COVID-19 and MND

This page has been developed for updates and resources related to the COVID-19 pandemic.

New Zealand has moved to the new government protection framework (traffic light system).

We advise visiting the following Ministry of Health website for the latest updates and advice specifically for disabled people and their family and whanau.

If you are living with or caring for someone with MND, please discuss any specific concerns you have with your health and social care team. They will be able to give you advice and information which takes into account your specific circumstances.

MND New Zealand’s COVID-19 Protection Framework

MND New Zealand holds the safety and wellbeing of our community at the centre of all we do. We are conscious that our community is more vulnerable to the effects of COVID-19, and we care about the safety of our staff.

We have developed guidelines for our support service at all stages of the COVID-19 Protection Framework which you can find here.

MND and COVID-19 Vaccinations

We have developed a frequently asked questions page in regards to the COVID-19 Vaccine for those living with MND which you can find here.

What is COVID-19?

COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a type of coronavirus.

There are simple steps you can take to protect you and your family/whānau:

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 symptoms of COVID-19 are:

There are new criteria for checking if a person has COVID-19. As long as you have symptoms, you should be assessed by your health professional:

Fever –this is when you are really hot and have a temperature of 38 degrees or more
A cough that is new or one that has been getting worse over a few days.
Shortness of breath or change in your usual breathing pattern for people with MND
Sore throat
Sneezing and runny nose
Temporary loss of smell and/ or taste

These symptoms do not necessarily mean you have COVID-19. The symptoms are similar to other illnesses that are much more common, such as cold and flu.

If you or anyone in your household have these symptoms, please telephone Healthline (for free) on 0800 358 5453 or your doctor immediately.

If you are struggling to breathe please get medical help urgently by calling 111.

MND and COVID-19

General advice that you and your family should be following.

People living with MND often have a harder time with swallowing, breathing, and coughing due to muscle weakness and are therefore at risk of developing serious complications if they contract COVID-19, regardless of age. Every precaution should therefore be taken to prevent you and the people in your household from becoming infected with COVID-19.

Continue to take usual medications in the same manner as you normally would unless you are advised by your Doctor
Aim to have at least one month's supply of all medications you take on hand. Pharmacists are currently limited to providing one month’s supply of medication, however exceptions can be made for those either living rurally or for whom accessing regular refills is difficult
Stay home except to get medical care that cannot be provided by telehealth. MND clinical appointments are being conducted via phone and video conferencing at the moment
Clean and disinfect frequently touched surfaces and objects, such as doorknobs
If you’re concerned about what will happen if a paid caregiver becomes sick, talk to your service provider to find out what will happen in this instance
If you have specific questions about your personal situation, please contact your support team member or health care professional
If you are using non-invasive ventilation (NIV), review the information provided by your respiratory team and contact them to discuss any concerns

The Ministry of Health has put together a website specifically for disabled people and their families. Click here to access it.

Information for Caregivers

It is important that as a carer you have a plan so that someone else is able to provide care for your loved one if you fall ill, or need to self-isolate.

Think about who could step in should you need help. It is essential that this person is also taking the same precautions to avoid exposure to COVID-19 as you yourself are taking.
Write down detailed instructions of how you do things to provide this care so that the person with MND feels confident that their care will continue in the same way and others feel confident to perform these cares.
List the names and doses of medications.
List the names and contact details for healthcare providers – GP, pharmacy, hospice nurse, NIV contact person, SLT, OT, support team member, NASC coordinator, Talklink etc.
Keep your environment clean using disinfectants. Ask all those entering your house to wash their hands using sanitiser before they enter.
Use technology to keep in contact with family, friends and your community. Remember that your MND support team member is available for support through phone calls, texts, email, video calls etc if visits are not possible.

The Ministry of Health website also contains information for community care providers including the appropriate use of PPE, available here.

Getting disability support during COVID-19

For information about getting disability support during COVID-19 see Getting disability support.

Temporary changes introduced by the Ministry of Social Development (MSD)

MSD has made some temporary changes to documents required as part of the COVID-19 response. An overview of the changes is available in our blog article here.

We are still here

MND doesn't stop, so neither will we. If you need support or have a general enquiry, please get in touch today (09) 624 2148.