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We estimate there are over 130,000 people with MS in the UK, and that nearly 7,000 people are newly diagnosed each year. We use our evidence to better understand the needs and lived experiences of people with MS in the UK.

Prevalence - People with MS in the UK

Incidence and prevalence

We estimate there are over 130,000 people with MS in the UK, and that nearly 7,000 people are newly diagnosed each year.

This means that around one in every 500 people in the UK has MS, and that each week, 130 people are diagnosed with MS.

We worked with Public Health England to develop these estimates. You can read their report for England on the gov.uk website.

Download our incidence and prevalence report

Impact of COVID-19

COVID-19 vaccines and MS

Using data from the MS Register, our report gives a snapshot of the types of vaccine given to people with MS. It also looks at the symptoms people with MS have reported after being vaccinated.

Life in lockdown

We know life changed for a lot of people with MS as a result of COVID-19. Using the UK MS Register, we asked over 2,000 of you: how you were feeling, what support you were getting and needed,  how your employment and finances had been affected and what information you would like.

We’ve also pulled together evidence of some of the key issues and experiences of people living with MS in Scotland, during the pandemic.

Impact of COVID-19 on MS services

In partnership with the MS Trust, we surveyed MS HealthCare Professionals across the UK in June 2020 about the impact of COVID-19 on MS services. The findings show the impact the pandemic's had on MS treatment and care, and the challenges MS services face.

Cost of MS

Understanding the cost of MS to each person, to the health and care system and society in general is important. It can help us to make effective use of resources so we can provide better outcomes for people with MS.

One study estimated the average cost in the UK of MS per person, per year as:

  • £11,400 for people with mild levels of disability
  • £22,700 for people with medium levels of disability
  • £36,500 for people with advanced disability.

Other studies put these costs as even higher, particularly for people with advanced disability. Living with advanced disability can cost more because of higher community services and informal care costs, and absence or exit from employment.

Reference: Thompson A, Kobelt G, Berg J et al. New insights into the burden and costs of multiple sclerosis in Europe: Results for the United Kingdom. Multiple Sclerosis Journal. 2017, Vol. 23(2S) 204–216.

My MS My Needs

In 2015 we worked with our community to develop seven goals. Three of those are effective treatments, responsive care and support, and independent lives.

To be able to judge if we're achieving these goals, we knew we had to understand the experiences of our community in depth.

My MS My Needs: findings from our 2019 survey

My MS My Needs is one of the largest surveys of people affected by MS in the UK. In 2019, an incredible 8,369 people living with MS responded to it – a huge thank you if you were one of them.

This report captures the experiences of the MS community as they were before the pandemic. While right now we’re focusing on supporting the MS community through this challenging time, we'll be using these new findings to continue to fight for improvements in the lives of people with MS.

Download our My MS My Needs reports

Loneliness and isolation

We surveyed people with MS to find out if they have ever felt lonely or isolated, and whether being part of a local group helped.

Our report showed that:

  • 3 in 5 people have felt lonely as a result of their MS
  • 3 in 4 people who have felt lonely as a result of their MS say being part of an MS Society local group as reduced feelings of loneliness.
  • More than half of people have felt isolated as a result of their MS.

Download our loneliness report

Patient engagement forums 2019

We want to raise the bar for MS services across the UK, so everyone with MS can access the right treatment, care and support.

However, there’s no system-wide agreement between patients and professionals about what a good quality MS service pathway looks like.

To find this out, we ran a series of forums with people with MS around the UK to talk about their experiences and what they thought constituted a good MS service.

This report captures what people told us and how they would like their MS services to be provided.

Download our patient engagement forums report