MS and coronavirus care and support
We’ve been talking to lots of people across the UK about multiple sclerosis and COVID-19. These are some of the questions that crop up the most. Where services are different in different parts of the UK, we try to show this.
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.
Do you know someone who doesn’t have web access? They can get essential information in our Coronavirus and MS factsheet.
We updated our coronavirus pages on Monday 19 October with information about new restrictions in Wales and Friday 23 October with information about planned restrictions in Scotland.
Or follow these links to read all our information about:
- MS and coronavirus (COVID-19) – what are the risks?
- 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?
- 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
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.
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
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. You can read specific treatment advice on our DMTs and coronavirus page
Is there any 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 for everyone in the clinically vulnerable group is to practice ‘stringent’ social distancing.
Some people with MS are in the "extremely vulnerable" or "high risk" group because they:
- have significant difficulties with breathing or swallowing (for instance if you need artificial feeding)
- have taken alemtuzumab (Lemtrada) or cladribine (Mavenclad) within the last 12 weeks
- have had HSCT treatment in the last 12 months
Earlier in the pandemic, the UK governments recommended people self-isolate (shield) if they were considered extremely vulnerable to coronavirus. Nation-wide shielding has now been paused, though some local restrictions recommend other precautions. Your local council will have details.
In England, there’s new guidance for people who are considered extremely clinically vulnerable.
This coronavirus is a new virus, so it’s impossible to give a complete list of all the things that might increase risk if you have MS. But here’s a general view from our medical advisers on the main risks you should think about when deciding how to protect yourself from the virus.
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.
The main extra risk factors are if:
- 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
If two or more of these describe your situation, you might want to take more stringent steps to protect yourself. This could include following the guidance in your area for people considered ‘extremely clinically 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 working from home or avoiding contact with the public. For example, this might apply if you work in a hospital, a care home or a food shop. Read more about staying safe at work
Right now everyone still needs to practice social distancing, including people with multiple sclerosis. 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) Read about '1m plus' in Northern Ireland, England and Scotland
- 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 social distancing and hand hygiene.
If you’re worried about people not social distancing, you might wish to carry a card, lanyard or badge that encourages others to keep their distance.
Each UK nation has its own detailed guidance and rules.
In England, there will now be 3 levels of alert for different areas of the country: medium, high and very high. The higher the alert level, the more severe the restrictions on social contact. Even within these different levels, there can be differences at a more local level when they’re needed. If there’s different advice for your city or county, your local council website should have details. Find your local council at gov.uk
In Scotland, there’s expected to be 5 levels of alert for different areas of the country from Monday 2 November. They’ll be numbered 0 to 4. Level 4 has the most severe restrictions on social contact. The Scottish parliament votes on this plan in the week before it's due to come into force. We’ll update when we know more.
In Northern Ireland, new restrictions have been announced including closing schools for an extra week at half term.
In Wales, a 2-week lockdown has been announced. It lasts from 6pm on Friday 23 October until the start of Monday 9 November. The rules are similar to the first lockdown. For example, no one should gather with people inside or outside unless they’re part of the same household (or ‘extended household’). Paid and unpaid carers can still come into your home if you need them to. You can still go outside to exercise if you normally would. Non-essential shops will be closed. But childcare will stay open, and schools won’t completely close. After these 2 weeks, new guidance for the whole of Wales is expected. We’ll update when we know more.
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.
What is 1m plus?
In Northern Ireland and England whenever people need to social distance, they should stay:
- 2 metres apart
- 1 metre with extra precautions (also called '1m plus')
The extra precautions ("1m plus") help to avoid spreading coronavirus. What you will need to do will depend on where you are. It could mean using face coverings on public transport, which most people already have to wear in England. In work places and shops it could include installing screens and making sure people face away from each other. Keep an eye on your government's website for updates on the details.
In Scotland, the government has relaxed the 2 metre rule in some circumstances. But they say 2 metre distancing is still important for people over 70 or with an underlying health condition. Read the details of the Scottish government’s 2m rule in their COVID-19 route map
In Wales, there are some circumstances where less than 2 metres is allowed in a workplace, with extra precautions. But businesses must take all reasonable measures to maintain 2 metre distancing. Read the details of the Welsh government’s 2 metre rule in the workplace and public premises
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 or Scotland and you’re the only adult in your household, you can form a ‘support bubble’ or ‘extended household’ with one other household.
In Wales, until 6pm on Friday 23 October, any 4 households can form an ‘extended household’. Between 23 October and 9 November, the rules change. Only 2 households can join up like this, and one of the households must be a single parent or someone who lives alone.
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. 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.
If you’re considered ‘extremely clinically 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 ‘extremely clinically vulnerable’. Everyone in the bubble should take precautions as they would in a single household.
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.
To protect resources for care professionals and other workers, you shouldn’t get a surgical face mask or respirators to use when you go out. 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 which people can be fined for breaking. Each nation also has guidance for face coverings in schools. Read more about what schools are doing to reduce the risks of COVID-19
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
3. What should I do if I have MS and get COVID-19 or someone I live with does?
People with multiple sclerosis who have symptoms of COVID-19
You should self-isolate for 10 days if you have any of these COVID-19 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.
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 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. Details are expected soon for other areas of the UK.
People with MS who live with someone who has symptoms of COVID-19
If anyone else in your home has symptoms, the UK government advises where possible people with MS should temporarily move to another location rather than continuing to live with a person who is showing symptoms. Ideally, you should live elsewhere for 14 days before returning home.
They advise this because everyone with MS is technically considered ‘clinically vulnerable’. The risk of individual people with MS from COVID-19, though, can vary widely.
If you don’t move to another location, you should follow advice around household isolation. That means you and everyone in your household (or support bubble) should stay home for 14 days. Try to stay away from the people with symptoms and take the government advice about hygiene.
4. 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.
5. Can I get help with shopping and prescriptions in lockdown?
There is help available to get shopping and prescriptions during coronavirus lockdown, whether you’ve got MS or you help care for someone with MS.
6. Are there benefits or financial support I can claim in coronavirus lockdown?
Some benefits and other financial help have changed to help you manage the effects of coronavirus lockdown or self-isolation rules. This includes Carer's Allowance, Statutory Sick Pay, the Test and Trace Support payment and some assessments for PIP.
7. What rights and support do I have at work during lockdown?
You might be back at work, or wondering if your workplace is safe. We look at what the changing lockdown means for people with multiple sclerosis, and for the people who care for them, wherever you live in the UK.
8. MS, carers and care at home during lockdown
We know it’s important that family and friends who care for people with MS can stay well themselves, and get the support they need to provide that vital care.
If you get support from care workers you might also have specific questions about coronavirus and the care they provide.
You’re not alone we can help
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 Time to Chat or 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 on Friday 23 October 2020
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