Dawn Golder | FND Hope UK | Banbury, UK
Community Organisation (Disability)
FND Hope UK is a standalone national charity affiliated with FND Hope. Our mission is to promote awareness, support affected individuals, & advance research for the prevention, treatment & recovery of FND.
FND Hope’s grassroots advocacy work began on the 13th April 2012 when fndhope.org became the first patient based website specifically for patients diagnosed with Functional Neurological Disorder. The site originally provided a handful of pages containing information, most of which was not available elsewhere. FND Hope went on to become the first registered 501c3 charitable organisation in the world. The early years consisted of building a strong foundation for FND Hope to create a platform that would allow the organisation to join forces with others in a global network to advocate best practices for ethical patient centred care for FND.
FND Hope UK was the first non-profit in England & Wales providing support for those throughout the UK. Together FND Hope in both the US & UK continue to forge ahead connecting researchers & patients, whilst building awareness through online social media outlets & engaging in important medical coding discussions. This strong collaboration has allowed FND Hope to influence various issues surrounding FND.
Due to hard work & dedication of a few UK advocates, patients & medical professionals working together, FND Hope UK became a registered Charity on 28th June 2017 in England & Wales & Scotland on 24th April 2018. Together the registered charities aim to change how functional symptoms are understood & defined globally & work in a concerted manner to advocate for the men, women, & children who have had their lives turned upside by physical & often debilitating functional symptoms. FND Hope & affiliates provide current information & dispel biased stereotypes & myths.
Functional Neurological Disorder [FND] is a problem with the functioning of the central nervous system, rather than structural disease. It is the brain’s inability to send & or receive signals correctly. Neurological symptoms range from paralysis, weakness, fits, seizures, fatigue, sensory issues, gait issues, & many more. Functional symptoms in their wider definition are the second commonest reason for a new neurology consultation, with functional neurological disorders such as functional movement disorders or dissociative (non-epileptic) attacks accounting for 6% of referrals, which is more than MS 4% & Parkinson’s disease 5%.
FND Hope UK have united a large group of individuals from diverse communities in terms of culture, education, ethnicity, religion, social & economic backgrounds, education levels, age & gender; all of which suffer from varying degrees of physical &/or mental health symptoms.
We envision a world where FND patients can expect to be treated with dignity, care & respect, regardless of the cause of their symptoms. Unfortunately, this is not always the case when doctors are faced with medical uncertainty. Individuals diagnosed with Functional Neurological Disorder rarely avoid stigma brought on by misconceptions & stereotypes, resulting in a lack of compassionate care & effective treatment plans. Through a collaborative approach between the medical community & patients, FND Hope UK aims to change how functional symptoms are understood & defined.
We are achieving our goal throughout many communities in the UK & with the support of leading researchers like London’s Prof. Edwards & Scotland’s Prof. Stone. Our grassroots efforts have resulted in a fast growing International community for FND patients who were otherwise isolated.
We do this the following ways:
• Provide a helpful web-based FND resource, which includes: Information, videos, links, self-help worksheets, etc.
• We consult with medical professionals seeking to better understand FND. This is done through verbal & written communication.
• We are part of the Research Group to assist FND researchers. We help connect patients to researchers & offer letters supporting particular protocols.
• We help organize & participate in World FND Week (April each year) to raise awareness globally.
• Launched Peer Support Groups in Oxford, London; Berkshire & Edinburgh with more on the horizon, in collaboration with leading hospitals that help diagnose & treat our FND community to remove the isolation that our FND patients feel.
• We help patients find medical professionals who provide treatment.
• We attend medical conferences such as the BNPA (British Neuropsychiatry Association) & the 3rd FND International Conference in Edinburgh (Sept 2017).
• Organised meeting with the Director of NICE guidelines to discuss creation of an FND NICE Guideline
• Collaborate with the Neurological Alliance, Genetic Alliance, Scotland Alliance & National Neuro Advisory Group to improve services for those with neurological conditions including attending workshops organised by NHS England