Wednesday 14 February 2018

Parliament Petition - 'Improve Availability of NHS Services for FND Sufferers'

*"I have FND (Functional Neurological Disorder) - this is where the brain messaging system is impaired and doesn't;t function properly 'the hardware (body) works, but the software (brain) doesn't - it is such a debilitating illness and can be as debilitating as other neurological illnesses such as MS and Parkinson's. My symptoms affects me 24/7/365 without a break. Far too often clinicians don't see FND as a diagnosis but simply as just a name for medically unexplained symptoms, or even that people like me aren't really ill at all. It took me 4 years to get to see a specialist neurologist in London who specialises in FND. Local "care" is non existent. I have to pay for carers because my illness is seen as non existent and I am desperate. Currently I'm waiting for funding for a bed in a specialist neurology rehab centre in Leeds - one of few specialist services in the country and this centre only has 4 beds for out-of-area patients like myself. Far too often clinicians have never heard of FND and sometimes are unwilling to listen to patients when we try to educate them about FND; when we try to help them to help us. As it's the brain that s affected there are a multitude of systems in the body so it is a complex condition to treat, especially when it isn't even seen as an illness in it's own right. My GP has to justify my prescriptions for an illness that I don't have but without those medications I would be left is a worsened state of suffering. I have daily seizures, my muscles are often in chronic spasm, my mobility is impaired, my bowels and bladder are affected, I am in constant pain and experience extreme fatigue amongst other symptoms. FND is a real illness, I know because I life with it every day. Currently there are no NICE guidelines for FND which leave patents and clinicians in the dark when it comes to treatment and there is a distinct lack of specialised care and treatment options. Things have to change. Even if you don't have FND can you please take a few moments to sign this petition for people like myself who are living in the dark with underfunded, insufficient care and treatment."
* This is what I wrote on my Facebook page when i shared the link to the petition