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

Last updated: 30 March 2021 

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.

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

The government published ‘COVID-19 Response – Spring 2021’, on 22 February setting out the roadmap out of the current lockdown for England. There are four roadmap steps; the first step commenced on 8 March and there have been further easing of restrictions on 29 March. The two main areas of changes so far include the return to face-to-face education for schools and colleges, and an easing of restrictions in outdoor areas, where six people or two households can meet socially.

Shielding for the clinically extremely vulnerable will be 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 can begin to follow the national restrictions alongside the rest of the population, but are still advised to take extra precautions to keep themselves safe from COVID-19.

Letters to patients with updated guidance will be arriving from 18 March and over the following fortnight. These set out practical steps people can follow to reduce their risk of catching the virus, including continuing to maintain strict social distancing and to keep their overall social contacts at low levels, such as working from home where possible. Children and young people who have been shielding should also return to education settings from 1 April.

The move follows the steady decrease in the number of COVID-19 cases and hospitalisations across the country. With the success of the UK’s COVID-19 vaccination programme, more than 9 in 10 clinically extremely vulnerable people are now vaccinated with their first dose, but 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.

The following national lockdown restrictions are still in place across England until 12 April, but the stay at home restrictions have been lifted, and up to six people or two households can meet outside. However, many restrictions still remain in place. You must not socialise indoors with anyone you do not live with or have formed a support bubble with. You should continue to work from home if you can and minimise the number of journeys you make where possible. You should get a test and follow the stay at home guidance if you have COVID-19 symptoms.

From 29 March:

  • you can meet outdoors either in a group of 6 (from any number of households), or in a group of any size from up to 2 households (a household can include an existing support bubble, if eligible)
  • you should stay 2 metres apart from anyone who is not in your household or support bubble where possible, or 1 metre with extra precautions in place (such as wearing face coverings) if you cannot stay 2 metres apart.
  • you must wear a face-covering in many indoor settings, such as shops and places of worship, and on public transport, unless you are exempt. This is the law.
  • you can take part in formally-organised outdoor sports with any number of people (outdoor sports venues and facilities will be able to reopen)
  • childcare and supervised activities are allowed outdoors for all children.

 

Education

  • Primary schools, secondary schools and colleges have been open for attendance since 8 March. Twice weekly testing using rapid lateral flow testing is now available for households and bubbles of school pupils, and staff. These can be requested even if you do not have symptoms of coronavirus. Find more information on lateral flow testing and school bubbles.
  • From 1 April, those shielding should return to their education settings. Where parents are anxious about their child’s attendance, they should speak to their child’s school or college about their concerns and discuss the protective 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 that their children can regularly attend school or college.

Employment

  • When shielding is paused on the 1 April, people are still advised to continue working from home where possible, but if people are unable to do so, employers are required by law to take steps to make workplaces COVID-19 secure and should discuss this with their employees.
  • Employers should support individuals as much as possible to facilitate working from home for employees who can do so.
  • The government have created an employment toolkit, which is useful to refer to if you are a clinically extremely vulnerable individual or employer, which includes a range of topics about general guidance; financial support; workplace safety; employment rights, and household support.

Exercise and meeting others

  • You should aim to add regular exercise as part of your routine to try to minimize the impact of the lockdown measures in the progression of your muscle condition.
  • NHS guidelines about physical activity recommend at least 60 min of moderate physical activity a day for young people and 150 minutes per week in adults. Always work closely with your clinical and therapy teams, to do what feels right for you and your body at the time. There are many options that can help you to achieve a good level of activity indoors and outdoors
  • This should be done with either your household, support bubble, childcare bubble, by yourself or with one other person from another household. See suggestions of how to exercise safely.
  • You should practice social distancing, staying two metres apart from people who are not in your household or support bubble.

At present the next stage of restrictions being eased will be on the 12 April.

You can see find further detailed information on the restrictions. There is additional advice for those who are clinically extremely vulnerable, please see below.

Scotland, Wales and Northern Ireland

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 year. 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.

From 1 April formal shielding will be paused, for those people that are classed as ‘Clinically Extremely Vulnerable’. They should begin to follow the national restrictions alongside the rest of the population, but are still advised to take extra precautions to keep themselves safe from COVID-19.

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

Shielding guidance for clinically extremely vulnerable people

Shielding advice will be paused for clinically extremely vulnerable people. Letters to patients with updated guidance will be arriving from 18 March and over the following fortnight. These set out practical steps people can follow to reduce their risk of catching the virus, including continuing to maintain strict social distancing and to keep their overall social contacts at low levels, such as working from home where possible. Children and young people who have been shielding should return to education settings as of this date.

The move follows the steady decrease in the number of COVID-19 cases and hospitalisations across the country for the last couple of weeks. With the success of the UK’s COVID-19 vaccination programme, more than 9 in 10 clinically extremely vulnerable people are now vaccinated with their first dose, but 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.

Taking precautions

If you are classed as clinically extremely vulnerable, you should still continue to take precautions after the pause of shielding on 1 April. Until the social distancing rules are eased more widely, it is important that you continue to keep the number of social interactions that you have low and try to reduce the amount of time you spend in settings where you are unable to maintain social distancing.

Employment

If you are classed as clinically extremely vulnerable you should not attend work. You might want to speak with your employer about making changes or adjustments to your role which could allow working from home. If you need support to work at home you may be able to apply for Access to Work. Access to Work will provide support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide.

If you cannot work from home,

  • Employers are required to take steps to reduce risk to exposure of COVID-19 in the workplace and should be able to explain these measures they have put in place to keep people safe at work. Guidance can be found here to support a safe work place The Health and Safety Executive have also published guidance.
  • If you are concerned about your safety at work you can raise it with your work place union, the Health and Safety Executive and your local council.

  • employers can furlough staff who are clinically extremely vulnerable under the Coronavirus Job Retention Scheme ; this scheme has been extended until the end of September 2021 and can be used for clinically extremely vulnerable people even after 1 April when you will no longer be shielding. You should have a conversation with your employer about whether this is possible if you feel this is something that you would benefit from.

  • From 1 April you will no longer be eligible for Statutory Sick Pay (SSP) or Employment and Support Allowance (ESA) on the basis of being advised to shield.

  • The government have created an employment toolkit, which is useful to refer to if you are a clinically extremely vulnerable individual or employer, which includes a range of topics about general guidance; financial support; workplace safety; employment rights, and household support.

Education

Primary schools, secondary schools, and colleges returned to education settings on 8 March. Twice weekly testing using rapid lateral flow testing is now available for households and bubbles of school pupils, and staff. These can be requested even if you do not have symptoms of coronavirus. More information can be found here.

From 1 April, clinically extremely vulnerable children and young people who have previously been advised to shield should return to their education settings. Where parents are anxious about their child’s attendance, they should speak to their child’s school or college about their concerns and discuss the protective 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 that their children can regularly attend school or colleges.

Accessing food and medicines

If you are classed as clinically extremely vulnerable, still where possible, use online shopping, or ask others for help with collecting and delivering shopping or medicines to your home. If family, friends or volunteers cannot help with food shopping you can register here for support with accessing online priority supermarket delivery slots. Priority Supermarket delivery slots will continue to be offered after 1 April if you have registered before the 31 March. You can also access support from NHS Volunteer Responders or by calling 0808 196 3646.

If you are unable to get support with collecting your medicines, and your pharmacy is unable to facilitate a volunteer – you will be eligible to have your medicine delivered for free. You should contact your pharmacy to let them know that you are clinically extremely vulnerable and that you need to have your medicines delivered – the pharmacy should arrange this for you.

Further support is also being provided by local councils to those who are clinically extremely vulnerable.

Receiving care

If you are clinically extremely vulnerable you can still receive informal care from those who are in your support bubble. You can also still receive care within your home from social care and medical professionals.

Vitamin D

Vitamin D supplements will support general health, in particular bone and muscle health. This is particularly important this year as people are more likely to have been indoors for extended periods due to measures introduced to stop the spread of COVID-19.

Coronavirus vaccine

A roll-out of the Pfizer/BioNTech and the AstraZeneca coronavirus vaccines have now begun. People living with a muscle-wasting condition who are classed as clinically extremely vulnerable should have already received their first vaccine dose in the roll-out to priority group four, and all other people living with a muscle-wasting condition should be offered a vaccine as part of the roll-out to priority group six.

The vaccination programme is now focusing on priority group five, and six.5 If you are in this group you should be contacted automatically, but you can also book an appointment by visiting the NHS booking website.

We have a page explaining more about access to a vaccine, and the advice from the Joint Committee on Vaccination and Immunisation (JCVI) on priority groups is available 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.
  • Vaccines

Find out more on this page about coronavirus vaccines

  • Schools and education

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

  • Employment

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

  • Carers and PAs

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

  • Mental health advice

Find out more about looking after your mental wellbeing

  • ‘Distance Aware’ badges

Downloadable PDFs to make the public aware to enforce strict social distancing

  • Support available from MDUK

Find out what support MDUK can provide

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