Ayad Marhoon, 24, who lives with progressive multiple sclerosis (MS), attended the MS Society’s parliamentary drop in event on Tuesday 26 October to support the charity’s Neurology Now campaign.
Once there Ayad informed an audience of MPs and peers about the impact not being able to access specialist support during the coronavirus pandemic has had on his health.
Over 130,000 people live with MS in the UK. The condition damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think.
Discussing his condition Ayad said: "Understandably, it wasn’t possible to have face-to-face appointments, over the pandemic, but my condition was rapidly declining. Getting through to a consultant about this was almost impossible, even telephone appointments were far and few. Unfortunately it’s meant I’ve gone from skipping daily to using a wheelchair every day."
People can live with MS for many years but the care necessary can require up to a dozen services, including neurologists, MS nurses, occupational therapists and physiotherapists, all working working together.
Ayad who is supporting the MS Society's Neurology Now campaign, which aims to raise £100m to find treatments for everyone with MS, explained: "The last few years have been difficult for me and I want to make sure that doesn’t happen to anyone else. I know what it feels like to have inadequate support. I can’t change my experience, but it’s important other people have the right care, at the right time.”
Prior to his audience with MPs, Ayad joined four other people living with MS to deliver an open letter to the Department of Health and Social Care (DHSC). The letter, which was signed by almost 8000 people, calls for a plan to restore and improve neurology services in England, and build a thriving, sustainable neurology workforce with investment in training.
“Getting access to vital neurology services would mean the diagnosis process and starting treatment would be a lot better. People with MS would also feel more listened to. I lacked attention and time when I needed support and this can’t continue." he said “It was important for my voice to be heard by MPs as they are in a position to make changes. I believe people connect better to stories, and this was the first opportunity I’ve had to speak publicly since the pandemic hit. Hearing the positive comments from MPs made me quite hopeful that they want to help.”
Dr Sarah Rawlings, Executive Director of Research and External Affairs at the MS Society, said: “We’re so grateful to Ayad for supporting our Neurology Now campaign. Despite 1 in 6 people living with a neurological condition in the UK, neurology services have been under-prioritised and stretched for years. The pandemic has pushed these vital services to breaking point, and the healthcare professionals that deliver them simply can’t continue under such strain.
“We’re calling on UK Governments to provide enough funding to support the development of national plans to restore and improve neurology services, as well as extra funding to recruit and retain neurology professionals. We need urgent action to make sure Ayad and everyone with MS has access to the right professionals and treatment, at the right time, across the UK.”
The Government's Department of health and social care commented: "Throughout the pandemic, the NHS has worked hard to maintain access to specialist support for conditions such as multiple sclerosis, including remote consultations for patients.
“We have provided a historic long-term settlement for the NHS, to transform services for those with long term conditions, which will see NHS funding increase by £33.9 billion by 2023-24. This is in addition to our investment to tackle the backlog, with £2 billion this year, plus £8 billion more over the next three years to deliver an extra 9 million checks, appointments and procedures for patients across the country. Dedicated surgical hubs and over 100 community diagnostic centres are also being rolled out to ramp up routine surgery.”
Support the YEP and become a subscriber today. Enjoy unlimited access to local news and the latest on Leeds United. With a digital subscription, you see fewer ads, enjoy faster load times, and get access to exclusive newsletters and content. Click here to subscribe.