A teacher has voiced her support for a health campaign backed by Yorkshire charities after being sent home by doctors despite suffering a “life-threatening” stroke.
In August 2021, Manchester teacher, Lili Vachon, 27, thought her contact lens had slipped after her vision suddenly became blurred.
Despite taking out her contacts, her eyesight didn’t improve and she knew that something was wrong.
Ms Vachon said: “I just remember everything going sideways, I was trying to speak but nothing was making sense. Luckily my housemate was in and she’s a nurse, so I had no choice but to crawl across the corridor to reach her.”
The pair didn’t even consider it was a stroke, so rang 111 and an ambulance was dispatched. But after waiting in A&E for hours and receiving no tests, she was sent home with a migraine.
Ms Vachon, from Lancashire, said: “I could barely speak and my vision wasn’t right, but the doctor just said it was a migraine and sent me on my way.
“Looking back now it was quite a traumatic experience and I can’t believe they sent me home in such an unsafe state.”
After her symptoms didn’t improve, Ms Vachon was sent for an MRI scan as an outpatient to determine the cause of her collapse.
It wasn’t until two weeks later that Ms Vachon got her stroke diagnosis via a phone call.
Ms Vachon said: “I was on my own and just broke down in tears when I got the call. I always thought that strokes were rare and only happened to people in their 70s, so it was such a shock.
“I was also really angry just knowing if the clot hadn’t passed, I could have died at home.”
Ms Vachon feels she was also let down after her diagnosis. It took until February 2022 before she had an appointment with a stroke consultant. During that time, she received no help with speech or physiotherapy and the community stroke nurse only phoned her once.
Ms Vachon said: “I told them how badly I was struggling and they said they’d refer me for some counselling, but they never did. One of the community nurses asked me if I could feed and bathe myself, which I could, so they discharged me.
“The GPs and the consultants spent more time arguing over whose responsibility it was to make the referrals, when I didn’t care who did it, I just wanted some support.”
Ms Vachon has since been diagnosed with PFO, which is a hole in the heart that hasn’t closed naturally at birth and can make people susceptible to strokes. It is treated with an operation where a device is fitted to close the hole meaning people don’t have to be on blood thinners for the rest of their life.
Usually it’s an easy fix, but for Ms Vachon the operation didn’t go to plan and was abandoned halfway through when they realised the hole in her heart was bigger than initially thought due to a birth defect.
She said: “I was so stressed before the operation, but I kept thinking at least it can be fixed and I can finally get my life back.
“When it was stopped, I really struggled to come to terms with it as I knew it meant being put back on that waiting list.”
The waiting list feels never-ending and Ms Vachon expects to be on it for at least three years as her consultant only works one day a month.
The experience itself was difficult for her to deal with, but the waiting has put her life on hold for the foreseeable future, which has made it harder to stay positive.
The teacher at St Agnes school said: “Having a stroke is awful as a young person. It’s hard to think that people can look at you and think you look fine when in reality you’re struggling with everything from fatigue to cognitive difficulties.
“I went into that operation feeling so positive, but now my life is on pause and so much of my 20s has been wasted. Recovery is a postcode lottery and I can feel so lonely.”
Since her diagnosis, Ms Vachon has received great support from the charity Different Strokes where she’s found comfort in speaking to other young people who have similar experiences to her.
She said: “It’s not just helped me, but it’s helped my mum as well to understand a bit more about my symptoms and find positivity in hearing other people’s stories and knowing you’re not alone.
“The Facebook group at Different Strokes has been amazing and the community always makes you feel supported. There’s never a question that’s too silly to ask.”
Ms Vachon has also recently backed a campaign supported by Yorkshire charities to raise awareness for neurological conditions.
The Neurological Alliance runs a ‘Back the 1 in 6 campaign’ aimed at getting better treatment for those who have experienced conditions from strokes to MS. They are particularly eager to highlight the lack of mental health support offered to those living with such conditions.
The organisation is supported by Yorkshire charities including Neuro Key, who support people in North Yorkshire, and the Yorkshire and Humberside Association of Neurological Organisations (YHANO), which is a regional network of neurological organisations across Yorkshire providing a forum to share collective experiences.
Service development manager at YHANO, Sal Hastings, said: “With 1 in 6 people estimated to have a neurological condition it is vital that these voices are heard, we are much louder together than we are apart.
“Whilst each neurological condition will have differences, there are many similarities people will face. These can include; access to treatments, diagnosis, timely health and social care, equipment and adaptations.
“These are all areas which impact people with MND but also someone who has MS, Parkinson’s or a Stroke.”
The importance of raising awareness for neurological conditions like strokes across Yorkshire is echoed by Neuro Key, which has volunteers across North Yorkshire on hand to help care for those living with neurological conditions.
Head of operations, Jo Cole, said: “There are over 320 neurological conditions and on occasions people have more than one. Services are extremely fragmented now and people struggle in rural communities to find out the what, where and how they can have support or access the services they need.
“We deliver peer support across North Yorkshire to reduce the isolation people can feel when diagnosed and access a friendly face to share their experiences and feel comfortable
in how they are managing as there’s a chronic need for more understanding in public services about how people can manage their lives.”
The 1 in 6 campaign was based on a survey run from 2021 to 2022, which accounted for 8,500 people’s experiences. The group wants more government action to address the problems people face when diagnosed with a neurological condition like a stroke.
Ms Vachon said: “At least 1 in 6 people in the community, including in Sheffield, will have a neurological condition. It’s so important for people to take a joined-up approach to these services so that as many people as possible can get the support they need.
“So many people are dismissed and despite losing so much of myself, not everyone will be as lucky as I’ve been not to have any physical disabilities. I especially fear for those who can’t advocate for themselves.”
To find out more about Different Strokes visit the website here
Sign the ‘Back the 1 in 6’ petition here
