Our Helpline Officer Uschi gives us her current top five topics that keep her and her colleague busy on the helpline at the moment.
No day is the same on the helpline. Themes and topics change all the time, or something brand new may pop up such as the emergence of a pandemic three years ago.
We have to learn and adapt quickly on the helpline, there is no room for complacency. Every day is a school day for us!
Right now, these are my current five though:
1. Mental health
The first one has to be mental health. Almost every call somehow touches on a person’s mental health and related struggles.
An epilepsy diagnosis can have a profound impact on a person’s life, and that’s not easy to get your head around.
There are other reasons why someone with epilepsy may struggle with their mental health, such as side effects of anti-seizure medication.
So, we predominantly listen with a bit of additional information and maybe sign posting to another service.
Listening unconditionally and letting someone talk can be incredibly powerful. People often phone us with a straightforward question. But that’s not really why they phone.
They want to talk to us but don’t know how to start or whether they can trust us.
Once the person feels comfortable with us, that’s when it all spills out – the suicidal thoughts, the constant fights with the partner, the feelings of despair.
So many calls end up about something completely different than the initial question.
2. Money and benefits
Closely linked to mental health struggles are money worries. No big surprise there. People with epilepsy are less likely to work or find work and are more dependent on benefits payments.
The benefits system can be confusing and frustrating to navigate, especially if you are new to this.
We hear from callers who have found themselves in dire circumstances, not knowing how to pay their rent and bills.
What callers need in these situations is direct action and help. We start the process by establishing facts and giving general information.
Then it’s usually a quick referral to either our own in-house welfare rights team or a number for their local Citizens Advice Bureau.
3. Work
And that leads me neatly to number three in our countdown of popular themes. Looking for work, being dismissed, experiencing potential discrimination in work, or being turned down for a job are common experiences people call us about.
Epilepsy can be a real barrier to employment. This is often based on misunderstanding, misinformation and sometimes even fear of epilepsy.
Luckily, we do also get contacted by some amazing employers who want to do right by their employees with epilepsy and seek our support in doing so.
So, it’s not all doom and gloom when it comes to employment.
4. New diagnosis
We are often a lifeline for those newly diagnosed. The questions usually come after your appointment with the neurologist or epilepsy specialist nurse.
We can fill in some of the gaps especially since a lot of the questions are more of a general nature.
Needless to say, we would never give medical advice. It can be overwhelming to take in all this new information and we give you time to process and ask your questions.
We can also follow up our chats on the helpline with written information which we can email and post out.
People have repeatedly told us that they appreciate the time we take, calls to our helpline are not rushed, they take as long as they take.
5. Lack of neurology access
And finally, waiting times! Having to wait for first appointments or review appointments with a neurologist or epilepsy specialist nurse can be frustrating.
Sadly, neurology services are stretched in most health board areas, which can mean long waiting times.
This is when I often wish we had this magic wand because there really isn’t that much we can advise.
We can talk about some ways to shorten the waiting time such as trying to access cancellation appointments, or ways to manage seizures in the meantime, but that’s about it.
Everyone in the NHS is doing their best and more, but given the lack of neurology resources, waiting times can be a major source of anxiety for many callers.
Everyone including us ends up being frustrated by the situation.
So, if you want to add your own questions, phone our helpline on 0808 800 2200. Every question is valid, every request for help is important to us.
