If you are living with or affected by motor neurone disease (MND) or Kennedy's disease, we are here for you. Find answers below to common questions about coronavirus (COVID-19) and how to get support when staying at home. Ask your GP or specialists about specific health concerns, as they can advise on individual circumstances.
We have produced this page with guidance from clinical experts, experienced in neurological conditions. We will continue to update our content on this new virus as we find out more. Watch our Ask the Expert videos for detailed responses to some of your questions.
Answering your questions about coronavirus (COVID-19)
How we can help
With people living with MND falling into the group for whom coronavirus could be particularly dangerous, 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.
In response, we have redeployed staff, upskilled more than 240 volunteers, developed new ways of working and improved our use of technology. By the middle of April we had:
- written to all 4,108 people with MND on its database to offer support
- called 50% of people with MND we had permission to phone (with calls ongoing)
- continued one-to-one support for those who need it using email, phone calls and virtual meeting platforms
- identified potential future gaps in MND care centre and network activity as a result of NHS redeployment, enabling work to start on increasing support as necessary
- created an online coronavirus information hub, providing a one-stop shop to answer questions and explain our work in this area
- facilitated a Clinical Advisory Group focusing on issues being faced by those we support
- launched a campaign urging the government to recognise people with MND as among those who needed shielding as ‘extremely vulnerable persons'
- introduced a new system to process emergency grants to support during the stay at home period.
We are here for you.
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.
Although we cannot offer face-to-face support, meetings or events at this time, we continue to provide existing and additional support where we can.
Financial support and new emergency grant
Our existing grants are still available to those we support and you can find out more about how to apply on our Financial support page. We have also introduced a one-off emergency grant to help with additional living costs as a result of coronavirus (COVID-19), such as food shopping or bills.
Due to the current situation, equipment loans may take longer to source and deliver, for example, iPads and headset microphones for voice banking. However, we are doing all we can to assist you. Requests for these items may take a few weeks to fulfill. However, this is constantly changing. See our Equipment loan page for more details and regular updates.
Benefits advice service
Please see our Benefits advice service to find out how to get individual guidance on benefits you may be able to claim and the best way of claiming them. The service can also support with complex benefits issues and appeals against decisions.
Government employment support
Due to the impact of the coronavirus (COVID-19) in the UK, the Government has offered a range of help related to employment, self-employment and possible loss of income. However, when formal shielding ceases on 1 August 2020 (for England and Northern Ireland) and 16 August 2020 (for Wales), some of the temporary assistance linked to shielding and lockdown may no longer be available. Other ongoing benefits and financial support will still apply.
For up to date guidance on financial support during the pandemic, see Government guidance and further help at the following websites:
GOV.UK (England and Wales)
NI Direct (Northern Ireland)
You are not alone.
If you need guidance about our information, services, external services or just need someone to listen, contact our MND Connect helpline for support.
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.
About coronavirus (COVID-19)
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 (a high temperature), a dry cough and feeling short of breath. Some people may also have an upset stomach, or lose their sense of smell or taste.
As it can affect your lungs and airways, complications can develop for some people with underlying conditions. In some cases, this can lead to severe symptoms, including a type of pneumonia.
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). You may have concerns if you are living with MND or Kennedy’s disease, or you help to support someone with either condition. This page provides information to help you.
We are updating this page on a regular basis, with guidance from clinical experts.
See the next drop-down option on finding national and local information, and our other resources.
Find national and local information about the coronavirus outbreak, and our other resources, as follows:
Latest national information about coronavirus (COVID-19)
See the Government website on the coronavirus outbreak or latest guidance from the NHS. This includes guidance on hygiene and hand washing to help stop the spread of the virus, information on shielding and support options.
If you live in Northern Ireland the Public Health Agency and NI Direct have shared information. For those living in Wales please see general information about coronavirus at Gov.Wales and information on shielding in Wales.
See the Social Care Institute for Exellence (SCIE) website to find a range of easy read resources about coronavirus (COVID-19) to help people with autism and learning disabilities.
Further government information on what you can and can't do during the outbreak has now been provided.
If you need information about coronavirus in another language, see: https://www.doctorsoftheworld.org.uk/coronavirus-information/
Due to the impact of the coronavirus (COVID-19) in the UK, the Government has offered a range of help related to employment, self-employment and possible loss of income. However, when formal shielding ceases at the end of July (for England and Northern Ireland) and in August (for Wales), some of the temporary assistance linked to shielding and lockdown may no longer be available. Other ongoing benefits and financial support will still apply.
For up to date guidance on financial support during the pandemic, see Government guidance and further help at the following websites:
GOV.UK (England and Wales)
NI Direct (Northern Ireland)
You can also find some practical help on the Money Saving Expert site.
Travel and Motability
For tips about the Motability scheme and looking after your vehicle during the lockdown, see the following link:
The UK and most other countries still have restrictions or rules on travel at the moment. See the following link for updates:
If you need help on legal matters, you may find it helps to contact either Citizens Advice or the Disability Law Service for a first discussion. However, most legal firms are still open with their staff working from home. This means face to face meetings may not be available, but telephone or online communication can assist.
Local support and information about coronavirus (COVID-19)
It is important to be as informed as possible about support that is local to you. A good place to start is the website for your local authority or council in England and Wales. In Northern Ireland, look for information from your local health and social care trust.
Find contact details as follows:
- see gov.uk/find-local-council to find local authorities in England and Wales
- search for health and social care trusts at nidirect.gov.uk to find local health and social care trusts in Northern Ireland.
This may include trusted volunteer support for help with deliveries of food, supplies and medication.
Other local organisations, community groups and care agencies are likely to have coronavirus guidance on their websites. This may help you find out if their service has been affected or if they're offering any additional support.
For people without online access: If you know someone without online access to websites or social media, local radio can help them find out what's happening in their area. Look at BBC radio stations for more detail. Local BBC radio stations are also giving away dab radios to some over 70's to help them access radio broadcasts.
Our resources about MND and Kennedy's disease
Almost all of our information resources are available online through our publication pages. If you would like guidance about our information, contact our MND Connect helpline for support. Orders for printed copies may take a little longer than usual to reach you, depending on postal services and the impact of the outbreak in certain areas.
Registered shielding is ending soon, for those considered to be extremely vulnerable to COVID-19. In England and Northern Ireland, shielding ends from 1 August 2020, which means support linked to shielding may no longer apply. For example, you will no longer be able to claim statutory sick pay if shielding means you are unable to work. The same is happening in Wales, but shielding there will end slightly later from 16 August 2020.
Although lockdown is starting to ease and shielding is ending, COVID-19 is still present. This means there is still a need for social distancing and good hygiene.
When shielding ends, everyone will be expected to follow the same government advice on social distancing. Guidance for England can be found in Staying alert and safe (social distancing) and their summary of what the general public can and cannot do. There is separate advice for Northern Ireland and for Wales.
Please note that Government guidance is updated as changes happen.
There may be things we all have to do to remain within the law. For example, wearing face coverings in certain locations - for more detail, see the next drop-down option on this page Do I need to wear a protective face covering? including our Face mask exempt notices for people with MND or Kennedy's disease.
We understand that people with MND, their families and carers may be concerned or have questions about these changes. The MND Association is taking a cautious approach. We are studying the guidelines very carefully and reviewing them alongside MND specialists, so that we can continue providing the best possible information and advice.
In the meantime if you have any questions please do contact MND Connect, or your local MND care centre or network.
Those at high risk of developing complications if infected with the virus, are still recommended to maintain social distancing as much as possible. Continue following hygiene measures, such as washing hands frequently and cleaning surfaces. This is particularly important if you need to leave and return to your home for any reason. For example, if you go to an appointment, or if you are a carer, or living with someone who is at high risk.
We realise it is important to get on with living your life the best way you can. What you do next has to be your choice, but it may help to balance the risks when making decisions about meeting other people.
If in doubt, contact a member of your MND health care team for guidance. They can advise on your symptom progression and any specific actions you can take if you need to leave your home for any reason.
There is no reason to assume that you are more likely to catch the virus with MND, than someone without any underlying health conditions. But if you do get infected, you may be at higher risk of developing complications. However, this is more likely if your breathing is already affected by MND and getting weaker, or if you have a lot of secretions (pooling of saliva or mucus).
As with anyone who has complications from COVID-19, recovery from the virus can be difficult and the more severe coronavirus symptoms can lead to death.
If your breathing or swallowing haven’t been affected and you can get outdoors without risking close contact with others, you may feel this is an appropriate risk to take.
However, if you have breathing problems, a lot of secretions, or you are over 50, you may be at higher risk of complications if you get infected. In these circumstances you may want to think carefully before engaging in activity or travel outside of your home.
If you feel that impaired movement or mobility also puts you at higher risk of contact, this is also something to consider.
Covering your face with a mask or cloth may not stop you getting coronavirus. However, it could prevent transmission to others. This is important as you may be unaware that you have the virus. If you are infected, symptoms can take time to develop or you may carry the virus without showing any signs.
You can transmit the virus through droplets when you breathe, cough or sneeze. This is why the use of face coverings is increasing, to ensure that people keep their mouth and nose protected in public spaces. The aim is to reduce the risk of virus transmission.
You may not have to wear a face covering if you are living with MND or Kennedy's disease (further details below).
If you experience any coronavirus symptoms you should not go out, even with a face covering. You must self-isolate and get tested for the virus, as set out in existing guidance.
What are the rules in my location?
The rules on face coverings vary across the different nations. Depending on your location at the time, you may be fined if you don't comply with covering your face. However, if you qualify as exempt, you do not have to wear a face covering.
The following links provide government guidance on where and when you may be required to wear a face covering, including reasons why you may be exempt.
In England you are already required to cover your face on public transport, but this will also be mandatory in shops and supermarkets from 24 July 2020.
In Northern Ireland you are required to cover your face on public transport.
In Wales there are recommendations about covering your face, rather than mandatory rules.
Am I exempt from having to wear a face covering with MND or with Kennedy's disease?
If you have MND or Kennedy's disease, your symptoms may make it difficult or uncomfortable to wear a face covering. If this is the case, you have an acceptable reason to remain exempt from covering your face.
Even if exempt, you may be questioned if you don't wear a face covering. You can download exemption notices provided by the Government on their GOV.UK website.
We also provide an exemption 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.
Download the PDF to your phone or computer tablet, to display onscreen when needed. It is the size of a business card, so you can also print and trim the edges to fit into a pocket, purse or wallet.
Please note: if you use a breathing mask for assisted ventilation, then continue to use this as normal. See also the drop down on this page about non-invasive ventilation (NIV).
Continue to follow recommended hygiene measures, as included in the following:
- Public Health England advice for extremely vulnerable people
- Guidance on shielding for extremely vulnerable people in Northern Ireland
- Guidance on shielding and protecting in Wales
- NHS information
- NHS handwashing technique
However, when at high risk, it may help to think about how you or your carer handle any incoming supplies, or deliveries of 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.
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, develop unexpected and continuous coughing, or lose your sense of smell or taste, 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.
Contact NHS 111 or dial 111 for he NHS coronavirus helpline, should your symptoms get worse. This helpline is now available across England, Wales and Northern Ireland. Ensure they know you have a condition that places you at risk
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.
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.
There is currently no vaccine available for coronavirus.
However, 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 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
Is it still safe to take riluzole for MND during the coronavirus outbreak?
You may have had concerns about starting riluzole during the coronavirus outbreak or decided to stop taking it. Riluzole has a very good safety profile, but it does require some blood test monitoring during the first year of use. It was not always possible to have these blood tests done during the peak of the coronavirus epidemic, but blood tests are becoming more available through the GP and hospital services, unless you are shielding.
Follow advice given by your own healthcare team or the prescribing professional, but general clinical guidance is as follows:
Not yet started riluzole: You will need to have blood tests taken before starting. These are then repeated every month for the first three months, and then every three months for the first year. These tests would need to be arranged either through your GP or your hospital team.
Stopped riluzole but now want to restart: If you had previously taken riluzole for more than one year before you stopped, it is safe to resume without more blood tests, if your GP or healthcare team agree. If you had been taking riluzole for less than one year before you stopped, arrange for a blood test before restarting and follow the usual repeat testing plan after that.
Not stopped riluzole but taken for less than a year at the time of lockdown: You should arrange to have a blood test when possible and complete the usual repeat testing plan.
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 may still have difficulties in sending out our physical resources, although we are doing all we can to ensure you receive your orders. In the meantime, you can view most of our information resources online. If you are waiting for one of our MND Alert cards or wristbands, you can also use the following MND Alert on your mobile phone or print this off at home. Try to have this alert with you at all times. If you do need emergency help, this lets 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:
General treatments and appointments may have been postponed during the pandemic. This may feel distressing, but they will be rebooked as soon as possible. Many healthcare services are now catching up with routine appointments for assessment, blood tests and procedures.
You may find a planned procedure is still delayed, such as the introduction of tube feeding or assisted ventilation. This may happen for the following reasons:
- your care team may want to avoid your admission to hospital at the moment, if they are waiting for areas exposed to the virus to be cleaned.
- many NHS staff have been helping on hospital wards during the coronavirus outbreak - this may still be the case in certain regions
- schedules have been interrupted by the ever-changing needs and some staff becoming ill themselves.
We recommend contacting your MND care centre or network, or your local neurological clinic for guidance. Leave a message if there is no instant reply, as it may take some time for staff to respond. This will vary depending on daily pressures. If need be, try again after several days or try a different contact point.
Many clinics and centres are giving consultations in ‘clean’ environments or through remote means. Each consultation is on a case by case basis at the moment, based on urgency. For remote consultations, see general information on how a video consultation might work from Barts Health NHS Trust. If you have speech and communication difficulties, you may need support from your carer during this type of consultation.
Some private hospitals may be prepared to help, but there could be a cost involved. However, many private hospitals are also involved in coronavirus care now.
Your GP and local care team may also be able to help with temporary alternatives, such as positioning, breathing exercises and medication to assist with breathlessness. See our Breathing and ventilation page for further information.
If you have early swallowing difficulties, adapting the consistency of food and drink may help. Ask a speech and language therapist and a dietitian for guidance on this and other alternatives to tube feeding. See our Swallowing, eating and drinking page for further information.
Is the COVID-19 Symptom Tracker App the same as the new tracker app being tested in the Isle of Wight?
No. The aim of the Covid symptom tracker app is to help NHS and university researchers find out about patterns of symptoms for people infected with this coronavirus, and where most cases are in the UK. This information can help them in their work to slow down the spread of the virus and find a treatment. It only uses information that you type in. Find out more at: https://covid.joinzoe.com To use this app, search for Covid tracker app at the App store or Google Play to download to your mobile device.
The new tracker app tested in the Isle of Wight was completely different and a Government initiative. The aim of this new app was to find a way to automatically raise an alert if you have been close to someone who is then confirmed as having COVID-19. The app tracked your location.
The Government is using a different 'track and trace' system now, and you can find out more about this on the GOV.UK website.
Ensuring a vaccine works and is suitable for millions of people, takes time to research and test. A year would be a short time, but much work and scientific funding is underway to find a solution as quickly as possible. This is happening across the world, as a result of this global pandemic.
There is no clear answer on timeline at the moment, but we are watching progress. Joint effort across nations is being encouraged by the UK and vaccine trials have already begun.
Early work is producing positive results, which is encouraging, but there is still a way to go yet. However, the UK is getting prepared by investing in facilities to manufacture the vaccine, once available.
See also our Ask the Experts session on research, testing and vaccines.
Yes. Finding out if someone is currently infected with COVID-19 requires a throat and nose swab test. This is best achieved if the test is done within five days of being infected – as a test may take 1-2 days to arrange, this should be considered in the first three days of symptoms.
Results should be returned within 48 hours (72 hours for home testing), but this may depend on the numbers being processed.
There are still limitations on who can be tested and when, although home testing is gradually increasing.
You can find out details about getting tested on the GOV.UK website, which is updated regularly as the situation continues to change (which may vary between England, Northern Ireland, Scotland and Wales). You can also apply for testing through GOV.UK.
An antibody test is supposed to be able to detect whether a person has had the coronavirus and since recovered. Unlike the swab test to see if you currently have the virus, an antibody test requires a blood sample.
It is possible to have an antibody test, but it's not widely available yet. The NHS website provides information about the way the test works.
The World Health Organisation (WHO) still has some doubt as to how efficient antibody tests are. They don’t know for certain if the presence of antibodies prevents someone getting the virus again and tests for antibodies are not always reliable.
It is also difficult to say how long any immunity might last.
Yes. Although most laboratory work and face-to-face assessments for clinical trials ceased during lockdown, it has still been possible to run computerised analysis across results, write reports and conduct some assessments through telephone or video communication.
Valuable time and funding has not been wasted, but research has had to adapt and find different ways to maintain progress.
Much has been learnt about how to use technology in all sorts of research, medical, commercial and charity environments. This may bring unexpected benefits as time goes on.
Laboratory work and physical assessment will begin again as soon as possible, within social distancing recommendations.
Getting support while staying at home
Most people have been self-isolating during the lockdown, following Government recommendations. With MND or Kennedy’s disease, you were strongly advised to stay at home during the outbreak. Even though lockdown is easing and shielding about to end, it is still important to avoid infection.
For more detail on the end of formal shielding in the UK, see the earlier drop-down on this page: Is there anything I need to know as the lockdown eases and shielding ends?
People who need to enter your home should continue to follow Government guidance to reduce risk of bringing infection into your environment. However, you may still need help with shopping and picking up medical supplies. For more guidance on this and how to get deliveries or volunteer support, see the drop-down option on this webpage: How do I get food and supplies delivered when self-isolating?
Guidance for England can be found in Staying alert and safe (social distancing) and their summary of what the general public can and cannot do. There is separate advice for Northern Ireland and for Wales.
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.
See also our new webpage, set up to collect links about local support, during self-isolation for coronavirus.
We have also produced a resource on Managing MND during self-isolation for coronavirus that may be helpful.
Take the following steps if you can 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)
- 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.
If you are self-isolating or just staying at home during the outbreak, you may need home deliveries of food and supplies. This can help to reduce the risk of contact with coronavirus while shopping.
Support from family and friends
It can feel uncomfortable to ask for help, but a wider family member, friend or neighbour who is not at high risk, may be happy to provide support. When shopping for their own supplies, they may be able to pick items for you at the same time. Where possible, ask for shopping to be left on your doorstep to avoid face-to-face interaction.
Anyone in your home who unpacks shopping needs to be careful with hygiene. This includes wiping down surfaces and hand washing after putting things away.
If you need additional help from a volunteer, see the next drop-down option on this page, about voluntary support.
Delivery services and how to get these
There is more demand for supermarket delivery at the moment, but services are being increased.
Formal shielding is ending soon, which has been helping those registered as extremely vulnerable to get priority deliveries. However, if you choose to continue self-isolating, contact your local supermarket to check if you can either remain on, or join their priority list. If contacting by telephone, you may need to try several times, as call queues are likely. If you have speech and communication difficulties, ask a carer, family member or friend to call on your behalf.
Also try local shops, butchers, bakeries, farm shops and food wholesalers, who may have started delivery and collection options during the previous lockdown period.
Information and other practical help on shopping, deliveries and how different supermarkets are providing support can be found on the Money Saving Expert site.
Paying for goods
When isolating, it helps to avoid touching items that pass through many hands, such as money. Cash should only be used as a last resort and:
- should be exchanged without face-to-face interaction
- contained within an envelope or bag
- wiped clean with disinfectant before and after exchange.
This is another reason why shopping online, using delivery services and click and collect systems can help. Even smaller local shops often take payment over the phone before goods are collected.
When someone else shops for you, click and collect is ideal. It lets you choose your own goods and pay for them upfront. The order can then be picked up by the person helping you, saving them time too. Some supermarkets also offer pre-paid vouchers, available online.
We strongly recommend that you do not share debit or credit card details with other people. This is to help prevent fraud. Don’t rush and take time to think before parting with money or personal information. Only accept help from trusted people or services when you need to purchase anything and refuse or ignore requests if in any doubt. If you sense a problem or that you’ve been subject to a scam or fraud, contact your bank immediately. You can also report it to: www.actionfraud.police.uk
Find out more about making safe payments at UK Finance.
Volunteers can help with a variety of tasks, such as deliveries of food, supplies and prescriptions. They may also be able to assist by telephone, text or email, if you need help with a query or just a conversation. Try to ensure you get help from a registered or trusted volunteer.
Can MND Association volunteers help me?
Some of our volunteers may also need to self-isolate. However, some are providing support by collecting shopping or essential supplies, for people with or affected by MND or Kennedy’s disease.
If you are already in touch with an Association visitor, local branch or group, contact them to find out if this support is available in your area. If it is, you will need to arrange a click and collect for them, or send them a shopping list in advance by text or email. You should also agree in advance about possible substitute products, in case they cannot find the exact items you request.
NHS Volunteer Responders
In England, volunteers registered with the NHS help vulnerable people who are self-isolating. This will continue over the coming months, even as shielding ends. Their help includes support with grocery shopping, collecting prescriptions, NHS patient transport, and transport of medical equipment and supplies. You can also have a call from a volunteer just to chat if needed.
You qualify for this support if any of the following apply:
- you want to continue to stay at home or need to avoid busier public spaces, such as supermarkets
- you have caring responsibilities
- you are self-isolating because you’ve been diagnosed with COVID-19 or have symptoms
- you've been instructed to self-isolate by the ‘Test and Trace’ service, because you’ve been near someone infected
- you are self-isolating ahead of planned hospital care
- you are a frontline health or care worker.
If you meet any of the criteria above, you may be able to self-refer for this support. For self-referral queries and for assistance once you are registered, contact a responder by telephone from 8am to 8pm on the freephone number 0808 196 3646.
GPs and healthcare professionals can also refer you. Find out more on the NHS Volunteer Responder web portal.
Can other volunteers help me?
Many local authorities, councils, and health and social care trusts have started to co-ordinate voluntary support for shielded residents. Find contact details as follows:
- see gov.uk/find-local-council to find local authorities in England and Wales
- find out about voluntary organisations in your area for Wales, through the contact page at Third Sector Support Wales
- search for health and social care trusts at nidirect.gov.uk to find local health and social care trusts in Northern Ireland.
These are worrying times and we're all having to adjust during the coronavirus pandemic. Many people are finding self-isolation difficult, but facing MND or Kennedy's disease is even more challenging in these unexpected circumstances.
Finding practical help is important, but you may also be looking for ways to stay in touch with others and feel as positive as you can while staying at home.
The following suggestions may help you find:
- new ways to connect online to ease the sense of isolation
- wider opportunities for entertainment or study
- guidance on avoiding scams.
Ways to connect online
You can link to online services, social media, software applications and websites with a smart phone, computer tablet, laptop or PC, and an internet connection.
To use video calls, your device will also need a webcam, microphone and speakers.
Applications to enable virtual meetings and social media platforms can help you stay connected with those you love. They can also help you link to support groups, support services or remote consultations with your GP and other healthcare professionals.
Most messenger, meeting and social media platforms are free to download. Here are some examples to explore. It’s also worth asking family and friends about the platforms they use, so you can connect using the same ones.
- Google Hangouts
- Google Duo
- Houseparty app
- Microsoft Teams
It can help to limit your time on social media if you find the posts make you feel tense or concerned. See the next drop-down option for support if you're feeling anxious about the coronavirus outbreak or having to stay at home.
Opportunities for entertainment or study
Once you have a device connected to the internet, there is a huge amount of content available. With people staying at home all around the world at the moment, many organisations such as museums, are putting additional content online. This includes musicians, theatres and artists to watch or live stream using online platforms.
Ask family and friends for recommendations, as they are likely to know your interests. Try to keep hobbies going, where possible, or follow sites that involve the things you enjoy the most.
We cannot take responsibility for the content of other websites, but the following examples contain lists that can help you begin to explore what’s available:
- Audible is making some of its audio books free
- Google Arts and Culture: Collections features collections from museums worldwide
- Good Housekeeping: Best virtual tours offering tours of museums, theme parks and zoos
- COVID-19 and social isolation (from MARCH Network, 2020) for a range of links, including interests such as theatre and much more
- We are undefeatable ways for people with long term conditions to stay active, with consideration of limited ability for movement
Or try some of the short courses from universities and places of learning. Many of these are free or offer discounted prices during this time:
Telephone, email and online scams are not new, but unfortunately this type of fraud is on the rise at the moment.
Scams are becoming more complex and detailed, so may not be easy to spot. For example, during the coronavirus outbreak, scams have included false sales of protective personal equipment (PPE).
Think carefully before giving out any personal details or making any kind of payment.
Find out more about making safe payments at UK Finance.
Adjusting to different routines and expectations can cause worry. Not seeing people you would normally see on a regular basis is hard. Being bombarded with news items about coronavirus can increase personal anxiety and it’s often difficult to judge if reports are based on facts. On top of this, you may be coping with MND or Kennedy’s disease in isolation.
It’s okay to feel uneasy and only to be expected. Yet, there is a much wider understanding about the potential for stress at the moment, as everyone is affected. This means a great deal of shared support is available through websites and other media. It’s important to seek information from qualified or trustworthy sources, but it can be difficult to know where to start. This page on coronavirus and all of our resources on MND and Kennedy’s disease have been qualified by experts. Our MND Connect helpline is also here to help. Dealing with the unknown can cause fear, but being as informed as you can, often reduces this feeling.
You may also find the previous drop-down option useful, for diverting thoughts to things that you enjoy: How can I keep positive while staying at home and connect safely online?
If you do feel anxious, you may find it helpful to:
- limit the amount of time you spend on social media or accessing news items
- think about where you get information from and how it is written
- discuss your feelings with someone you trust – being open about anxiety can help you make more sense of it
- set small achievable goals that give you a sense of control, even if you just plan a time to watch a favourite TV programme or connect with friends or family online
- put your feelings into words, either on paper or on a screen – once you’ve done this, it may be easier to ‘put them away’ or let them go
- stay in the moment and think about what is happening around you right now – this is part of a technique called ‘mindfulness’ that includes breathing techniques – as this can help take your mind off worries. What can you hear? What can you see?
- rather than thinking about ‘what if’, try to focus on what is known
- look after yourself with eating and drinking, and gentle exercise, even if you need assistance
- try to interact with nature where possible – while staying at home, this may mean tending houseplants, window boxes or just opening a window to watch and listen to the birds
- even though choices may be more limited, do the things that you enjoy the most
- anxiety can impact on other physical symptoms, so follow the advice of your healthcare team to manage your condition as best as you can.
Many organisations are offering support if you feel anxious about the coronavirus outbreak or having to stay at home. Here are some examples that you may find helpful:
BACP for guidance from the British Association of Counselling and Phsychotherapy.
Headspace for ways to practise mindfulness and meditation.
MIND for emotional and mental health support.
NHS for NHS recommendations.
Providing support for someone with MND or Kennedy’s disease is challenging, especially if the person’s needs are increasing. Having to manage your caring role during the current pandemic may be particularly difficult. You may even be self-isolating with the person you support, if they are at high risk. This means staying at home during the outbreak to avoid contact with coronavirus (COVID-19), including having food and supplies delivered.
This will not be easy, but we are here for you too.
We know that you are facing many demands at the present time and may not have the same level of support as before. Your own network of family and friends may be unable to visit. You may even have less external support if you usually receive help from care workers.
We hope the information on this page helps you as much as the person you support, and recommend reading as much of the content here as you can. It will help you feel informed and know where to find links to further resources.
This page includes our help, what we know about coronavirus so far and how to access practical support, with things like shopping, deliveries and volunteer support. We update this page on a regular basis, as we learn more about the virus and new services emerge.
Try to find out about support in your area, particularly through adult social care services. A good place to start is the website for your local authority or council in England and Wales. In Northern Ireland, look for information from your local health and social care trust.
Find contact details as follows:
- see GOV.uk/find-local-council to find local authorities in England and Wales
- search for health and social care trustsat NI Direct to find local health and social care trusts in Northern Ireland.
This may help you find care support or trusted volunteer support.
Other local organisations, community groups and care agencies are likely to have coronavirus guidance on their websites. This may help you find out how their service has been affected and if they're offering any specific support.
Government guidance for young carers has also been provided for young people under 25. It can help them feel informed and supported if they find themselves in a caring role during the pandemic.
If you feel consistently low or under stress, contact your GP for advice. You may have to leave a message or try several times, as there could be a lot of people in the call queue. It is worth persisting, as your surgery can arrange for your GP to call you back for a discussion.
You can find detailed carer support in our guide Caring and MND: support for you.
See our Financial support grants, including help for carers. Also, for our emergency grant during the coronavirus stay at home period.
If you have questions or just need someone to talk with, contact our MND Connect helpline for support.
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.
Government guidance for young carers has been provided for young people under 25. It can help them feel informed and supported if they find themselves in a caring role during the pandemic.
This section contains sensitive information about end of life decisions which may be helpful to you.
Please read when you feel ready.
With self-isolation it may be possible to avoid infection with COVID-19, the new strain of coronavirus. If infected, most people recover. Some develop complications, such as pneumonia, but still get better.
However, some people with complications die from the symptoms caused by COVID-19.
Many people in the UK are thinking ahead to ensure they and their loved ones feel as prepared as possible. Should there be a need for end of life decisions, being informed is important - especially for anyone vulnerable or at high risk of developing complications with COVID-19.
You may want to consider the following:
Putting your affairs in order: Even in self-isolation, much can be done online to make financial and legal arrangements. Try to use services that you know and trust, or that close friends or family have recommended. This is particularly important in the current situation, as there may be a rise in scams and attempts at fraud.
Making a Will: If you need to make a Will, contact a trusted solicitor by telephone or ask a carer to help with this if needed. There are ways to do this online too. There may be risks involved if you ‘do it yourself’ or use an unqualified legal service. You may wish to explore our free online Will writing service, in partnership with Beyond. We also offer free Wills packs with assistance through The National Free Wills Network, but the packs may take a little longer than usual to arrive at the moment.
Advance care planning: Do you want to record any preferences and wishes about your care and treatment, in case you become unable to make or communicate decisions for any reason? (For support with this, see heading below: Resources and services.)
Possible admission to hospital: Think about which choices feel right for you if you develop complications with COVID-19. For example, where do you want to receive support? If you go into hospital, it’s unlikely that visitors will be allowed access to quarantined wards. You may choose to stay at home with support from your immediate family. If you do stay at home:
- professional support and medication should still be available
- try to have early discussions with your GP or specialist palliative care team to find out what’s possible in your area
- have these conversations as soon as you can, due to the increasing pressure on NHS services at present (certainly at the first signs of COVID-19 symptoms – fever, unexpected and persistent cough, or unusual breathlessness).
This will help with planning for treatment at home, if that is your choice.
If you need urgent or emergency help for MND (rather than coronavirus), you may still need to think about choices, such as preferred place of care.
Difficult conversations about treatment: Be prepared for sensitive conversations with health professionals if you develop complications with COVID-19. What happens next is likely to be discussed with anyone who develops more severe symptoms. This may include:
- details about treatment and how it’s likely to progress
- whether certain treatment options are appropriate for you (some may not be helpful, depending on your individual needs and symptoms)
- whether visits are allowed, should you be admitted to a hospital (this may vary in each location, depending on the current situation)
- personal choices you may want to make yourself, such as options about resuscitation.
As difficult as it may feel, you have the right to be informed and to input your views. These conversations are an opportunity to understand the treatment and care options available.
If you would like to ask questions about future planning and decision making, contact your GP or another member of your care team. You may be referred for a discussion with your local specialist palliative care team or hospice, as they are trained to provide support and guidance in this area.
Be aware that you may need to wait for a response if you contact health and social care professionals at the moment. In the current pandemic, there is great pressure on NHS and clinical staff.
Resources and services
We have a range of information resources on future planning and end of life decision-making for people with MND. See our page on Planning ahead.
See also the drop-down options on Forms to help you communicate your needs and Planning ahead on our Information page.
Many national services can provide web chat or webcam counselling. Find the website of the organisation you need and check their contact details to see what’s available. See Useful organisations for a wide range of support, including links to services that can help with planning ahead and end of life decisions.
Current rules mean you are allowed a visit for compassionate reasons at end of life, from one family member or another person who is important to you. A second person may be allowed at the same time if social distancing can be guaranteed for safety of all throughout the visit.
Visits must be arranged, and permission sought from any staff in authority (such as nursing staff on a ward). Where possible, the person to be visited should also be asked if they want to be visited.
However, this type of visit should be applicable at home, or in a care home, hospice, hospital or other inpatient setting. Details can be found in the NHS Clinical Guide for supporting compassionate visiting arrangements for those receiving care at the end of life.
In each case personal protection equipment (PPE) may need to be arranged for the visitor. Hygiene measures must be taken, such as hand washing on arriving and leaving the visit.
The visitor must not visit if they currently have any COVID-19 symptoms.
If you are unable to visit someone, you can find suggestions about keeping in touch with someone who is critically ill, from the National Bereavement Alliance.
We could all be affected by the loss of someone we know or love during the pandemic – whether a family member, friend or colleague. This could be due to COVID-19 symptoms or a different cause, but many will face bereavement.
As with the NHS and other essential services, there is currently great pressure on bereavement support and services. However, if you feel persistently overwhelmed by grief following the death of a loved one, contact your GP for guidance. They may be able to refer you to support options, but you may need to wait for a response.
The way in which we all grieve will be directly affected by the isolation measures in place. For example, these may restrict who can visit a loved one in hospital if they reach end of life. It will also affect how many people can attend funerals and how these take place. The way families and friends connect and provide support to each other may also need to adapt during this time.
It may even impact on cultural needs or funeral rites specific to your religion. Contact your local faith leader if you have any concerns.
If you find yourself unable to attend a funeral, there may be other ways to remember and celebrate a loved one after their death. A memorial may be possible in the future, but in the meantime, think about simple telephone or video calls. There are also ways to stream a funeral service online for people who cannot attend. Memories can also be shared online, whether publicly on social media, through a private group page or through a memorial website. See the following links for further detail.
NAFD – National Association of Funeral Directors for specific updates on funeral arrangements, including during the pandemic.
Government advice on funerals – for updated guidance on funeral arrangements during the coronavirus pandemic.
Information about funerals for different faiths – for guidance on how coronavirus is impacting funerals across different faiths.
Streaming a funeral online – guidance on how to stream the service from the My Wishes website. For example, you can stream on facebook, so that people can watch a funeral service even if restrictions mean they cannot attend.
Record Me Now – this site can help you answer a range of questions as memories and video messages for your family. This can help bring comfort and understanding. The site also links to information about tributes and different faiths.
Resources and services
We have a range of information resources offering guidance and options for support, including help with bereavement, and managing grief and emotions.
Our helpline team, MND Connect, are also available to provide guidance, information and support, or they can just listen if you need to talk.
See our website section on Support and information for more options and details about our services, including MND Support Grants and local support from branches and groups, trained volunteers and regional staff.
Many national services can provide web chat or webcam counselling. Find the website of the organisation you need and check their contact details to see what’s available. See Useful organisations for a wide range of support, including bereavement services.