An epileptic mum has revealed how she has been accused of being "drunk", "faking" her condition and was once had her purse stolen in the street while she lay having a seizure.
Rhiain Mort, 37, from Liverpool, Merseyside, was diagnosed with epilepsy 13 years ago, when her son was four.
The condition which affects her memory and causes seizures has forced her to stop working and has dramatically affected her mental health.
The mum of one suffers with "extreme anxiety" about being alone and has received "nasty comments" when she has had a seizure in public, Liverpool Echo reports.
Rhiain said: “I experience such extreme anxiety about being out alone and so vulnerable based on previous experiences.
"I have been subjected to nasty comments and abusive behaviours when I have had seizures in public, people have even accused me of faking it, or being drunk. Someone once even stole my purse when I was having a seizure on the floor.
“The epilepsy is just one thing. But everything that goes with it can feel like I’m suffocating under stress and anxiety and it can feel difficult to face each day.
"I feel incredibly isolated as I’ve found that people stop calling and inviting you out after that time you had a seizure and ruined everyone’s experience.
"Thankfully I have a very supportive partner and son. And a few very good friends who lift my spirits on darker days. I have not seen an epilepsy specialist face-to-face for four years.
"I wish people understood how lonely and terrifying it feels to live in a body that betrays you and makes you feel like a burden to others.”
The mum is now backing a nationwide campaign calling for an overhaul of neurological services, as a new landmark survey found nearly 67 per cent of people with a neurological condition are not having their mental wellbeing needs sufficiently met.
Rhiain has joined Neurological Alliance’s across the UK, which together represent more than 100 organisations including the MS Society and Epilepsy Acton, to speak out about the impact a lack of mental health support can have.
As well as worsening their neurological condition, a lack of support can leave people feeling isolated and withdrawn from social relationships and work.
The My Neuro Survey asked 8,500 people living with neurological conditions about their experiences accessing treatment, care and support.
Despite the best efforts of services and healthcare professionals across the country, over half said they hadn’t been asked about their mental wellbeing by a healthcare professional in the past three years, according to The Neurological Alliance.
Thousands are facing battles and long waits with the healthcare system, due to staff shortages, poor integration and inconsistency between services,
The report adds more than half of adults are experiencing delays to a routine neurologist appointment.
As part of the #BackThe1in6 campaign, people across the UK are being urged to sign a petition to all UK Health Ministers, calling on them to create 'a Neuro Taskforce' and set out their plans to improve treatment, care and support for people affected by neurological conditions.
The Neuro Taskforce would bring together relevant departments, health and social care bodies, professional bodies, people affected by neurological conditions and the voluntary sector in all four UK nations.
