Dr Mike Dilley, Consultant NeuroPsychiatrist helped launch the first ever meeting of the Cranleigh FND Peer Support group. The meeting was organised jointly by Surrey Hills Rehab and FND Hope UK, a charitable organisation promoting awareness and support for individuals and carers affected by Functional Neurological Disorder.
It was a great success and for many it was the first time they had ever met someone else with FND. The group comprised a mixture of those diagnosed with FND and professionals who wanted to learn more about this little known condition.
FND Hope UK as a charity has a huge task ahead as most people have never heard of FND until they, or someone they knew were diagnosed. Yet, FND is the second most likely reason for anyone being referred to a neurologist, after headaches.
Dr Dilley from St George’s Hospital, London gave news of the latest research and answered questions. He revealed plans for more joined up treatment in the future so that those diagnosed will be able to access appropriate treatment. Those with FND can find themselves sent home, often taking years for them to be correctly diagnosed, despite life being very definitely altered. The quicker someone is diagnosed, the greater the chance of them learning ways to counter or even regain the functions lost.
The group discussed that the range of symptoms is huge and the stress of not knowing what is wrong can for some speed up something called ‘disassociation’ – where a body loses more and more many previously automatic functions – for e.g. mobility, speech, vision, hearing, swallowing – literally anything can stop working or become intermittent. Some will suffer non epileptic seizures, yet initially misdiagnosed as epileptic.
The specialist revealed that resources are sadly short, but that St George’s is leading the world in this field. All assembled felt lucky to have in our region those who are eminent in this field. Some of the group told of harrowing experiences dealing with ignorance of this condition and how even many health care professionals still do not know what FND is.
The neurologist explained that FND is more of a software issue than hardware. That everyone’s experience is very different, but all with FND have something that interferes with the way the brain communicates with the body and some vital ‘factory settings’ can be lost or interrupted. The trigger can sometimes be an injury, illness, stress a combination of these things or just spontaneous. Every case is different.
The next meeting is scheduled for Thursday September 26th and December 19th. More details from: www.surreyhillsrehab.co.uk or https://fndhope.org or book tickets through EventBrite. 
