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Coronavirus Updates

We will be posting the latest updates on any changes to our services and events here.

Posted : 13/03/2020

Updated 31 March 2020: 

The situation around Coronavirus (COVID-19) and the risks it poses is changing rapidly.  We advise visiting the following NHS Inform website for real-time updates and advice.

MND and Coronavirus

Clinical information provided by: Judith Newton, MND Nurse Consultant and NHS MND teams.

We are aware that many people with MND and their families are concerned in light of the current Coronavirus pandemic. People with MND are at increased risk from infection with Coronavirus. We strongly recommend that you self-isolate for the foreseeable future to ensure you avoid infection as much as possible.

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 serviceYou should not attend your GP in person but should telephone from home. 


To help prevent the spread of Coronavirus, the advice is: 

  • 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.
  • If you need to have visitors coming into your home, ask them to wash their hands at point of entry and on leaving. 


If you are using 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

Any medications that you are presently taking should be unchanged unless otherwise advised by your doctor.

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. 


If you care for someone with MND:

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.

  1. 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.
  2. 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.
  3. 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 carer, health and social care workers etc 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.


Additional resources:

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

 

MND Scotland 

Following the confirmation of cases of Coronavirus in Scotland, and having considered the advice of health professionals and the current government guidance, we have made some difficult decisions.

Our priority is to minimise the risk as much as possible for people with MND, their carers, supporters, volunteers and our staff and as such we are therefore taking the below steps.

We are very sorry for any inconvenience and hope you understand why we have made these decisions. We will continue to keep this page up to date as NHS and government guidance is updated. 

MND Scotland Office

MND Scotland’s office has now been closed. We are all working from home, so if you require any information or support, please don’t hesitate to get in touch on 0141 332 3903 or email us at info@mndscotland.org.uk

MND Scotland Services

As a precautionary measure, we have reached the difficult decision to postpone all face-to-face services, effective immediately, until at least 30th April.

Alternative ways of delivering these services, where possible, are being developed. All services which do not rely on face-to-face contact will continue as normal.

Please see below how, or if, services are changing:

Counselling

We are postponing any face-to-face counselling but will continue to provide and offer telephone counselling.

Advocacy

We will not be able to do home visits at this time. We will still support you through phone calls, email and skype. 

Welfare and Benefits

We will not be able to do home visits at this time. We will still provide this service through phone calls, email and skype.

Support groups

All support groups in April and May have now been cancelled. Further groups may be affected and we will continue to update you here. We are also trialing alternative digital solutions.

Complementary therapy

This service has been postponed.

Physiotherapy

This service has been postponed.

Equipment

This service has been postponed.

Communication aids

We will 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.

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. Those with bookings after this date may be affected and we will keep you updated with any changes. We also have a Time Out grant which you may be able to apply for, if you wish to make other holiday arrangements. Find out more here.

Grants

This service is continuing as normal.

Information and education

Our information service is continuing as normal. Any face-to-face educations sessions from now until 30th April have been cancelled. 

Fundraising events

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

MND Clinical Trial

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

 

We will continue to monitor updates and consider how they may affect people with MND, volunteers and staff.