Emma Simms' epilepsy meant she had frightening seizures and hallucinations - now she is campaigning for better mental health support for neurological conditions
AFTER suffering epileptic seizures which completely changed her life, Emma Simms knows first-hand that people with neurological conditions need greater support.
The 30-year-old from Halford had 70 seizures over a seven-month period before being diagnosed with epilepsy in April 2020.
“I was working from home one day and I just couldn’t stand up. I then had hallucinations, but I can’t remember what they were because it’s always been very difficult to recall what happened,” Emma told the Herald. “Afterwards I thought it was a one-off and it would go away but I did feel funny and needed to sleep.”
One of her subsequent seizures was more frightening and she was able to recall with vivid accuracy the hallucinations and actions she experienced.
“I was clicking my fingers faster than I could if I was doing it myself. I was clicking them repeatedly, it didn’t make sense,” said Emma.
She added: “I was experiencing ten to 12 seizures some days. This was really worrying. One of my seizures was when I was in a hot tub, which made it seem really serious all of a sudden. I started medication the day I was diagnosed in April 2020 and, fortunately, haven’t had a seizure since.
“The medication seems to be a lifesaver for me but I do feel very tired and I can feel quite spaced out. It has been hard adjusting to those feelings and not letting it affect relationships and work.”
Emma has joined a campaign by the Neurological Alliance to highlight how the lack of mental health support can make a neurological condition significantly worse and leave people feeling isolated and withdrawn.
The alliance, which represents more than 100 organisations including the MS Society and Epilepsy Action, says people are left to struggle alone.
A recent survey found two-thirds (67 per cent) of people with a neurological condition felt they did not have their mental wellbeing looked after and that a lack of awareness meant a lack of support from society and, sometimes, the medical profession.
Emma said her epilepsy has affected her daily life – including simple things such as she can’t take a bath on her own and if she goes to a beach and wants to swim she has to let the lifeguard know about her condition.
She added: “If someone is living by themselves they need more support after diagnosis, which is why I’m backing the Neurological Alliance campaign to raise awareness.
“The support should be there for young and old and involve regular check-ups and follow-up calls.”
At least one-in-six people live with a neurological condition, like Emma, which affects the brain, spinal cord, and nerves. Conditions like multiple sclerosis (MS) and epilepsy can impact anyone at any time, no matter your age, circumstances or gender. They can impact all aspects of life, how a person thinks, feels, moves and works. When someone has a neurological condition, such as Parkinson’s, the quality of care and support they receive is vital.
Georgina Carr, chief executive at the Neurological Alliance, said: “Living with a neurological condition can be exhausting and scary. Our report reveals people like Emma are being left to struggle on alone – either not knowing where to go to for support or facing an uphill battle to access under-resourced healthcare professionals.
“For years, people with neurological conditions have felt ignored, with public policy and service improvement for neuroscience under-prioritised. The tide is starting to turn but we now need all four governments to work together to develop and resource clear plans to improve the lives of the one-in-six people in the UK who live with a neurological condition. They must urgently put together a neuro taskforce to make
sure we have the right services in place for people both now and in the future.”
You can sign a petition asking for changes to be made at https://tinyurl.com/22t4nus5.