The Brain Charity raises awareness of delays to diagnosis in Parliament
The launch if our pivotal report on delayed diagnosis
In September our team headed to London to launch the ‘It’s all in your head’ report in Parliament. Among the team was Rupak, a client of The Brain Charity who shared with MPs his experience of living with multiple sclerosis (MS). He shares his account of the event below.
On the 6th of September, we went to the Houses of Parliament to launch it’s ‘It’s all in your head’ report and speak to Members of Parliament about the effect neurological conditions can have on people, their families, their communities and on their physical and mental wellbeing.
The report highlights the journey to, and impact of, diagnosis for those with neurological conditions – something I have personal experience of.
Our team spent the weeks before the event emailing and inviting our local MPs to ensure a large turnout to what I would consider a hugely important event raising awareness of what neurological conditions really mean for both those it affects and those around them.
For those of us travelling by bus from Liverpool, the day of the event was a long one. We arrived at Stanmore Underground Station, parked and took the tube to Westminster. For me, being a Londoner, this was something very special.
I came to Liverpool from London after I was first diagnosed with MS in 2018. Things gradually got worse for me and I became unable to walk, my speech became slurred, I went from using walking sticks to being fully wheelchair bound, lost one of my eyes and other parts of my body would not listen to signals from my brain.
I grew up riding the tube and I never thought I’d be able to ride it again. I spent nearly 30 years commuting on the tube so this was a massive thing for me, for my mental health and for my spirit.
The event was held in the Jubilee Room and was hosted by Sir Chris Bryant MP. As MP for Rhondda, Wales, he has a particular interest in the impact of acquired brain injury to rugby players. Sir Chris Bryant MP started the day making a speech to introduce us all and the report itself. He explained many wouldn’t have the support they do if it weren’t for third sector organisations. He thanked The Brain Charity for its work supporting and advocating on behalf of those with a neurological condition.
Our diligent emailing ahead of the event meant we engaged with at least 25 MPs. While a handful joined us briefly, there were many who stayed, signed our pledge board to show their support, took a copy of the It’s all in your head report, posed for pictures, spoke to us and most importantly listened to what we had to say.
They heard first-hand what living with a neurological condition means in real life terms. Staff at The Brain Charity helped me get off the streets and into my home, giving me time with my children. For an MP to hear both my story and the charity’s experience of what it means to support someone going through that – I imagine can be very impactful.
Although my brain is unable to send messages to the rest of my body (thank you spinal cord!), I have found that my brain is the only part of my anatomy that is still fully working. To be able to talk to MPs and have them listen to us and at the very least convey to them what it means to live with a neurological condition and how they and the Government can help us was a huge thing.
We were able to explain more about what a neurological condition really means to those who can have a positive impact and help us all. I hope they take on board all we had to say and create real change.
It felt like we were making a real impact by speaking directly to the people who have power to make decisions which affect us all.
I would like to thank The Brain Charity for doing this, for the report itself, for arranging such an event, and for working to get as many MPs as possible attend.
This was a good day and I hope we made a positive impact, and that more help is coming our way because of it. I would encourage you all to read the It’s all in your head report.