In our work with Quarriers, Epilepsy Scotland and Epilepsy Connections, we’ve been talking with people who are living with epilepsy. We’ve heard how it impacts them, and what they need to support them to manage the condition. Epilepsy is a condition that impacts around 58 000 people in Scotland. It is one of the most common neurological conditions, and is lifelong. Epilepsy causes seizures, which present differently from person to person.
Seizures can be a distressing experience for people, as they may not be aware of what has happened to them. And it’s not just having the seizure that can be a challenge, but how you feel afterwards. People have explained the confusion and distress; the sometimes physical pain and anxiety that they can feel following a seizure. It can be a difficult experience for people, and fear of a seizure can impact upon people’s ability to socialise or feel they can live an independent life.
“See when I go to Tesco or Asda for my shopping on my own, see when I get to that door I start to kind of shudder a wee bit. Because I think to myself ‘God am I going to be okay in here myself?’ ... I try not to look at anybody in the face and just get what I need... I sigh with relief because I think ‘thank god, I’ve done it. I haven’t had a seizure in front of people...”
Clearly, getting the right medication to give people the ability to bring their seizures under control is a crucial part of epilepsy treatment. There is a clear role for epilepsy specialist nurses and other medical professionals in the management of the condition.
But epilepsy can have impacts on a person that reach beyond the very real challenge of seizures. Living with the condition can have deep and wide ranging impacts on people’s lives, from their employment, to their mental health, to their relationships.
In other words, the impact of epilepsy cannot be managed by clinical intervention alone. In fact, studies have found that seizure control in the absence of other, social support, is not as effective at improving people’s quality of life; even while they bring seizures under control (Lu and Elliot, 2012). Social support encompasses a broad range of interventions, from 1-to-1 support; to peer support groups led by a support worker; to formal counselling; to access to helpline services.
In this work, we’ve found that when social support and clinical interventions augment and complement each other, people have access to more robust, well rounded and effective treatment.
"...areas where they maybe don’t have much epilepsy specialist nurse provision or then an epilepsy specialist support service, would really be missing out I would think... when you’ve got both, epilepsy specialist nurses and the support service it seems to make a big difference.” - Practitioner
In Scotland at the moment, both clinical and social support for people with epilepsy is under pressure. There are a lack of epilepsy specialist nurses, meaning those who are in post have a very high caseload (Epilepsy Scotland, 2022). Similarly, face-to-face social support is available in only four health board areas, and access to funding for these services is patchwork with a lack of strategic planning.
Alongside Quarriers, Epilepsy Scotland and Epilepsy Connections and with input from people with epilepsy we have created a toolkit to inform and support decision makers about the need for commissioning social support for people with epilepsy; ensuring people have the support they need, from the clinic to the community.
We will be launching this toolkit later this month. Find out more from Hannah and Louise, at hannah.martin@iriss.org.uk and louise.bowen@iriss.org.uk
