Hampshire residents pen open letter to Keir Starmer on MS

John Stainton, 62, from Chandler's Ford, and Phoebe Day, 35, from Winchester, paid the visit on Thursday, August 15, in the hope of raising awareness of the difficulties surrounding the treatment of the disease.

More than 13,000 people have signed the letter, which is part of a campaign by the MS Society to make sure the new government takes action for MS.

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Kerry, Phoebe and John (Image: Samantha Banks)

The letter calls on Sir Keir to lead his government to make significant changes, including fixing the Personal Independent Payment (PIP) process, so that it takes into account the invisible and fluctuating symptoms people with MS often experience, supporting people with MS to move into and stay in good quality employment and improving access to healthcare by addressing shortages in neurologists and MS nurses. 

John was diagnosed with primary progressive MS in 2021. His condition affects his walking, balance, and also causes difficulties with his speech. 

Before his diagnosis, John spent years as a civil servant in the Ministry of Defence. His work took him to many parts of the world, including Iraq, Cyprus and America. John also spent time working in Afghanistan, and was there during the evacuation in 2021, shortly before finding out he had MS. 

John – who is also the vice chair of MS Society’s England Council – said: “I’m proud to be at Downing Street today. Since having to retire.  I’ve want to use my skills and experience to try and create better opportunities for younger people with MS. I count myself lucky because a lot of people develop MS in their 20s or 30s, but I was diagnosed a lot later so I was still able to do a lot  in my career. People who are diagnosed younger do want to work and contribute to society, but there needs to be a system to allow that to happen.

“PIP is a means of supporting people to live life to the fullest and live as independently as possible. It often helps people to stay in work and make a meaningful impact. But the process is so broken. When I applied, I ended up having to go through mandatory reconsideration. We shouldn’t have a system that causes such stress and anxiety for people.”

Phoebe, who is originally from Alton, was diagnosed with relapsing MS during the Covid lockdown in 2020. She had been experiencing numbness and pins and needles, then for a time completely lost her eyesight and ability to walk.

Phoebe says: “Living with MS can be an incredibly isolating and invisible struggle. But coming to Downing Street and making myself and my disability visible, not only for myself but for the whole MS community, feels empowering. Navigating the condition can feel like a full-time job. But as long as MS keeps knocking on my door, I am going to keep knocking at No. 10’s door. MS is relentless but so are we!

“The PIP assessment process was excruciating and it was the most stressful aspect of my MS journey so far. I spent a lot of time proving and convincing the assessors I was impacted on a day-to-day basis. The system really needs to be improved so we can truly live better lives with MS.”

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MS affects the brain and spinal cord, impacting how people move, think and feel. Symptoms are different for everyone, but can include fatigue, pain, vision problems and mobility issues. Most people are diagnosed in their 30s or 40s, and it can affect people of all ages, ethnic backgrounds and genders.      

John and Phoebe visited Downing Street alongside reality TV’s Kerry Riches who also lives with MS. Ahead of the hand in, John and Phoebe were both involved in developing the MS Society’s campaign. 

Charlotte Gill, Head of Campaigns and Public Affairs at the MS Society, said: “We’re at Downing Street today to make sure Keir Starmer knows he has an opportunity to transform the lives of more than 150,000 people living with MS. Kerry, Phoebe and John know only too well how difficult MS can be. Today they represent over 150,000 voices from all corners of the UK calling on the UK government to act.  

“MS can be debilitating, exhausting and unpredictable. People with MS have been waiting too long for crucial improvements to disability benefits and healthcare. But now Keir Starmer’s government have the chance to tackle these problems. They can fix the PIP assessment process, enabling more people to live fulfilled, independent lives and supporting more people with MS to stay in work for longer. They can set up a neurological taskforce and improve overstretched, under-resourced neurology services, to ensure that everyone with MS gets the diagnosis, treatment and support they need at the right time. This change can’t wait. People with MS are counting on the new Prime Minister to act now.”