Last updated: 8 June 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.
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 were further easing of restrictions on 17 May. The main areas of changes so far include the return to face-to-face education for schools and colleges, hospitality venues allowed to reopen for outside and indoor dining, non-essential retail, indoor leisure and outdoor attractions opening, and an easing of restrictions on social contact.
Key changes from 17 May
- Legal restrictions on meeting others outdoors have been lifted – although gatherings of over 30 people will remain illegal.
- Indoors, the Rule of six or two households will apply. This means up to six people from any number of households or more than six from two households only. This will be kept under review whether it is safe to increase this.
- Support groups and parent and child group gathering limits have been increased to 30 people (not including under 5s).
Find more information about what you can and can’t do.
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 restrictions alongside the rest of the population. They are though still advised to take extra precautions to keep themselves safe from COVID-19, following the practical steps described below to minimise risk of exposure to the virus.
If you have been identified as being clinically extremely vulnerable, you will previously have received a letter from the NHS or from your GP telling you this.
Guidance on meeting family and friends has been updated, with a greater emphasis on personal responsibility. Since 17 May, close contact with friends and family is personal choice, but you are encouraged to exercise caution. You should consider the guidance on risks associated with COVID-19 and actions you can take to help keep you and your loved ones safe.
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.
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.
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.
A new COVID-19 variant is spreading in some parts of England
You should take particular caution when meeting anyone outside your household or support bubble. This will keep yourself and others safe.
If you are clinically extremely vulnerable, you are no longer advised to shield. However, you should continue to follow the guidance for people who are clinically extremely vulnerable and are advised to continue taking extra precautions to protect yourself, such as limiting close contacts, shopping or travelling at quieter times of the day, keeping rooms ventilated and washing your hands regularly. Your employer is required to take steps to reduce the risk of exposure to COVID-19 in the workplace.
- 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.
- With shielding paused since 1 April, people are still advised to continue working from home where possible. 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 21 June.
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
- Scotland From 1 June most of mainland Scotland (and islands not at Level 0) is at Level 1. A number of areas will remain at Level 2 due to the number of COVID-19 cases. In Level 2 you can meet socially in groups indoors and outdoors (restrictions apply). The guidance on informal childcare, events and travel has also changed. You can find more detailed coronavirus information for Scotland online.
- Wales is at alert level 2. From 7 June, further restrictions have been eased, and guidance relating indoor hospitality, travel, entertainment venues, holiday accommodation, organised indoor and outdoor activities and indoor visitor attractions have now changed. You can find more detailed coronavirus information from the Welsh government and NHS Wales.
- Northern Ireland From 30 April, non-essential shops, hairdressers, and outdoor areas at pubs and restaurants can reopen. You can stay overnight in self-contained accommodation but only with your household or bubble. The current regulations will be reviewed on 10 June 2021. Read the guidance on current restrictions on nidirect.
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.
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.
If you are classed as clinically extremely vulnerable you should work from home if possible. 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.
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.
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 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.
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 now have received their second 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 the under 30s. If you are in this group you should be contacted automatically, but you can also book an appointment by visiting the NHS booking website.
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:
- be sure to have a sufficient dose of steroids available at home
- ensure you have a strategy or at least knowledge of how to deal with the adrenal suppression in case of a severe superimposed infection
- The World Duchenne Organisation has regularly updated information about COVID-19 and Duchenne muscular dystrophy (people living with Becker muscular dystrophy may also find this a useful resource)
- where possible, make sure you have an alert or symptoms card to hand, which can help in an emergency.
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.
Schools and education
Carers and PAs
Mental health advice
‘Distance Aware’ badges
Support available from MDUK