Hello everyone, and welcome to another intensivecareathome.com YouTube live. It’s Sunday morning here in Melbourne, 10:30 a.m., and wherever you’re joining from, whether it’s Sydney, Brisbane, Adelaide, Perth, Darwin or overseas, thank you for being here.

I know we always have some viewers from the US, Canada, India, UK and other countries as well. So, welcome to the show. I also want to welcome any viewers on replay, because I know quite a lot of you are watching this on replay.

Today we are covering in this YouTube live MND (Motor Neurone Disease), ALS (Amyotrophic Lateral Sclerosis) and home ventilation planning before the crisis. We also have a questions and answers section at the end. We’ll be going for roughly 45 minutes, maybe an hour, depending on how many questions you have and depending on how quick I can get through today’s presentation.

My name is Patrik Hutzel from intensivecareathome.com. Here at Intensive Care at Home, we provide tailor-made solutions at home for long-term ventilated adults and children with tracheostomies with 24-hour ICU nurses at home. Tailor-made solutions for long-term ventilated adults and children on BiPAP (Bilevel Positive Airway Pressure), CPAP (Continuous Positive Airway Pressure), without tracheostomy, with 24-hour ICU nurses at home. We provide tailor-made solutions 24 hours a day with critical care nurses, ICU nurses, for tracheostomy clients, adults and children, without ventilation. And for MND in particular, all of those three categories are highly relevant. We’re also providing ventilation and tracheostomy weaning at home when medically appropriate. We provide cough assist management at home, which is also highly relevant for MND and ALS. We provide home TPN (Total Parenteral Nutrition), home IV (intravenous) fluids, IV antibiotics, IV potassium, magnesium and other electrolyte infusions at home, which goes hand in hand with central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line and port management at home.

We also provide SPC (Suprapubic Catheter) and IDC (Indwelling Catheter) management at home, PEG (Percutaneous Endoscopic Gastrostomy) and PEJ (Percutaneous Endoscopic Jejunostomy) tube management, as well as nasogastric tube and nasojejunostomy tube management at home. We provide palliative care services at home, and we also provide Level 2 and Level 3 NDIS (National Disability Insurance Scheme) support coordination, as well as TAC (Transport Accident Commission) and WorkSafe case management.

Now, if this is your first time watching my videos, welcome. And if you’re coming back, fantastic. Thank you so much and nice to see you again. Today’s topic is a really important one. It’s one I’m very passionate about: MND and ALS and home ventilation, and how to plan before the crisis, because with MND and ALS, unfortunately, the crisis will come if you don’t plan. And I want to help you to get ahead with it.

Now, before we go any further, you might also be wondering what makes me qualified to talk about topics like MND, ALS, home ventilation, planning before the crisis, and what makes me qualified to talk about Intensive Care at Home in the first place. I’ve worked in critical care nursing for over 25 years in three different countries, where I worked as a nurse manager for over 5 years in intensive care, and I’ve worked in ICU overall for a long time. I was part of a pioneering service in Germany in the early 2000s, where we were the first ones setting up Intensive Care at Home services, and a big shout out here to Brambring and Jaschke, Jörg and Kristoff in Munich. They were really pioneers in Germany when I joined them, and then I brought the concept to Australia in 2012, and that’s how long we’ve been operating here in Australia with Intensive Care at Home. So the concept has been proven beyond the shadow of a doubt, not only in Germany but also in Australia. We’re coming close to our 15th year of operation now.

I also run a consulting and advocacy service for families in intensive care, and you can find more information at intensivecarehotline.com. That’s for consulting and advocacy for families in intensive care.

Before we go any further, if your loved one with MND is on BiPAP more and more, doesn’t have a tracheostomy, or is about to have a tracheostomy, or is in hospital in ICU right now and you want them home safely, call us. Contact us at intensivecareathome.com. Call us on one of the numbers on the top of our website, or book a call with me through the schedule appointment button, or simply send me an email to [email protected].

And I know some of you are watching this in the US, in the UK, in Canada, in India. As much as Intensive Care at Home right now is mainly operating all around Australia, in all states and territories, in all metropolitan areas, as well as in all regional and remote areas, we have inquiries from the US, from Canada, from the UK, from India. Please reach out to us as well. We have international phone numbers on our website as well. We can help you there too.

So why this topic, and why today? Like I said, I’ve been working in critical care nursing for over 25 years. I started in intensive care in Germany, then worked in the UK in ICU, worked in Australia in ICU, and started Intensive Care at Home in Australia in 2012. Even when I worked with Intensive Care at Home services in Germany in the early 2000s, we had MND clients at home with tracheostomy, ventilated, instead of them being a long-term stay in intensive care and withering away there. We were providing them quality of life at home.

So I’ve been looking after, or involved in looking after, MND clients with tracheostomies and ventilators on and off for the last 25 years. It is normal practice in Germany to offer tracheostomies to MND clients if they choose to. And then I came to Australia and worked in ICUs here, and I was very, very, very shocked at how rarely people with MND were even told this was an option. Now, this is also an issue of not having follow-on services in the community. So part of ICUs not offering tracheostomies for MND clients is not having services like Intensive Care at Home in the community. So we filled a critical need here with Intensive Care at Home.

But here’s the question we hear from families almost every week. I’ve changed all names here. I’m not going to give away any real names. I’m changing all names for privacy. But it goes like this: “My husband was diagnosed with MND about 18 months ago. He’s on BiPAP at night. Now he’s got a PEG tube, and now more and more during the day. Nobody has really talked to us about what happens next. Should we be thinking about a tracheostomy? What if he ends up in ICU? Can he stay at home for longer with a BiPAP? Does he need a tracheostomy?”

These questions come to us all the time, hard and fast. And if that sounds like your family, you are in the right place, because here’s what we will cover today. Number one, how MND affects breathing and the early warning signs. Number two, non-invasive ventilation, BiPAP, and a quick word on CPAP. Number three, tracheostomy ventilation, the option many, many families aren’t even told about, and the honest pros and cons. Number four, why anyone who’s ventilator dependent needs 24/7 critical care registered nurses at home, and the lessons of Noah Johnston. Number five, NDIS funding for 24/7 critical care registered nurses for MND clients. Number six, medical records and evidence, and the planning checklist. And number seven, your questions, live or the ones that you’ve already sent in.

And tell me in the chat where you’re watching from and whether you are a family member, a person living with MND, or a health professional. Put your questions in at any time. I’ll get to as many as I can.

So let’s now look at how MND affects breathing. Let’s start with the basics. MND affects the motor neurons, the nerve cells that tell your muscles what to do. And that includes your breathing muscles: your diaphragm, the big muscle under your lungs, the muscles between your ribs, and also the muscles in your throat and mouth that help you swallow and cough. When those muscles get weaker, three things happen. Number one, you can’t take as deep a breath, so carbon dioxide (CO2) builds up, especially at night when you’re lying flat and asleep. Number two, your cough gets weaker, so secretions sit in your chest and chest infections become more likely. Number three, if the bulbar muscles are affected, the throat and mouth, swallowing isn’t safe anymore, and saliva or food can go down the wrong way.

Now, here’s the thing. This usually creeps up. It’s not always dramatic. So what are the warning signs? Morning headaches. Waking up groggy or confused. Poor sleep. Waking up a lot. Needing to sleep propped up on pillows. Short of breath lying flat or when talking. Being more and more tired during the day. A weaker cough. More chest infections. Coughing or choking with food or drinks.

If you’re seeing those signs, please don’t sit on them. Talk to the neurologist and the respiratory physician.

And let me show you our evidence-based Mechanical Home Ventilation Guidelines. They are on our website, and they’re based on over 25 years of Intensive Care at Home nursing in Germany and based on nearly 15 years of Intensive Care at Home nursing in Australia. And they list neuromuscular diseases, including amyotrophic lateral sclerosis, MND, as one of the main conditions for respiratory failure and home ventilation.

The guidelines also give you some numbers to ask about. Vital capacity should be checked every 3 to 12 months. When vital capacity drops below 70%, overnight studies and CO2 measurement are recommended. And when peak cough flow, how strong your cough is, drops below 270 liters a minute, it’s time for a secretion management plan, often including a cough assist machine. Ask for these numbers. Write them down. They are your early warning system.

Next, non-invasive ventilation, BiPAP or CPAP.

So let’s talk about non-invasive ventilation, also known as NIV. Non-invasive simply means breathing support through a mask, not through a tube in the windpipe. In MND, that’s almost always bilevel positive airway pressure. When you breathe in, the machine pushes a higher pressure to help your weak muscles to get the air. When you breathe out, it drops to a lower pressure.

Now, I want to clear something up here, because I get asked about this a lot. CPAP is not the same thing. CPAP gives one continuous pressure. It keeps the airway open, which is great for obstructive sleep apnea, but it doesn’t do the work of weak breathing muscles. So for MND, it’s usually BiPAP. Some people might also have sleep apnea, and that’s a conversation for your respiratory physician.

Does BiPAP work in MND? Absolutely, yes. There’s good evidence for that. A landmark randomized trial published in The Lancet Neurology back in 2006 found that NIV improved survival and quality of life in people with MND who didn’t have severe bulbar weakness. International guidelines like the UK NICE (National Institute for Health and Care Excellence) guideline recommend it be discussed and offered.

Most people start at night, then over months they start using it during the day, after meals, when tired, then longer and longer. And that’s where we need to have a really honest conversation. Once someone’s on BiPAP for 16, 18, 20 hours a day, they are ventilator dependent. They might not be able to take the mask off themselves. If the mask slips, if the machine alarms, if the power goes out, if they get a mucus plug, they can’t fix it. They might not even be able to call out for help. And our evidence-based mechanical home ventilation guidelines are very clear. More than 16 hours a day of ventilation, you need a second identical ventilator and an external battery pack. Every non-invasive ventilation client needs at least one spare mask. People with a weak cough need secretion management, often a cough assist, and humidification makes a real difference to comfort.

Let me talk about secretions and the cough assist. Let me spend a minute on that, because this is where I see a lot of people with MND get into trouble, and it’s often underestimated. When your cough is weak, you can’t clear the phlegm from your chest. And if you’re on a mask, there’s no direct access to the airway. So the secretions have to be brought up into the mouth and then cleared. That’s where techniques like breath stacking, assisted coughing and a mechanical cough assist machine come in. A cough assist gives a deep breath in and then quickly reverses to pull air out, like an artificial cough. Used properly, it can be the difference between staying at home and ending up in hospital with a pneumonia.

Our mechanical ventilation guidelines say measures to clear secretions should start when oxygen saturations drop below 95%, or drop 2 to 3% below the person’s usual best. And here’s the thing: a drop in oxygen levels in someone with MND and a weak cough is often an early sign that secretions are building up. That’s why a pulse oximeter, and someone who knows how to interpret it, matters so much.

And if bulbar symptoms mean saliva is pooling and going down the wrong way, there are medical treatments your doctors can look at for excessive saliva. Again, a conversation for the treating team, but please raise it. Once again, the equipment is only half the story. The other half is who’s at the bedside, and it’s 24/7 intensive care nurses, 24/7 critical care registered nurses in the home. We’ll come back to that.

Let’s now look at tracheostomy ventilation, the option many MND and ALS patients aren’t even told about. Right, let’s talk about tracheostomy ventilation. This is the part a lot of families tell me nobody discusses with them. A tracheostomy is a small opening in the front of the neck with a tube going straight into the windpipe. The ventilator connects directly to that tube. That’s called invasive ventilation or tracheostomy ventilation.

Now, in countries like Japan and Germany, tracheostomy ventilation at home has been part of MND care for decades. In Australia, it’s unfortunately still rare. And in my experience, one of the biggest reasons is that families aren’t told it’s an option in the first place, or they’re told it can’t be done at home. It can be done at home with the right 24/7 critical care registered nursing team.

And we have plenty of experience in that space. Over the years, we’ve had three MND clients with tracheostomies at home. Two are still current. One unfortunately passed away. He was actually in the news a few years ago, Justin Yerbury.

According to our evidence-based mechanical ventilation guidelines, and always in line with a fully informed person’s wishes and consent, a tracheostomy may be considered when a mask can’t be fitted or tolerated, when non-invasive ventilation isn’t working anymore, when there are severe bulbar symptoms with recurrent aspiration, when secretions can’t be managed without it, or when someone’s been intubated in ICU and can’t go back onto a mask.

So what are the honest pros and cons? And I do mean honest, because this is a huge decision.

Let’s look at the pros. A tracheostomy gives secure control of breathing. You’ve got direct access to the airway to suction secretions, which you just can’t do properly through a mask. For many people, it extends life, sometimes by many years. And I’ve seen many people with MND living at home with a tracheostomy, spending time with their family, being part of the family. Like I said, we’ve been looking after one MND client at home with tracheostomy since 2019. According to the patient’s wife, he’s the longest-living MND client in Australia with a tracheostomy. So well done. It’s all possible.

Let’s now look at the cons. A tracheostomy doesn’t stop MND. The disease keeps progressing. People can lose more movement over time, and for some, the ability to communicate, which is why eye gaze and communication aids need to be set up early, not late.

It’s a big commitment for the whole family, and it needs 24/7 critical care registered nurses at home, full stop.

And I want to say this really clearly. Choosing a tracheostomy is a very personal choice and decision. Choosing not to have one is also a personal choice and decision. Some people choose to stay on BiPAP and focus on comfort and palliative care. That is a valid decision, and we respect the decision. We support people on that path too. People also have the right to stop ventilation later on, and that must be done with proper palliative care, with dignity and privacy.

What I’m not okay with, and what I will always speak about, is someone missing out on a choice because nobody told them, or because the perceived funding and the nursing team weren’t there. And let me go one step further. Whatever someone with MND decides about the end of their life, that decision should be a real choice. Right now in Australia, many people with MND are never told that tracheostomy ventilation at home is an option with 24/7 critical care registered nurses funded by the NDIS, or they are even told it can’t be funded, or they’re told it can’t be staffed. Now, when one pathway is fully supported and the life-prolonging pathway isn’t, that’s not a free choice. Or is it?

So I would really, really like to see MND associations, neurologists, ICU consultants and governments put the same energy into making home ventilation and 24/7 critical care registered nursing as accessible as they do into any other option. Give people the full picture. Fund all the options, and then let them choose.

A lot of people ask me, what does life at home with a tracheostomy and ventilator actually look like? Because they want to know. They want to make an informed decision. They come to me with questions like, “So what does it look like at home when one of your MND clients is ventilated with a tracheostomy? What does that day look like? Do they have quality of life?”

And let me give you a picture here. Your loved one is at home in their own bedroom or living room, with a ventilator next to them and a backup ventilator ready to go. Suction machine, backup suction machine ready to go. Spare tracheostomy tubes. A monitor to monitor heart rate, oxygen levels and so forth. There’s a cough assist machine, a humidifier that’s warming and moistening the air, because air going straight into the windpipe needs to be humidified. There are spare tracheostomy tubes, nebulizer giving sets. There’s also a size smaller tracheostomy tube in case a tube change is difficult. A resuscitation bag always within reach.

And there are 24/7 critical care registered nurses, day and night. That nurse is doing the tracheostomy care, the suctioning, the inner cannula changes, checking ventilator settings and alarms, monitoring oxygen levels, watching for early signs of infection, and working closely with the treating doctors and other team members. The family gets to be the family again: husband, wife, son, daughter, not the 24-hour nurse.

Also, another question I get as part of this is, can people still go out? Most can, with a portable ventilator, batteries and their ICU nurses. Can they still communicate? Many do, with speaking valves, in some cases with eye gaze technology, with communication boards.

I’ve seen people with MND on tracheostomy ventilation at home watching their children and grandchildren grow up, celebrating birthdays, being there for family milestones. That’s the quality of life part that often gets lost in the conversation. Is it easy? No. It’s a big commitment, and it’s not for everyone. But for people who choose life, home is a very different life from months in an ICU bed. And a lot of our clients also tell us, “We choose life over quality of life.” It’s also something to think about.

Let’s now look at the crisis scenario. Let me paint a picture of what happens without a plan. Someone with MND gets a chest infection. Breathing gets worse. Ambulance, emergency department. They get intubated and go to ICU. And now, at 2:00 in the morning, the family is being asked: tracheostomy, yes or no? Palliative care, yes or no? Going home, yes or no? And even if everyone says, “Yes, we want a tracheostomy, we want to go home,” there’s no funding, no nursing team, no equipment, no plan. So they sit in ICU for weeks, sometimes months. That’s a crisis decision made in a crisis setting. And it doesn’t have to be that way.

So let’s now talk about who’s at the bedside and why 24/7 critical care registered nurses are needed. You all know my analogy by now. You would never fly an airplane with only the cabin crew and no pilot. The cabin crew are wonderful people. They are very important, but they can’t fly the airplane. And the ventilator-dependent person at home without 24/7 critical care registered nurses, that’s a plane without a pilot. And it doesn’t matter whether it’s ventilation with tracheostomy or ventilation without tracheostomy. It still needs a 24-hour critical care registered nurse, because that’s what people get when they go into hospital whilst they have MND and whilst they are ventilator dependent.

Think about 3:00 a.m. The tracheostomy tube gets dislodged or blocked with a mucus block. The ventilator alarms. Oxygen drops. Or someone on BiPAP without tracheostomy has a mask leak, and their CO2 is creeping up, and they’re getting drowsy. These are ICU-level emergencies. They can become life-threatening within seconds or minutes. Who’s going to recognize it? Who’s going to fix it within those seconds or minutes?

Again, the evidence says the following. The evidence-based mechanical ventilation guidelines say that care for clients like this must only be provided by 24/7 critical care trained nursing staff, with at least 18 months of ICU experience for the day-to-day team. Now, as a matter of fact, we have chosen to go with a minimum of 24 months ICU experience, so a minimum of two years ICU experience, and all of our nurses should have a postgraduate critical care nursing qualification. They should have done a proper ICU course, and I’d say 50 to 75% of our nurses have done so. So we’re bringing a highly skilled and educated workforce into the community.

So they all must be designated specialist nurses in our field, in your home, more importantly, making sure you can stay out of ICU permanently and predictably.

And ventilator changes can only be done by doctor’s orders, carried out by critical care nurses at the bedside. Also, coming back to the skills and experience of our staff, like I said, we employ only ICU-trained nurses with a minimum of two years ICU experience. Most of them do have a postgraduate critical care nursing qualification. And as a matter of fact, the average nurse on our books has probably between 8 to 10 years ICU experience, closer to that. And because of that, we employ hundreds of years of critical care nursing and ICU nursing experience combined in the community. I argue no other provider in Australia brings a higher skill level into the community.

And all of this applies to three groups: people on invasive ventilation with tracheostomy, adults and children; adults and children on non-invasive ventilation, such as BiPAP or CPAP, who are ventilator dependent; and people with a tracheostomy, adults and children, without a ventilator, because that airway can block or dislodge at any moment.

And I can’t talk about any of this without talking about Noah Johnston. Many of you know Noah’s story. Noah was a 22-year-old man from New South Wales, in Sydney. He was ventilator dependent with a tracheostomy, and he had cerebral palsy as an underlying condition. Whilst he didn’t have MND, his story is still relevant for today’s show and is a warning for every single family relying on home ventilation, with or without tracheostomy.

As has been publicly reported in the media, independent medical and nursing evidence said Noah needed 24-hour critical care registered nursing. While his NDIS matter was before the tribunal, the funding only covered 12 hours of critical care registered nurses a day. When we first started with Noah, he initially had 24-hour nursing care funded, but the NDIS slashed that from 24 hours to 12 hours a day only. And there was no funding for night shifts for critical care registered nurses.

And on the 8th of December 2025, Noah’s tracheostomy tube became dislodged when there was no critical care registered nurse there. And just as we predicted, Noah died. His lawyer, Belinda Kokanovska, said publicly that if a critical care registered nurse had been present, Noah would still be alive. Our thoughts are with Noah’s family still, and also with our staff that worked with Noah and who were working hard to keep him alive.

So what is the lesson for you? Do not wait. Do not wait for the system to catch up. Get your evidence together early. Push for 24/7 critical care registered nurses when it’s clinically needed and the evidence is there. And never accept an airway being left without a qualified ICU nurse at the bedside, whether that’s in a hospital or at home. It doesn’t make a difference where it is.

Now, let me show you something. When your loved one’s breathing depends on a machine and a tracheostomy, quality and safety is not a nice-to-have. Intensive Care at Home actually operates a quality management system certified to ISO (International Organization for Standardization) 9001:2015, which is verified by an independent certification body, specifically for Intensive Care at Home nursing services, including, obviously, for ventilated adults and children. We’re also NDIS registered, and as far as we’re aware, here in 2026, we’re still the only third-party accredited Intensive Care at Home nursing service in Australia, that’s accredited for Intensive Care at Home nursing specifically, including the NDIS registration. Those certificates are right on our website at intensivecareathome.com/accreditation-quality, and I’ll just put a link to that section on our website into the chat so you can actually have a look for yourself.

We employ hundreds of years of intensive care nursing experience combined, and we operate all around Australia, in all major capital cities, in all regional and rural areas, in all states and territories. And all of our staff are ventilation and tracheostomy competent, of course, as they are critical care nurses.

Let’s now look at NDIS funding for 24/7 ICU nurses, or CCRNs (Critical Care Registered Nurses), for some MND clients. The question is on everyone’s mind. I get it. Will the NDIS fund 24/7 critical care registered nurses for some MND participants? Yes, the NDIS has funded and is currently funding 24/7 critical care registered nurses for people with MND who are ventilated with a tracheostomy, or who are highly dependent on non-invasive ventilation such as BiPAP or CPAP. We support MND clients in exactly those situations right now, and have been for many years. But I also want to be straightforward. It is not automatic, and nobody can guarantee you an outcome. The NDIA (National Disability Insurance Agency) has to be satisfied that it’s reasonable and necessary and related to the disability, and it comes down to evidence. But we’ve also found that if you have your evidence together, it’s very difficult for the NDIS to reject.

So what makes the difference? A letter from the neurologist, or respiratory physician, or ICU consultant that explains the ventilator dependency and the risks and the need for 24-hour critical care registered nurses as part of the MND disability. Also, an independent nursing assessment that sets out exactly what clinical tasks are needed and how often across a 24-hour period. A clear explanation of what happens if a qualified ICU nurse isn’t there: tube dislodgement, blockage, ventilator failure. And reference to evidence-based mechanical ventilation guidelines like ours. If the plan comes back without the nursing that’s needed, you can ask for a review of the decision. After that, you may be able to go to the Administrative Review Tribunal, the ART. Get advice early, because there are time frames.

And please, if your loved one has MND and is getting close to 65, apply to the NDIS before their 65th birthday. After 65, it’s generally speaking aged care, including the Support at Home program, and in our experience, that funding comes nowhere near covering 24/7 critical care registered nurses. That’s a gap I keep speaking up about. If your loved one is already over 65, still call us. Let’s talk about the options, including private funding, including hospital funding, including Department of Health funding.

And this is also where NDIS support coordination really matters and helps. We provide Level 2 and Level 3 NDIS support coordination, including Level 3 NDIS specialist support coordination. We also provide TAC and WorkSafe case management. And just so you know, if you’re a support coordinator, you always have choice and control, and you can choose any nursing provider. We’ll always be upfront about that. But whether you will find a nursing provider that is actually third-party accredited for Intensive Care at Home nursing, including ventilation and tracheostomy, I highly doubt.

Let’s now look at from ICU to home, how a safe discharge works. Now, if your loved one is already in ICU, or you’re worried they might end up there, let’s talk about how you actually get home safely, because a safe discharge from ICU to home for someone on a ventilator, with or without tracheostomy, doesn’t happen by accident.

For example, last year we took a young lady home with MND. She was in ICU for 4 months on BiPAP, and she could only be discharged with 24-hour critical care registered nurses, of course. Our mechanical home ventilation guidelines describe a transition team: an experienced critical care registered nurse as team manager, the medical team in the hospital and at home, the home nursing team, which again should only be critical care trained nurses 24/7, the equipment provider, a social worker, therapists where needed, and the funding body. And the family is part of that team.

Before discharge, the funding and the equipment must be secured. The team must be ready to go. The ventilator settings, the tracheostomy care routine, the secretion management plan, nutrition, communication aids, the emergency plan, all of it documented before your loved one leaves the hospital. And the equipment provider has to be contactable 24/7.

So what questions should you be asking the ICU team or the neurologist? Here are a few that help you ask the right questions. Number one, what are the barriers to going home, specifically? Number two, what would need to be in place? Number three, is my loved one medically stable enough for discharge? Number four, what are the current ventilator settings, and how many hours a day are they ventilated? Number five, who will be the treating doctor in the community? Number six, what’s the plan if things get worse?

If the answer to going home is simply, “It’s not possible,” ask why. Because in many cases, it’s possible with the right team, with the right funding. That’s exactly what we do, what we help families with, starting from the funding, starting from the advocacy and the evidence, to delivering the actual 24-hour ICU nursing at home.

Let’s now look at medical records quickly. You have a right to request copies of your loved one’s medical records, or of your own medical records, with MND. Do it early. What should you ask for? Respiratory function tests: vital capacity, SNIP (Sniff Nasal Inspiratory Pressure), cough peak flow, overnight oximetry or sleep study results. Arterial blood gases. Clinical letters from the neurologist and respiratory physician. Hospital discharge summaries. Ventilation charts, vital sign charts, nursing notes, doctor’s notes. Leave no stone unturned. Pathology results. And if your loved one is in ICU, the ICU notes and ventilator settings. These records are the backbone of any NDIS request, any tribunal appeal and any safe discharge home, and they help you ask better questions at every single appointment. Knowledge is definitely power.

Let’s now look at the planning before the crisis checklist. Let me run through the checklist quickly. It’s all on our website once this video has been published with a transcript.

Number one, regular breathing tests, with the numbers written down. Number two, an early conversation with a neurologist, respiratory physician or intensivist about BiPAP and tracheostomy. Number three, an advance care directive and a nominated decision maker. In Victoria, that’s a medical treatment decision maker. Other states have their own forms. Number four, a written emergency plan. Would your loved one want to be intubated? Would they want a tracheostomy if it comes to that? Number five, the NDIS application before 65, and a plan that reflects breathing, not just mobility. Number six, medical reports and an independent nursing assessment ready before you need them. Also, a physiotherapist report, as well as an OT (Occupational Therapist) functional capacity assessment report.

Equipment, number seven: ventilator, second ventilator and external battery, suction machine, second suction machine, and monitor and second monitor, all with backup batteries. Spare masks, suction, cough assist machines, humidifier, spare tracheostomy tubes, including one size smaller, and the list goes on.

Number eight, register as a life support customer with your electricity retailer and have a power outage plan. Number nine, communication aids and voice banking, early. Number 10, a 24/7 critical care registered nursing team lined up in advance. Recruiting and training a dedicated team takes time. Number 11, medical records in one folder or online. And an NDIS support coordinator, Level 3, or advocate who understands the medical complexity, so that they can advocate effectively to the NDIS with the right reports. But the NDIS support coordinator has to be effective. Very, very important.

Let’s now tune into questions and answers as the last part of today’s show.

A question that’s come in is: “My dad has MND and is on BiPAP overnight. When should we start talking about a tracheostomy?” You should start talking about a tracheostomy right now. Not because he has to have one, but because he deserves to know the options while he can clearly say what he wants. Ask the respiratory physician for his latest numbers, and have the conversations calmly, not in the emergency department in a rush. You can also talk to the neurologist. You can talk to the intensive care specialist.

Next question: “Can a support worker manage BiPAP overnight?” If someone is ventilator dependent and can’t manage the mask or call for help themselves, in my view, and according to our evidence-based mechanical home ventilation guidelines, those clients need 24-hour ICU nurses, critical care registered nurses, at the bedside. Remember the analogy with the airplane. The cabin crew are important, but you need the pilot to fly the airplane, and it’s the same here. You cannot fly the airplane at home with ventilation and/or tracheostomy with support workers, general registered nurses or enrolled nurses without ICU experience. It’s just not happening. It’s dangerous. People have died under these models of care.

Next: “My mom is in ICU with MND, and they’re talking about a tracheostomy. They say she can’t go home.” Well, my dear, home is possible for many people with a tracheostomy, with the right funding, right equipment and a 24/7 critical care registered nursing team. Get her medical records, ask the ICU what exactly they see as the barriers, and call us. We help families plan ICU-to-home discharges all the time.

Next question: “How long does it take to set up 24/7 intensive care nursing at home?” It depends on funding, location and complexity, but it’s usually weeks, not days, because we build, select and train a dedicated ICU team around each client. That’s exactly why planning early matters.

“What about CPAP? My husband’s sleep doctor put him on CPAP years ago.” Great question. If he was on CPAP for sleep apnea before the MND, that may still be part of the picture, but for breathing muscle weakness from MND, it’s usually BiPAP that is required. Please ask his respiratory physician, ICU consultant or neurologist to review whether his current machine and settings are still right for him.

Next question: “We are in regional Queensland. Can you still help?” We operate all around Australia, in all states and territories, in all major capital cities, as well as in all regional and rural areas. So yes, the answer is yes. Regional services can take a little bit longer to set up, which is another reason to call us directly, and we can discuss things with you.

And the second-last question: “What if we choose not to have a tracheostomy?” That’s absolutely fine. It’s your loved one’s choice, and it’s a valid one. If they’re on BiPAP and ventilator dependent, or need palliative care at home while on BiPAP, 24/7 critical care registered nurses at the bedside will still make that time safer and more comfortable, and help your family to be a family.

Next question: “Is there a cost to talk to you?” Calling Intensive Care at Home about our nursing service is absolutely free. If you want in-depth advice from me personally, for example preparing for a family meeting in ICU, that’s through our sister service, intensivecarehotline.com, where we provide consulting and advocacy for families in intensive care, and you can have a look there. But in a nutshell, contact me at intensivecareathome.com. Call me on one of the numbers on the top of our website, nationally and internationally. If you’re in Australia, you can call my mobile phone, 041 0942230. That’s again 0410942230. Or you can book a call with me through the schedule appointment button on the website, or you can send me an email to [email protected].

So let me wrap this up for today. MND will affect breathing. You can’t control that. What you can control is whether the big decisions, BiPAP, tracheostomy, home or hospital, and who’s at the bedside at 3:00 a.m., are made early, calmly and on your loved one’s terms, or rushed in a crisis. Plan now. Get the evidence now. Get the right team now. And whatever your loved one chooses, make sure it’s a real, informed choice.

Now, subscribe to my YouTube channel and hit the like button. Comment below what you want to see next or what questions you have. Share the video with your friends and families, and click the notification bell as well. Thank you so much for being here this Sunday. Take care, and I’ll see you in the next one. Take care for now.

With all of that said, with Intensive Care at Home, we are currently sending our critical care nurses into the home 24 hours a day. Therefore, we are providing a genuine alternative to long-term stay in intensive care for:

• Ventilation
• Tracheostomy
• Home BiPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure)
• Tracheostomy care without ventilation
• home TPN (Total Parenteral Nutrition)
• Home IV potassium
• Home IV magnesium
• Home IV antibiotics
• Home IV fluids

We’re providing:

• Cough assist management at home
• Ventilation weaning management at home
• central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line as well as port management at home
• nasogastric tube, nasojejunostomy tube, PEG (Percutaneous Endoscopic Gastrostomy), PEJ (Percutaneous Endoscopic Jejunostomy) tube management at home
• IDC (Indwelling Catheter) and SPC (Suprapubic Catheter) management at home
• Palliative care services at home

We’re also sending our critical care nurses into the home for emergency department bypass services. We have done so successfully as part of the Western Sydney Local Health District’s In Touch program, saving approximately $2,000 per patient that we keep at home instead of them going into an emergency department.

That also means we’re in a position to cut the cost of an ICU bed by around 50%. An intensive care bed costs between $5,000 to $10,000 per bed day depending on location. Intensive Care at Home costs approximately 50% of that, and we’re freeing up the most sought-after bed in the hospital, which is the ICU bed. Most importantly, we’re improving the quality of life for patients and their families, which is a win-win situation for all stakeholders.

Our Coverage and Accreditation

With Intensive Care at Home, we’re currently operating all around Australia, in all major capital cities, as well as in all regional and rural areas. We are an NDIS approved service provider all around Australia, TAC (Transport Accident Commission) and WorkSafe in Victoria as well as the Department of Veterans Affairs all around Australia.

We’re also ISO 9001:2015 accredited. Our clients and we as a service provider have also received funding through public hospitals, private health funds as well as departments of health.

We are the only service provider in Australia that has achieved third-party accreditation for Intensive Care at Home nursing in 2025. We have been achieving this high level of accreditation since 2012. No other provider in Australia has achieved the Intensive Care at Home level of accreditation in the community and has created more intellectual property when it comes to Intensive Care at Home nursing than we have.

This puts us in a position to employ hundreds of years of critical care nursing experience combined in the community. No other service provider in 2025 employs a higher skill level in the community than we do. And that enables us to look after the highest acuity adults and children in the community in Australia safely.

If You Need Help

If you’re at home already and you’re watching this or you’re stuck in an ICU and you realize that you don’t have the right level of support, I can give you many examples where we helped clients with funding, how we advocate for funding. We had to advocate successfully for funding from our first case study to many other case studies where we had to advocate successfully for funding with the right evidence of course because it is crystal clear that disability support workers for example or registered nurses without ICU experience cannot look after ventilated clients at home whether adults or children with or without a tracheostomy and it’s simply dangerous and negligent.

There are plenty of examples where clients with support worker models or even RN (registered nurse) models without ICU experience have died at home and I have evidence to back up everything that I’m saying here because it’s a bit like flying the airplane with a cabin crew instead of the pilot and it could simply be deadly.

This can be avoided by having simply 24-hour critical care nurses at home because our clients are at high risk of medical emergencies or worse without critical care nurses 24 hours. This is actually also evidence-based in the community and is documented in our evidence-based Mechanical Home Ventilation Guidelines on our website at intensivecareathome.com.

Think about it: in an intensive care unit in a hospital, you wouldn’t have support workers or general registered nurses looking after a critical care patient on a ventilator with a tracheostomy. So why would anyone in their right mind do that in a home care environment where there are fewer resources?

Clients that have found us have been at home long-term predictably and permanently with critical care nurses. Their alternative would have been to either die or stay in ICU long-term, and our clients don’t go back to ICU. They stay at home permanently and predictably and the insurance bodies save half of the cost of an ICU. But it’s a win-win situation all around.

We can do the same for you if you’re stuck in ICU or if you’re not safe at home, which includes the advocacy for funding and the network that goes along with it. We have always successfully advocated for our clients or we have the network to successfully advocate for you and for your family member, otherwise we wouldn’t be in business. The same again is applicable for those stuck in an ICU which is similar to many of our, if not most of our cases.

Our Support Coordination Services

This is also why we are providing Level 2 and Level 3 NDIS support coordination. We have a team of experienced NDIS support coordinators, and they have a wealth of knowledge. We’re also providing TAC case management and WorkSafe case management in Victoria with Lucy McCotter.

If you’re an NDIS support coordinator or a case manager or a social worker from another organization or a hospital watching this and you’re looking for nursing care for your participants, please reach out to us as well. If you’re looking for funding for nursing care for your participants and you don’t know how to go about it and how to advocate for it, what evidence to provide, I encourage you to reach out to us as well. We have the network to make that happen. We will help you with the right level of funding and with the right level of advocacy.

We’re also providing NDIS specialist nursing assessments done by critical care nurses with a legal nurse consulting background.

Join Our Team

If you are a critical care nurse and you’re looking for a career change and you want to join a very progressive, dynamic, successful, and high-performing team of critical care nurses in the community, we are employing hundreds of years of critical care nursing experience combined.

If you’re looking for a career change, we’re currently hiring for jobs for critical care nurses in Melbourne, Sydney, Brisbane, Albury-Wodonga, Bendigo, Geelong, Warragul, and also in Wyelangta in Victoria.

If you have worked in critical care nursing for a minimum of two years, adult ICU, pediatric ICU, ED and you have already completed a postgraduate critical care nursing qualification, we will be absolutely delighted hearing from you.

I have a disclaimer though: Because we are offering tailor-made solutions for our clients which includes regular staff, our clients do also want the same staff coming over and over again because they are so vulnerable and so special. That’s why we need regular, reliable staff.

If you’re looking for agency work where you can come and go, this will not be the right fit for you. We’re looking for consistency and our clients are looking for consistency. So please only apply with us if you can give us regular and consistent availabilities for shifts and you’re really keen on building relationships with us and with our clients. Reliability is also a must.

For Medical Professionals and Healthcare Executives

If you’re an intensive care specialist or an ED specialist, we also want to hear from you. We’re currently expanding our medical team as well.

We can also help you eliminate your bed blocks in your ICU and in your ED for your long-term patients or for your regularly readmitting patients with our critical care nursing team at home. We’re here to help to take the pressure off your ICU and ED beds. In most cases, you won’t even pay for it. Even if you do pay for it, it is so much more cost-effective than what you’re paying for in ICU and ED settings, and you get the same level of care and simply more patient and family satisfaction because you also want to partner with your consumers.

If you are a hospital executive watching this, we can help you free up your ICU and ED beds.

International Support

If you’re in the U.S. or in the UK and you’re watching this and you need help, we want to hear from you as well. We can help you there privately with one-on-one consulting and with hiring nurses privately.

Once again, our website is intensivecareathome.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected].

If you like my videos, click the like button, subscribe to my YouTube channel for regular updates for families with Intensive Care at Home and intensive care. Click the like button, click the notification bell, and share this video with anyone who has a family member in intensive care long-term or needs to see this.

Thank you so much for watching.

This is Patrik Hutzel from intensivecareathome.com and I’ll talk to you in a few days.

Take care for now.