Last updated: 4 November 2020
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.
Restrictions and national guidance in England
New restrictions are in place for everyone in England from 5 November. The full guidance from the Government is available here.
The guidance states that until 2 December, everyone should stay at home and only leave in certain circumstances. Schools and education facilities will, however, remain open.
Some people living with muscle-wasting conditions are classed as ‘clinically extremely vulnerable’ (see below). Earlier in the year, people in this group were advised to shield.
The Government has published updated guidance for people classed as clinically extremely vulnerable, which advises taking additional precautions while the new restrictions are in place. More information is provided below and you can read the full guidance on the government 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 year. People in this group will receive a further letter shortly regarding the new national restrictions introduced from 5 November, which will provide further detail on the updated guidance and on how to access the support available.
Key areas of the guidance, which is advisory only, are;
- Stay at home apart from to exercise or to attend a medical appointment – the Government urges people to keep their appointments and to continue receiving the care they need.
- If you cannot work from home, you should not attend work. You may be eligible for Statutory Sick Pay, Employment and Support Allowance, Universal Credit, or the Coronavirus Job Retention Scheme. 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.
- The Government states that more evidence has emerged that shows there is a very low risk of children becoming very unwell from COVID-19, even for children with existing health conditions. Most children originally identified as clinically extremely vulnerable are no longer in this category. You should speak to your GP or specialist clinician, if you have not already done so, to understand whether your child should still be classed as clinically extremely vulnerable.
- Those children whose doctors have confirmed they are still clinically extremely vulnerable are advised not to attend school while the restrictions introduced from 5 November are in place. Your school will make appropriate arrangements for you to be able to continue your education at home.
- Children who live with someone who is clinically extremely vulnerable, but who are not clinically extremely vulnerable themselves, should still attend school.
- You are advised not to go to the shops. Continue to use your supermarket priority delivery slot, ask friends and family to help you with your food shopping, or contact NHS Volunteer Responders (NHS Volunteer Responder website; Tel: 0808 1963 646). If you still cannot access support, please contact your local authority.
- You are advised not to go to the pharmacy – ask friends and family to collect your medicines for you. If this is not possible, you will be eligible for free medicine deliveries. Contact your local pharmacy for more information.
You may of course require visits from care providers, and these should continue. Your care providers will need to take full precautions to protect you as mentioned above.
In terms of daily support with groceries, you will be able to use a new online service to register yourself, or on behalf of someone else, to:
- Request access to a priority supermarket delivery slot (if you have already got priority supermarket deliveries, you will keep them).
- tell your council if you need support in order to follow this guidance that you are unable to arrange yourself and cannot be provided by friends, family or other support networks
- make sure your details such as your address are up to date
You can register for support using the new online service.
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
Scotland, Wales and Northern Ireland information
Guidance and restrictions relating to coronavirus are different across the four nations of the United Kingdom. Scotland introduced a five-tier system from Monday 2 November. Wales is in a ‘firebreak’ lockdown until 9 November and Northern Ireland is on tighter restrictions.
If you live in one of the devolved nations, please click below for specific coronavirus information.
Mental health advice
‘Distance Aware’ badges
Support available from MDUK