August 15 2020
Supporting those with Functional Neurological Disorders
Northampton University student Charlotte Smith met and interviewed the founder of charity FND Dimensions, Steve Webster. Here, they explore the work of charity, FND Dimensions, which works to raise awareness of Functional Neurological Disorders and provides support services to help patients deal with and understand their condition. We hear from Steve about his journey to launching a charity and the important work they are doing to help improve the lives of FND patients.
What is FND?
A Functional Neurological Disorder (or FND) affects how the nervous
system functions. The brain cannot send and receive messages to
the body correctly. It can cause symptoms including weak limbs,
seizures, paralysis, walking difficulties, tiredness, spasms and a range of sensory issues. People with FND can experience different degrees of symptoms which can vary day to day and can impact how someone moves or completes certain tasks.
“It’s about sharing a lived experience”
For so many with disabilities, support networks are a lifeline. For Steve Webster, it was talking with others that made all the difference. Following his diagnosis of FND, it was the stories of those he met whilst attending physiotherapy sessions that inspired him to set up his charity, FND Dimensions.
“Sometimes people would be in absolute tears because they’d got no one to turn to.
The health service had done as much as it was able to for them and although the treatment was ongoing, outside of treatment there was nothing. I saw a gap in the market where people who needed support were not receiving it.”
This was the driving force for creating a social group for patients within the hospital. It offered them a chance to talk about their experience of the condition with other patients.
“The important thing for them was to have someone that could understand what they were going through and could relate to it. Talking with others is liberating in itself.”
Then it grew……….
With help, Steve was able to start a few small groups in other areas.
“We started off with a couple of groups in Derby and Essex and then we got more and more interest.”
Almost four years since its launch, they have introduced over 55 groups across the UK and over a thousand members. Steve says things have improved for many of them.
“Getting involved has helped turn their life around. Chronic health conditions can affect a person’s mental health, potentially as much as their physical one – being able to talk to others who truly understand is a great safety valve.”
But it’s also benefitted Steve personally.
“It has given me purpose. After becoming ill, although I always stayed positive, I didn’t really know what I was going to do with my time. I now have a whole new set of friends and contacts across the country, like-minded people, who simply want to support others with FND as well as receive support – the beauty is that it’s a ‘two -way’ process.”
Combined with their community of volunteers, the charity’s aim is to increase awareness and provide that all-important support for patients. Throughout the pandemic, this has become more vital than ever before.
“The effects of COVID-19 are amplifying the condition. Patients with FND are already very isolated. It’s adding to the isolation people are feeling.”
The charity has started running online meetups, which have allowed more people to get involved regularly.
“There were a lot of people that couldn’t get to a meeting due to their health. We’ve seen some groups that have been historically quiet get very active.”
Steve says this has given the charity a chance to run different types of sessions, including interactive activities, which have proved popular with members.
“We’re trying to mix it up a bit. It’s not all about the support, but about fun as well. We’ve run some quizzes and bingo sessions.”
They have also been trialling targeted sessions, to support parents, carers or different age groups.
As well as taking part in fundraising for the cause, FND Dimensions also works to provide support and information by working alongside other organisations.
“Our various sponsored events have generated publicity, we got Adam Peaty the Olympic swimmer along to one of our events and local TV as well!
“We try to do things in partnership where we can, because it strengthens what we’re about and gives that added support to the patients.”
“We are nothing without our volunteers”
Steve says the success of FND Dimensions so far is down to the help and commitment of its many volunteers, who all have FND themselves.
“The organisation is run by people who truly understand the condition which makes a big difference. That helps to develop a lot of trust with members when they come on board.”
“Our volunteers are our lifeblood – we couldn’t do half of what we do if they weren’t there.”
He wants to encourage more to take part.
“We have 55 groups out there, but we don’t have a volunteer in every group. We’re juggling a lot with a small number of people, so it’s very much about supporting groups and keeping those maintained.”
Working together for change
For Steve, the journey of FND Dimensions is just beginning.
“We are delighted with our progress to date, but we know there is so much more to do.”
“People are often given a diagnosis and a website and told to get on with it. That’s where we come into our own. We want to help and support doctors in increasing services – and spread the word about the lived experiences of people with FND.”
He is keen for the charity to continue growing its reputation as a support service and increase what they offer.
“There are more people that haven’t been reached, and people being diagnosed all the time. Where patients aren’t getting the support they need, we want them to come to us. We want to put on more services to meet needs, see our numbers grow and to become one of the go-to charities for anybody with FND.”
Steve says seeking support is key.
“It’s important to remember you are not alone. It’s not always easy for someone to ask for help, but once they do, they open up a whole world of support, guidance and friendship.”
“FND doesn’t have to feel like a life sentence and things can dramatically improve.”
Steve is the Founder and Project Manager of FND Dimensions and has over 30yrs experience within the charity sector.
Steve had a long break from working due to poor health. And it was this that led him into developing the charity, alongside others.
To get involved or find out more about the FND Dimensions, you can go to http://fnddimensions.org/
Charlotte Smith is in the final year of her degree, studying Multimedia Journalism at the University of Northampton. Before starting university aged 21, she took on an apprenticeship in a local primary school and often spent time writing her online blog (https://ceelavieblog.wordpress.com/).
Her experiences as a disabled student and growing up with Cerebral Palsy means she is keen to improve experiences of people with disabilities. She is looking forward to finishing her degree and progressing on to the next stage of her career.
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