Coronavirus

Throughout the coronavirus (COVID-19) pandemic, as at all other times, we remain as committed as ever to supporting everyone in the UK who lives with a muscle-wasting condition, as well as their families.

Last updated: 8 December 2021

We will update this page whenever we have new information. Please also keep an eye on the NHS website which is regularly updated.

If you are looking for information about the coronavirus vaccines, please have a look at our dedicated vaccines page.

On Wednesday 8 December 2021, the government announced that England will move to Plan B to prevent the spread of the new COVID-19 Omicron variant in the UK. You can find out more here:

Coronavirus: how to stay safe and help prevent the spread 

Am I vulnerable to COVID-19?

Only some people living with a muscle-wasting condition will be classed as ‘Clinically Extremely Vulnerable’. 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.

This clinical expert group agrees that people living with a muscle-wasting condition likely to be classed as ‘clinically extremely vulnerable’ 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 percent, 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 oculopharyngeal muscular dystrophy (OPMD)
  • with risk of decompensation (functional deterioration of a bodily system) during infection such as mitochondrial disease.

If you are classed as ‘Clinically Extremely Vulnerable’, you will have received a letter from the NHS or from your GP telling you this earlier in the pandemic.

If you have any questions about your individual condition, you should speak with your neuromuscular team.

You may wish to have one of our alert or symptoms cards to hand, which can help you in times of an emergency.

Guidance to help stop the spread of COVID-19

Guidance relating to coronavirus is different across the four nations of the United Kingdom.

England

  • Get vaccinated against COVID-19 – everyone aged 12 and over can book vaccination appointments
  • Meet people outside if possible.
  • Open doors and windows to let in fresh air, if meeting people inside.
  • Limit the number of people you meet, and avoid crowded places.
  • Wear a face covering in shops, on public transport, and when it's hard to stay away from other people (particularly indoors or in crowded places).
  • Wash your hands with soap and water or use hand sanitiser regularly throughout the day.

We understand that these are difficult times, and you may be experiencing distress and concern. If you’re feeling overwhelmed, stressed, or anxious and you require support with your mental health, please call our helpline on 0800 652 6352, or you can book a GP appointment or contact:

Samaritans - 116 123 (every day: 24 hours)

Give us a shout - text 85258 (24-hour text service)

British Red Cross - 0808 196 3651 (every day: 10am - 6pm)

You can also find further information on the NHS website.

Shielding for the clinically extremely vulnerable has formally ended. This means that people who were previously considered clinically extremely vulnerable (CEV), which included some people with muscle-wasting conditions, will not be advised to shield in the future or to follow specific national guidance.

The government will continue to assess the situation and the risks posed by COVID-19 and, based on clinical advice, will respond accordingly to keep the most vulnerable people safe.

As a minimum, you should continue to follow the same guidance on staying safe and preventing the spread of COVID-19. You should consider advice from your specialist team on whether additional precautions are right for you. However, as someone with a health condition, you may want to consider if additional precautions are right for you. Alongside any advice from your clinician, you may want to think about:

  • considering whether you and those you are meeting have been vaccinated – you might want to wait until 14 days after everyone’s second dose of a COVID-19 vaccine before being in close contact with others
  • continuing to practice social distancing, if that feels right for you and your friends
  • asking friends and family to take a rapid lateral flow antigen test before visiting you
  • asking home visitors to wear face coverings
  • avoiding crowded spaces.

There is different guidance available for people living in Scotland (https://www.gov.scot/publications/covid-highest-risk/), Wales (https://gov.wales/shielding-extremely-vulnerable-people) and Northern Ireland (https://www.nidirect.gov.uk/articles/coronavirus-covid-19-guidance-clinically-extremely-vulnerable-and-vulnerable-people).

Everyone previously on the Shielded Patient List should already have been offered a COVID-19 vaccine. If you have not yet received your two primary doses and a booster dose, please contact your GP or book your vaccination appointment online.

For more information about eligibility, please see our vaccination page.

No vaccine is 100 percent effective, and so even if you have had all doses, there is still no absolute guarantee that you will not become ill from COVID-19. As such, you should continue to take the extra precautions set out in this guidance to help protect yourself. Read more here.

It’s still important for people to follow the national rules and take the additional precautions set out in the guidance to keep themselves as protected as possible. Please see our dedicated vaccination page.

The situation relating to COVID-19 is rapidly evolving in the UK, and there are some regions putting in place new protective measures to limit the spread of coronavirus. To stay up to date with the latest changes and restrictions in your region please follow the relevant links below.

Wales - https://gov.wales/coronavirus

Scotland – https://www.gov.scot/publications/coronavirus-covid-19-staying-safe-and-protecting-others/

Northern Ireland - https://www.nidirect.gov.uk/articles/coronavirus-covid-19-regulations-and-guidance-what-they-mean-you

What should you do?

In addition, 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 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.

 

Employment

The government has announced, as part of Plan B, that from 13 December those who can work from home should do so.

Employers have a legal responsibility to protect their employees and others from risks to their health and safety. Your employer should be able to explain to you the measures they have in place to keep you safe at work. Some employers may request employees to undertake regular testing for COVID-19, to identify people who are asymptomatic.

The Health and Safety Executive (HSE) has published guidance on protecting vulnerable workers, including advice for employers and employees on how to talk about reducing risks in the workplace.

If you need support to work at home or in the workplace you can apply for Access to Work. Access to Work may provide support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide. Access to Work should prioritise applications from disabled people who are in the clinically extremely vulnerable group.

The Coronavirus Job Retention Scheme (furlough) has ended.

You may be eligible for Statutory Sick Pay or Employment and Support Allowance if you are sick or incapable of work, because of coronavirus or other health reasons, subject to meeting the eligibility conditions.

Education

It is important that children attend school for their education, wellbeing, mental health, and long-term development.

Where parents are concerned about their child’s attendance, they should speak to their child’s educational setting about their concerns and discuss the measures that have been put in place to reduce the risk. They should also discuss other measures that can be put in place to ensure their children can regularly attend.

Also rapid lateral flow tests have been made available to schools and colleges. Lateral flow tests can also be accessed directly for households of primary and secondary school pupils and for households of primary and secondary school staff. This testing will also help keep safe those in the community who are clinically extremely vulnerable, as well as their families.

All early years providers, schools and colleges are continuing to put in place measures to help minimise the risk of spreading COVID-19. These include:

  • handwashing
  • use of face coverings in specific situations
  • enhancing cleaning
  • ventilation
  • managing suspected and confirmed cases.

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 muscular dystrophy, who use steroids: