Susan’s story – #BackThe1in6
Susan was diagnosed with a traumatic brain injury after an accident near her home. She is one of the 1 in 6 people in the UK living with a neurological condition.
She’s supporting the #BackThe1in6 campaign and calling on governments across the UK to and set up a Neuro Taskforce.
In 2011 I was cycling along the local canal towpath and a cat was sitting on the path. It did not move until I was next to it, and then it ran under the wheel, tipping me violently onto the ground.
I lost my speech initially, which became blurred and confused, then I rapidly lost the use of the right hand side of my body (leg, arm and facial muscles). Soon I wasn’t able to breathe on my own and was put on oxygen.
The whole thing was massively scary, as I was completely aware of the increasing losses, but unable to communicate at all to anyone. I was watching myself – like a stranger from the outside – losing more and more control over my body and I did not know where it would end.
I was brought to A&E by ambulance car and left in A&E for 15 hours. No consultant visited and I was given no information. I spent just seven days in hospital before being discharged. I received no follow-up care from my local hospital or a specialist at the time.
I was diagnosed with a traumatic brain injury (TBI). I was alive but could not get my brain to make any sense. I could not get dressed or undressed, showered or even walk safely on my own. I could not communicate with my son to tell him what I needed.
I have fought back to regain the maximum of my old self that satisfies my needs. I had three years of private speech therapy in order to regain sufficient control over my voice and muscles, and to prevent my speech from failing when under stress. Had my family not had funds to pay for private speech therapy for three years, I would not be able to talk.
Life now is as good as it can be. I push myself to my limits. I took up a martial art (Aikido) to regain my posture and to help with mental confidence. I returned to riding my Ducati motorbike. Among other things, I now give presentations to students (mostly speech and language therapy students) about my accident and the ongoing effects.
I’m backing The Neurological Alliance’s campaign to call on the government to create a Neuro Taskforce because my life would have been immeasurably improved by having access to care that took into account the full impact of a TBI – from physical things like rehab and speech therapy to mental wellbeing support, and information for myself and my carers about prognoses and how to support someone with a neurological condition.
Everyone, wherever they live, should have access to care to allow them to adjust to the reality of their neurological condition. A Neuro Taskforce to bring together existing initiatives and information to improve care for people affected by neurological conditions would be of immense benefit.
Back the 1 in 6 for Susan. Sign the petition now and call on UK governments to create a Neuro Taskforce and deliver real change for everyone affected by a neurological condition.