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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 27 March.

We'll be regularly reviewing and updating this page, so keep checking back for the latest information.

Important phrases we use on this page

As of 24 March, there are two sets of measures and everyone has to follow one or the other:

  • Staying 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-isolation. Self-isolation 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, 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, due to the progression of their MS, or the effects of their DMT.

The Association of British Neurologists (ABN) published guidance on additional risks of COIVD-19 on 23 March.

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.

In England you can self-register for extra help. And everywhere in the UK you can find out what your local government can do to support you.

If you meet 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 by Sunday 29 March 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. I have MS, should I self-isolate?

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

4. 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

5. 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

6. Will my MS team still be available?

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.

7. 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.

8. 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

9. 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

10. 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 alert 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.

11. 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.

12. 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

13. 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 get 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.

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

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

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’re working with UK government and supermarkets to make sure everyone with MS has priority access to services and can get the food they need.

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

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.

14. 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

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.

Find the latest on the government COVID-19 page

15. 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

Find more information on this on the UK government website

16. 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

17. 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.

Read the UK government's information on support for people affected by COVID-19

18. 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

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.

We updated this page on Friday 27 March 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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