Last updated: 20 May 2020
In the midst of 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’re working with clinicians and other charities to gather the facts and latest guidance to help answer the most common questions you’ve been asking about COVID-19 and neuromuscular conditions.
We will update this page whenever we have new information from the clinicians, and we’ll let you know of any urgent updates. Please keep an eye on the NHS website where they’re constantly updating their information too.
What is coronavirus (COVID-19)?
COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called coronavirus.
Guidance for everyone
It is important to stay at home as much as possible to help stop the spread of coronavirus. Some people living with a muscle-wasting condition will need to stay at home to shield – see below for more information on this.
You should only leave your home:
- shopping for basic necessities, such as food and medicine, as infrequently as possible
- exercise or spend time outdoors – alone, or with members of your household or to meet one person from another household in an outdoor public space, provided social distancing is observed.
- any medical need, or to provide care or to help a vulnerable person
- travelling to and from work, but only if you cannot work from home.
When outside your home it is important to “Stay alert” by staying 2 metres away from anyone you do not live with.
What are the symptoms of coronavirus?
The main symptoms of coronavirus are:
- a high temperature – this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
- a new, continuous cough – this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)
- Loss or change to your sense of smell or taste – this means you’ve noticed you cannot smell or taste anything, or things smell or taste different to normal.
Most people with coronavirus have at least one of these symptoms.
If you have symptoms of coronavirus, you can ask for a test to check if you have the virus. This is called an antigen test. More information can be found on the NHS website.
To protect others, do not go to places like a GP surgery, pharmacy or hospital. Use the 111 online coronavirus service to find out what to do.
What does coronavirus mean for people with muscle-wasting conditions?
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.
What should we 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.
Am I at increased risk of getting COVID-19?
There is currently no specific information on whether people living with a muscle-wasting condition are at increased risk of infection with COVID-19.
Will I be impacted more severely if I get COVID-19?
The clinical expert group agrees that many (although not all) people with a diagnosed or undiagnosed neuromuscular condition (in other words non-specified conditions) fall into the official category of being “clinically extremely vulnerable” to COIVD-19 and should be practice shielding (staying at home at all times). People with a neuromuscular condition likely to fall into this group 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.
We can also share this advice from the Association of British Neurologists, which makes clear that people with a ‘muscle disease’ may be significantly at risk of being severely ill from COVID-19.
If your condition means that you fall into the “clinically extremely vulnerable” group you should have received a letter or other communication from the NHS confirming this. If you think you fall into this category but have not heard anything, you are advised to contact your neuromuscular specialist team or your GP. If you need contact details for your specialist neuromuscular team, we can help with this.
If you fall into the category of “clinically extremely vulnerable”, it’s advisable that your whole family or household practices shielding. If it is not possible for your whole household to shield, you may want to identify one member of the household who is responsible for making essential trips. It’s vital they practise stringent social distancing measures and take all the precautions listed below whenever they return to your home.
You may of course require visits from care providers, and these should continue. Your care providers will need to take full precautions to shield you as mentioned above.
See below for more information regarding carers, including things you may need to consider if you employ your own carers.
Public Health England has more information below about who fits into the category of “clinically extremely vulnerable”.
What is shielding?
Shielding is a practice used to protect the “clinically extremely vulnerable” from coming into contact with COVID-19. It means minimising all interaction with other people, in case they are carrying COVID-19. So those who are extremely vulnerable should not leave their homes. Within their homes, they should minimise all non-essential contact with other members of their household.
If you have a condition that makes you “clinically extremely vulnerable” then you can register for support, such as help with deliveries or getting essential supplies, via the Government website. We know that there are issues around this, which we are highlighting and seeking to have addressed.
What does this mean?
You are strongly advised to stay at home at all times, and to avoid any face-to-face contact. The Government have now advised “clinically extremely vulnerable people” to do this beyond June, although they have not yet provided a clear timescale.
On 11 May the Government published “Our Plan to Rebuild: The UK GOvernment;s COVID-19 recovery strategy“. This document states that “Those in the clinically extremely vulnerable cohort will continue to be advised to shield themselves for some time yet, and the Government recognises the difficulties this brings for those affected. Over the coming weeks, the Government will continue to introduce more support and assistance for these individuals so that they have the help they need as they stay shielded.” We have called for more clarity and have highlighted the concerns that people living with a muscle-wasting condition who are having to shield have shared with us. We will provides updates as soon as they are available.
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 I do if I have symptoms of COVID-19?
If you develop symptoms of COVID-19 (high temperature above 37.8°C and/or a new and continuous cough, and/or loss of smell and taste), contact the NHS 111 online coronavirus service, or call NHS 111 if you don’t have internet access. If you’re seriously ill, call 999. Do this as soon as you get symptoms. Do not visit the GP, pharmacy, urgent care centre or a hospital.
To help the NHS give you the best care if you need to go to hospital as a result of becoming seriously ill with symptoms of coronavirus, the NHS asks that you prepare a single hospital bag. You can read more about hospital admissions during coronavirus.
Scotland, Wales and Northern Ireland information
If you live in one of the devolved nations, please click below for specific coronavirus information.
Carers and PAs
Schools and nurseries
Mental health and wellbeing coaching
Support available from MDUK