Given the uncertain times that we are in, we would like to remind you that we are here for you and will continue to be here for you. MND does not stop and neither will we.
While the situation around COVID-19 (coronavirus) is rapidly changing, we understand that up to date information is vital. 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.
For New Zealand Government updates, please visit : https://covid19.govt.nz/
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:
The symptoms of COVID-19 are:
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.
More information, including regular updates and advice for people with disabilities and their carers is available on the Ministry of Health website.
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.
The Ministry of Health has put together a website specifically for disabled people and their families. Click here to access it.
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. Even in a lockdown, one person from outside your household can provide support for you. 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.
The Ministry of Health website also contains information for community care providers including the appropriate use of PPE, available here
On Saturday 21st March, the New Zealand Government introduced a 4 tier Alert Level system, placing the country at Alert Level 2.
On Wednesday 25th March, New Zealand moved to Alert Level 4, with everyone required to remain at home and only essential services operating.
On Tuesday 28th April, New Zealand moved to Alert Level 3, where there were still significant restrictions on our day to day lives. The risk of COVID-19 is reduced, but still present.
People living with MND are in the high risk category, and are recommended to remain at home in their bubble during Alert Level 3.
To read our recommendations for people with MND and their families during Alert Level 3, please click here to read our blog article of 23rd April 2020.
On Wednesday 13th May at 11:59 PM, New Zealand moved to Alert Level 2.
Restrictions have eased, but the golden rule is to play it safe. Some restrictions still apply to ensure the safety of all New Zealanders.
To read our recommendations for people with MND and their families during Alert Level 2, please click here to read our blog article of 13th May 2020.
General information about alert levels and the New Zealand Government's response can be found here : https://covid19.govt.nz/
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
On Monday 23rd March, all MND New Zealand team members began working from home.
Under Alert Level Two, MND New Zealand team members based at National Office resumed working from the office on Tuesday 26th May. Following advice from the Disability Directorate, support team members continue to be available from home via email, text message, phone and video call.
We know this is a stressful and confusing time for everyone. We want to assure you that we are still here to support you via phone, text, email or video call. Contact details for support team members can be found here and for national office team, here.
The Fulton Hogan MND New Zealand Support Fund is accepting applications as usual. More information can be found here.
MND New Zealand is a registered charity, reliant on donations from the public.
Donate here to help enable MND New Zealand to continue our vital work, supporting people living with this devastating disease today, and those who are sadly yet to be diagnosed in the future.
We understand many of you will be interested in what is happening with this during the lockdown period. Click here for a statement from Dr. Emma Scotter, Head of the Motor Neuron Disease Research Lab.
It's understandable that you may have questions about what's happening with the New Zealand Motor Neuron Disease Registry. Click here to access an update from the registry.
Getting access to essential items can be challenging at the moment, particularly for vulnerable people. Here you will find some options to help with that. We'll be adding to it regularly, so please get in touch if there's something you'd like us to add.
Countdown has launched an initiative to help vulnerable members of the community. Priority booking for Countdown supermarket delivery has been set up to benefit people who have health issues that make it dangerous for them to go to the supermarket for essential supplies.
To register for this, you must first be registered as an online shopping customer with Countdown.
Visit shop.countdown.co.nz and either create an account or sign in if you already have one. Once this is done, complete this form to register for priority assistance : https://shop.countdown.co.nz/shop/content/priority-assistance
Student Volunteer Army is offering contactless delivery of groceries purchased at New World stores in many communities throughout New Zealand, using its network of vetted volunteers.
Place an order using your debit or credit card by visiting shop.sva.org.nz or by calling 0800 005 902.
A volunteer will collect your items and then deliver them to your door. Your card will be charged with the exact amount spent at the supermarket following delivery, plus a $6 delivery fee.
Deliverat.co.nz is a regularly updated website which lists food and beverage providers offering home delivery.