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

Last updated: 05 January 2021 

During the coronavirus (COVID-19) pandemic, we remain 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.

With the first COVID-19 vaccine being rolled out in the UK, our Director of Campaigns, Care and Support explains what that means for people living with muscle-wasting conditions.

Restrictions and guidance

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

England

National lockdown restrictions are now in place across England, with stay at home restrictions issued from 5 January 2021. This means that people must remain at home and should only leave their home where it is necessary.

You should only leave the house for:

  • shopping for basic necessities, such as food and medicine, as infrequently as possible for yourself or a vulnerable person
  • one form of exercise a day, such as a run, walk or cycle – alone, or with members of your household, support bubble or one other person.
  • any medical need, or to provide care or to help a vulnerable person
  • to avoid injury, illness or risk of harm (including domestic abuse)
  • travelling to and from work, but only where this absolutely cannot be done from home.
  • childcare and/or education needs if you are eligible

Education

  • Primary schools, secondary schools and colleges are now closed, with remote learning taking place until the February half term.
  • Schools remain open to children who are vulnerable and/or children of key workers.

Employment

  • You may only leave your home for work if you are unable to reasonably work from home.
  • Employers should support individuals as much as possible to facilitate working from home for employees who can do so.

Exercise and meeting others

  • You should try to minimise how much time is spent outside of your home and should only leave to exercise in a public outdoor place with either your household, support bubble, childcare bubble or by yourself with one other person from another household.
  • You should practice social distancing, staying two metres apart from people who are not in your household or support bubble. If this is not possible, keep a distance of one metre and take extra precautions (e.g. if you are able to, wear a face covering).

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

Scotland, Wales and Northern Ireland

  • Scotland has introduced a national lockdown, with stay at home restrictions in place for all of mainland Scotland from Tuesday 5 January. Please click here for detailed coronavirus information.
  • Wales has been under level 4 restrictions since Sunday 20 December. Please click here for detailed coronavirus information.
  • Northern Ireland has been under stay at home restrictions since Saturday 26 December. Please click here for detailed coronavirus information.

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.

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 has been reintroduced for clinically extremely vulnerable people. Those who are affected by the new shielding rules will be contacted to make them aware of the changes. Clinically extremely vulnerable people are advised to follow the guidance below:

Taking precautions

If you are classed as clinically extremely vulnerable, you should stay at home as much as possible and avoid all non-essential travel. You can go outside for exercise and to attend medical appointments as required. When outside, you should avoid busy areas to minimise the chance of coming into close contact with others who are outside of your household. Within your home, you may want to maintain a social distance of 2 metres from others within your household if practical. You are still permitted to remain in your existing support bubble.

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 alternative adjustments cannot be made, employers may be able to furlough you under the Coronavirus Job Retention Scheme; this has been extended until the end of April 2021. You should have a conversation with your employer about whether this is possible.

You may be eligible for Statutory Sick Pay (SSP) or Employment Support Allowance (ESA) as you have been advised not to attend work. Your shielding letter can be used as evidence to show either your employer or the Department for Work and Pensions that you have been advised to follow shielding guidance and may be eligible for either SSP or ESA.

Members of your household who are not clinically extremely vulnerable and cannot work from home are still able to attend their workplace.

Education

Primary schools, secondary schools, and universities have moved to remote learning for most students. For vulnerable children, educational settings remain open. Clinically extremely vulnerable children and young people should not attend school, college or university.

Accessing food and medicines

If you are classed as clinically extremely vulnerable, you are advised to not go shopping or to a pharmacy. 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. 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.

MDUK does not think this support is sufficient for people who are clinically extremely vulnerable and we are working with a large group of other charities in the Shielding and High Risk Coalition to engage with the Government to seek better support.

Vitamin D

The Government has announced that at risk groups will receive a free winter supply of vitamin D, as these groups and considered to get less exposure to the outdoors. This means that individuals on the clinically extremely vulnerable list will be invited to ‘opt in’ for a supply to be delivered directly to their homes. Deliveries will be free of charge, starting in January, and will provide four months’ worth of supplements to last people through the winter months.  The supplements will support general health, in particular bone and muscle health. This is particularly important this year as these individuals are more likely to have been indoors for extended periods due to measures introduced to stop the spread of COVID-19.

Evidence of the link of Vitamin D to COVID-19 is still being researched with larger scale trials needed. In the meantime, the Secretary of State has asked NICE and PHE to re-review the existing evidence. The government will publish its findings towards the end of the year.

Coronavirus vaccine

A roll-out of the Pfizer/BioNTech and the AstraZeneca coronavirus vaccines have now begun. Unless you are classed as clinically extremely vulnerable, your priority level for receiving the vaccine will be determined by your age.

We have a produced a blog 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.
  • 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

Keep in touch