No medication, no food, and no support
New survey reveals extreme ways COVID-19 is affecting people with multiple sclerosis
The COVID-19 pandemic is heavily impacting the lives of some of those most vulnerable to the virus, leaving them without essential medications and support, a new survey shows today1.
The MS Society carried out the survey of more than 1,100 people living with multiple sclerosis (MS) in the UK, many of whom are at particular risk. The results found:
- Over a third of respondents (34%) said their mental health has suffered as a result of the pandemic2
- One in 20 (5%) haven’t been able to get the medications they need3
- 16% are going without essential items because they can’t get to the shops4
- Of those who need support with everyday living, such as washing or getting dressed, nearly one in five (18%)5 have had this reduced or cancelled entirely
- More than a quarter (26%) feel ‘scared’ about what COVID-19 could mean for them6
- Only 55% said they are ‘coping’7
The MS Society has seen a significant increase in those relying on its services, as many existing support structures have had to be overhauled in response to coronavirus. This includes healthcare professionals being redeployed, online food deliveries – which many people with disabilities relied on before the crisis – stretched beyond capacity, and family and friends unable to visit to provide essential care and companionship.
Jane Holyland, 58, lives with her husband in Burry Port in South West Wales. She has the relapsing form of MS, and her symptoms include vision loss, pain, and choking caused by muscle weakness, which means she can’t eat all foods. She also has respiratory issues caused by her MS.
Jane said: “For me the biggest fear has been around accessing food. I’m shielding and my husband is staying home too to keep me safe, and we went weeks without being able to access an online delivery. Even though I am vulnerable, it was only thanks to computer glitch that we eventually got a slot. After that food runs out I don’t know what we’ll do, and it doesn’t help that I can only eat certain things.
“All this uncertainty has had a major impact on my MS – the more I’ve started to feel unsafe, the worse I feel. The anxiety and extra stress bring on symptoms, but I do wonder what will happen – if I get the virus will I die from it? When you have MS every day is a battle – psychological, emotional and physical – and this has added to the pressure.”
MS damages nerves in the body and makes it harder to do everyday things, like walk, talk, eat and think. Having MS in itself does not increase your risk of getting COVID-19, but many with MS are at an increased risk of infection or complications. Thousands with the condition have been told to shield at home by the government.
Ed Holloway, Director of Services at the MS Society, said: “This is a time of real uncertainty for everyone, but for those living with MS the stakes are even higher. Having MS is hard enough, and these figures tell us many people are now being challenged in a way that feels overwhelming.
“More than 130,000 people live with MS in the UK, and we’re doing everything we can to be here for them at this time. Calls to our free MS Helpline have increased significantly and, since we can no longer meet face-to-face, we've been rapidly creating new services – including telephone befriending and virtual meet ups – so people can stay in touch from home. We understand the pressure that government and health services are under, and will do everything we can to be here for people affected by MS so they never have to feel alone. But we urgently need to expand our support so we can continue to be there for everyone in this difficult time.”
Time to Chat – a service supporting virtual meetings for people with MS, and Keep in Touch – a service designed to help those who might not see anyone day to day with a regular check-in phone call, are two of the new emotional support services the MS Society has developed to replace its vital face-to-face options, which have had to stop during the lockdown.
For more information or to donate visit mssociety.org.uk/ms-never-