Coronavirus

During the coronavirus (COVID-19) pandemic, 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: 5 August 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, we have a dedicated vaccines page.

Restrictions and guidance

Guidance and restrictions relating to coronavirus are different across the four nations of the United Kingdom.

England

In February 2021 the UK Government published ‘COVID-19 Response – Spring 2021’, setting a roadmap out of the current lockdown for England.

On 19 July England moved to step 4 of the road map, with many of the legal restrictions that the Government had introduced through the pandemic  lifted. Cautious guidance still remains. The Government also laid out five principles for managing COVID-19;

  • Reinforce the country’s vaccine wall of defence through booster jabs and driving take up.
  • Enable the public to make informed decisions through guidance, rather than laws.
  • Retain proportionate test, trace and isolate plans in line with international comparators.
  • Manage risks at the border and support a global response to reduce the risk of variants emerging globally and entering the UK.
  • Retain contingency measures to respond to unexpected events, as we learn to live with the virus.

Lifting restrictions

England

From Monday 16 August, people in England who are double-vaccinated (with at least two weeks since their second dose) or aged under 18 will no longer be legally required to self-isolate if they are identified as a close contact of a positive COVID-19 case. More information can be found at the link below: https://www.gov.uk/government/news/self-isolation-removed-for-double-jabbed-close-contacts-from-16-august

Most legal restrictions to control COVID-19 have been lifted at step 4. This means that:

  • You do not need to stay 2 metres apart from people you do not live with. There are also no limits on the number of people you can meet.
  • However, in order to minimise risk at a time of high prevalence, you should limit the close contact you have with those you do not usually live with, and increase close contact gradually. This includes minimising the number, proximity and duration of social contacts.
  • You should meet outdoors where possible and let fresh air into homes or other enclosed spaces.
  • The Government is no longer instructing people to work from home if they can. However, the Government expects and recommends a gradual return over the summer.
  • The requirement to wear face coverings in law has been lifted. However, the Government expects and recommends that people wear face coverings in crowded areas such as public
  • There will no longer be limits on the number of people who can attend life events or on group sizes for attending communal worship.
  • We need to learn to live with COVID-19 and manage the risk to ourselves and others.

Find more information about what you can and can’t do here.

We understand that these changes may be causing you some distress and concern. If you’re feeling overwhelmed, stressed or anxious about restrictions easing 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:

Further information can also be found via the NHS website.

Shielding for the clinically extremely vulnerable was paused on 1 April. This means that people who are classed as clinically extremely vulnerable and who have previously been advised to shield will no longer be so, and should follow the national guidance alongside the rest of the population.

There is different guidance for clinically extremely vulnerable people living in living in Wales and living in Northern Ireland.

As restrictions have been eased following the move to Step 4 of the roadmap, the government are advising clinically extremely vulnerable people, as a minimum, to follow the same guidance as everyone else.

However, as someone who is at a higher risk of becoming seriously ill if you were to catch COVID-19, you may wish to think particularly carefully about additional precautions you might wish to continue to take.

Individuals may choose to limit the close contact they have with those they do not usually meet with in order to reduce the risk of catching or spreading COVID-19, particularly if they are clinically extremely vulnerable and if COVID-19 disease levels in the general community are high. It is important to respect and be considerate of those who may wish to take a more cautious approach as restrictions are lifted.

Everyone on the Shielded Patient List should already have been offered a COVID-19 vaccine.  If you have not yet received your first dose, please contact your GP or book your vaccination appointment online. If you have received your first dose, you should still ensure you take up your second dose of the vaccine when it is offered to you. Having two doses should further increase your level of protection.

All 16 and 17-year-olds in the UK will start being offered a first dose of the COVID-19 jab within the next few weeks. We recommend keeping an eye out for when appointments starting becoming available. As part of the wider roll out of the vaccination, some 12-15-year-olds with underlying conditions will also be able to receive the vaccine. For more information about eligibility, please see our vaccination page.  

No vaccine is 100% effective and therefore even if you have had both 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 people continue 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.

Scotland

Scotland moved to level 0 from Monday 19 July 2021. The legal requirement for physical distancing and limits on gatherings was removed on 9 August when all venues across Scotland re-opened. Some protective measures remain in place such as the use of face coverings indoors and contact details being collected as part of Test and Protect. Adults identified as close contacts of someone who has tested positive for Covid-19 will also no longer be automatically required to self-isolate for 10 days if they are double-vaccinated (with at least two weeks since their second dose), have no symptoms and have a negative PCR test. The same conditions will also apply to anyone aged between five and 17 years old.

Read more: https://www.gov.scot/news/scotland-to-move-beyond-level-0/

Wales

From Saturday 7 August, Wales completed the move to alert level 0. Face coverings remain a legal requirement indoors, with the exception of hospitality premises. Fully vaccinated adults, people under 18 and vaccine trial participants will not need to self-isolate if they are a close contact of someone with coronavirus.

Read more: https://gov.wales/alert-level-0

Northern Ireland

Restrictions in Northern Ireland were eased further on 26 July. It is mandatory to wear face coverings in particular circumstances and on public transport. From Monday 16 August, if you are fully vaccinated (more than 14 days since the second dose) you no longer need to self-isolate for 10 days if you have been in close contact with someone who tests positive for COVID-19. The current regulations are available on the Department of Health website.

Am I Clinically Extremely Vulnerable?

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%, 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.

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. People in this group would have received a further letter following the new national restrictions which were introduced from 2 December, to confirm that they are still identified as clinically extremely vulnerable, and outlining the support that may be available to them.

Since 1 April formal shielding has been paused, for those people that are classed as ‘Clinically Extremely Vulnerable’.

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

Also further guidance can be found here.

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:

What should you 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.

Employment

From 19 July, social distancing measures have ended in the workplace and it is no longer necessary for the government to instruct people to work from home.

However, employers still 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) is available until 30 September. You may be eligible throughout this period, even when shielding is paused, providing your employer agrees. You should have a conversation with your employer about whether this is possible if you feel this is something that you would benefit from.

You may be eligible for Statutory Sick Pay or Employment and Support Allowance if you are sick or incapable of work, either due to 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. Clinically extremely vulnerable pupils and students should have returned to their school or other educational setting. This includes early year’s provision, wraparound childcare and applicable out-of-school settings.

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 available 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 and 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