Coronavirus updates

Our priority is to minimise the risk of contracting Coronavirus (COVID-19) for people with MND, their carers, supporters, volunteers and our staff, as well as continuing to provide support to you and your family.

We know the Coronavirus pandemic is causing huge worry and stress for many people with MND, and their families and carers.

We’re here for you. We have all the information you need about COVID-19 below, from how to minimise your risk of catching Coronavirus, to possible changes to your MND care and support.

We’ve put it together with MND Nurse Consultant Judith Newton and the NHS MND teams, and are updating it every time government advice changes.

If you need any more support, information or advice – or if you just want to talk – don’t hesitate to call us on 0141 332 3903 or email info@mndscotland.org.uk.

Updated 9 August 2021:

The situation around Coronavirus and the risks it poses is continually changing, so we always advise visiting the following NHS Inform website for real-time updates and advice. 

If you have MND you are at high risk of COVID-19 severely affecting you, therefore people with MND are on the 'highest risk list', previously shown as the 'shielding' list. The ‘shielding list’ and the ‘highest risk list’ are the same. The words ‘highest risk’ rather than ‘shielding’ is now being used because it's highly unlikely you'll be asked to shield again.

If you have MND, please: 

  • do not stop taking any medication unless advised to do so
  • do not stop using your NIV (non-invasive ventilation) if you are using this

People on the ‘highest risk list’ should strictly follow protective measures and hygiene measures. Read more on NHS Inform website.


If you are developing symptoms of Coronavirus

If you develop symptoms suggestive of Coronavirus (fever, persistent cough and/or shortness of breath) then please follow the advice on the NHS Inform website.


Non-invasive ventilation

If you are using NIV (non-invasive ventilation): 

  • Do not stop using this equipment, if your symptoms worsen contact the home ventilation team or your respiratory nurse
  • Make sure your immediate area around you is cleaned at least twice a day with hot soapy water including washing down of door handles
  • Stop and ask any carers coming into your home to remove outer clothing and to wash their hands with soap and hot water and to also do this on leaving your home

If you have specific questions regarding your care, please contact your local MND Nurse  Specialist who will be able to give you advice and information which takes into account your individual circumstances.  They will be aware of the plans and procedures for your health board area and will be able to advise if you need to take any other additional precautions in keeping with your health board.

The Scottish Government has published information on the easying of restrictions in Scotland and what we need to do to stay safe:

  • get the vaccine when you are offered it
  • wear a face covering, clean hands and surfaces regularly
  • avoid crowded places and keep your distance from other people where possible
  • meet outside if you can, and open windows when indoors
  • if you have symptoms get a test and stay at home
  • take regular tests if you don’t have symptoms to reduce the risk of spreading the virus
  • use the Protect Scotland and Check-in Scotland apps

For more information please visit the Scottish Government website. 

Hygiene

You and members of your household should also continue to follow the guidance on hygiene.

DO:

  • wash your hands more often with soap and water for at least 20 seconds, or use a hand sanitiser
  • wear a face covering if you use public transport, use school transport (children aged 5 and over), visit a care home or hospital, or go to a shop, library, museum, bank or church
  • work from home if you can – your employer should support you to do this
  • use phone or online services to contact your GP or other essential services
  • keep rooms well ventilated when meeting other households indoors, if possible consider opening windows or a door

DON'T:

  • do not meet anyone with coronavirus symptoms (new continuous cough, fever or loss of, or change in, sense of smell or taste (anosmia))
  • do not touch your eyes, nose or mouth with unwashed hands

Read more about protective measures here


Face coverings

Although vaccination is our best protection against COVID-19, no vaccine is 100 percent effective and we know that even those vaccinated can get the virus. Clinical and public health advice is clear that face coverings continue to be an effective way of stopping transmission.

You can buy a branded face covering from MND Scotland, a great way to protect yourself and others, while also raising awareness. Some people with MND may not be able to tolerate a face mask because of secretion or breathing difficulties. For more information on exemption cards visit exempt.scot.

 

If you have MND you are at high risk of COVID-19 severely affecting you, therefore people with MND are on the 'highest risk list', previously shown as the 'shielding' list.The ‘shielding list’ and the ‘highest risk list’ are the same. The words ‘highest risk’ rather than ‘shielding’ is now being used because it's highly unlikely you'll be asked to shield again.

People on the ‘highest risk list’ should strictly follow protective measures and hygiene measures. Read more on NHS Inform website.

We understand that some people with MND and those around them may feel anxious about the easing of restrictions – particularly those who cannot have the vaccine or are more vulnerable to the impacts of the virus. Even those who have been double vaccinated can still catch, transmit and fall ill from the virus. The Scottish Government is strongly encouraging everyone to take up the offer of a vaccine in order to protect others at high risk as well as themselves.

If you have MND or care for someone with MND, you may have questions about taking the vaccine: 

Can people with MND take the vaccine?

All COVID-19 vaccines are safe for people with MND, even if you are taking Riluzole. The Association of British Neurologists recommends you take up whichever vaccination you are offered without delay regardless of your age, state of health or medication that you’re receiving, unless you have a specific reason such as severe allergy. If you are pregnant or breast feeding, please speak to your MND Clinical Nurse Specialist for more information. 


Can I get the vaccine if I am on a drug trial?

If you are participating in MND-SMART, or are waiting to come onto the trial, you can receive the vaccine.


Will I be immune to COVID-19 when I've had the vaccine?

The vaccine will help minimise the serious effects that COVID-19 can have on you, but please remember that if you have been vaccinated or anyone else in your family has been, this does not mean you are immune to the virus or spreading the virus. Therefore it is vitally important that you continue to follow guidance on how to stay safe. Please also make sure if you have carers coming into your home that they follow the rules.

For more information on the vaccine please visit NHS inform, or speak to your MND Clinical Nurse Specialist. 

 

It is important that you, as someone who is providing care for a person with MND, have a contingency plan so that the care that you deliver can continue should you fall ill or be required to self-isolate. Here are some steps that you should take now. 

Think about who could step in should you need help. Ask family members, friends or neighbours if they could provide back-up support should you become ill or need to self-isolate. 

Write down detailed instructions around the care that you provide:

  • Provide contact information for your doctors, clinic, pharmacy etc.
  • List the names and doses of medications. Have enough medication for one or two weeks in case you cannot get to the pharmacy to refill prescriptions.
  • Ensure all your medications have refills available, so you do not have to leave the house if you become ill.
  • Keep your grocery essentials up to date to ensure you and the person that you may be caring for have the necessary supplies to prepare healthy and nutrient rich meals.
  • Keep your environment clean using disinfectants and ask all those who enter your house to wash their hands to use hand sanitizer when they enter.
  • Use technology, mobile phones, laptops, ipads etc to keep in contact. Use it to stay connected to friends, family and your community. 

If you have paid carers, health and social care workers, or other family/friend carers (unpaid) coming into the home of the person you care for: 

  • Ensure that they are following stringent hygiene and infection control measures and insist that these are followed.
  • If your paid carers are employed by an agency, then speak to the agency about their contingency plans and how they plan to respond if any of their staff become affected. 

If you are worried about what would happen to the person with MND should you or paid carers become ill, then contact your local MND Nurse Specialist, who will be able to give you advice and information which takes into account your individual circumstances. They will be aware of the plans and procedures for your health board area and will be able to advise if you need to take any other additional precautions in keeping with your health board.

 

You may be feeling stressed or overwhelmed because of the impact of the Coronavirus pandemic and it is important to take care of your mental health and wellbeing. You may find some of these guided meditation, stress relief and mindfulness videos helpful.

The NHS has produced a helpful resource on coping with staying at home. Please take a few minutes to read the advice it offers

In accordance with Scottish Government advice, MND Scotland staff are working from home, but we are still here if you need support, or if you simply want to talk. Please do not hesitate to get in touch with the team at MND Scotland by emailing info@mndscotland.org.uk or you can call 0141 332 3903.

The Coronavirus pandemic has placed restrictions on many of our services. We understand how worrying the current situation is and the challenges it presents for people living with MND and Carers alike.

While things are now moving in a more positive direction with the role out of the vaccines, the advice that we have received from clinical specialists in the area of MND and from the Scottish Government guidance, is that we have not yet reached the stage where we can reinstate our face to face services. Therefore we will continue offering remote services only at this time. We appreciate this will be disappointing news for many, especially those who were hoping to see the return of the complementary therapy service.

As always, we will continue to regularly review the guidelines and clinical advice, and will reinstate our services at the earliest opportunity.  

Service changes: 

  • Counselling - we have postponed any face-to-face counselling but continue to provide and offer telephone counselling.
  • Welfare and Benefits - we are not able to do home visits at this time however we are still providing this service through phone calls, email and skype.
  • Support groups - our weekly video support group means you can join from the comfort of your own home and stay connected to us and others affected by MND. 
  • Equipment loan - this service is running as normal.
  • Communication aids - we can still send out equipment where possible, however we are not able to go to your home for installation or repairs but will provide support via phone calls, email and skype.
  • Complementary therapy - this service has been postponed. However, we realise that relaxation and stress relief remain critical to maintain good physical and mental health. Therefore, you may find some of these guided meditation, stress relief and mindfulness videos helpful.
  • Physiotherapy - we are now offering remote physiotherapy sessions.
  • Holiday accommodation - currently open for bookings. Book here.

Although we are not currently offering face to face services, our new MND Scotland Connected services are here to make sure you and your family are not alone at this difficult time, and to ease some of the financial burden and stress you may be experiencing as a result of COVID-19 disruptions.

Your connected services are here to ensure you stay connected, find support and feel in control. Services include: 

  • One-to-one phone support 
  • Video Support Groups
  • Emergency financial grants 
  • Advocacy (fighting your corner)
  • Making your wishes known

To find out more visit MND Scotland Connected.

In accordance with Government advice, MND Scotland’s office is now closed. Our staff are working from home during this time, so you can still get in touch with us by calling 0141 332 3903 or emailing info@mndscotland.org.uk

All MND Scotland organised events will be reviewed 6 weeks before the event date, in line with government guidance at that time. For events that are organised by external parties we will take their guidance, as well as guidance from the government.

Fundraising Events

All MND Scotland events which involve people gathering in one place have been postponed until further notice. To find out how you can get involved in our virtual events visit our fundraising page.

The MND-SMART clinicial drug trial is looking for people with MND across Scotland to take part. For more information about your area, please visit MND-SMART.org

The Coronavirus situation is developing rapidly and we strongly recommend you check the following sources of information regularly. These sources are frequently updated.