Social care staff including volunteers and unpaid carers are now included in the list of essential workers prioritised for Covid-19 testing in England. Read the guidance here: Coronavirus (COVID-19): getting tested.

This is up to date advice specifically from clinicians. We will continue to update the advice with any further clinical guidance we receive.

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

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 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 COVID-19 and should be practising 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 have not received a letter, you can also register here: https://www.gov.uk/coronavirus-extremely-vulnerable

If you fall into the category of “clinically extremely vulnerable”, it’s advisable that your whole family or household practices shielding.

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 “extremely vulnerable”.

Shielding 

Update on 23rd June 2020: The Royal College of Paediatrics and Child Health have shared a useful resource :COVID-19 - 'shielding' guidance for children and young people.

The government has updated its guidance for people who are shielding taking into account that coronavirus COVID-19 infection rates have decreased significantly over the last few weeks. This guidance remains advisory.

People who are shielding remain vulnerable and should continue to take precautions but may now choose to leave their home, as long as they are able to maintain strict social distancing. If you choose to spend time outdoors, you may do so with members of your own household. If you live alone, you can spend time outdoors with one person from another household or you may choose to spend time outdoors with one person from another household. Ideally, this should be the same person each time.

If you do go out, you should take extra care to minimise contact with others by keeping 2 metres apart. This guidance will be kept under regular review.

On 22 June the government set out a series of steps for further relaxing shielding guidance which will come into effect on 6 July and 1 August.

From 6 July, the government will be advising:

  • you may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing
  • you no longer need to observe social distancing with other members of your household
  • in line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also 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 socially distance

From 1 August the government will be advising that shielding 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. In practice this means that from 1 August:

  • 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 their education settings 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
  • 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 guidance for the clinically extremely vulnerable group remains advisory. More detailed advice will be updated in this guidance as the changes in advice come into effect on 6 July and 1 August.

Read the guidance here.

What is shielding?

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

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.  We know that there are issues around this which we are highlighting and seeking to have addressed.

 

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

On 24th 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:

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.