This National Epilepsy Week (17 – 23 May), the UK’s largest epilepsy charity is urging healthcare professionals and funders to ensure that patients with uncontrolled epilepsy have timely access to the full range of epilepsy treatments. This follows new results from Epilepsy Action’s specially-commissioned Seize Control Patient Survey 2015, which reveal the debilitating effect of frequent seizures on health and wellbeing.
In the UK, only 52 per cent of the 600,000 people with epilepsy are seizure free. With the right treatment, another 18 per cent (108,000 people) could also become seizure free. While it is known that seizures can have a negative impact on health and wellbeing, this survey of nearly 1,000 people highlights the stark reality of that impact.
Of the respondents who were seizure free, only 10 per cent (25/249) rated their health and wellbeing as either poor or very poor. The results clearly showed that as seizure frequency increases, health and wellbeing deteriorates. Of the 271 respondents who experience very frequent seizures (one or more a week), 53 per cent rated their health and wellbeing as poor or very poor. More than half of those with very frequent epileptic seizures have had them for over ten years.
The survey also looked at specific indicators affecting a person’s quality of life, and saw a very similar pattern. In the seizure free group, a third reported stress and/or anxiety levels as poor or very poor. These levels almost doubled for those with increased seizures, with over 60 per cent of people citing their stress and/or anxiety levels as poor or very poor.
These findings reinforce the importance of achieving seizure freedom where possible in people with epilepsy, and in reducing seizure frequency in those for whom seizure freedom is not possible.
An effective annual treatment review is an essential part in the care of people with epilepsy.
However, the survey revealed that a third of people with epilepsy (including a third of those with very frequent seizures) had not, or could not recall having, been invited to an epilepsy treatment review with any health professional in the past two years.
During a review, the doctor and patient will discuss a person’s seizure frequency and any unwanted side-effects from their epilepsy medication. If a person has poor seizure control, the health professional may discuss making changes to the person’s current treatment or referring the person to another specialist or for tests. The specialist will then review the person’s epilepsy diagnosis and consider whether an additional treatment might be suitable for the patient.
Simon Wigglesworth, deputy chief executive at Epilepsy Action, said:
“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.”
141 people told us that they’d discussed the possibility of a new treatment for their epilepsy (such as brain surgery, VNS, DBS and/or an epilepsy modifying diet) with their health professional. At the time of the survey, 60 per cent of those who had discussed new treatments had actually gone on to start them.