Coronavirus and MND
We are aware that the situation surrounding the coronavirus pandemic may be causing people affected by motor neurone disease (MND) concern.
If you are living with MND or caring for someone with MND please discuss any specific concerns you have with your health and social care team. They will be able to give you advice and information which takes into account your specific circumstances.
Having taken advice from clinical experts, with experience in neurological conditions, we have provided answers below to common questions. As COVID-19 is a new virus, facts and guidance are still emerging and changing - we will continue to update this content as we find out more.
We are extremely concerned to see that people with MND have not been included in the Government’s list of extremely vulnerable persons in their guidance on shielding and protecting vulnerable persons from COVID-19. However, people living with MND can self-register as extremely vulnerable
Answering your questions about coronavirus (COVID-19)
Having taken advice from neurologists and specialists working in our care network, it is clear that people with MND fall into the group for whom coronavirus could be particularly dangerous. Our priority as an Association is to do what we can to reduce the chances of spreading the virus.
With that in mind all MND Association branch and group meetings, get togethers and all events between now and the end of April have been postponed, as have Association organised events. This date will be reviewed regularly in accordance with government guidelines - we expect to have to extend it. Staff and volunteers are using technology – phone calls, email, Facetime and Skype for example - to support people with MND and their carers rather than meeting face to face.
Our teams will be working hard to ensure that everyone who needs and wants support will continue to receive it.
Other aspects of the Association’s work will continue as usual with the aim of keeping any impact on people affected by MND to a minimum.
The current outbreak of COVID-19 (coronavirus) is an illness caused by a new strain of the virus. Other types of coronavirus can cause common colds, but COVID-19 causes fever and coughing.
As it can affect your lungs and airways, complications can develop for some people with underlying conditions.
You are considered at risk with COVID-19, if you have a chronic neurological disease, such as motor neurone disease (MND). You may have concerns if you are living with MND or Kennedy’s disease, or you help to support someone with either condition.
You can also find information in easy read if needed.
Further government information on what you can and can't do during the outbreak has now been provided.
Most people are limiting social interaction at the moment, following Government recommendations.
If you are at higher risk, as with MND or Kennedy’s disease, you need to self-isolate at home during the outbreak. It is very important that you try to avoid the infection.
For the time being, limit personal contact to those who live in the same household or those who are essential to your care.
People who do need to be in close contact with you should also self-isolate as much as possible, and follow guidance to reduce risk of bringing infection into your home. However, they may need to help you with shopping and picking up medical supplies.
The Government has provided Guidance on social distancing with useful advice for older people and vulnerable adults who need help with care.
If your main carer is unable to assist you for any reason, contact
- your local authority for help in England and Wales – see gov.uk/find-local-council
- your local health and social care trust in Northern Ireland – search for health and social care trusts at nidirect.gov.uk
If you have a professional care worker who becomes unable to support you, contact the care agency first for guidance. If the agency cannot provide alternative support, contact your local authority for help in England and Wales. In Northern Ireland, contact your local health and social care trust.
Take the following steps or ask your carers to help:
- contact your doctor and request any necessary medications (ask how to best order these from a reputable provider or pharmacy if they are unable to supply at the moment)
- ensure you have enough paracetamol at home to treat fever
- please avoid using anti-inflammatories such as ibuprofen for COVID-19 (if you take these for other reasons, ask your doctor or care team for advice)
- have enough household supplies and groceries to stay home for a period of time
- download telecommunication applications that enable video messaging on your mobile phone or tablet, for remote consultation with your doctor and care team
- ask your doctor and care team on the best way to contact them if you have speech and communication difficulty
- your carer may be able to support with these communications, if needed.
Continue to follow the standard hygiene measures outlined by:
- Public Health England advice for extremely vulnerable people
- Government information at GOV.UK
- NHS information
- NHS handwashing technique
However, when at high risk, it may help to think about how you or your carer handle any deliveries of supplies or prescribed medication:
- these should be dropped off at the door and then wiped with a surface cleanser, such as a kitchen or bathroom spray, water containing washing up liquid, alcohol based cleanser, disinfectant or diluted bleach
- discard the bag safely
- whoever picks them up should wash their hands according to the guidelines given in the links shown above.
If anyone living in your home becomes infected, they should:
- self-isolate away from you for 14 days
- try to use separate rooms during that time (if there one bathroom, surfaces need to be wiped with disinfectant between uses)
- arrange for alternative care if they are your main carer and you need support
- use separate cutlery and plates, which need to be washed with hot water and washing up liquid, or in a dishwasher.
If you become infected, you may need support from your carer. If this is the case, they should practice self-distancing where possible and follow the recommendations above. This means keeping 2 metres apart, unless they have to provide direct physical support. If this is necessary, they should wash their hands immediately after providing support.
Anyone living with you is likely to contract the virus too and will also need to self-isolate with you, for 14 days. This means they should not go outside for 14 days, even for shopping. Try to ensure your supplies could last for 14 days, if needed.
Read all the content on this web page and continue to provide support as long as you:
- are free of the virus symptoms, including fever, unexpected and persistent coughing, and feeling short of breath
- have not been in recent close contact with anyone who has the symptoms.
If you do have symptoms, you must self-isolate for 14 days away from the person at high risk. If you do not live with them, this means not entering their home during this time. If you live in the same household, try to isolate in a different room as much as possible.
Alternative care may need to be arranged if you become unable to offer support, especially if the person with MND or Kennedy’s disease is unable to manage daily routines without your help. Try the following:
- contact the care agency if you receive some help from a paid care worker, as it may be possible to increase the amount of care
- contact the local authority for the person you support in England and Wales
- contact the person’s local health and social care trust in Northern Ireland.
If you need guidance with this, contact our MND Connect helpline
When supporting someone at high risk, take extra care with hygiene. See the Government's Guidance on social distancing for carer advice. Further guidance about coronavirus for carers is provided by Carers UK.
It is particularly important to consider hygiene before and after supporting someone with MND to eat and drink. Also when assisting them with moving and handling from one location to another.
COVID-19 usually includes a fever (high temperature), a dry cough and feeling short of breath. In some cases, this can lead to complications, including a type of pneumonia.
Do not visit a surgery or clinic, as this could spread the virus and may mean they have to close.
If you get a fever or develop unexpected and continuous coughing, contact your own care team by phone, text or email, for guidance. This could be health and social care professionals at an MND care centre, network or local neurological service.
If your symptoms worsen, contact the NHS as follows. Ensure they know you have a condition that places you at risk:
- in England, contact NHS 111
- in Wales, contact NHS 111 or 0845 46 47
- in Northern Ireland, contact 0300 200 7885.
If you have any concerns about attending a pre-booked surgery, hospital or hospice appointment, contact the relevant professional by telephone or email to ask for guidance. If non-urgent, it should be possible to postpone the appointment to help you maintain self-isolation.
There is currently no vaccine available for coronavirus.
However, paracetamol has been advised by the NHS to help lower temperature.
Do not take anti-inflammatories such as ibuprofen for COVID-19 symptoms. If you take these for other reasons, ask your doctor or care team for advice.
If you are having difficulty in obtaining paracetamol or you feel concerned about other medication that you take, contact your doctor or care team for guidance.
You may have concerns about taking riluzole during the coronavirus outbreak. Some people are worried about the impact on their immune system, as riluzole can affect your blood cell count.
However, this only happens in extremely rare cases and when it does, it’s usually in the first three months of taking riluzole.
It is also important to know that the effects of riluzole are small. This means that if you stop taking it for a few weeks, or even months, you should not notice MND progressing any faster than before.
Follow advice given by your own care team or the prescribing professional, but general clinical recommendations are as follows:
Not yet on riluzole: don’t start to take riluzole during the coronavirus outbreak. This is because routine blood tests may not be available to check how riluzole affects you.
On riluzole for less than three months: you can safely stop taking it during the outbreak. This may be wise if you are unable to get routine blood tests.
On riluzole for more than three months, but less than a year: at this stage you would normally have blood tests every three months, if your previous test was fine. This means you should be able to continue riluzole safely for the time being, but you can stop taking it during the coronavirus outbreak if you prefer.
On riluzole for more than a year: your blood counts should now be stable and you can continue to take this medication safely. However, you can also stop taking riluzole during the coronavirus outbreak if you prefer.
Wearing a protective facemask or filter may not be helpful and could make breathing more difficult if you already get breathless. However, if you use a breathing mask for assisted ventilation, then continue to use this as normal.
If you use NIV, the device blows out air coming from your lungs. This is normal and how the machine works.
However, if you have been infected with coronavirus, NIV will send virus particles into the air around you, as does coughing.
If this is the case:
- remain in one room as much as possible while you are sick
- all surfaces in the room should be regularly wiped down with a surface cleanser, such as a kitchen or bathroom spray, water containing washing up liquid, alcohol based cleanser, disinfectant or diluted bleach
- anyone who has to enter to support you, should practice safe distancing as much as possible, keeping 2 metres away - unless they have to provide direct physical help
- if someone does provide direct physical support, they should wash their hands immediately after leaving the room
- other people who live with you need to avoid entering this room if at all possible
- everyone living in your home is likely to contract the virus too and must self-isolate with you for 14 days. This means they should not go outside for 14 days, even for shopping
- try to ensure your supplies could last for 14 days, if needed.
Prolonged use of oxygen therapy can be risky with MND. It can cause an upset in the balance between oxygen and carbon dioxide in your blood stream. However, there may be situations where oxygen can be used for short amounts of time to bring levels up.
This should be done with the knowledge of your care team, who understand your needs.
At the moment, we are unable to send out physical resources due to current isolation measures, including our alert wristbands and cards. However, we have produced the following MND Alert to use on your mobile phone or print off at home. Try to have this alert with you at all times. If you do need emergency help, this will let medical staff know that you have MND and that oxygen may need to be used with caution.
You can download this MND Alert or copy the image below:
Due to the impact of the coronavirus (COVID-19) in the UK, the Government is offering a range of help related to employment, self-employment and possible loss of income. This may include claiming Statutory Sick Pay, Universal Credit or employers receiving Government assistance to ensure a proportion of your salary.
For guidance, see the following websites:
Current national guidance is to limit to essential travel only, in the UK.
Most countries have adopted strict controls.
See the following link for more information about travel:
Anyone should self-isolate for 14 days if they’ve:
- travelled in the last 2 weeks from a high risk country
- been in contact with someone who has.
If this applies to you, discuss this with your main carer as they may also be affected.
This is a difficult time for everyone, but you may be looking for ways to help children and young people during the pandemic.
Although younger people seem less affected by coronavirus symptoms, they may still be anxious. Knowing how to open and approach conversations about coronavirus can be helpful.
We have provided help on our parents and guardians page, including links that may help with information, support and activities for the younger members of your family.
At the moment, we regret that we are unable to send out printed publications, or other physical resources. This is due to the current need for isolation in the UK.
However, almost all of our information resources are available online - see our resource lists on our publication pages.
If you would like guidance about our information, contact our MND Connect helpline for support.
Please discuss any specific concerns you have with relevant members of your health and social care team. They will be able to give you advice and information which takes into account your specific circumstances.
Our MND Connect helpline can also provide general guidance and support.