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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, tailor-made solutions for long-term ventilated adults and children on non-invasive ventilation such as BiPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure), tailor-made solutions for tracheostomy adults and children without ventilation, cough assist management at home, ventilation weaning management at home, home TPN (Total Parenteral Nutrition), home IV (intravenous) fluids, home IV antibiotics, home IV potassium, home IV magnesium infusions, central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line, port management at home, PEG (Percutaneous Endoscopic Gastrostomy) tube, PEJ (Percutaneous Endoscopic Jejunostomy) tube, nasogastric tube, nasojejunostomy tube, SPC (Suprapubic Catheter), IDC (Indwelling Catheter) management, as well as palliative care management at home.

 

I am also a critical care nurse by background, having worked in critical care nursing for over 25 years in three different countries, having started Intensive Care at Home in 2012 successfully here in Australia.

 

Today I want to talk about a real case. A man in his 50s, I will call John, was admitted to ICU (Intensive Care Unit) with a devastating and rapid onset presentation that ultimately led to a diagnosis of ALS (Amyotrophic Lateral Sclerosis), also known as MND (Motor Neurone Disease). John is currently ventilator-dependent in ICU, has a tracheostomy, a PEG feeding tube, and requires 24/7 critical care nursing in ICU. John’s family is facing one of the most difficult moments of their lives, and they deserve to know that a life outside of ICU is genuinely possible. If you’re reading this as a family member of someone in John’s situation, or as a clinician, or as an NDIS (National Disability Insurance Scheme) planner or any other case manager looking for answers, keep watching because this video is for you.

 

So, let’s just look at who is John and understanding John’s ICU admission.

John is a man in his fifties who was brought to an emergency department in late November 2025 after one of his family members noticed he had become increasingly confused. He was losing weight rapidly, around 27 pounds over five months. He was struggling to walk, swallow, and speak. In the hours before his admission, he deteriorated acutely and became unable to speak or move his arms or legs in the emergency department.

 

John’s blood gas showed a pH of 7.26 and a PCO2 of 94. PCO2 refers to the carbon dioxide in the blood, which means profound respiratory failure and CO2 retention, also known as Type 2 respiratory failure. He was intubated to protect his airway and was admitted into ICU where he has been since November last year.

 

The clinical picture that emerged over the following weeks was consistent with ALS and MND, with respiratory failure symptoms having been building since July last year, muscle weakness in his right hand, unintentional weight loss, fatigue, progressive difficulty swallowing, also known as dysphagia, slurred speech, and increasing limb weakness. Despite multiple GP (General Practitioner) visits and investigations, the diagnosis had not been made before his acute deterioration.

In ICU, John self-extubated on November 28th and required emergency reintubation. A percutaneous tracheostomy was placed in early December by the ENT (Ear, Nose and Throat) team, and a PEG tube was inserted for long-term enteral nutrition. He continues to require full ventilation support and sedation management with fentanyl, propofol, and dexmedetomidine, also known as Precedex, as well as norepinephrine, also known as noradrenaline, for hemodynamic support.

 

For some of you watching my videos regularly, you would have heard me saying that I generally advise against the PEG tube. I do generally advise against the PEG tube, but not in this instance, because for anyone with MND who wants long-term ventilation with or without a tracheostomy, a PEG tube is needed. There are always exceptions to the rule, and this is one of them.

 

John has been on a long and complex ICU journey, as many MND clients can be. I will also come to how to shorten that ICU journey, especially when it comes to Intensive Care at Home, because the question his family and his clinical team need to start asking is what comes next and does it have to be ICU?

 

Let’s now talk about why long-term ICU is not the answer for John? The ICU is a life-saving environment, no doubt about that. A lot of good things happen in ICU, but when it comes to long-term stays in ICU, it is not the right place. For John, it was absolutely the right place until now, because when he arrived he was in acute respiratory failure. But ICU is not and was never designed to be a long-term home for someone with a progressive neuromuscular disease like ALS or MND.

Here is what prolonged ICU admissions look like for a patient like John.

 

1. Institutionalization and loss of dignity and loss of privacy. ICU patients are separated from their family, their home, and everything familiar to them. John is a man who worked until recently, had a wife and a family and a life outside of hospital. The ICU is a foreign, isolating environment, and it’s the same for John, his wife, and his family.

2. ICU-acquired weakness. Prolonged bed rest and sedation accelerate muscle wasting in a patient who is already losing muscle to ALS and MND. Every additional day in ICU makes the road forward much harder.

3. Financial and emotional cost. Long-term ICU care costs $5,000 to $10,000 per bed day. For a family already navigating a devastating diagnosis, the emotional, financial, and logistical burden of having a loved one in ICU is immense.

4. Infection risk. John has already experienced an MRSA (Methicillin-Resistant Staphylococcus Aureus) pneumonia during his admission. Hospital-acquired infections, ventilator-associated pneumonia (VAP), central line and catheter infections, and potentially sepsis are a constant and serious risk of harm for any ventilator-dependent patient in ICU.

 

The question is not whether John can be supported at home on a ventilator with a tracheostomy. The question is whether his family and his clinical team know that it is genuinely possible because it is. John’s family has already reached out to us, which is why I have all the information here and why I am making this video.

 

Let’s now talk about solutions because here at Intensive Care at Home, we are very solution-focused. What is possible for John with Intensive Care at Home? At intensivecareathome.com, we have been providing specialist home-based intensive care nursing for ventilator-dependent adults and children since 2012. We operate all around Australia in all major capital cities, as well as in all regional and rural areas. We are Australia’s only third-party accredited specialist Intensive Care at Home nursing provider, certified against ISO 9001:2015 and NDIS standards, and our December and January audits returned a complete clean outcome.

 

For a patient like John, here is what home-based intensive care looks like. 24/7 critical care registered nurse support at home so that he can leave ICU safely. This is the gold standard model, and it means that John will be supported around the clock by qualified critical care nurses 24/7, not general registered nurses who have no ICU training, and definitely not disability support workers. Both general registered nurses and disability support workers for John would be a death sentence. With Intensive Care at Home, which is an evidence-based service, you only get nurses with ICU training who understand his ventilator, tracheostomy, medications, and clinical complexity because he needs to leave intensive care and it needs to be safe.

 

Also, invasive home mechanical ventilation with a tracheostomy because John already has a tracheostomy in situ. A tracheostomy is an unstable artificial airway and can only be looked after safely by critical care nurses with a minimum of two years of critical care nursing experience and a postgraduate critical care nursing qualification. Our nurses are trained and experienced in managing invasive ventilation at home, including tracheostomy management, circuit management, ventilation management, suctioning, tracheostomy nebulizers, and everything that goes along with that similar to an intensive care unit. Our clinical practice aligns with our evidence-based mechanical ventilation guidelines and the clinical framework we work within.

 

Enteral nutrition management. John has a PEG tube for long-term nutrition. Our nurses manage PEG tube feedings, flushing, and monitoring at home as part of routine care, making sure nutrition is absorbed, digested, and that there is minimal risk of aspiration.

 

Medication management. Complex medication regimens including PRN (as needed) medications and protocol-driven titration are managed by our critical care nurses in the home environment.

 

Family-centered care. John’s wife has been at his bedside throughout his ordeal. At home, she can be his wife again, not just a hospital visitor with restricted access. Family involvement is central to how we work, and we actively train and support families to understand and participate in John’s care.

Palliative care integration. When needed or desired by the family or by the patient, ALS and MND are progressive diseases. As John’s condition evolves, our model supports seamless integration of palliative care goals alongside active clinical management, so that his quality of life, comfort, dignity, and privacy remain central to everything we do.

 

Funding Options: How John Can Access Home-Based Intensive Care

Currently, someone is paying for John’s ICU bed, $5,000 to $10,000 a day and it’s the government. $5,000 to $10,000 per bed day depending on location depending on condition, but you look up the statistics, it’s $5,000 to $10,000 a day. That’s a lot of money. ALS and MND are permanent progressive disabilities, which means John is almost certainly eligible for the NDIS. NDIS funding can cover the cost of home-based intensive care nursing. We have a number of clients in the community that are NDIS funded, including MND clients.

 

As an NDIS registered provider, Intensive Care at Home provides both Level 2 and Level 3 NDIS specialist support coordination, as well as the nursing support themselves. Our team understands how to build an NDIS plan that genuinely reflects John’s clinical complexity, ensuring his plan captures the 24/7 nursing with intensive care nurses he needs, rather than being underfunded with generic support worker hours that are inappropriate and unsafe for a ventilator-dependent patient.

 

Providing services with general registered nurses or disability support workers is a death sentence. There is plenty of evidence for this. Some of you may have seen the article about Noah Johnston in late January this year, who died on the support worker model. There are plenty of other cases that the NDIS still has not taken accountability for.

 

NDIS funding for home ventilation and tracheostomy care must be structured correctly. It requires clinical evidence, specialist advocacy, which we can provide, and a provider who understands both the NDIS framework and the clinical reality of managing a patient like John at home. That is exactly what we do.

If you are John’s family member or a clinician involved in his care, please reach out to us. We can help you navigate the NDIS pathway and build the case for home-based intensive care nursing funding, because we have done it since 2012, otherwise we would not exist.

 

Besides NDIS, there is also TAC (Transport Accident Commission) funding, DVA (Department of Veterans’ Affairs) funding, private health funds, departments of health, and hospitals directly. Don’t look at one funding source only, talk to us.

 

Also, the evidence-based for home mechanical ventilation and Intensive Care at Home. Intensive Care at Home is not experimental. It has been successfully operating in countries like Germany and Austria since the late 1990s. I was part of setting it up in Germany in those years, and I brought the concept successfully to Australia in 2012.

 

Home mechanical ventilation for patients with ALS, MND, spinal injuries, and any other neuromuscular disease that leads to ventilation with tracheostomy is well supported by clinical evidence not only by our evidence-based Mechanical Home Ventilation Guidelines, but also by our policies and procedures that are third-party accredited, and most importantly by our clinical team. We employ hundreds of years of intensive care nursing experience combined. No other provider in Australia brings that level of experience in the community.

 

Our evidence-based mechanical ventilation guidelines outline the clinical standards we adhere to, drawing on national and international best practice for ventilator-dependent patients with tracheostomy being transitioned from ICU to home permanently and predictably. Countries like Germany and Austria have decades of experience with home-based intensive care as the standard pathway for patients like John, not prolonged institutionalized stays.

 

Australia is catching up, because we have been operating here since 2012. We are the only provider in Australia that is third-party accredited. We have the intellectual property, we have the team, and we have built the infrastructure.

The evidence tells us that patients with ALS or MND who receive non-invasive or invasive home ventilation have improved survival, better quality of life, and significantly reduced hospitalization and ICU stays compared to those who remain in institutional care, or worse, pass away because they don’t hear about us. For John, who is in his 50s with a family alive and a future, those outcomes matter enormously. We have had many MND clients and we still have many MND clients in the community that we look after on ventilation with tracheostomy, most of them NDIS funded with 24-hour nursing care. So for anyone watching this. There is a solution for you.

 

So, what John’s family needs to do right now. If you are reading this as a member of John’s family or any other family in a similar situation, here is my direct advice.

 

1. Request all of John’s medical records. You have a legal right to access them, all ICU progress notes, nurses’ notes, doctors’ notes, consultant letters, medication charts, chest X-rays, CT (Computed Tomography) scans, ventilation charts, fluid balance charts. Leave no stone unturned. We can help you make sure that a medical record release is complete. You need to understand what happened and what the current plan is. It puts you in a position of knowledge and advocacy.

 

2. Ask the ICU team about the discharge planning pathway. Has a social worker been involved? Has anyone discussed NDIS or any other funding bodies? Has a home ventilation assessment been considered? If not, start asking these questions now and get us involved, because we can help you with the advocacy.

 

3. Contact us at Intensive Care at Home. We can review your loved one’s case, speak with you directly, speak with the ICU team directly, and help you with an NDIS support coordinator Level 2 or Level 3. We deal with NDIS, other funding bodies, hospitals, and ICU teams all the time. Home intensive care for a patient like John is absolutely feasible. We do this every day for families like yours.

 

Call us at intensivecareathome.com. Call us on one of the numbers on the top of our website, or call me directly on 0410 942 230. That’s again 0410 942 230. Or send us an email to info@intensivecareathome.com.

 

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.