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MS and coronavirus care and support

We’ve been talking to lots of people in our community about multiple sclerosis and COVID-19. These are some of the questions that crop up the most.

We updated this page on Friday 3 April.

We'll be regularly reviewing and updating this page, so keep checking back for the latest information. You can also sign up for our free COVID-19 and MS webinar on Wednesday 8 April.

MS, staying at home and self isolation

Right now we all need to do one of two things:

  • Stay at home. Everyone (if they have MS or not) should now stay at home as much as possible, only going out for food, health reasons or essential work. And keeping at least 2 metres away from other people when outside.
  • Self-isolate. Self-isolating means you are asked to stay at home completely, avoiding going out if at all possible. This applies to people who have symptoms of COVID-19, live with someone with symptoms, or are at significantly higher risk of an infection (also called the “extremely vulnerable” group)

We explain who should follow each set of measures on this page. Use these links to jump to the section you need:

I don't have any COVID-19 symptoms but I want to know the risks

I have at least one COVID-19 symptom

I want to know about caring, shopping, benefits, financial support and social care

I don’t have COVID 19 symptoms, but I want to know the risks

1. I have MS, am I more at risk of getting COVID-19? What about if I have progressive MS?

Having MS in itself doesn’t increase your risk of getting COVID-19. But many people with MS will have some increased risk of infection, or complications as a result of infection, because of the progression of their MS, or the effects of their DMT.

We're working closely with our medical advisers and the Association of British Neurologists (ABN) to keep this page updated.

2. Am I in the high risk or extremely vulnerable category?

You might have had a letter, text or phone call from the government recommending you ‘shield’ (self-isolate at home for 12 weeks). This message has gone to a wide group of people, to make sure people at higher risk take action as quickly as possible. You might have received this message even if you don’t meet the official criteria for “extremely vulnerable”.

If you do get this message, you have a right to 12-week self-isolation. Find out what your local council can do to support you through the government website. You can also find more links to information and support at the bottom of this page.

If you're in the "extremely vulnerable" category because of your treatment with alemtuzumab (Lemtrada), cladribine (Mavenclad) or HSCT and live in England, you can self-register on the government website for extra help.

If you meet any of the criteria, or your MS team are concerned about your risk for other reasons (for example if you have other health conditions as well as MS), you’ll get a follow-up letter confirming you should be shielding for 12 weeks. It is very important you follow this advice.

You're considered to be extremely vulnerable or high risk if:

  • 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.

If you're self-isolating because of a recent course of alemtuzumab or cladribine, you generally will only need to self-isolate up to 12 weeks from the date of your course. So for example if you had an infusion of alemtuzumab 8 weeks ago, you should self-isolate for another 4 weeks.

If you are self-isolating because of HSCT, you should discuss the period of time with your transplant team as they may recommend longer.

If you think you or a loved one are in this highest risk category and have not received a letter or been contacted by your GP, get in touch with your GP or hospital doctor by phone or online.

Read about shielding and who should shield on the government's website

Other people with MS do not need to practice shielding.

But you should continue to be particularly careful to follow UK government advice and stay at home:

  • only go outside for food, health reasons or essential work
  • stay 2 metres (6ft) away from other people
  • wash your hands as soon as you get home

Read UK government advice on staying at home

Read our tips on coping with staying at home

3. Are there other people at higher risk from COVID-19?

Having MS does not in itself increase your risk of getting COVID-19. Some people with MS will have no higher risk from it than anyone else.

The UK government would describe you as “extremely vulnerable” to the virus because of your MS only if:

  • you have significant difficulties with breathing or swallowing
  • have taken alemtuzumab (Lemtrada) or cladribine (Mavenclad) within the last 12 weeks
  • have had HSCT treatment in the last 12 months

But there are other things that could put you at higher risk – some related to MS, some not.

This is a new virus, so it’s impossible to give a complete list of all the things that might increase risk. But here’s a general view from our medical advisors on the main risks you should think about when deciding how to protect yourself from the virus.

Of course 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 risk factors are:

  • If you are over 70 years old
  • If you have trouble with things like preparing meals and housework because of frailty
  • If 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
  • If you're pregnant
  • If you’ve had a course of alemtuzumab (Lemtrada) or cladribine (Mavenclad) in the last 6 months
  • If you’re taking fingolimod (Gilenya)
  • If you’ve had a course of ocrelizumab (Ocrevus) or rituximab in the last 12 months

These different things add together, so the more that apply, the greater the risk.

If two or more describe your situation, we would generally recommend that you consider taking stringent steps to protect yourself. This could include taking the same precautions as people who are officially “extremely vulnerable”. That means self-isolating (shielding) at home for a full 12 weeks.

At the least, we’d recommend you do even less outside your home or garden than other people. Restrict outdoor exercise and essential shopping to an absolute minimum.

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.

4. What is self-isolation?

Self-isolating means not leaving your home for any reason.

You should self-isolate for 12 weeks if you are on the extremely vulnerable list.

You should self-isolate for 7 days if you have either:

  • a high temperature – you feel hot to touch on your chest or back
  • a new, continuous cough – this means you've started coughing repeatedly

If anyone else in your home has symptoms, the 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.

If it’s not possible for you to move to another location, you should follow advice around household isolation – meaning that you and everyone in your household should stay home for 14 days. Try to stay away from the people with symptoms and take the government advice about hygiene.

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.

Some people who are at significantly higher risk are being asked to self-isolate even if no one in their household has symptoms (including them). This is also known as 'shielding'. It applies to people who have significant difficulties with breathing and swallowing or who have recently had certain DMTs.

Read advice about self-isolating from your national health care provider

5. Does my recent infusion treatment make me more vulnerable to coronavirus?

If you've taken alemtuzumab or cladribine within the last 12 weeks, you should shield (self-isolate) until 12 weeks after the date of your course. So for example if you had an infusion of alemtuzumab 8 weeks ago, you should self-isolate for at least another 4 weeks.

If you've had HSCT treatment in the last year, speak to your transplant team about shielding (self-isolating). They may recommend you carry on for longer than 12 weeks.

General advice for people on natalizumab (Tysabri) infusions is to still attend your appointments when you can, as there are risks to stopping these without careful planning. Speak to your MS team before making any changes. Some centres are moving MS-related infusions to more specific sites to minimise the risk of coming into contact with anyone with COVID-19 symptoms.

Read about shielding on the NHS website

6. I’m on a DMT, does that mean I’m more likely to get COVID-19?

DMTs change how your immune system works, which can make the chance of catching an infection higher.

These risks are different for different DMTS, but generally they are moderate.

Read our information on coronavirus and DMTs

7. Will my MS health care team still be available?

We know there are reports that some MS specialist staff are being asked to prepare to help with the increasing cases of COVID-19.

Because of this, some MS teams will move to a "minimum safe service". This means it might be more difficult to get appointments for routine things like annual reviews or blood tests to monitor your DMT.

You can help by checking our website or contacting our MS Helpline for answers before contacting your team. But you should still 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.

Read more about how the Coronavirus Act might affect social care services in England and Wales

8. Should I go to my scheduled hospital appointment?

You should check your hospital’s website before attending. In many cases it might be possible to replace a face-to-face meeting with a telephone appointment and in other cases routine appointments may be postponed.

If clinics or appointments do change, you should be informed. But it’s worth double-checking the hospital website for any general information before you go. If there’s no relevant information, assume your appointment or clinic will go ahead as usual.

General advice for people on natalizumab (Tysabri) infusions is to still attend your appointments when you can, as there are risks to stopping these without careful planning. Speak to your MS team before making any changes. Some are moving MS-related infusions to more specific sites to minimise the risk of coming into contact with anyone with COVID-19 symptoms.

If you have a cough, high temperature or shortness of breath, you should not go to your hospital appointment. Instead, stay at home and contact your MS team for advice.

9. I have MS and work in healthcare, should I be avoiding patients?

We understand specific advice is being developed by the NHS right now.

While waiting for this advice, immunosuppressed healthcare workers should make sure their line manager/clinical lead, occupational health and neurologist are all aware of their medication and scope of practice. Your scope of practice is all the activities you perform when delivering patient care.

I have at least one COVID-19 symptom

10. I've developed symptoms of COVID-19, what should I do?

If you have either of these symptoms you should self-isolate for 7 days:

  • a high temperature – you feel hot to touch on your chest or back
  • a new, continuous cough – this means you've started coughing repeatedly

If anyone else in your home has symptoms, the 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.

If it’s not possible for you to move to another location, you should follow advice around household isolation – meaning that you and everyone in your household should stay home for 14 days. Try to stay away from the people with symptoms and take the government advice about hygiene.

If you've taken alemtuzumab or cladribine within the last 12 weeks, you should self-isolate until at least 12 weeks after the date of your course. So for example if you had an infusion of alemtuzumab 8 weeks ago, you should self-isolate for at least another 4 weeks.

If you've had HSCT treatment in the last 12 months, speak to your transplant team about self-isolating. They may recommend you carry on for longer than 3 months post-treatment.

If you're 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.

Read advice about self-isolating from your local health care provider

11. Do I need to talk to a health professional?

If you have mild symptoms the NHS advise you should self-isolate without having to speak to a doctor or nurse.

If you're not in immediate danger and

  • you feel you cannot cope with your symptoms at home
  • your condition gets worse
  • your symptoms do not get better after 7 days

use the 111 coronavirus service.

If it is an emergency and you think you need an ambulance, call 999 and make sure to mention that you have symptoms of COVID-19.

If you're advised to go to your local hospital by any health professional, or go to hospital for any other reason, you should tell you MS team (even if you are not admitted). If you are taking a DMT they may want to discuss pausing or switching your treatment for the time being.

12. Does COVID-19 increase my chances of a relapse?

While there is limited evidence for COVID-19 specifically, we do know that infections (including viral infections) can increase the risk of relapses.

You can read more on page 17 of our “Managing your relapses” booklet.

13. Can I manage COVID-19 with over-the-counter painkillers?

Painkillers can help you manage your symptoms.

In general you should avoid anti-inflammatory painkillers like ibuprofen and use other options like paracetamol instead. But if you're already taking an anti-inflammatory painkiller to manage another condition, you shouldn't stop without talking to a doctor.

Caring, benefits, financial support and social care

14. I am worried I can't get the help I need with shopping and care

You're not alone, there are a few ways to get help.

If you’re in the extremely vulnerable or high risk category, you should have had a letter from the NHS this week telling you to practice shielding (completely self-isolating at home). It will also tell you how to get help with food, shopping deliveries and any care you need. You can register yourself, or on behalf of someone else.

The COVID-19 Mutual Aid website has a list of local groups that might be able to help.

You also can find out what your local government can do to support you on the UK government website.

If you live in Scotland, you can use the Viral Kindness website to find help in your local community including with food shopping and deliveries.

In Northern Ireland, contact the COVID-19 Community Helpline for information and guidance from Advice NI.

We’ll update with any similar support that becomes available in Wales.

Follow us on Twitter and Facebook for the latest. At the moment, the UK government links to national websites for guidance.

Social care services – Update Tuesday 31 March

The UK parliament Coronavirus Act might affect some social care services in England and Wales. From 31 March 2020, councils in England will be able to make temporary changes to the care and support that’s available. This is known as an emergency period.

They must try and provide the same services, but if absolutely necessary, they can change what they offer in order to prioritise people with the highest needs.

Under the Act, the Welsh government can allow similar changes if it decides to. At the moment, we don’t know what affect, if any, it will have in different areas of England and Wales. We will be monitoring the situation very closely and raising any concerns urgently with government.

If your council does declare an emergency period, they should let you know. Until an emergency period, your legal rights to care and support don’t change - see our information on social care.

Your council must contact you if they’re planning any changes that affect the care or support you get at the moment, so they can involve you in decisions.

If you don’t feel you're getting the care and support you need, contact your council (this might be your social worker) and care provider. If you don’t get the response you hoped for, contact our MS Helpline or the MS Legal Officer at the Disability Law Service

Your right to complain to your local authority about the care and support you receive stays the same.

Read the Citizens Advice UK’s information about your rights around care and support

Read the UK government guidance on getting help while isolating

Supermarket priority shopping times and deliveries

Some major supermarkets have introduced priority shopping hours in stores for vulnerable people. According to the government list, that includes everyone with MS. We’re trying to confirm that with them right now.

Supermarkets have also introduced priority booking online for vulnerable customers trying to book a home delivery. If you live in England, are in the high risk group and already registered with a supermarket, you should get a letter from them this week (as of 26 March).

We’re waiting to hear what the situation will be for people in Wales, Scotland and Northern Ireland.

We know supermarkets are experiencing extremely high demand and not everyone with MS has been able to get a delivery. We've made UK government aware of the problem and we’re working to make sure they improve things as quickly as possible.

In the meantime, the COVID-19 Mutual Aid website has a list of local groups that might be able to help.

Support for carers

If you care for someone you can find support where you live on the Carers UK website.

And you might be eligible for Carers Allowance.

You also can find out what your local government can do to support you on the UK government website.

As a carer you should also be able to use the supermarket's priority shopping hour for vulnerable people.

If the person with MS you care for has

  • significant difficulties with breathing or swallowing (for example if they need artificial feeding)
  • has taken alemtuzumab (Lemtrada) or cladribine (Mavenclad) within the last 12 weeks
  • has had HSCT treatment in the last 12 months

you should self-register for the extra support you need on the UK government website. This includes help with food, shopping deliveries and any additional care you need.

We’ll update with any similar support that becomes available in Northern Ireland, Scotland and Wales. Follow us on Twitter and Facebook for the latest.

At the moment, the UK government links to national websites for guidance.

15. How can I help protect my loved one who has multiple sclerosis?

If you care for someone, you can find support where you live on the Carers UK website

If you're a key worker and still have to go in to work, the UK government has advice on protecting the people you live with.

You also can find out what your local government can do to support you on the UK government website.

If the person with MS you care for lives in England and has

  • significant difficulties with breathing or swallowing (for example if they need artificial feeding)
  • has taken alemtuzumab (Lemtrada) or cladribine (Mavenclad) within the last 12 weeks
  • has had HSCT treatment in the last 12 months

you should self-register for the extra support you need on the government website. This includes help with food, shopping deliveries and any additional care you need.

You might also be eligible for Carer's Allowance.

Find the latest on the government COVID-19 page

16. Is there any extra financial help available for me?

The UK government has announced greater access to statutory sick pay and employment support to help people affected financially by coronavirus. This includes:

  • people who can’t work because they’ve been advised to self-isolate
  • people caring for others within the same household who have coronavirus symptoms and have been told to self-isolate
  • a job retention scheme to help people keep their jobs

Find more information in the government guide to employers and businesses

Other financial help from the UK government includes:

  • a £20 per week increase on the standard rate of Universal Credit and Tax Credits for one year
  • an increase in the Local Housing Allowance for private renters claiming Housing Benefits
  • if you're claiming council tax support, your council might be able to reduce your bills, and give you hardship support
  • if your child is eligible for free school meals, the school may be able to continue providing meals, or weekly vouchers to use at supermarkets

Find more information on this on the UK government website

Carer's Allowance is the main benefit for carers. And if you look after someone for 35 hours a week or more, you might be eligible.

From 30 March, eligibility for Carer’s Allowance has been relaxed in two ways across the UK:

  • Unpaid carers can continue getting Carer’s Allowance if they take up to 4 weeks off from caring within a 6 month period because they, or the person they care for, gets coronavirus. Or if they have to self-isolate because of it.
  • Giving someone emotional support on the phone or online now counts towards the 35 hours of care needed to qualify for Carer’s Allowance

Find out if you qualify for Carers’ Allowance on the government's website

The government has published advice for anyone providing care, so they can keep doing so safely as far as possible.

17. How will coronavirus affect disability or sickness benefits?

The UK government is automatically extending all awards and reassessments for health and disability benefits. That means

  • there will be no new reviews or reassessments across all benefits for 3 months – this includes Universal Credit (UC), Employment and Support Allowance (ESA), Personal Independence Payment (PIP), Disability Living Allowance, Attendance Allowance and the Industrial Injuries Disablement Benefit.
  • face-to-face assessments for all sickness and disability benefits have been suspended for the next 3 months including for any new claims.
  • if you’ve claimed PIP and an assessment has already taken place this will continue to be processed. If you had an assessment scheduled, the assessment provider will contact you to discuss next steps
  • if your ESA and UC claim has been referred to the provider, they will contact you to take this forward.
  • if your condition's changed and you need more support (and aren't already getting the highest award), you can still contact the Department for Work and Pensions and ask for a review

We expect this measure will last for three months. We will update this page if there are any changes.

Read about benefits and coronavirus on the government website

18. What about the extra pressures on social care and the NHS?

The UK government has pledged to do “whatever it takes” to fund the response. They’ve allocated a £5bn emergency response fund to help:

  • reduce pressures in the NHS
  • support local authorities to manage pressures in social care
  • support vulnerable people who rely on public services.

Links to support and social care information

19. Where can I go for more information and support on coronavirus and MS?

Things you can do now

Take part in the MS Register coronavirus survey

Read our tips on coping with social distancing

Read our information on coronavirus and DMTs

Sign up for our webinar on COVID-19 and MS

UK government

If you live in England and are in the extremely vulnerable group, register for extra support on the UK government website

Find what your local government can do to support you on the UK government website

Go to the UK government coronavirus page

National health services

Go to the NHS 111 coronavirus service

England

Read NHS England guidance

Northern Ireland

Read Public Health Agency guidance

Scotland

Read NHS Inform information

Wales

Read NHS Direct Wales information

ACAS

Read ACAS’ advice for employers and employees

Carers UK

Find support where you live on the Carers UK website

Read about support for carers on the Carers UK website

COVID-19 Mutual Aid

Find local community groups on COVID-19 Mutual Aid

MIND

Read MIND's information about coronavirus and your wellbeing

Remember you're not alone

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.

And if you'd like to talk your worries through online with other people who know MS, visit our Online Community Forum today.

You can join one of our Time to Chat or Virtual Wellbeing sessions and connect online with other people living with MS across the UK. 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 updated this page on Friday 3 April 2020

Help prevent outdated information sharing

We're constantly updating our information on coronavirus. So if you want to share it, please link to the page directly rather than quoting or summarising what we’ve said.

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