Functional neurological disorder (FND) is probably the most common condition you’ve never heard of, but one charity is working to change that.
We caught up with FND Hope UK’s executive director Dawn Golder to find out more about the charity, and the vital work they do.
What is functional neurological disorder (FND)?
Functional neurological disorder (FND) is a problem with the functioning of the nervous system, and how the brain and body send and receive signals. This causes a range of neurological symptoms, such as seizures, weakness, paralysis and chronic pain.
The disruption to the body’s signals is like letters being sent to the wrong address, despite having the correct label.
Is there a known cause for FND?
FND has multiple causes, and can be triggered by physical injury, psychological or other trauma to the brain or body.
How many people have FND?
We guesstimate there to be up to 100,000 adults and up to 20,000 young adults under 16 years old diagnosed with FND.
It’s the second most frequent reason for a neurology outpatient appointment, and more prevalent than multiple sclerosis or Parkinson’s disease. But stigma means people wait years for diagnosis, leading to wasted, expensive medical visits, worsening symptoms and distress.
When and why was FND Hope UK set up?
FND Hope UK is part of the first and only global patient-led charity for people with functional neurological disorder.
The charity originated as a grassroots campaign. It uncovers the hidden world of FND, and empowers those affected to live their best possible life.
We became a registered charity on 28 June 2017 in England and Wales, and in Scotland on 24 April 2018.
How does the charity support people with FND?
FND Hope UK campaigns to improve understanding, working with researchers, health professionals and those affected.
We help people to enjoy the best life they can, advocating for their right to diagnosis, treatment and care.
FND Hope UK’s education and awareness work includes:
- Created a leading UK Medical Experts Committee to assist in FND research
- Supporting research with evidence of need, enabling those with FND to get involved – in 2020, we supported six research projects
- Growing the world's first Scientific Registry in partnership with the Genetic Alliance, bringing together research to help spot global trends, securing more than 364 registrants with FND
- Hosting webinars with medical experts in the UK – in 2020, audience reach via YouTube was 3,500.
We empower the FND community to promote wider awareness, through a network of support services and events. This activity includes:
- Launching virtual peer support groups due to COVID-19 with six set up across the UK (England, Wales, Scotland, Ireland/Northern Ireland, Carers and Parents)
- Creating online support networks, with a community of more than 16,000 via social media, plus 482,285 visitors to the international website during 2020
- Supporting fundraising and awareness raising since April 2013, including the #FNDAware international awareness campaign ‘World FND Month’, with a social reach in the UK of 202,866 via Instagram and Facebook, and 228,199 via Twitter in 2021
- #FNDandUS campaign sharing the inspiring personal FND journeys of our service users, with a social reach of 814,744.
FND Hope UK campaigns for effective diagnosis and specialist care to enable recovery. This includes:
- Organizing the first ever part Parliament Event 2022 to discuss urgent policy action for people with FND
- Petitioning government with more than 10,000 signatures to increase funding for multi-disciplinary treatment centres
- Canvassing and leading the successful change on diagnostic coding used to identify conditions
- Initiating discussions with NICE to develop FND-specific guidelines, and securing recognition for FND in new Suspected Neurological Conditions guidelines
- Building alliances across the larger community including the Neurological Alliance, Wales Neurological Alliance and Neurological Alliance of Scotland, UK Functional Neurological Forum (UK FNF) as part of the British Neuropsychiatry Association and the FND Society.
What has the support of the charity’s committed fundraisers and volunteers meant to you over the past year?
Due to the COVID-19 pandemic, we saw a decrease in the number of fundraisers supporting our charity, which was expected. At the beginning of this year, we’ve seen a large proportion of our community wanting to help raise funds for our charity to help support our FND community.
Due to the help and support of our volunteers, we were able to quickly transfer our peer support groups online to our Zoom platform. We were also able to facilitate 55 online peer groups in 2020 to help support our FND Community.
To show how important peer support is to help remove isolation, provide a listening ear, and provide support, we created an online video featuring our peer support workers.
In 2021, we hoped to have facilitated approximately 100 peer support groups online.
We also introduced online seated yoga, dance and Pilates sessions to help with movements, and mental wellbeing. We’ll have facilitated 85 sessions during the course of 2021.
What are your aims and ambitions for the future of FND diagnosis and treatment?
Our ambition is faster diagnosis, equal treatment and better care of FND to transform the lives of individuals and their loved ones.
By building leading medical expertise in the UK, we can support the wider health and social care system.
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