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Living with MS during the coronavirus pandemic

Matija Tomanovic

Throughout the pandemic, we’ve been looking at the impact on our community. As we’ve been speaking to decision-makers across the UK about services, care and support, the most vital tool in helping us campaign has been information from you!  

Thousands of you have taken part in a new MS Register study exploring how COVID-19 affects people with MS.

The study looked at the impact of the pandemic on your wellbeing, and how it’s affected your access to services and support. It took the form of two surveys, one in May and one in June. And last year, more than 8,000 of you told us what it’s like to live with MS in the UK, in our My MS My Needs survey.

We’ve been looking at what you’ve told us...

Life with MS in lockdown

Since the start of lockdown, many people with MS have been shielding. The MS Register study showed almost a quarter (23%) of respondents had received a shielding letter. But 30% of those who didn't receive advice to shield still decided to do so.

We know that some people have needed support to access food and essentials during lockdown. Positively, when asked what support would be useful less people told us they needed help with shopping in June, compared with 16% in May.

However, even into June, almost a third of respondents (30%) said they were feeling anxious. We know how vital support has been, and are continuing to call for this as we transition out of lockdown.

Loneliness and isolation

Many people have found it hard to cope in lockdown. However, we have more recently seen some positive changes. In June, 73% of respondents to the MS Register study said they were coping, compared with 68% of respondents in May. Shielders were significantly less likely to report they were feeling ‘calm’ or that they were ‘coping’ compared to those that were not shielding.  

Although a number of people have been feeling more connected to their community, we know that loneliness has been a big issue for many people with MS. And before the pandemic, our My MS My Needs survey (2019) showed 44% of people hadn’t been able to get the emotional support they needed.  

The MS Register study shows that 36% of those who don’t live with another adult said they felt lonely - significantly higher than the 12% of those who were living with another adult. A small proportion of people with MS (7%) have been going days without speaking to anyone. That’s why we’ve introduced new services since the crisis began, like our befriending service.

Cancelled MS appointments

The MS Register survey found almost a third (32%) of people with MS had their appointments cancelled or delayed in June, and 7% cancelled them themselves. People who were shielding were significantly more likely to say they had healthcare appointments delayed or cancelled.

But many have been having healthcare appointments over the phone. In June, 45% said they had appointments by phone or video, up from 30% in May. We know virtual appointments work really well for some people for routine appointments and want to see those continue, but they’re also not right for everyone.

Even before the pandemic, our My MS My Needs survey (2019) showed us access to therapies and services wasn’t good enough. For example, 26% of people who wanted continence support were unable to access it, and 13% of people wanting to see a neurologist were unable to do so. As part of the Neurological Alliance, we’ve been calling for neurological services to start again safely, as soon as possible.

Staying active with MS

Staying physically active can often be tricky, and My MS My Needs (2019) showed 37% of people were not getting the support they wanted to stay active. And 30% didn’t have access to physiotherapy when they needed it.  

We know staying active has been particularly hard during lockdown. The MS Register study found 29% of respondents said they were struggling to stay physically active in both May and June.

Unsurprisingly, this was significantly higher for people who have been shielding.
And when asked what support would be most useful right now, 19% of respondents wanted exercise tips or classes they could do from home.

Wider impact of COVID-19

Here, we’ve looked at some of the big challenges that our community has faced in lockdown. But the MS Register survey looked at a lot more. You also told us about the impact of the pandemic on your finances, employment and access to care and support. You can read about more of the findings from the MS Register survey on our evidence pages.

Share your story

Have you had to go without essential support during the pandemic?

We want to hear from you if you haven’t been able to access physiotherapy, occupational therapy, support to stay physically active, or help with diet, speech or language.

Email us at [email protected] to share your experiences.