If you are living with or affected by motor neurone disease (MND) or Kennedy's disease, we are here for you. Find links below to the latest government or health recommendations on coronavirus (Covid-19).
Although the impact of the pandemic has reduced alongside the vaccination programme, the virus is still with us.
We will continue to update, with guidance from clinical experts in neurological conditions, as needed. Ask your GP or specialists for advice on individual circumstances.
Select from the following options about Coronavirus. If you need information about MND or Kennedy's disease, search for content by need with our:
Care information finder
How can the MND Association help me?
As coronavirus can cause a higher risk with MND, the MND Association has focused on:
- reducing the risk of spreading the virus
- providing support and help to those who need it at this difficult time, including people with and affected by MND, and those with or affected by Kennedy's disease.
We are here for you.
How to contact us
MND Connect is available Monday to Friday between 9am - 5pm and 7pm - 10:30pm.
Calls to this number are free from landlines and mobile phones within the UK and do not appear on itemised bills.
Please discuss specific health concerns with your GP or 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.
If you are living with MND, or Kennedy's disease, you may wish to explore our services. These are explained in our Support and information pages.
Financial support and emergency grant: Our existing grants are still available and also our emergency grant to help with the rise in living costs following the pandemic. Find out more on our Financial support page.
Equipment loan: We offer certain items on loan. See our Equipment loan page for more details and regular updates.
Benefits advice service: Please contact our Benefits advice service for individual guidance on benefits and the best way of claiming them. The service can also support with complex benefits issues and appeals against decisions.
Government support: During the lockdowns, the Government offered a range of help related to financial hardship. Temporary assistance continues to change, but you can find out more on the following sites. Use search terms such as: cost of living or for help with energy costs or for queries about work, look for: employment:
GOV.UK (England and Wales)
NI Direct (Northern Ireland)
See also our page on Benefits, financial support and cost of living.
What is Coronavirus (Covid19) and how do I find more information?
Covid-19 is a type of coronavirus. Other types of coronavirus cause common colds, but Covid-19 causes fever (a high temperature), a dry cough and feeling short of breath.
Some people also have an upset stomach, lose their sense of smell or taste, or report other symptoms. This depends on how your body responds to the virus.
In some cases, the virus can lead to severe symptoms, including a type of pneumonia.
If you test positive for the virus, paracetamol has been advised by the NHS to help lower temperature. If you take anti-inflammatories such as ibuprofen, ask your doctor or care team for advice if you become infected with coronavirus.
If your symptoms get worse, contact NHS 111 or dial 111. This helpline is now available across England, Wales and Northern Ireland. Ensure they know you have a condition that places you at risk with coronavirus.
Improved treatments are now available to help anyone admitted to hospital with the virus.
The majority of people recover from the infection, even with complications. However, some people with more severe symptoms do die.
You are considered at risk with Covid-19 if you have a chronic neurological disease, such as motor neurone disease (MND).
New strains of Covid-19: these pass on more easily, but are not thought to cause a higher risk of complications.
Immunisation: being vaccinated against Covid-19 reduces the impact of complications for most people who receive the jabs (see the next drop-down option How do I find out about immunisation and booster jabs?).
Oxygen therapy: this can be risky with MND, as it can upset the balance between oxygen and carbon dioxide in your blood. However, oxygen is sometimes used for a short time to bring levels up. This should be done with the knowledge of those in your care team, who understand your needs. See the option for Forms and resources to help communicate your needs on our information page, which includes details about our MND alert card with an oxygen warning for emergency staff.
Using NIV: If you use non-invasive ventilation to support your breathing, the device blows out air coming from your lungs. This is normal and how the machine works. There is no additional risk of infecting others if you are not infected. However, if you test positive, NIV will send virus particles into the air around you, as does coughing. In this case try to remain in one room as much as possible while you are sick and limit contact with other people.
Can I still self test at home?
Lateral flow tests (LFTs) can be used at home to test if you are positive for coronavirus. These are no longer available for free, but can be purchased from chemists and some supermarkets. These use a nose swab test - and some include a throat swab too. You get a result in a very short time.
You may qualify for a free test kit with MND. Find out through the NHS website.
Do I need to wear a mask?
In most places, the wearing of a face mask to protect against the virus is now optional. You may be asked to wear one in clinical settings. This is to help prevent the virus from spreading if someone is infected.
Even where face masks are required, you may not have to wear one with MND or Kennedy's disease. If your symptoms make it difficult or uncomfortable to cover your face, you have an acceptable reason to remain exempt.
Exemption notice: We provide a notice to help. It states your specific condition and that you are exempt from wearing a face mask. It is not a certificate, but explains your reason for not covering your face.
- Face mask exemption for MND
- Face mask exemption for Kennedy's disease
How do I find more information?
For the latest guidance about coronavirus in each nation, see government information for:
See the Social Care Institute for Exellence (SCIE) website to find easy read resources for people with autism and learning disabilities.
Find information about coronavirus in other languages at Doctors of the World.
How do I find out about immunisation, booster jabs and anti-viral treatment?
Getting the vaccine
You can also go to a local walk-in centre.
If you are housebound, you may be able to receive the jab or booster at home. Contact your GP to find out if an outreach team is available in your area and to make arrangements.
The NHS has stated the vaccines are safe and the best way to protect against Covid-19. There is no known conflict between the vaccine and either MND or Kennedy's disease, but if you have any questions, ask your GP or specialist. Read about the safety of the vaccines on the NHS site or in more detail with the Association of British Neurologists or the British Society for Immunology which includes guidance in different languages.
Can I get the new anti-viral treatment if I get Covid-19?
If you have MND and test positive for Covid-19, you may qualify for new anti-viral treatments, depending on other underlying conditions. Contact your GP as soon as possible after testing positive, as anti-viral treatments usually have to be taken within 5-7 days. These treatments can reduce the symptoms and help prevent possible complications. Find out more by searching for covid anti-virals on the NHS website.
Do I still need a flu jab?
Yes. While a flu jab cannot protect against the Covid-19 virus, it will help protect against flu.
The Department of Health advises getting a flu jab if you live with a chronic disease, including motor neurone disease (MND). You may also qualify if you are caring for someone with MND, who may be at risk if you fall ill.
For those most at risk, flu can lead to more serious illnesses including bronchitis and pneumonia. It only takes a minute to get the flu jab each year, but this will protect you for 12 months.
Contact your GP surgery to arrange an appointment. The flu jab is available from the beginning of October every year.
If you would like more advice, contact our MND Connect helpline.
Page last updated: 21 August 2023