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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.

We last updated this page on Friday 29 May. This week's updates are:

 

Follow these links for information about:

  1. MS and coronavirus (COVID-19) – what are the risks?
  2. MS, social distancing, self-isolation and shielding
  3. I have MS, what should I do if I catch COVID-19 or someone I live with does?
  4. Coronavirus, MS healthcare services and hospital appointments
  5. Getting help with shopping and prescriptions in lockdown
  6. Finances and benefits in lockdown
  7. Working during lockdown
  8. MS, carers and care at home during lockdown

1. MS and coronavirus (COVID-19) – what are the risks?

Having MS in itself doesn’t increase your risk of getting COVID-19.

But some people with MS could be at greater risk of getting the virus, or of complications if they catch it. That could be because of their MS treatment or because of how MS affects them. There are also some other factors our medical advisers have identified.

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.

Research into COVID-19 risk is still in its early stages. Help us understand more about how the pandemic is affecting our community by taking the MS Register survey on coronavirus and MS. And 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

Are people with MS in the "clinically vulnerable" group?

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.

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.

Government advice for everyone in this group is to practice ‘stringent’ social distancing and stay in as much as they can.

Read who’s in the clinically vulnerable group on the UK government website

Are people with MS in the “extremely vulnerable” or “high risk” group?

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.

If you are considered extremely vulnerable, the UK government currently recommends you self-isolate (shield) until at least the end of June.

Read specific treatment advice on our DMTs and coronavirus page

Read who’s in the extremely vulnerable group on the UK government website

What else might put me at higher risk from COVID-19 if I have MS?

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 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 self-isolating (shielding) at home until the end of June. At the least, we’d recommend you do even less outside your home or garden than other people. And go out as little as possible for exercise and essential shopping.

Find out how to get support with getting prescriptions and shopping

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.

2. MS, social distancing, self-isolation and shielding

What do the new social distancing rules mean for people with MS?

Right now everyone 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 at all times
  • wash your hands regularly
  • wash your hands as soon as you get home

Remember you can spread the virus even if you don’t have symptoms.

Everyone should stay at home as much as possible.

In England, the guidance says that you can

  • leave the house as often as you like for socially distanced outdoor activities like exercise, sunbathing or reading in the park
  • from 1 June, meet in groups of up to 6 people, in public spaces and gardens, as long as people from different households stay 2m apart
  • drive to distant destinations (within England) like parks and beaches to enjoy the summer weather
  • play non-contact outdoor sports like tennis, golf and fishing - but only with members of your own household.

And if you can’t work from home (for instance if you work in construction or manufacturing) you should go to work. But avoid public transport if you can and travel by car, bike or walking.

Find out more about working when you or your loved one have MS

In Scotland, the guidance says that from 29 May you can

  • meet one other household outside (up to 8 people in total), keeping 2m apart and following good hygiene guidance
  • spend time in public outdoor spaces, for example to sunbathe, picnic or sit on a bench, as long as you follow social distancing and good hygiene guidance
  • exercise outdoors with certain sports, including golf, tennis and fishing
  • travel for recreation and leisure, although you’re strongly encouraged to stay local (up to 5 miles) and to walk or cycle where possible.

The First Minister has said that most outdoor work, such as construction and garden centres, can start again. Teachers can also return to schools to prepare for planned re-opening on 11 August.

In Northern Ireland, you can

  • meet outdoors in groups of up to 6 people, keeping 2 metres apart and good hygiene - there’s no restriction on the distance you can travel for this, but you’re ‘urged to be sensible’ and to limit the number of journeys
  • travel to take exercise, but not ‘too far’ and avoid places where there are likely to be lots of people and it’ll be hard to keep the 2 metre distance
  • take part in certain outdoor activities, including tennis, golf and angling, keeping 2 metres apart and good hygiene.

In Wales, from Monday 1 June you can

  • meet outdoors with another household, keeping 2 metres apart and good hygiene – this can be in a private garden.
  • travel to meet in this way, generally no more than 5 miles from home (there is some flexibility if you’re in a rural area).

Exercise in Wales should still be done on your own or with your own 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 symptoms. The evidence doesn’t suggest they protect the wearer from catching it from other people.

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. The key thing is that it covers your mouth and nose.

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.

The Scottish, Northern Irish and UK governments all have 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.

What varies is how strongly they recommend you wear one in these circumstances:

  • The Scottish and Northern Irish government websites recommend people consider using face coverings. The Scottish First Minister has recently asked people to “please wear a face covering” in those circumstances.
  • In Wales, the First Minister has said if wearing a face covering gives people confidence, they should wear them.
  • The UK government website says anyone who can wear one, should.

Not everyone can wear a face covering, including people who might have difficulty breathing with a covering on, and children under the age of 2.

If you have coronavirus symptoms, you and your household should self-isolate. Wearing a face covering doesn’t change this.

Do people with MS need to self-isolate or shield?

Self-isolating means you stay at home completely, avoiding going out if at all possible.

Wherever you are in the UK, you should self-isolate if you

Should I have had a letter from the NHS telling me to shield?

Shielding refers specifically to people who are self-isolating at home to avoid the risk of getting coronavirus.

You might have had a letter, text or phone call from the government recommending you ‘shield’. 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

You might also get a letter if your GP or MS team are concerned about your risk for other reasons (for example if you have other health conditions as well as MS). It’s very important you follow their advice.

Read about shielding in England and Northern Ireland on the UK government website

Read about shielding in Scotland on the NHS inform website

Read about shielding in Wales on the Welsh government website

I haven’t had a shielding letter, what should I do?

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

In England, if your GP or hospital doctor tell you you’re ‘extremely vulnerable’ and need to ‘shield’, you can register yourself as high risk on the government website. You can also ask someone to do it for you.

Most people with MS don't need to consider shielding. You can get a general view from our medical advisers on other possible risks here.

Will I need to keep shielding now lockdown is easing?

You’re likely to need to continue to shield for the time being.

The UK government says shielding in England will last at least until the end of June. In Wales, the government says at least 15 June, and in Scotland, at least 18 June.

If you’ve been advised to shield, you will likely get a follow-on text or letter asking you to continue to do so until these dates. This means you have a right to self-isolate until then. At the moment, people in Northern Ireland have been asked to shield for 12 weeks from when they got their letter.

In some cases (for example if you were shielding because of a recent course of alemtuzumab or cladribine), you may be told you no longer need to shield. In this case you should follow the guidance around social distancing. You’ll be told if the length of time you should shield changes.

It’s likely that people will be asked to shield beyond June, but those decisions will be taken by governments closer to the time.

What are my rights at work if I’m shielding?

If the government or your doctor have recommended you shield, you should work from home if at all possible. And your employer should help you to do that.

Find out more about working when you or your loved one have MS

3. What should I do if I have MS and get COVID-19 or someone I live with does?

People with MS who have symptoms of COVID-19

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

Getting tested

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.

In England, Scotland and Northern Ireland, 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.

In Wales, this kind of widespread ‘contact tracing’ is expected to begin from 1 June.

Book a COVID-19 test online in England and Wales or call 119. If you’re in Wales, you can only order home testing kits online at the moment, unless you’re a critical worker. Critical workers in Wales can book with drive-through and mobile testing centres directly.

Book a COVID-19 test online in Scotland or call 0800 028 2816

Book a COVID-19 test online in Northern Ireland or call 0300 303 2713   

Even if you’re booking a test by phone, you’ll need access to an email address to get the results, except in Scotland where you can leave a mobile number instead. If you haven’t got an email address, you could ask a friend or relative to use theirs.

People with MS who live with someone who has symptoms of COVID-19

If anyone else in your home has symptoms, 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.

If it’s not possible for you to move to another location, you should follow advice around household isolation. That means 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.

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

4. Coronavirus, MS health services and hospital appointments

Will my MS health care team still be available?

We know some MS specialist staff have been asked to help with the increasing cases of COVID-19.

Because of this, some MS teams have moved 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 might be offered an appointment by phone or video call.

Read our information about DMTs and coronavirus, including revised recommendations on DMT monitoring

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.

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.

Speak to your MS team before making any changes to the way you take your treatments.

Read our information about DMTs and coronavirus, including details of attending infusion appointments

Social care services and the Coronavirus Act

The Coronavirus Act and Coronavirus (Scotland) Act could also affect your social care services if you live in England, Wales or Scotland.

Read our Coronavirus Act news story to find out how it applies across the UK

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.

Visit the National Clinical Homecare Association for information about homecare and coronavirus

The NHS has contacted me about signing a Do Not Attempt Resuscitation (DNAR) document. What does it mean?

Some people with long term health conditions have had letters or calls from their doctors about the care they might get if they were critically ill with coronavirus. This can obviously be a distressing topic. And it's important to remember having MS in itself does not mean you’ll be denied critical care.

Read about critical care and your rights

5. Getting help with shopping and prescriptions in lockdown

If you’re worried you can't get the help you need with shopping and collecting prescriptions, you’re not alone.

Read about ways to get help with shopping and prescriptions

6. Finances and benefits in lockdown

Some benefits and other financial help have changed to help you manage the effects of coronavirus. This includes Carer's Allowance, statutory sick pay and some assessments for PIP.

Find out about changes to benefits and extra financial help

7. Working and MS during lockdown

As part of lockdown easing, government guidance in England around who should go to work has changed. We look at what that means for people with MS and the people who care for them, wherever you live in the UK.

Read our information about working when you or your loved one have MS

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.

Read our information for carers and people with MS who get direct care from care workers

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.

You can also sign up to our new Keep in Touch service, for a weekly catch up with one of our friendly volunteers.

Chat online

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 updated this page on Friday 29 May 2020

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