By Diane, one of our small team of advice and information officers
I’ve worked on the Epilepsy Action Helpline for 22 years. My day is usually a mixture of taking calls, answering emails and monitoring social media. There’s a huge range of enquiries and every single one is different. People contact us a lot at the moment because they are struggling with PIP (Personal Independence Payment) assessments. PIP is huge. It’s clearly affecting a lot of people with epilepsy who have issues with work, mobility and just getting support with daily tasks.
The Epilepsy Action Helpline is the only epilepsy helpline providing information accredited by the NHS England Information Standard. We’re open Monday to Friday 8.30-5.30pm on freephone 0808 800 5050 or by emailing firstname.lastname@example.org.
Sometimes a news story can prompt a spike in calls, so we have to be aware of what’s going on and be prepared to respond if people are worried. The recent coverage of sodium valproate, and its effects on unborn children if taken during pregnancy, is something we have to stay on top of. It’s a major concern for women with epilepsy who might start to consider switching medication. They need vital information to help make informed decisions.
We listen to people, sometimes we offer answers, but in many cases what we’re trying to do is to help someone come to their own decision. We can also signpost services that they didn’t know existed or they couldn’t easily find online. Other times, they’re searching for answers at an early stage of diagnosis and working out how to adjust to their situation.
Some people can be quite desperate when they get through to us; sometimes, sadly, even suicidal. In many cases, they have no-one else to turn to. People can be lonely, scared and anxious. Some calls can be long because there can be a lot they need to say. We aim to give people the time they need.
Because epilepsy is so individual, people are looking for many different answers and types of support. One area we are often asked about is driving. For example, after having a seizure, many people with epilepsy have to surrender their licence. Of course, that can have a huge impact on your life. It’s not easy breaking this kind of news.
Having someone there to listen, who understands, can make all the difference to someone’s life. By being an independent voice, the helpline lets people offload to someone who isn’t a friend or family member. Callers often want to protect their loved ones, so there’s a lot to be said for talking to, or emailing, someone they feel they can trust, who isn’t involved. We do sometimes find ourselves just being there to listen, especially as a lot of people with epilepsy can feel really isolated.
We’re human beings so we can’t help but empathise with some of the stories we hear. It can be heart-breaking listening to what people are going through. Some people have really tough lives and you know that there isn’t going to be a happy ending. There will be a lot of stories that hit us personally when we put the phone down. But we have our own ways of coping and receive counselling too. It is a big responsibility to be a trusted source of support to the public, and we have to be both resilient and caring.
Saying that, it’s really rewarding helping someone to feel better and more informed. The knowledge and support people gain from a phone call or email can help them re-think their situation. We try to give callers the tools to cope. For example, a young boy was told he couldn’t take part in a swimming gala because of his epilepsy. But after talking to us and reading our written information, he could take part and won all the races. One young person was terrified of leaving the house. Sharing her fears with us changed her perspective, and now she’s not only getting out, but is planning a fundraising event.
As an advice and information officer, we don’t have all the answers. And that can be difficult. It is a challenging but immensely rewarding role. I’ve done this job for over 20 years, but I can pick up the phone and still be taken aback by what I hear. It’s unbelievable that people with epilepsy are still facing stigma in the 21st century. One example is discrimination in the workplace. We hear from people who’ve been sacked after telling an employer about their epilepsy, or refused any reasonable adjustments.
We know people can’t always call during the working day. But we don’t have the staff to take all the calls that come in, or to be here in the evenings and weekends. So our Purple Day appeal was vital to helping us recruit new staff to take more calls more often. With more staff we hope we can provide a first-class service to more people when they really need it.