Coronavirus: information and advice for people with muscle-wasting conditions

Last updated: 25 June 2020 

In the midst of the coronavirus (COVID-19) pandemic, we remain committed as ever to supporting everyone in the UK who lives with a muscle-wasting condition, as well as their families. We’re working with clinicians and other charities to gather the facts and latest guidance to help answer the most common questions you’ve been asking about COVID-19 and neuromuscular conditions.

We will update this page whenever we have new information from the clinicians, and we’ll let you know of any urgent updates. Please keep an eye on the NHS website where they’re constantly updating their information too.

For further reading:

 

What is coronavirus (COVID-19)?

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

What are the symptoms of coronavirus?

The main symptoms of coronavirus are:

  • 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)
  • Loss or change to your sense of smell or taste – this means you’ve noticed you cannot smell or taste anything, or things smell or taste different to normal.

Most people with coronavirus have at least one of these symptoms.

If you have symptoms of coronavirus, you can ask for a test to check if you have the virus. This is called an antigen test. More information can be found on the NHS website.

To protect others, do not go to places like a GP surgery, pharmacy or hospital. Use the 111 online coronavirus service to find out what to do.

What does coronavirus mean for people with muscle-wasting conditions?

We have gathered guidance and advice from a group of neuromuscular clinical experts, who are leaders in their field. They have worked with people with a range of neuromuscular conditions, and they lead the adult and children’s NorthStar and SMA REACH clinical networks.

What should we do?

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.

  • 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. If you are not shielding, this is particularly important 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.

 

Am I at increased risk of getting COVID-19?

There is currently no specific information on whether people living with a muscle-wasting condition are at increased risk of infection with COVID-19.

Will I be impacted more severely if I get COVID-19?

The clinical expert group agrees that many (although not all) people with a diagnosed or undiagnosed neuromuscular condition (in other words non-specified conditions) fall into the official category of being “clinically extremely vulnerable” to COIVD-19 and should be practice shielding (staying at home at all times). People with a neuromuscular condition likely to fall into this group are those:

  • 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 abnormal cardiac function as part of 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.

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.

If your condition means that you fall into the “clinically extremely vulnerable” group you should have received a letter or other communication from the NHS confirming this. If you think you fall into this category but have not heard anything, you are advised to contact your neuromuscular specialist team or your GP. If you need contact details for your specialist neuromuscular team, we can help with this.

If you fall into the category of “clinically extremely vulnerable”, it’s advisable that your whole family or household practices shielding. If it is not possible for your whole household to shield, you may want to identify one member of the household who is responsible for making essential trips. It’s vital they practise stringent social distancing measures and take all the precautions listed below whenever they return to your home.

You may of course require visits from care providers, and these should continue. Your care providers will need to take full precautions to shield you as mentioned above.

See below for more information regarding carers, including things you may need to consider if you employ your own carers.

Public Health England has more information below about who fits into the category of “clinically extremely vulnerable”.

 

What is shielding?

Shielding is a practice used to protect the “clinically extremely vulnerable” from coming into contact with COVID-19. It means minimising all interaction with other people, in case they are carrying COVID-19.

Government guidance on shielding is advisory only. In general, children and adults who are clinically extremely vulnerable are strongly advised to stay at home as much as possible and keep visits outside to a minimum (for instance once per day). If this applies to you, you should also minimise all non-essential contact with other members of your household. If you do choose to leave your home, the Government in England advises that until 6 July 2020 you should observe the following precautions;

  • If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping two metres apart.
  • If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household (ideally the same person each time).
  • You should stay alert when leaving home: washing your hands regularly, maintaining social distancing and avoiding gatherings of any size.
  • You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
  • You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).

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

Changes to shielding guidance

On 22 June 2020 the Government in England set out its plans for the future of shielding, stating it intends to relax shielding guidance in stages, subject to clinical evidence. In announcing the future approach to shielding, the Government stated that decisions on shielding advice are led by the latest scientific evidence, which shows the chance of encountering coronavirus in the community has continued to decline.

From 6 July 2020 if you are shielding, you may, if you wish;

  • Meet in a group of up to six people outdoors, including people from different households, while maintaining strict social distancing;
  • No longer need to observe social distancing with other members of your household;
  • Form a support bubble with one other household if you are an adult living alone or alone with dependent children under 18). All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to socially distance.

All the other current shielding advice will remain unchanged at this time.

From 1 August 2020, although the advice will remain to stay at home where possible if you are shielding;

  • The advice to ‘shield’ will be paused. From this date, the Government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble.
  • You can go to work, if you cannot work from home, as long as the business is COVID-safe;
  • Children who are “clinically extremely vulnerable” can return to school if they are eligible and in line with their peers. Where possible children should practise frequent hand washing and social distancing;
  • You can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing; and
  • You should remain cautious as you are still at risk of severe illness if you catch coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing.

The food and medicine boxes facilitated by the National Shielding Service will stop on 1 August as individuals are advised they can visit shops and pharmacies. However, other forms of support – such as priority supermarket delivery slots and the NHS Volunteers Scheme, among a range of local volunteer schemes – will continue. If you are concerned about support after 1 August, you should contact your local authority.

The categorisation of ‘clinically extremely vulnerable’ will remain in place. After 1 August the Government will continue to maintain the Shielded Patient List and has stated it will monitor the virus continuously over coming months and if it spreads too much, may need to advise this group to shield again.

We know that some people living with muscle-wasting conditions will welcome the prospect of ending shielding, while others will be concerned about what this could mean for them and their families and may wish to continue taking extra precautions to avoid exposure to COVID-19. This is particularly true as people contemplate returning to work or making decisions about sending children back to school.

It is advisable you contact your neuromuscular specialist to discuss your approach to shielding, as there are many factors that contribute to the level of risk you face. These include your neuromuscular condition as well as factors such as other health conditions you may have and your age.

Your neuromuscular specialist will have knowledge of your individual health and circumstances and is best placed to provide specific advice. Please note that services will be receiving a high volume of enquiries following the announcement of changes to the guidance on shielding and are also adapting to a new way of working with some staff seconded to other roles.

Is there specific information for families of people with Duchenne muscular dystrophy?

On 24 April 2020, the journal Muscle Nerve published an article entitled ‘The care of patients with Duchenne, Becker and other muscular dystrophies in the COVID-19 pandemic’.

Leading neuromuscular expert clinicians have also developed this guidance for people with Duchenne, who use steroids:

 

General guidance on coronavirus

It is important to stay at home as much as possible to help stop the spread of coronavirus. Some people living with a muscle-wasting condition will need to stay at home to shield – see below for more information on this.

The government has recognised how difficult it has been for people to be cut-off from their friends and families, so they have moved to a “stay alert” phase, where some rules have changed. There are three main areas of change in England –

Staying alert when meeting people you do not live with

You should continue to stay alert and limit your contact with others. Staying at home is the easiest way to do this, but you are permitted to meet family and friends subject to strict rules – on which there is more detail below. At all times, it’s important to maintain social distancing guidelines to reduce the risk of spreading the virus.

In order to keep you and your family and friends safe, it remains very important that you stay alert outside your home and follow some key principles:

  • you should limit your interactions with people outside of your household or your support bubble (if applicable) as much as possible
  • you should continue to follow strict social distancing guidelines, particularly ensuring you are two metres away from anyone not in your household or your support bubble
  • you should take hygiene precautions by washing your hands as soon as you are home for at least 20 seconds , use hand sanitiser when you are out, use a tissue when sneezing and dispose of it safely and cough into the crook of your elbow
  • you should only form a support bubble with one other household, should not change or add to your support bubble once formed, and must only form a support bubble with another household if you or they are in a single adult household
  • you should access private gardens externally wherever possible – if you need to go through someone else’s home to do so, avoid touching surfaces and loitering
  • you should avoid using toilets in other people’s home (outside of your support bubble) wherever possible and wipe down surfaces after every use
  • you should wipe down any surfaces or door handles people from outside of your household or support bubble come into contact with if walking through your home
  • you should avoid sharing plates and utensils with people outside of your household or your support bubble
  • you should avoid using paddling pools or other garden equipment with people outside of your household or bubble

If you or someone in your household or your support bubble (if applicable) are showing coronavirus symptoms, everyone in your support bubble should stay home. If you or a member of your support bubble is contacted as part of the test and trace programme, the individual contacted should stay at home. If the individual becomes symptomatic, everyone in the support bubble should then isolate.

How you can now see people you do not live with, while protecting yourself and others from coronavirus

In England, there are two ways that you can do this:

  • meeting outdoors in a group of up to six people with those you do not live with, but you should do this while observing social distancing guidelines and keeping at least two metres apart
  • single adult households – in other words adults who live alone or with dependent children only – can form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s’ homes, including overnight, without needing to stay 2 metres apart.

Making a support bubble with another household

In England, if you live by yourself or are a single parent with dependent children – in other words, if there is only one adult in your home – you can expand your support network so that it includes one other household of any size. This is called making a ‘support bubble’ and means you are able to meet indoors or out, be less than two metres apart and stay overnight as you could if they were members of your own household.

There are key principles for how you can form a support bubble safely. These are critical to keeping you – and your friends and family – safe and saving lives:

  • support bubbles must be exclusive – you should not change who is in your bubble or have close contact with anyone else you do not live with. This is critical to keeping you, and your family and friends, safe
  • if you or someone in your support bubble is showing coronavirus symptoms, or otherwise self-isolating, everyone in your support bubble should stay home. If you or a member of your support bubble is contacted as part of the test and trace programme, the individual contacted should stay at home. If the individual becomes symptomatic, everyone in the support bubble should then isolate.

Also bear in mind it is compulsory wear a face covering/mask  if you are on public transport, and as hospital staff or an outpatient, or visiting someone at hospital. However, there are some exceptions to this rule –

  • Children under 11
  • People unable to put a mask on or take off due to a disability
  • Those who have breathing difficulties

When outside your home it is important to “Stay alert” by staying 2 metres away from anyone you do not live with, or is not in your support bubble.

Visit the NHS website and gov.uk website for more information on symptoms, what you can do to stop the infection spreading, how to look after your health and wellbeing and other useful guidance.

 

What should I do if I have symptoms of COVID-19?

If you develop symptoms of COVID-19 (high temperature above 37.8°C and/or a new and continuous cough, and/or loss of smell and taste), contact the NHS 111 online coronavirus service, or call NHS 111 if you don’t have internet access. If you’re seriously ill, call 999. Do this as soon as you get symptoms. Do not visit the GP, pharmacy, urgent care centre or a hospital.

To help the NHS give you the best care if you need to go to hospital as a result of becoming seriously ill with symptoms of coronavirus, the NHS asks that you prepare a single hospital bag. You can read more about hospital admissions during coronavirus.

Scotland, Wales and Northern Ireland information

If you live in one of the devolved nations, please click below for specific coronavirus information.

 

  • Carers and PAs

Find out more about what you should do if you have healthcare assistants, carers or care workers 

  • Schools and nurseries

Find out more on this page our advice on schools and nurseries

  • Employment

Find out more about employment rights for people living with muscle-wasting conditions during coronavirus

  • Mental health and wellbeing coaching

Find out more about looking after your mental wellbeing

  • Support available from MDUK

Find out what support MDUK can provide

Keep in touch