In his new blog series, MS Trust CEO David Martin discusses the latest issues affecting the MS community. In the first blog, David writes about the MS Trust's recent survey on siponimod and the challenges facing people with secondary progressive MS.
It’s not every day that I am shocked and stunned. But Caroline’s story really brought a lump to my throat. Caroline* was a paramedic for 10 years, when reluctantly, very reluctantly, she had to give up the job she loved because of her multiple sclerosis.
“I had to give up my career as a paramedic, which I adored,” said Caroline. “I am fighting to stay in work. But undoubtedly my working life will soon be coming to an end which will completely crush me.”
Caroline is one of 38,000 people in the UK with secondary progressive MS. When I first came across her comments, I thought here was one very sad, but extreme example. However when I read further into some of the 400 responses the MS Trust received as part of a recent survey, I found, very sadly, that Caroline is not alone. She represents the tip of a huge iceberg. And the impact of this debilitating progressive disease really started to hit home for me.
“I can only go where there is disabled access and toilets,” said Rupa* “I have missed family weddings and funerals including my father’s.” This just isn’t right in 2019.
“My MS has halted my independence and made me reliant on other people,” said Simone* “I feel like a prisoner in my own home. My husband’s and children’s lives have been hugely affected too.”
“Having watched my father go from being mobile to being in a care home in his 50's was heart-breaking,” Lloyd told the MS Trust survey. ”He couldn’t even make it to my wedding.”
This handful of comments offer a stark insight into the reality of living with secondary progressive MS.
They made me reflect on what the future has in store for these people and many of the other 38,000 people with secondary progressive MS in the UK. Secondary progressive MS has an impact on all aspects of people’s lives – physical, emotional, social and economic. Profoundly affecting not only the person diagnosed, but also their families, as these quotes describe so eloquently. These emotional insights have prompted me to think – what more can we do in the MS sector to address the challenges?
The comments came from a survey to inform the MS Trust’s submission to NICE (the National Institute for Health and Care Excellence) about the availability for the drug siponimod for treating secondary progressive MS. As much as siponimod will help some people, I am not advocating necessarily for that drug. In reality, it is only likely to benefit a small minority of the 38,000 people with secondary progressive MS.
It is fundamentally wrong that, in 2019, there are thousands of people who are missing out on life-changing events like weddings and funerals or are having to retire from the jobs they love because of their MS and the lack of understanding surrounding the condition. It is wrong that because MS is an invisible condition, it is largely overlooked by society. That’s the challenge for us all to meet.
Read more about siponimod and the recent application for licensing.
*Names have been changed.
