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 April 2021:

The situation around Coronavirus and the risks it poses is continually changing. We advise visiting the following NHS Inform website for real-time updates and advice. The Scottish Government also developed a leaflet with COVID-19 advice for people with neurological conditions. Download the leaflet here.

If you have MND: 

  • 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

According to guidance published by Association of British Neurologists, if you have MND you are at high risk of Coronavirus severely affecting you. People with MND are not being asked to shield at this time and should follow the same guidance as everyone else (please see 'how to stay safe' section below). However, if you are on the shielding list you should receive a shielding letter from the Chief Medical Officer which will provide up-to-date guidance and advice for you. Not everyone with MND will be on the shielding list. For more information please see the 'shielding advice' section below.


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 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 situation around Coronavirus and the risks it poses is changing rapidly. We advise visiting the following NHS Inform website for real-time updates and advice.

 

The Scottish Government has published information on the easying of restrictions in Scotland. For more information please visit the Scottish Government website. 

If you are going out you should still:

  • stay local
  • wear a face covering (see below if you cannot)
  • avoid crowded places
  • clean hands and surfaces regularly
  • stay 2m away from other people
  • self-isolate and book a test if you have Covid-19 symptoms (new continuous cough, fever or loss of, or change in, sense of smell or taste)

For full guidance on protecting yourself and others, please visit the Scottish Government’s website.

People with MND are not being asked to shield at this time and should follow the same guidance as everyone else. 


Hygiene

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

  • Wash your hands often with soap and water for at least 20 seconds or use an alcohol-based hand sanitiser.
  • Use an alcohol-based hand sanitiser that contains at least 60% alcohol if soap and water are not available.
  • Cover your cough or sneeze with a tissue, then throw the tissue in a bin. If you don’t have a tissue, use your sleeve.
  • Avoid touching your eyes, nose, and mouth with unwashed hands.


Face coverings

You can buy a face covering from MND Scotland. Some people with MND not be able to tolerate a face mask because of secretion or breathing difficulties. You can request an 'exemption badge' from Euan's Guide. If you are unable to wear a face covering it is important to maintain a 2 metre distance and be vigilant with hand washing or use of alcohol gel as often as you can. 

People with MND are no longer being asked to shield. If you are on the shielding list, you should follow the general advice for your local protection level.

Not everyone with MND is on the shielding list, however if you need additional support or feel you should be on the shielding list, please speak to your MND Nurse Specialist.

Find out more about shielding and the support available to those shielding on the Scottish Government website.

 

If you have MND or care for someone with MND, we understand you may be anxious to receive your vaccination as soon as possible, and 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.


When will I get the vaccine? 

The Scottish Government are rapidly putting in process the mass immunisation programme against COVID-19.

The Scottish population has been categorised into risk levels and many of you will have been offered a vaccine if your age has met the criteria. For those of you with a shielding letter, you are in the next priority grouping to be offered vaccination and this will be carried out by your GP surgery only.

Your GP surgery will contact you directly for your appointment. For those not on the shielding list and did not receive a shielding letter, you will be routinely called to one of the vaccination centres in age order.


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 socially distance, wear a mask if you can, hand hygiene and ask those around you to do the same. 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, download the Association of British Neurologists guidance, 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 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 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.

Our refocused 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.

 

Changes to our other services

We are working hard to develop and change the ways in which we provide support to you and your family, however we hope you understand at this time we have had to make changes to some of our services. 

All face-to-face services provided by MND Scotland have been postponed until further notice. We will continue to review this as the Scottish Government provides guidance and advice on when it is safe to resume these services. All services which do not rely on face-to-face contact will continue as normal.

  • 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 - we've launched a new video support group which 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 - our holiday accommodation is currently closed but will reopen on 26th April. 

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

We are very sorry for any inconvenience and hope you understand why we have made these decisions.

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 team has restarted recruitment. 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.