My senses were all over the place, Sirens, buses, helicopters, tourists chattering and the music being blasted by protestors. I had arrived at Downing Street.
Wearing bright orange (MS Colours) I worried about being mistaken for the Stop Oil brigade. However, after checks, I swiftly moved through the gates leaving the tourists wondering who we were.
The important bit – No, not the reason for being there – that’s a given. It’s the photo opportunity outside the infamous mirror-polished front door.
Accessibility to the building was via removable ramps for the front door. I was intrigued to find out how accessible the building is to work for the government and be physically disabled.
Once inside the large hallway, we surrendered our phones without question.
The staff were all so friendly and helpful and recognised the impact of the occasion.
The small lift meant we went one at a time. (Not quite sure my powerchair would have fitted but I was assured that there isn’t one they haven’t got in yet even with a bit of toing and froing. A carpeted step lift that slid back into steps was an interesting feature. Of course, I had to use the toilet which was a small accessible room that served its purpose. The adaptations to such an old building were sensitive but serviceable. Of course, it would have been lovely not to wait for assistance at every turn but in some places, you must accept good old-fashioned human help (with the aid of technology).
I was shown through some other function rooms with large Georgian windows and stunning artwork including an instantly recognisable Lowry Painting. I’m sure the other paintings were of far more importance but I couldn’t tell you who the artists or subjects were. What amazed me was how quiet it was inside, almost relaxing or a false sense of security. I am not quite sure which. The stateroom we were using had an imposing dark wood table, interesting art and the shiniest silverware you have ever possibly seen. We sat down with a drink and a pastry – ME and a pastry! – disaster written all over it but who cares. My brain was now ready for the real reason I was there.
The MS Society had been invited to a roundtable in Number 10 Downing Street to bring together experts and stakeholders in the field of multiple sclerosis to identify the challenge faced by people living with progressive MS in the UK today.
We were welcomed by Nick Moberly, (CEO, MS Society) who outlined the reasons for the meeting.
Dr Sarah Rawlings (Executive Director of Research and External Affairs) spoke about MS research, where we are currently and looking ahead. Octopus is a multi-arm, multi-stage design – the first time this has been used in MS research. Dr Waqar Rashid (Consultant Neurologist and MS Society Medical Advisor) explained how a new way of working needs to be bought in to ensure Neurological Services are maintained including the need for more neurologists. Currently, the waiting times and services offered are not acceptable.
Shockingly, the UK ranks 43rd out of 45 European Nations for the number of neurologists per head. (Claudio L. A. Bassetti, 2022)
Dr Helen Ford (Consultant Neurologist) told us how new therapies being trialled are hoping to increase self-efficiency in people with MS in the workplace. She also interestingly spoke about her research on MS in specific populations.
Alisa Guidi, who lives with progressive MS spoke about her experiences and how she is one of the first participants in the Octopus Trial. She had her trusted Octopus with her for great Photo opportunities. Sabrina Fox talked of her life with MS and the importance of new treatments for progressive MS. These ladies put themselves out there to help move action for MS which I applaud.
I had the chance to explain how I and others I represent, face challenges to access services whether Neurology, Therapies or Mental Health Services. How people with progressive MS often don’t access primary healthcare services as they appear to be brushed off due to it being a lifelong condition and incurable. I was able to say about issues with transport to hospitals and services. We are expected to travel long distances for appointments. I made sure I was able to inform everyone in the room of the issues with public transport as they can only take one wheelchair or pram. Buses have been cut in rural areas meaning it is not possible to get anywhere. Let alone afford to do these trips in taxis that can also only take one wheelchair.
Obviously, I could have talked for ages as I am passionate about fairness, whatever the health condition.
Charlotte Nichols MP (Chair, APPG for MS (All-Party Parliamentary Group)) expressed her views and what needed to happen going forward. While Lord Dubs (Vice Chair, APPG for MS) spoke of his own connections to MS and the plight of individuals facing an uncertain future.
David Martin (CEO MS Trust and Chair of Neurological Alliance) eloquently emphasized the significance of collaboration to address the increasing prevalence of neurological conditions and prevent waste within the NHS. According to the MS Society in 2019-2020 MS cost £98 million in Emergency care with most having the potential to be avoided with preventative care such as urinary tract or respiratory infection care.
Listening to this and asking questions were Myles Stacy (Special Adviser to the Prime Minister) and Will Quince (Health Minister) along with some key MS Society staff.
After the meeting concluded we met outside again and had a chance to talk with each other. It was interesting to speak with the MPs to find out how they saw this moving forward. I have no doubt this is not the last time No 10 will be hearing from the MS Community.
A thoroughly exhausting but perfect day out knowing I am doing my ‘bit’ for everyone affected by MS.
By Yolanda Barker
Student Journalist with The Academy of Disabled Journalists.