When you are living with MND, the unexpected can happen.
Due to the nature of MND, you may need urgent care outside of clinic hours. This may involve an ambulance and paramedic care, or presenting to an Emergency Department (ED).
Going to hospital can be stressful for people living with MND and their carers. You may feel unsafe and worry about getting the right care.
Planning ahead can help reduce stress and ensure you get the care you need quickly. Keep a bag packed with essentials and medicines in a place that is easy to access. You can also keep a list of important things in a visible place, such as on the fridge door.
Find out your options for out-of-hours care or urgent help in an emergency by speaking with your:
- GP, neurologist or MND clinic
- your MND Association
- local hospital or hospice
- palliative care team
- NDIS or My Aged Care service providers.
Be sure to keep note of any addresses, opening hours, and phone numbers and including after- hours numbers and mobiles. Check regularly with your contacts to make sure the numbers are up to date.
Some questions to ask include:
- How do I access urgent or emergency care outside of normal hours?
- Who can assist if my main carer is unavailable?
- How can I find support if my carer needs urgent respite?
Tips to help you prepare:
- Keep your essential personal and medical information, including copies of all documents, in a safe, easy to access place, such as:
- with your medicines
- by the front door
- on the fridge door
- as digital copies on your phone (ask your State MND Association to help set this up)
- You might also like to keep your documents in a plastic sleeve to protect them, or in a pre-packed hospital bag.
- Important documents might include:
- contact details for out-of-hours or emergency help
- contact details for family members or others close to you in case your carer is away or unwell
- list of medicines
- a completed My Care Needs form and MND Hospital Bedside Alert
- a copy of the Paramedics MND Tool
- advance care plans or an Advance Care Directive
- a printed copy of this web page.
- Store information online in a MyHealth record and make sure your carer or family members are listed as a nominated representative. Learn more at myhealthrecord.gov.au
- A Carer’s Emergency Card can be carried by a carer to alert someone to your care, in case they are away from home and unable to support you.
- Practice using any emergency communication tools (AAC device, SMS Relay, NRS Chat etc.) so that you and your carer are familiar with the process.
Contact list
Keep any contact numbers for urgent or out-of-hours support in an easy to find place.
Dial Triple Zero (000)
If you need an ambulance, you or your carer should dial 000. You will be asked if you need Police, Fire or Ambulance. Your call will be directed to the service you asked for.
Options if your speech is affected:
- Dial 000 and use clear, short phrases (e.g. “Speech difficulty – MND – need ambulance”).
- Use a text-to-speech app or AAC device to produce a clear message.
- Using SMS Relay, send a text message to 0423 677 767 with details “000 AMBULANCE at [address].”
- Use NRS Chat (via the NRS website or app) if internet access and typing are possible.
- Using Voice Relay, call 1800 555 727, press 1, and ask for Triple Zero (000).
- TTY (106 Service) if you have access to a landline-based textphone. On your TTY machine, dial 106, a toll-free number. When asked, type AAA for ambulance. Download full instructions here.
If you are unable to use voice or text-to-speech independently, a carer or support person can make the call and communicate on your behalf.
My Care Needs
A 2-page interactive and printable pdf form with space to record your specific needs with MND. The completed form can be given to paramedics or emergency staff on arrival.
MND Hospital Bedside Alert
This 1-page interactive and printable A4 lets medical staff know about your high priority care needs with MND. It can be posted on the wall above your bed, or at the bedside.
Paramedics MND tool
A quick reference tool for paramedics on providing optimal care and support for people with MND. Endorsed by the Australasian College of Paramedicine.
On admission, you or your carer can also ask whether the hospital has any additional support available. Depending on the hospital, you might ask for one of the following:
- a disability support person
- a social worker
- a palliative registrar
- a chaplain.
Contact your neurologist, respiratory physician or MND clinic nurse. They may be able to meet you in ED, or call and advise the treating doctor.