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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) ventilation, all at home, where we provide tailor made solutions for adults and children with a tracheostomy without ventilation, at home where we provide cough assist management, ventilation weaning, tracheostomy weaning at home. Home TPN (Total Parenteral Nutrition), home IV (Intravenous) fluids, home IV antibiotics, home IV potassium, home IV magnesium infusions, as well as central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line, port management at home, SPC (Suprapubic Catheter) and IDC (Indwelling Catheter) management at home, nasogastric tube and nasojejunostomy tube as well as PEG (Percutaneous Endoscopic Gastrostomy) tube and PEJ (Percutaneous Jejunostomy) management at home as well as palliative care management at home. We also provide Level 2 and Level 3 NDIS (National Disability Insurance Scheme) support coordination as well as TAC (Transport Accident Commission) case management.

 

I am the Founder of Intensive Care at Home, and also, we are Australia’s only third-party accredited, as well as NDIS (National Disability Insurance Scheme) -registered specialist home intensive care nursing provider.

 

Today I want to discuss an incident report that we had from one of our staff members involving one of our clients. Let’s call her Jessica, which is not her real name, who lives with cerebral palsy and other disabilities and medical complexities. She has refractory epilepsy.

 

The question behind it was simply urgent: if during the incident we didn’t have a CCRN (Critical Care Registered Nurse) there, rather than a general registered nurse or even a disability support worker, would this client have survived the epilepsy and seizure episode?

 

In this blog post and the YouTube video, I walk you through exactly what happened during one of Jessica’s tonic-clonic seizures, why the response required split-second critical care decision making, and why funding models that substitute CCRNs with lower-skilled staff put clients like Jessica at real risk of death. I also want to give a real-world example of what happened when funding for life-saving seizure events was removed. I’ll come to that a bit later.

 

The Real Seizure Event

In the afternoon, Jessica’s monitor alarmed while she was napping. Her oxygen saturation had dropped to 88%. Within seconds, the attending CCRN on shift identified early signs of a tonic-clonic seizure: partial eye opening, facial mottling, head shaking, body jerking, frothing saliva, and bilateral arm extension.

 

What followed was a rapid, layered clinical response far beyond the scope of a general registered nurse, let alone a disability support worker, and beyond the routine training of most community nurses and general RNs (Registered Nurses), etc.:

• Immediate seizure protocol activation, including retrieval of emergency oxygen and midazolam. Midazolam is a medication mainly used in ICU (Intensive Care Unit). It can be given at home, but it requires a CCRN 24/7 when midazolam is in the mix, the same as with oxygen.
• The CCRN titrated oxygen therapy, moving between 15 L, 10 L, 8 L, 5 L, 4 L, 3 L, 2 L, and 1 L within minutes, based on continuous SpO2 (oxygen saturation) interpretation.
• Two doses of intranasal midazolam, a total of 5.5 mg, were administered in line with the structured seizure protocol.
• Deep oropharyngeal and nasopharyngeal suctioning was performed multiple times mid-seizure, despite jaw clenching, to protect the airway. This means our CCRNs go in with a suction catheter through the nose or mouth, often into a patient’s lungs, to prevent aspiration, because when someone is having a tonic-clonic seizure they are often vomiting and the risk of aspiration pneumonia is real. Deep suctioning is not a skill of a general registered nurse; it is a skill of a critical care registered nurse. You cannot replace those skills with general registered nurses or disability support workers.
• Continuous neurological assessment throughout, including tracking pupil reactivity (PERL, Pupils Equal and Reactive to Light), nystagmus, and responsiveness.
• Chin-lift airway maneuvers and repositioning into a low Fowler’s position for secretion control and post-seizure monitoring, medication preparation for a possible recurrence, and controlled substance S8 (Schedule 8) documentation.

 

The seizure lasted around 16 minutes from onset to cessation. Oxygen therapy was adjusted more than 10 times during that window alone, each adjustment requiring real-time clinical judgment about the risk of hypoxia versus the risk of over-oxygenation, which would worsen Jessica’s underlying hypercapnic respiratory failure.

 

Why This Requires a CCRN 24 Hours a Day

Jessica’s presentation is a textbook example of why home ICU nursing is a fundamentally different discipline from general nursing or disability support work. Jessica’s diagnostic profile includes quadriplegia, cerebral palsy, refractory epilepsy, complete dependence on enteral nutrition, a resistant bacterial infection, and hypercapnic respiratory failure with central sleep apnea and visual impairment. Each of these conditions compounds the others.

 

A disability support worker is not permitted, trained, or insured to perform deep suctioning, titrate oxygen therapy, or administer emergency intranasal midazolam. These are core CCRN and registered nurse clinical interventions. But even a general RN (Registered Nurse) without critical care experience or without critical care training is unlikely to have the pattern recognition to safely titrate oxygen therapy in someone with combined hypoxic risk and hypercapnic respiratory failure, where overcorrecting oxygen saturation can be just as dangerous as undercorrecting it.

 

This is precisely the clinical reasoning that underpins our evidence-based approach to intensive care at home and home mechanical ventilation and respiratory support, which you can read about in detail in our evidence-based mechanical home ventilation guidelines on our website at intensivecareathome.com, linked in the show notes.

 

A CCRN brings ICU-level pattern recognition: the ability to link a falling SpO2 (oxygen saturation) trace, jaw clenching, nystagmus, and pupil changes into a single evolving clinical picture, and to intervene before a seizure escalates into a life-threatening hypoxic event, or progresses toward sudden unexpected death in epilepsy, which is strongly associated with unwitnessed nocturnal seizures where rescue medication is not given in time.

 

Jessica is also on intermittent BiPAP (Bilevel Positive Airway Pressure). Again, knowing when to initiate BiPAP and when to discontinue it is the skill of a critical care registered nurse, not even the skill of a general registered nurse or a disability support worker. BiPAP is something that is initiated most of the time in an emergency department or in ICU.

 

The Danger of Insufficient Funding

One of the most serious gaps in some of our clients’ care models is that they’re not continuously monitored overnight or during the day due to funding constraints. The warning I want to give today is the story of Noah Johnston, which I’ve talked about on this blog extensively.

 

Noah Johnston was one of our clients who had 24-hour NDIS-funded support with critical care registered nurses. The NDIS arbitrarily decided that he should only have daytime nurses and not overnight nurses, despite overwhelming independent clinical evidence from doctors and ICU nurses that he needed 24-hour intensive care nurses. When the NDIS removed the funding for the overnight nurse, he passed away, just as we predicted, because the family and disability support workers could not keep him alive.

 

Noah’s story was highly publicized earlier in the year in the Daily Telegraph, illustrating the catastrophic events initiated by NDIS underfunding. Leaving overnight hours under-resourced without critical care registered nurses left a dangerous window exposed that, in Noah Johnston’s case, led him to pass away.

This is not a theoretical risk. It mirrors patterns we’ve seen and written about before, including the case of Noah Johnston. Clients like Jessica need the same standard of continuous 24-hour critical care registered nurse monitoring, day and night, otherwise they are at risk of dying or going back to hospital.

 

Medical Records, Advocacy, and Why Documentation Matters

Incident reports like the one behind this article are powerful advocacy tools. Detailed, time-stamped clinical documentation, oxygen liters per minute, medication doses, SpO2 readings, and pupil findings are exactly the kind of evidence that demonstrates, in the funding bodies’ or tribunals’ own language, why a CCRN skill set is clinically necessary and cannot be safely substituted by general registered nurses or disability support workers. I also want to thank our staff member who documented this incident so clearly.

 

If you are navigating a similar situation, whether with NDIS, TAC, private health insurance, DVA (Department of Veterans’ Affairs), iCare New South Wales, NIISQ (National Injury Insurance Scheme Queensland), or a hospital discharge team, any insurer, or department of health, I strongly encourage you to keep and request access to your loved one’s full medical records and incident reports. They are often the single most persuasive piece of evidence in securing the right level of funding for 24-hour nursing support at home.

 

If you’re fighting for the right level of care, or you don’t even know what the right level of care is for a loved one with complex needs like Jessica, you don’t have to navigate this alone. Please contact us at Intensive Care at Home. Call us on one of the numbers at the top of our website, or book a call with me by clicking the schedule appointment button on the website, or call me directly on my mobile phone, 0410 942 230, or send me an email to [email protected].

 

Why Intensive Care at Home

Cases like Jessica’s are exactly why I founded Intensive Care at Home. We are Australia’s only third-party accredited specialist home intensive care nursing provider, as well as the only specialist NDIS-registered provider for intensive care at home nursing. You can read more about our accreditation and quality standards on our website; I’ll put the link in the show notes.

 

We employ hundreds of years of combined critical care nursing experience in the community, which enables us to deploy a very high skill level into the community. In Jessica’s case, this demonstrates rapid seizure management, titrated oxygen therapy, deep suctioning, and continuous respiratory and neurological monitoring delivered in the comfort and safety of someone’s home, day and night.

 

The bottom line is this: Jessica’s seizure events show, in granular clinical detail, exactly why complex clients with epilepsy, cerebral palsy, and respiratory failure need 24-hour critical care registered nurses, not general RNs and not disability support workers. Every oxygen adjustment, every dose of midazolam, every suction pass mid-seizure was a clinical decision with life-or-death consequences. That is CCRN-level care. It’s what clients like Jessica deserve around the clock, not just during funded hours.

 

If you’d like help advocating for the right level of funding for your loved one, call us on one of the numbers at the top of our website, send us an email to [email protected], or book a call with me by clicking the schedule appointment button. We also provide Level 2 and Level 3 NDIS support coordination as well as TAC and WorkSafe case management.

 

Our Services

With all of that said with  Intensive Care at Home, we are currently sending critical care nurses into the home 24 hours a day, providing a genuine alternative to a long-term stay in intensive care for ventilation, tracheostomy, home BiPAP, home CPAP, ventilation without tracheostomy, and tracheostomy care without ventilation, home TPN, home IV potassium, home IV magnesium, home IV antibiotics, and home IV fluids. We also provide cough assist management, ventilation weaning management, central line, PICC line, and Hickman’s line, as well as port management at home, nasogastric tube, nasojejunal tube, and PEG tube management at home, as well as IDC and SPC management at home, and palliative care services at home.

 

We are also sending critical care nurses into the home for emergency department bypass services. We have done so successfully as part of the Western Sydney Local Area Health District’s “Hospital in the Home” program, saving approximately $2,000 per patient we keep at home instead of an emergency department admission. This puts us in a position to cut the cost of an ICU bed by around 50%. An ICU bed costs between $5,000 and $10,000 per bed day, depending on location. Intensive care at home costs approximately 50% of that. We are freeing up the most sought-after bed in the hospital, the ICU bed, and most importantly, we’re improving the quality of life for patients and their families, a win-win for all stakeholders.

 

We currently operate all around Australia, in all major capital cities as well as regional and rural areas. We are an NDIS-approved service provider all around Australia, a TAC and WorkSafe provider in Victoria, and a Department of Veterans’ Affairs provider all around Australia. We are also ISO 9001:2015 accredited. Our clients, and we as a service provider, have also received funding through public hospitals, private health funds, and departments of health. We are the only service provider in Australia that has achieved third-party accreditation for intensive care at home nursing, having achieved this level of accreditation since 2012. No other provider in Australia has achieved this level of accreditation in the community or created more intellectual property in intensive care at home nursing than we have.

 

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

 

If you’re at home already and realize you don’t have the right level of support, or you’re stuck in an ICU, we have many examples of how we’ve helped clients secure funding and how we advocate for it with the right evidence. It is clear that disability support workers, or registered nurses without ICU experience, cannot safely look after ventilated clients at home, whether adults or children, with or without a tracheostomy. It is simply dangerous and negligent. There are plenty of documented examples of clients with support-worker models, or even RN models without ICU experience, who have died at home. It’s a bit like flying an airplane with cabin crew instead of a pilot, and it can be deadly. This can be avoided by having 24-hour critical care nurses at home, because our clients are at high risk of medical emergencies, or worse, without critical care nurses around the clock. This is also evidence-based and documented in our evidence-based mechanical 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 who have found us have been at home long-term, predictably and permanently, with critical care nurses. The 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 the cost of an ICU. It’s a win-win situation all around.

 

We can do the same for you if you’re stuck in ICU or not safe at home, including 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 your family member; otherwise, we wouldn’t be in business. The same applies for those stuck in an ICU, which describes many, if not most, of our cases.

 

This is also why we provide Level 2 and Level 3 NDIS support coordination. We have a team of experienced NDIS support coordinators with a wealth of knowledge. We also provide TAC case management and WorkSafe case management in Victoria with Lucy Mayota. If you’re an NDIS support coordinator, case manager, social worker from another organization, or a hospital team watching this and looking for nursing care for your participants, please reach out to us. If you’re looking for funding for nursing care for your participants and don’t know how to go about it, or 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 advocacy. We also provide NDIS specialist nursing assessments conducted by critical care nurses with a legal nurse consulting background.

 

Careers

If you are a critical care nurse looking for a career change, and you want to join a progressive, dynamic, successful, and high-performing team of critical care nurses in the community, we are employing hundreds of years of combined critical care nursing experience. We are currently hiring critical care nurses in Melbourne, Sydney, Brisbane, Albury-Wodonga, Bendigo, Geelong, Warragul, and Wangaratta in Victoria. If you have worked in critical care nursing for a minimum of two years in adult ICU, pediatric ICU, or ED (Emergency Department), and have already completed a postgraduate critical care nursing qualification, we would be delighted to hear from you.

 

A disclaimer: because we offer tailor-made solutions for our clients, this includes regular staff. Our clients want the same staff coming over and over again because they are vulnerable and special. That’s why we need regular, reliable staff. If you’re looking for agency-style 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 offer regular and consistent availability for shifts, are keen on building relationships with us and our clients and can be reliable.

 

If you’re an intensive care specialist or an ED specialist, we also want to hear from you. We are currently expanding our medical team as well. We can help you eliminate bed blocks in your ICU and ED for long-term or regularly readmitting patients with our critical care nursing team at home. We’re here to take the pressure off your ICU and ED beds, and in most cases, you won’t even pay for it. Even if you do, it is far more cost-effective than what you’re paying for in ICU and ED settings, and you get the same level of care with greater 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. If you’re in the US or the UK and need help, we want to hear from you as well; we can help privately with one-on-one consulting and with private nurse hiring.

 

Once again, our website is intensivecareathome.com. Call us on one of the numbers at the top of our website, or 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 loved ones in intensive care or intensive care at home, click the notification bell, and share this video with anyone who has a family member in intensive care long-term or who needs to see this.

 

Thank you so much for watching. This is Patrik Hutzel from Intensive Care at Home, and I’ll talk to you in a few days.

 

Take care for now.