Detailed guidance on risks from coronavirus for people with muscle-wasting conditions

Update 24 March 2020

You will have heard about the current spread of the coronavirus COVID-19. The situation with regard to the coronavirus in the UK is evolving and the advice on the NHS website is being updated daily. We strongly recommend that you refer to this website for the most up-to-date, evidence-based information available.

Clinical guidance for people with muscle-wasting conditions and their families

The following guidance is based on advice from a group of neuromuscular clinical experts, working across a wide range of neuromuscular conditions, who lead the adult and children’s NorthStar and SMA REACH clinical networks.

Currently there is no specific information on whether people living with a muscle-wasting condition are at increased risk of infection with COVID-19. However, the clinical expert group agree that people with any diagnosed or undiagnosed neuromuscular condition should consider themselves as being at high risk of getting seriously ill from coronavirus and they should practice shielding.

All household members are not required to adopt these protective shielding measures for themselves, but they should do what they can to support a person with a neuromuscular condition in shielding and they should stringently follow guidance on social distancing, reducing their contact outside the home to essential shopping.

You can also register for support, such as help with deliveries or getting essential supplies, via the Government website.

We can also share this advice from the Association of British Neurologists which makes clear that people with a ‘muscle disease’ may be significantly at risk of being severely ill from COVID-19.

Shielding is particularly important for people:

• on oral steroids or other immunosuppressants (such as methotrexate). You should not stop treatment, and if possible ensure that you have a supply at home. If you become unwell, you may need to increase the dose as advised by your specialist service
• at respiratory risk (ventilated (tracheostomy, BiPAP, CPAP), Forced Vital Capacity less than 60%, weak cough, congenital myasthenic syndrome or myasthenia gravis
• usually advised to receive the annual influenza vaccine
• with cardiac complications in their condition
• who have difficulty swallowing, such as those with myotonic dystrophy and OPMD
• with risk of decompensation (functional deterioration of a bodily system) during infection such as mitochondrial disease.

Shielding

There is some updated guidance for those who are at high risk of severe illness from COVID-19, including children, because of their underlying health conditions, and for their family, friends, and carers. It is for those that fall into the category of being extremely vulnerable, which includes for example those people on immunosuppression therapy, and people with severe respiratory conditions.

Public Health England has more information about who fits into the category of "extremely vulnerable".

What is shielding?

Shielding is a practice used to protect the "extremely vulnerable" from coming into contact with COVID-19 by minimising all interaction with other people, in case they are carrying COVID-19. This means that those who are extremely vulnerable should not leave their homes. Within their homes they should minimise all non-essential contact with other members of their household.

If you have a condition that makes you "extremely vulnerable" then you can register for support, such as help with deliveries or getting essential supplies, via the Government website.

You are strongly advised to stay at home at all times, and to avoid any face to face contact for a period of at least 12 weeks – this period of time could change.

Letters are being sent out to those who are classed as "extremely vulnerable" – if you do not receive a letter by 29 March and feel you fit into this category please contact your GP or health professional.

Please refer to the Public Health England website if you are visited by people who provide essential support, such as healthcare, personal support with your daily needs or social care. These visits should continue, but carer and care workers must stay away if they are showing symptoms of COVID-19. We are in the process of providing further guidance on this with the support of clinical specialists.

Schools and nursery

All people in the household of someone with a neuromuscular condition should avoid nursery, school and college, even in cases where they have an Education Health Care Plan (EHCP) in place.

Specific information for families of people with Duchenne muscular dystrophy

There are no published recommendations, although leading neuromuscular expert clinicians have developed this guidance for people with Duchenne who use steroids:

• be sure to have a dose of steroids available at home.
• ensure you have a strategy or at least knowledge of how to deal with the adrenal suppression in case of a severe superimposed infection.
• The World Duchenne Organisation has regularly updated information about COVID-19 and Duchenne muscular dystrophy (people living with Becker muscular dystrophy may also find this a useful resource).
• where possible, make sure you have an alert or symptoms card to hand which can help in times of an emergency.  

Families, friends, care teams and personal assistants

• In addition to making sure you have an alert or symptoms card to hand, which can help in times of an emergency, we recommend that you, and any personal assistants or carers who support you, follow the NHS guidelines. We also think this information may  help you if you are managing personal assistants.
• Always carry tissues with you and use them to catch your cough or sneeze. Then bin the tissue, and wash your hands, or use a sanitiser gel.
• Wash your hands for at least 20 seconds with soap and water, especially before leaving home, after using public transport (although we recommend that you avoid public transport if at all possible), upon arriving somewhere, before and after eating, and after using the bathroom. Use a sanitiser gel if soap and water are not available.

• Avoid touching your eyes, nose and mouth with unwashed hands
• Avoid close contact with people who are unwell.

Further information for carers is available on the Carers Trust and Carers UK websites.

United Kingdom National Government Guidance

COVID-19 is a new illness that can affect your lungs and airways. It's caused by a virus called coronavirus.

Advice for people at high risk

The NHS in England is directly contacting people with conditions the NHS considers as high risk to provide further advice. You can see the list of who is deemed “extremely vulnerable” here.

If you think you fall into one of the categories of “extremely vulnerable” people listed above and you have not received a letter by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician.We also know that some people with a neuromuscular condition are also being contacted by NHS England via text message.

If you're at high risk of getting seriously ill from coronavirus, there are extra things you should do to avoid catching it. These include:

• not leaving your home – you should not go out to do shopping, visit friends or family, or attend any gatherings.
• avoiding close contact with other people in your home as much as possible

Read the full advice on protecting yourself if you're at high risk from coronavirus on GOV.UK.

Stay at home to stop coronavirus spreading

Everyone must stay at home to help stop the spread of coronavirus. This includes people of all ages – even if you do not have any symptoms or other health conditions.

You can only leave your home:

• to shop for basic essentials – only when you really need to
• to do one form of exercise a day – such as a run, walk or cycle, alone or with other people you live with
• for any medical need – for example, to visit a pharmacy or deliver essential supplies to a vulnerable person
• to travel to and from work – but only where this is absolutely necessary

What to do if you have coronavirus symptoms

Continue to stay at home if you have either:

• a high temperature – this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
• a new, continuous cough – this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)

To protect others, do not go to places like a GP surgery, pharmacy or hospital. Stay at home.

Use the 111 online coronavirus service to find out what to do.

How long to stay at home

• If you have symptoms, stay at home for 7 days.
• If you live with other people, they should stay at home for 14 days from the day the first person got symptoms.

Advice on Statutory Sick Pay

Our helpline can provide advice about Statutory Sick Pay and obtaining a sick note if you are unable to work from home. It is advisable to speak to your employer first, in light of Government advice that people should work from home where possible and many employers will be making their own arrangements to support their workforce to do this.

Further detailed guidance on risks from coronavirus and the recommended actions are available from the NHS website which is updated regularly.

If you have specific queries relating to your personal healthcare or treatment that is not covered here, contact your own specialist neuromuscular service.

We are regularly updating this guidance as advice is clarified, and as the clinicians we are liaising with share additional information specifically about neuromuscular conditions as it becomes available.