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.

The Coronavirus (COVID-19) pandemic will no doubt be causing you considerable concern, so we want to reassure you that MND Scotland remains here to support you through this uncertain time.

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.

In partnership with Judith Newton, MND Nurse Consultant, and the NHS MND teams, we have developed information to help minimise your risk of developing the Coronavirus and make you aware of the possible changes in the MND care and support you receive.

Updated 14th April 2020:

  • 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. We strongly recommend that you self-isolate for 12 weeks to ensure you avoid infection as much as possible. Social distancing reduces the risk of catching Coronavirus, but self-isolation is the most effective way of avoiding infection. Please see the 'How to stay safe' section for advice and information.


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, in particular when to contact the NHS 111 service. You should not attend your GP in person but should telephone from home. 

  

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.

We strongly recommend that you self-isolate for the next 12 weeks to ensure you avoid the risk of infection as much as possible. Social distancing reduces the risk of catching Coronavirus, but self-isolation is the most effective way of avoiding infection. 

This means:

Staying home at all times – you can ask a friend or neighbour to do your shopping for you and drop it at the front door without making any contact with you. If you don’t have anyone to ask, see 'Support from Scot Gov' section below.

Do not have any visitors to your home unless absolutely necessary. If you receive essential care from friends, family members or paid carers, these carers can continue to visit but it’s important they are following stringent hygiene and infection control measures.

You and members of your household should 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.

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.

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.

 

We understand that being isolated at home and being asked to consider such difficult issues as those mentioned above can be very stressful and upsetting. The NHS have 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. 

In the coming weeks and months we be in touch with you to check how you are getting on and provide a listening hear if you need it.

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 at least 31st May 2020. We will review this again at the end of May and 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 - all local support groups have been cancelled until the end of June. 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 - while not all equipment is currently available, you can still request a riser recliner chair, neck collar, over-bed and over-chair tables, walking aid, drinking aid, Neater Eater and Neater Powered Drinker.
  • 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.
  • Physiotherapy - this service has been postponed.
  • Holiday accommodation - all bookings from now until 30th June have been cancelled, with the option to rebook at a later date or a full refund will be issued.

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.

Shielding for people with MND

‘Shielding’ is the Government’s process for protecting and supporting the most vulnerable to Coronavirus in our society. 

If you have MND, and have breathing and swallowing difficulties, you should have received a shielding letter from the Scottish Government.

This letter will advise you to self-isolate (don’t leave the house) for 12 weeks, and give you information about accessing additional support, including assistance with the delivery of food and medications.

If you think you should be on the list, but haven't received a letter, contact your GP.

Get MND on the List

We are campaigning to get everyone with MND on the Scottish Government's shielding list. To find out how you can support us visit our campaign page
 

Support for those with MND not in the shielding group

The Scottish Government is putting support in place for those vulnerable people who have not been shielded. This will include everyone with MND. 

A national helpline has been 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.

Keep up to date with all event changes here: www.mndscotland.org.uk/events-updates

The MND-SMART team has taken the difficult decision to pause recruitment to the clinical trial. Alongside pausing recruitment, they will also be delaying the opening of new trial centres across the UK. For more information 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.

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. 

We will continue to monitor and provide updates and hope you all stay safe and well. Don’t forget we are still here if you need support, information or advice, or if you just want to talk.  Please do not hesitate to get in touch with us by calling us on 0141 332 3903 or emailing info@mndscotland.org.uk.