Coronavirus updates

Our priority is to minimise the risk of contracting Coronavirus 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 7th January 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.

Guidance on new stay at home regulations came into effect on 5th January 2021. To minimise the risk of spreading the virus, the Scottish Government states you must stay at home as much as possible. By law, in a level 4 area, you can only leave your home (or garden) for an essential purpose.

For more information on what is deemed ‘essential’ and the exemptions allowed, please visit the Scottish Government website

If you are going out for essential purposes you should still:

  • wear a face covering (see below if you cannot)
  • avoid crowded place
  • 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. 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.


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. 

If you have MND you may have received a shielding letter from the Chief Medical Officer which will provide up-to-date guidance and advice for you. If you have MND and are not on the shielding list but think you should be, please contact your MND Clinical Nurse Specialist.

Not everyone with MND is on the shielding list, however additional support from the Scottish Government is available to everyone with MND (see ‘Support from Scot Gov’ section below).

Advice on shielding taken from the Scottish Government website on 6th January 2021:

“Contact with others

The Chief Medical Officer wrote to everyone on the shielding list during the week beginning 4 January to set out advice.  We are not advising you stop going outside, which we know is good for mental and physical health.  You should stay home as much as possible but you can still go out for exercise and essential shopping or medicines.

You should minimise contact with people outside your own household if you can.

You should not take public transport.

Shopping

If you, your child or someone you care for is on the shielding list, you can sign up for priority access to supermarket online delivery slots.

Once you register you will get priority access to see online delivery slots. It may take a few weeks for you to get registered for the service.  Supermarkets have also increased the number of ways to shop and have shopping delivered which are available now.

If you do visit shops or supermarkets strictly follow the guidelines when shopping and limit the number of times you go to a shop. Shop at quieter times.

If you cannot work from home

You should continue to work from home if you can.

If you cannot work from home, if you live or work in an area in lockdown, you should not go to work.  The letter you will receive from the Chief Medical Officer acts as a fit note for as long as lockdown restrictions are in place. 

This letter is called a shielding notification and can be shown to your employer without the need for a GP fit note.

School/ formal childcare

Children on the shielding list should not attend in person.”

If you have MND or care for someone with MND, we understand you may be anxious to receive your vaccination as soon as possible. The order in which people will be offered the vaccine is based on advice from the Joint Committee on Vaccination and Immunisation (JCVI).

When someone with MND will receive the vaccine will depend mainly on:

  • The person's age
  • Whether the person is registered as clinically extremely vulnerable (those who are on the shielding list)
  • Whether the person is living in a care home

JCVI advises the order of priority for the coronavirus vaccination is:

  • residents in a care home for older adults and their carers
  • all those 80 years of age and over and frontline health and social care workers
  • all those 75 years of age and over
  • all those 70 years of age and over and clinically extremely vulnerable individuals
  • all those 65 years of age and over
  • all individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality
  • all those 60 years of age and over
  • all those 55 years of age and over
  • all those 50 years of age and over

Vaccination for other groups will begin as soon as the supply of vaccines becomes available.

Your local NHS health board will be in touch with you to arrange your vaccination appointment when you are eligible. 

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 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 - this service has been postponed.
  • Holiday accommodation - our holiday accommodation is currently closed. 

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.

The Scottish Government has put support in place for vulnerable people, which includes everyone with MND, regardless of whether you are on the shielding list or not. Find out more about all the support available here

A national helpline was also set-up, which aims to provide essential assistance to those who don’t have a network of support but who are at high risk of contracting Coronavirus.

Those calling the helpline will be connected to their local authority who will support them to access help with: essential food and medication, emotional support, links to local social work services and contacts for local volunteer groups.

The number for the helpline is 0800 111 4000. It will be open from 9am to 5pm.

For the most up-to-date information please visit the Scottish Government's website

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.