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My name is Patrik Hutzel from intensivecareathome.com, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies, where we provide tailor-made solutions for long-term ventilated adults and children on BiPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure) without tracheostomy, tracheostomy without ventilation for adults and children at home, home ventilation and tracheostomy weaning, home cough assist management, home TPN, home IV fluids, home IV antibiotics, home IV potassium, home IV magnesium, and other electrolyte infusions, home central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line, and port management at home. IDC (Indwelling Catheter), SPC (Suprapubic Catheter), PEG (Percutaneous Endoscopic Gastrostomy), PEJ (Percutaneous Endoscopic Jejunostomy) tube, nasogastric tube, nasojejunostomy tube management at home, as well as palliative care management at home. We are also providing Level 2 and Level 3 NDIS support coordination or our clients as well as TAC and WorkSafe case management.

Today, I am answering a deeply, personal and urgent question from a viewer named Tiana.

 

Reader Question — From Tiana   “Hi Patrik,   I am probably going to have to have a tracheostomy and be put on a ventilator soon.   I have MND/ALS. I cannot speak at all, swallow at all, I am on a feeding tube. And now I am having breathing issues. I started on a BIPAP machine last week and it is very comfortable but when I wake up, I cannot inhale or exhale. I almost had to call the ambulance several times last night. But I am terrified to call them. Because they will want to install a tracheostomy and put me on a ventilator. This is all happening so fast. I have been in sports all my life and up until last week I play netball every other day. I even was a fly fishing guide in a national park for many years!   I am single and live alone so that is why I am so scared. I do not have children. I have a niece who helps me some but she is very busy with her life. I am desperate. I do not know if I can afford to get help at home. Will I have to live in a nursing home?   Tiana”

 

Tiana — First, I Want to Say Something Important

Tiana, before I answer your question clinically, I want to acknowledge something deeply personal. You played netball every other day until last week. You were a fly fishing guide in a national park. You have lived an incredibly active, physical, outdoors life. And now MND/ALS has brought you to this point in what feels like an impossibly short time. That is terrifying, and your fear is completely valid.

But I also want to say this: you have done something extraordinary. You reached out. You are on BIPAP. You are fighting. You have not given up and that matters enormously. The fact that you found Intensive Care at Home and wrote to me tells me you are a fighter, and fighters deserve real answers. So let me give you exactly that.

 

You’ve Come to the Right Place Tiana, you have done an incredible job keeping yourself alive on BIPAP and searching for help. You have absolutely come to the right place.

 

What Is Happening to You Right Now With MND/ALS and Breathing

MND/ALS — Motor Neurone Disease / Amyotrophic Lateral Sclerosis — is a progressive neuromuscular disease that destroys the nerve cells that control voluntary muscle movement. This includes the muscles you use to swallow, to speak, and critically — to breathe.

 

What you are describing — waking up and not being able to inhale or exhale — is a serious and well-recognized clinical event in MND/ALS. It is called respiratory failure, and it is happening because the muscles that drive your breathing are becoming progressively weaker. The BIPAP machine is doing the work of those muscles by delivering pressurized air to support each breath.

 

The terrifying episodes you are describing at night where you wake up and cannot breathe are likely related to one or more of the following:

• Your BIPAP settings may need urgent review and adjustment by a respiratory specialist
• Secretion build-up in your airway overnight can partially block airflow
• The BIPAP mask may be leaking or not fitting correctly during certain sleep positions
• Your MND is progressing and the non-invasive ventilation may be reaching its limits for you

 

URGENT SAFETY NOTE Tiana — please take this seriously: if you cannot breathe, call an ambulance immediately. I understand your fear of the ambulance and what follows. But your life matters. We can navigate everything else once you are safe.

 

Should You Get a Tracheostomy? Understanding Your Options

This is the big question you are wrestling with, and I want to give you an honest clinical answer.

 

In MND/ALS, there comes a point where non-invasive ventilation (BIPAP) is no longer sufficient to keep you safe particularly at night when you cannot manually adjust your mask or call for help. When that happens, a tracheostomy and invasive mechanical ventilation becomes the next step if you choose to continue living.

 

Let me be clear about what a tracheostomy actually involves:

• A tracheostomy is a surgically created opening in your neck (trachea) through which a tube is inserted
• This tube connects to a ventilator that controls your breathing precisely and reliably
• Unlike BIPAP, which requires you to cooperate with the mask and breathe against pressure, a tracheostomy ventilator delivers breaths directly — you do not have to ‘fight’ to breathe
• It allows for much more effective airway suctioning of secretions — which is a major safety issue in MND/ALS
• It is not reversible in advanced MND/ALS — this is a life-sustaining intervention

 

I want to also be honest about the trade-offs. A tracheostomy means you will need professional Critical care nursing 24 hours a day, 7 days a week, because you cannot manage your own airway independently. But here is the critical point — and the reason you have come to the right place:

 

The Key Insight That 24/7 nursing care does NOT have to happen in an ICU or a nursing home. As a matter of fact it would be very unsafe in a nursing home unless our ICU nurses would look after you 24/7 in a nursing home. It can happen in YOUR home, in YOUR community, with YOUR quality of life — and it can be fully funded through NDIS or other funding bodies.

 

Evidence-Based Home Ventilation: What the Guidelines Say

At Intensive Care at Home, everything we do is grounded in clinical evidence. Our Mechanical Home Ventilation Guidelines — which I encourage you to read — outline exactly how mechanical ventilation in the home is delivered safely and effectively.

 

The evidence is clear: mechanical home ventilation — both non-invasive (BIPAP/NIV) and invasive (tracheostomy ventilation) — has been used successfully for decades in countries like Germany, Austria, the USA, Canada, and now Australia since 2012. The key requirements for safe home ventilation include:

• 24/7 Critical Care Registered Nurses — not general registered nurses or support workers — delivering the care
• Properly trained staff in tracheostomy management, suctioning, ventilator management, and emergency response
• A structured, accredited, quality-assured service that meets the minimum clinical standards
• A support team that can prevent emergencies or respond to respiratory emergencies in the home environment

 

Our evidence-based guidelines make this point explicitly: any service delivery without Critical Care trained nurses puts the ventilated Adult or Child at risk. This is why the Noah Johnston case — a young ventilated man who died in December 2025 after his care was downgraded from registered nurses to support workers — is so important. It is a tragedy that must not be repeated. At Intensive Care at Home, we will never compromise on this standard.

 

Intensive Care at Home: Australia’s Only Third-Party Accredited Intensive Care at Home Service

Tiana, this matters enormously for you. Intensive Care at Home is the only Intensive Care at Home nursing service in Australia that is third-party accredited specifically for Intensive Care at Home nursing. Our accreditation includes:

• ISO 9001:2015 certification — the internationally recognized quality management standard
• BSI Group audited — with zero non-conformances at our most recent December 2025 audit
• NDIS Quality and Safety Commission registered (Provider Number 4050000298)

 

You can verify our accreditation and quality credentials here: intensivecareathome.com/accreditationquality

 

We operate all around Australia in all states and territories— we employ hundreds of years of Critical Care Registered Nursing experience combined in the community. We have successfully transitioned many clients with MND/ALS, spinal cord injury, Guillain-Barré syndrome, cerebral Palsy, RETT syndrome, stroke, Acquired Brain Injury (ABI), Traumatic Brain Injury (TBI), spinal injuries etc… and other complex conditions from ICU and hospital into home-based intensive care with full 24/7 nursing support.

 

What Does 24/7 Nursing Care Look Like for You, Tiana — Right Now and After a Tracheostomy?

 

Let me walk you through what support looks like at each stage of your journey.

Stage 1: Right Now — While You Are on BIPAP

Even before a tracheostomy, you need nursing support. Living alone with MND/ALS on BIPAP — waking up unable to breathe — is not a situation where you should be without clinical care. Here is what we can provide:

• Critical Care Registered Nurses who are experienced with BIPAP/NIV in MND/ALS patients
• Overnight nursing to monitor your breathing, adjust your mask, manage secretions, and respond immediately if you stop breathing
• Coordination with your respiratory specialist and neurologist
• NDIS Support Coordination (Level 2 and Level 3) to help you navigate the NDIS and get the funding you need

 

Stage 2: After a Tracheostomy and on a Ventilator

Once you have a tracheostomy and are on invasive mechanical ventilation, you will require 24/7 Critical Care nursing in your home. At Intensive Care at Home, we manage this every single day for multiple clients across Australia. This includes:

• Tracheostomy care, tube changes, cuff management
• Ventilator management — setting adjustments, circuit management, troubleshooting
• Airway suctioning — critically important in MND/ALS where secretion management can be life or death
• Feeding tube management (since you are already on a feeding tube, our nurses are experienced with PEG and NG tube care)
• Emergency prevention and response — our nurses are ICU-trained and know how to respond if your ventilator alarms or your airway is compromised
• Communication support — helping you use communication aids and assistive technology

 

Living in the Community on a Ventilator — It Is Real Many of our current clients — with MND/ALS, spinal cord injury, Guillain-Barré, and other complex conditions — are living in the community, in their own homes, with tracheostomies and ventilators, fully funded by NDIS for 24/7 Critical Care nursing. This is not a dream — it is happening right now, for real people, all over Australia.

 

Will You Have to Live in a Nursing Home? Absolutely Not — If We Can Help It

 

Tiana, this question broke my heart a little — because the answer is: you do not have to. A nursing home is not the right environment for someone on a ventilator with MND/ALS. Nursing homes are not equipped to manage invasive mechanical ventilation. And you deserve better than that.

 

As a matter of fact it would be very unsafe in a nursing home unless our ICU nurses would look after you 24/7 in a nursing home.

 

The alternative is Intensive Care at Home. With the right NDIS funding package, you can live in your own home — or a suitable community setting — with 24/7 Critical Care nursing care that is infinitely better than what you would receive in a nursing home or even a long-stay hospital/ ICU ward.

 

How NDIS Can Fund Your Care — And How We Help You Navigate It

You asked whether you can afford to get help at home. The honest answer is: this is exactly what NDIS is designed for. As someone with MND/ALS and complex care needs — including ventilator dependency — you are exactly the type of participant NDIS was created to support.

At Intensive Care at Home, we provide NDIS Level 2 and Level 3 Specialist Support Coordination. This means we do not just provide the nursing care — we help you:

• Apply for and access NDIS funding
• Build an NDIS plan that reflects your actual clinical needs — including 24/7 nursing care
• Appeal NDIS decisions if your initial funding is inadequate
• Coordinate all your supports so everything works together seamlessly

 

We have fought for — and won — NDIS funding for 24/7 nursing care for many clients who were initially told they would not qualify or that their budget was insufficient. We know how to make the case clinically and we know what the NDIS is legally required to fund for people with complex medical needs.

 

What You Should Do Right Now, Tiana

Here is my clinical and practical advice:

• If you cannot breathe — call an ambulance. Your life is the priority.
• Contact Intensive Care at Home (www.intensivecareathome.com) immediately to start the conversation about your options
• Ask your respiratory specialist or neurologist to review your BIPAP settings urgently — what is happening at night is a clinical emergency
• Do not wait until you are in crisis to start the NDIS process — it takes time and we can help you start now
• Read our Mechanical Home Ventilation Guidelines to understand exactly what is possible for someone in your situation

 

How Intensive Care at Home and Intensive Care Hotline Can Help You

If you are in Tiana’s situation — living with MND/ALS, on BIPAP or facing a tracheostomy, living alone, unsure of your options and terrified of what comes next — please reach out to me directly. This is what we do. This is all we do.

 

Call us in Australia 1300 921 536 | +61 3 8658 2138 book a call with me here (http://intensivecarehotline.com/scheduling-appointment/) or send us an email to [email protected] www.intensivecareathome.com Please contact us if you’re in the USA, Canada, UK, India or any other country as well we can help you there as well.

 

You do not have to face this alone. You have come to the right place. Let us help you stay alive, stay home, and stay living your life.

 

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.