign is designed to help people with epilepsy access better treatment. That treatment could come in a variety of forms. It may reduce the number of seizures you have or how severe they are.
For some people, it may not be possible for them to become seizure-free. Still, those people may alter their treatment so that they experience fewer side-effects from their drug regime, for example.
The first step is to arrange a treatment review with your medical professional. Anyone with active seizures should have an annual treatment review to make sure that the treatment they are receiving is the best one for them.
Unfortunately, the Seize Control Patient Survey 2015 highlighted another fact that is far from ideal. Not all people are currently getting treatment reviews. Survey responses showed that a third of the people with epilepsy we asked had not been invited to a treatment review within the last two years, as far as they remembered.
Simon Wigglesworth is Epilepsy Action's deputy chief executive. He says: “These results are alarming, especially the lack of basic reviews for those with weekly seizures. Anxiety and stress leave people with epilepsy feeling isolated, afraid and at the risk of increased seizures.
“Regular reviews, as well as contact with healthcare professionals, are crucial to reducing stress, boosting people’s wellbeing and ultimately, helping them to control their epilepsy.
“Epilepsy is a difficult condition to treat, but we know there are good care and treatment options out there. We don’t want people to languish in the system, to give up hope, when simple protocols and access to treatments could make all the difference. Our new online Seize Control toolkit will help people request a treatment review.”
Visit the Seize Control webpage now for lots of information about the campaign. The page includes links to free downloadable materials – including the Seize Control toolkit. This easy-to-follow series of resources includes everything you'll need to guide you through the review process.
The Seize Control magazine-style publication also offers you real stories from people who've tried a whole range of different treatments. Knowing more about these treatments is your first step to figuring out if they might be suitable for you!
Don't forget to keep coming back to Epilepsy Today all week. Here, you can read more personal stories about treatment options. We also bring you the Seize Control: Ask the experts panel – where experts in the epilepsy field answer all your treatment questions.
Also, if you feel that your seizures are affecting your health and wellbeing, there are some ways of changing that without even leaving your home!
Epilepsy Action Learning is an e-learning platform that includes a variety of different courses. One of those courses is called Epilepsy and your wellbeing.
Sign up now for access to this free online course. It helps you assess your own wellbeing and offers you information about how to take steps to improve it.
You may also like...
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