17 December 2025
Ageing well with MS: Research Update
Researchers from Alabama explored what it means to age well with MS, using interviews with older people about their wellbeing and quality of life.
Are people living with Secondary Progressive MS being forgotten? Yes, says a new report. MS Trust CEO David Martin*, who was involved in putting together the report, writes about what must be done to help the 'forgotten many'.
When is the NHS going to stop ignoring many of the 60,000 people living with secondary progressive MS (SPMS)? Time and time again, I have heard stories of people with progressive MS struggling at home, feeling like they have been forgotten. One told me they felt they had been discharged because there was little else that could be done for them.
Admittedly, there is not currently enough capacity in neurology services to manage this group of patients without services working differently. But that shouldn't lead to the health needs of 60,000 people living with SPMS being largely ignored or overlooked. That is quite simply wrong in 21st century Britain. No patient with secondary progressive MS should be left behind.
There's a compelling new report published this week (June 2020) that I helped create, The Forgotten Many: A 2020 Vision for Secondary Progressive Multiple Sclerosis (PDF, 3.4MB). It identifies for the first time the total numbers of people now living with SPMS.
The MS Trust has come up with a partial solution to some of the issues. Our Advanced MS Champions programme is piloting how best to provide guidance, support and coordinated care for those people living with advanced multiple sclerosis who need it most. The six pilots are expected to save the NHS £3m while improving the quality of life for so many people.
Beyond the Champions, there are four simple steps the report highlights in particular that would transform the lives of many of the people living with SPMS:
- We need to find “the forgotten many” and then offer them a holistic service to improve their quality of life
- Guidance for SPMS diagnosis would aid prompt diagnosis and help integrate psychological support.
- Every person with SPMS should have a review every year to monitor their symptoms and assess which treatments they could benefit from.
- A national agreed integrated pathway should be developed for people living with SPMS.
Yes, some of this will cost more money. But at the moment, the report highlights how £86 million was spent on emergency hospital admissions for people living with MS in 2018/19 – surely there's a better way to use that money?
In the meantime, we all have to find ways to ensure that the 60,000 people living with SPMS are no longer ignored. And a great start to that would be if NHS England would lead an appropriate and targeted awareness campaign to increase understanding and awareness of SPMS.
