Local woman attends first FND briefing for Oireachtas members
An Athlone woman attended the first ever presentation to Oireachtas members on Functional Neurological Disorder (FND) after running the Westport Marathon a few days earlier to help raise awareness.
Caroline Devlin, whose teenage daughter has FND, was invited by FND Ireland to Leinster House on April 17 for a presentation to Oireachtas members. The event was hosted by Senator Erin McGreehan as part of FND Awareness Month. Caroline has just taken on the role of FND Champion with FND Ireland after running a PB in the Westport Marathon on April 13 on International FND Awareness Day. Caroline proudly wore the FND Ireland logo on her running vest to raise awareness.
The presentation kicked off with Dr Aoife Laffan, Neurologist, and co-founder of FND Ireland, explaining that FND is a neurological condition that occurs when there is a problem with the functioning of the nervous system. This impacts how the brain and body sends and receives signals. Although many people have not heard of FND, it has been reported as the second most common reason to see a neurologist as an outpatient, yet there is no dedicated HSE clinical pathway for FND.
International literature suggests that the development of a FND clinical pathway reduces repeat GP referrals to neurology and other clinics, reduces repeat emergency department attendances and hospital admissions and reduces the inappropriate use of healthcare funding.
FND Ireland Awareness Ambassador Aimee Campbell presented the challenges of living with FND, and how her life has changed from competing at the highest level in Irish Dancing to now being a wheelchair user. Aimee, who is paralysed in three limbs and has many complex care needs, gave an overview of her symptoms and the many hospital admissions she has had. She highlighted in particular how her functional seizures are different from epileptic seizures.
Aimee outlined her struggles to access relevant supports, having recently won her fight for homecare support after the HSE originally turned her down for not meeting the criteria.
Eamon McPartlin, founder of FND Ireland who also lives with FND, gave a brief introduction to FND Ireland which is the first Irish registered not-for-profit organisation dedicated to advocating for and supporting those living with FND in Ireland. It is an entirely voluntary organisation with a committed team that requires funding to grow sustainably to extend its reach to the entire FND community in Ireland.
Eamon outlined how FND Ireland will focus on six key areas, Support, Advocacy, Awareness, Information, Research and Collaboration. Eamon noted the many challenges faced by those living with FND in Ireland and asked all Oireachtas members in attendance to ensure that our Government urgently put funding in place to develop the HSE clinical pathway for FND and the multidisciplinary teams urgently required.
Caroline and FND Ireland thanked Senator Eirin McGreehan for hosting the event and the many elected representatives who attended the presentation including Longford/Westmeath’s Deputy Joe Flaherty and Senator Aidan Davitt. FND Ireland also wishes to thank Minister Anne Rabbitte for taking time to attend and meet with the team.
If you would like to find out more about FND Ireland please check out their website www.fnd.ie and their social media platforms.