MS and coronavirus care and support
We’ve been talking to people across the UK about multiple sclerosis and COVID-19. These are some of the questions that crop up the most.
We’re working closely with our medical advisers and the Association of British Neurologists (ABN) to keep this page updated. So keep checking back for the latest information.
Follow these links for information
- MS and coronavirus (COVID-19) – what are the risks?
- Are people with MS in the clinically extremely vulnerable group?
- How should I do social distancing and self-isolation if I’ve got MS?
- I have MS, what should I do if I catch COVID-19 or someone I live with does?
- Can I still get hospital appointments, MS healthcare and social care during coronavirus restrictions?
- What's the latest on the coronavirus vaccine?
- Can I get help with shopping and prescriptions in lockdown?
- Are there benefits or financial support I can claim in coronavirus lockdown?
- What rights and support do I have at work during lockdown?
- MS, carers and care at home during lockdown
- How can I get emotional help?
Early research indicates that having multiple sclerosis (MS) in itself doesn’t increase your risk of getting COVID-19.
But some people with MS could be at greater risk of getting coronavirus, or of complications if they catch it. For example, that could be because of frailty or having long-term conditions besides MS. Researchers are continuing to monitor this. Read the full list of factors our medical advisers have identified
Infections and relapses
We know infections (including viral infections) can increase the risk of relapses, though there’s limited evidence about COVID-19 specifically. You can read more on page 17 of our “Managing your relapses” booklet
DMTs and COVID-19
Studies so far indicate that in general being on a disease modifying therapy (DMT) for MS doesn’t increase your risk of getting COVID-19 or having worse symptoms. But there are some specific cases where a DMT is likely to increase risk.
You should follow your MS team's advice about treatments and any extra social distancing measures they recommend.
Research into MS and coronavirus
There’s lots of research happening to help us learn more about multiple sclerosis and coronavirus. But as this coronavirus is so new, we don’t fully understand how it affects people with MS yet. Help us understand more about how the pandemic is affecting our community by taking the MS Register survey on coronavirus and MS
- Find out what we’ve already learned from responses to the MS Register survey
- Read our blog about an early study on COVID-19 and MS in Italy
- Find out what to do if you think you or a loved one have COVID-19
Everyone with MS is technically in the "clinically vulnerable" group. This is because MS can be associated with increased risks, depending on your symptoms, treatment or other factors. And the government's data doesn't hold that level of detail about each person.
The government define the "clinically vulnerable group" as being more vulnerable to COVID-19 than the average person, but not as much as people in the “extremely vulnerable” group. It's very similar to the group of people eligible for the free annual flu jab.
Government advice about social distancing for everyone in the clinically vulnerable group depends on the restrictions in your area.
2. Are people with MS in the “clinically extremely vulnerable” (CEV) or “high risk” group?
Some people with MS are in the "extremely clinically vulnerable" or "high risk" group. This could be because of a particular treatment or the way your MS affects you. Or it could be a combination of things.
The government have reviewed who is in the clinically vulnerable group in England this week and are adding 1.7 million people to it. If you get a letter that means you should start shielding and you are now in vaccine priority group 4.
Your doctor should consider you to be clinically extremely vulnerable if you:
- have significant difficulties with breathing or swallowing (for instance if you need artificial feeding)
- have taken alemtuzumab (Lemtrada) within the last 4 weeks (or longer if specified by a clinician)
- have had HSCT treatment in the last 12 months (speak to your MS team to understand at what point your risks will reduce)
- have taken cladribine (Mavenclad), ocrelizumab (Ocrevus) or alemtuzumab (Lemtrada) within the last 6 months AND have 2 or more other risk factors listed below
You might also be considered clinically extremely vulnerable by your consultant or GP if 2 or more of the other risk factors below describe your situation. They might add you to the shielded list on this basis.
Even if you’re not on the shielding list, you might want to take more stringent steps to protect yourself, including following guidance in your area for people considered “extremely clinically vulnerable”.
This is based on the best clinical assumption until we have more evidence about what can put people at higher risk from COVID-19.
Main extra risk factors
The main extra risk factors are:
- you’re over 70
- you have trouble with things like preparing meals and housework because of frailty
- your frailty or MS symptoms mean you usually need an aid for walking, or you use a wheelchair (score 6.0 or higher on the Expanded Disability Status Scale)
- you have another long-term health condition besides MS, especially obesity, high blood pressure (also called hypertension), or diabetes. See a fuller list of long-term conditions that also apply on the US National Library of Medicine website
- you're pregnant
- you’ve had a course of alemtuzumab (Lemtrada) or cladribine (Mavenclad) in the last 6 months
- you’re taking fingolimod (Gilenya)
- you’ve had a course of ocrelizumab (Ocrevus) or rituximab in the last 12 months
Your MS team will be more familiar with your personal circumstances. So if they tell you to take precautions for any other reason it's very important you follow their advice.
Everyone with MS is technically in the wider group of "clinically vulnerable" people and should follow guidance extra carefully.
At times during the pandemic, UK governments are recommending people self-isolate (shield) if they are considered clinically extremely vulnerable to coronavirus.
Each nation has precautions they recommend, based on local risk. Your local council will have details.
There might be extra social distancing guidance in your area if you’re considered clinically extremely vulnerable.
If you have any one of the risk factors, and your work means you’re more exposed to COVID-19, you should speak to your employer and consider taking steps to avoid contact with the public. For example, this might apply if you work in a hospital, a care home or a food shop.
3. How should I do social distancing and self-isolation if I’ve got MS?
Right now everyone still needs to practice social distancing.
And the UK government says people with MS should be “particularly stringent” about following the guidelines. That means
- stay 2 metres (6ft) away from people outside your household (or support bubble)
- wash your hands regularly
- check your government’s advice and rules on face coverings and meeting up with other people.
Everyone with MS is considered ‘clinically vulnerable’, so the governments recommend you’re especially careful about wearing a face covering, social distancing and hand hygiene.
If you’re worried about people not social distancing, you can carry a card, lanyard or badge that encourages other people to keep their distance.
Each UK nation has its own detailed guidance and rules.
The whole of England is in national lockdown. The UK government COVID-19 roadmap for easing restrictions in England has plans for the first small changes on 8 March. At the moment, the key message is still for people to stay at home except for essential reasons. Reasons can include caring responsibilities, essential shopping, exercise and being part of an extended household.
If you’re considered ‘clinically extremely vulnerable’, government advice is to shield again. Everyone on the shielding list should get a letter confirming this.
In Scotland, there are 5 levels of alert for different areas of the country. They’re numbered 0 to 4. Level 4 has the most severe restrictions on social contact.
Everywhere in level 4 has ‘stay at home’ guidance until at least 5 April.
The Scottish government has set out plans to ease restrictions in the coming months. These include new rules for care home visits in early March and more social meetings allowed in mid March. All changes depend on the situation with the virus continuing to improve as expected.
Right now, the key message is for people to stay at home except for essential reasons. Reasons can include going to school where they’re open, caring responsibilities, essential shopping, exercise and being part of an extended household.
Restrictions include a ban on people going inside to collect takeaways, and only essential shops can offer click and collect. Only essential construction work is allowed inside your home.
The ‘stay at home’ guidance includes further advice for shielding if you’re considered ‘clinically extremely vulnerable’.
Northern Ireland has ‘stay at home’ guidance until at least 5 March. The Executive will review this again on 18 February
The key message is for people to stay at home except for essential reasons. Reasons can include caring responsibilities, essential shopping, exercise and being part of a support bubble.
There's guidance from the Northern Ireland Chief Medical Officer for anyone considered ‘clinically extremely vulnerable’, including only working if you can work from home.
The MS Society Resource Centre in Belfast will be closed to visitors during this lockdown. But you can get in touch by email and phone as usual.
In Wales, there are 4 different levels of alert (level 4 has the strongest restrictions). The whole of Wales is in level 4. This 'stay at home' guidance includes changes since Christmas to the rules on support bubbles and ‘extended households'.
The government has also announced new guidance for everyone in Wales who's clinically extremely vulnerable.
Contact tracing apps for mobile phones are now available in every UK nation. These apps could help control the spread of coronavirus. The contact tracing app for England and Wales will also give you local risk updates and a COVID-19 symptom checker.
They don’t pass on details of your location to the NHS. That information stays on your phone. But they can tell you if you’ve been in contact with someone who’s tested positive for coronavirus. And if you test positive, it can tell people you’ve been close to so they can self-isolate. It doesn’t tell them who you are or where you are.
People with MS can be part of a support bubble or ‘extended household’, so it’s easier in lockdown to see close friends or family who don’t live with you. There are different rules for support bubbles in each nation. But generally they mean you can think of yourselves as one household for most coronavirus guidelines. You should check for local restrictions that affect the guidance.
If you live in England, Scotland or Wales and you’re the only adult in your household, you can form a ‘support bubble’ or ‘extended household’ with one other household.
In Northern Ireland, a bubble (or ‘support unit’) can be up to 10 people from two households.
In all UK nations, you shouldn’t change your bubble once it’s formed.
Support bubble precautions
Everyone should take any extra precautions that the households usually take - for example if anyone is clinically vulnerable, or one of the bubble has a lot of contact outside the house.
Although the risk for individual people with MS from COVID-19 varies widely, everyone with MS is technically considered ‘clinically vulnerable’. The UK government says you should keep taking particular care to limit contact with others and should bear this in mind when deciding about forming a bubble.
The Scottish government says you can join an ‘extended household’ but you should strictly follow the handwashing, surface cleaning and respiratory hygiene guidance on the NHS Inform website.
In Wales, the advice is to take special care if anyone in the extended household is clinically vulnerable.
Support bubbles for clinically extremely vulnerable (CEV) people
If you’re considered ‘clinically extremely vulnerable’, you can be part of a bubble, unless local restrictions say otherwise. Check the guidance for your nation for any detailed advice for people considered ‘clinically extremely vulnerable’. Everyone in the bubble should take precautions as they would in a single household.
- Read the UK government guidelines on support bubbles in England
- Read the Scottish government guidelines on extended households for your area
- Read the Northern Ireland Executive guidelines for support bubbles
- Read the Welsh government guidelines for extended households
Should I wear a face mask if I go out?
Wearing a face covering is not a replacement for proper social distancing and good hygiene. But it might help protect other people if you’re infected with coronavirus – even if you don’t have coronavirus symptoms.
The UK government has a guide to making face-coverings at home. And the Welsh government has a video explaining how to make a 3-layer face covering which they recommend.
It’s important to wash your hands before putting your covering on and taking it off. And we should all avoid touching our faces as much as possible, whether we’re wearing a face covering or not. Coverings should be washed after every use, or thrown away if they’re disposable.
Each UK government has written guidance which says face coverings could be useful if you’re in a small space and social distancing isn’t possible. For example, on public transport or in shops.
In some cases, these are rules people can be fined for breaking. Each nation also has guidance for face coverings in schools.
If you can't wear a face covering
If your MS or another condition means you can’t wear a face covering, or take it on or off, you don’t have to wear one.
You don’t need to prove you’re exempt. But if you feel more comfortable letting people know, you can download a badge to print off or show on your phone from the UK government website.
- Read the full UK government guidance on face coverings
- Read the full Scottish government guidance on face coverings
- Read the full Northern Ireland guidance on face coverings
- Read the full Welsh government guidance on face coverings
4. What should I do if I have MS and get COVID-19 or someone I live with does?
You should self-isolate for 10 days if you have a positive COVID-19 test or any of these symptoms:
- a high temperature – you feel hot to touch on your chest or back
- a new, continuous cough – this means you've started coughing repeatedly
- you lose your normal sense of smell or taste, or notice it changes (the medical term for this is anosmia)
If you are taking a DMT, you should be able to continue taking it if your symptoms are mild.
Do not go to a GP surgery, pharmacy or hospital in person. You do not need to contact 111 to tell them you're staying at home.
If anyone in your household or support bubble has symptoms or a positive test, you should all follow the rules on self-isolating. Try to stay away from the people with symptoms and take the government advice about hygiene.
- Read the English rules for on self-isolating from the UK government
- Read the Welsh government rules on self-isolating
- Read the Scottish rules on self-isolating at NHSinform
- Read the Northern Ireland government rules on self-isolating
Anyone with symptoms should ask for a test to check if it is COVID-19. The sooner you can get tested, the more it can help control the spread of the virus.
If your test is positive, the NHS (or Public Health Agency in Northern Ireland) will get in touch with you. You’ll need to tell them about people you’ve been in direct contact with, and those people might then be told to self-isolate and where they can get support if they need it.
Book a COVID-19 test online in England and Wales or call 119.
Book a COVID-19 test online in Northern Ireland or call 0300 303 2713
Test and trace support payments
In England, Wales and Scotland, if you’re told to self-isolate by the test and trace service you might be able to get a support payment of £500, to help cover lost earnings. In Northern Ireland, you might be able to get other financial support if you’re told to self-isolate.
Support with care, shopping and keeping active if you need to self-isolate
- Find support with care at home if you’re self-isolating
- Find support to shop and collect prescriptions
- Find ways to stay mentally and physically active in lockdown
5. Can I still get hospital appointments, MS healthcare and social care during coronavirus restrictions?
You should contact your MS team as you normally would. Our medical advisers stress the importance of attending appointments with healthcare professionals, or seeking help if you feel seriously unwell.
We know many MS services have been disrupted during the pandemic and this has resulted in long waiting times for some care. So it might be more difficult to get appointments for routine things like annual reviews. You're likely to be offered an appointment by phone or video call where it's not essential to be seen face to face.
Remember, always contact your team if:
- you have signs of a relapse
- you go to hospital for any reason (even if you’re not admitted)
- you’re considering any changes to how you take your DMT
Social care services and the Coronavirus Act
The Coronavirus Act and Coronavirus (Scotland) Act could affect your social care services if you live in England, Wales or Scotland.
DMT homecare delivery service
If you have homecare services to deliver your DMT, generally these should carry on without a problem. If they are delayed or you have any difficulties contact your MS team immediately.
Talk to someone on the phone
We're here for you. If you’re worried about your MS and coronavirus and want to chat to someone, call our MS Helpline on 0808 800 8000. We’re here Monday to Friday, 9am to 7pm except bank holidays.
If you'd like to talk your worries through online with other people who know MS, visit our Online Community Forum today.
Or join one of our Virtual Wellbeing sessions and connect online with other people living with MS across the UK.
Ask an MS health expert
Or you could sign up for an information webinar. We've got plenty to choose from, take a look at our online sessions and see what suits you.
We last updated this page and our vaccine page on Wednesday 24 February 2021
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