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If you want to know if you can go swimming with motor neuron disease, a ventilator, and a tracheostomy, stay tuned. I’ve got news for you.

My name is Patrik Hutzel from intensivecareathome.com. In today’s blog, I want to talk about an experience this week that I had with one of our clients where we went swimming. The client is ventilated with a tracheostomy and has motor neuron disease.

We went swimming before with clients on the ventilation with tracheostomy and it’s not a new exercise for us, but I have to admit we haven’t done it for a while, but this client had the desire to go swimming, and we did it.

So, there were 3 CCRNs, 3 of our staff, including myself and we made sure the client is safe when we floated him into the water. It was quite an exciting event. He was very happy, his family was very happy who was there when we had him in the water and obviously making sure that the airway was safe, airway was stable. Compare that to someone being stuck in intensive care. That is quality of life at its best. It is all about the can-do attitude, not the cannot-do attitude.

It ties right in one of my previous blogs from last week was, “Can motor neuron disease patients on noninvasive ventilation have a tracheostomy and live at home?” So clearly, the answer is a yes.

To illustrate this even further, it is all about maximizing the quality of life for patients and their families. It’s about a can-do attitude and not about a cannot do attitude. It’s all about pre-planning, making sure you’ve got all the emergency equipment there, that you can react to certain situations that may or may not occur.

But with three highly qualified CCRNs there, we felt very safe of loading our client into the water, making sure the airway is above water, of course, and the ventilator is attached to the client at all times on the edge of the swimming pool.

So, once again, compare that to a patient in ICU that’s confined to their bed space, confined to their cubicle with people who can’t think outside of the intensive care bed space.

And while simultaneously cutting the cost of an intensive care bed by approximately 50%, and freeing up an ICU bed, and the whole notion that patients on ventilation with tracheostomy have no quality of life is complete and utter nonsense.

It all comes down to what is being made available in the community for them, that’s assuming they want that. I’m not imposing Intensive Care at Home to anyone who doesn’t want that but ask long-term ventilated adults and children with tracheostomy in ICU what they want and give them a choice and don’t condemn people to say they won’t have any “quality of life” if they were to survive the ICU stay.

There’s plenty of patients in the community that live a very good life with tracheostomy and ventilation or ventilation plus, minus tracheostomy. So, nothing should stop anyone from going home.

In some instances, it might also be quality of end of life, might be palliative care, doesn’t really matter, but you need to give patients and families a choice and not make judgments about an area in the community that you simply don’t have enough information about, that you don’t have enough insights into.

Ask our clients, ask their families what they want and make it happen for them. That’s all we do at intensivecareathome.com.

Now, also, like I said in one of my previous blog posts just last week, I talked about, “Can MND patients on noninvasive ventilation have a tracheostomy and live at home?” Once again, yes, they can.

Now, here in Australia, very few patients with MND have a tracheostomy. Why is that? Well, let’s call it for what it is because even MND associations in the relevant states advise against it because they’re simply not informed, and many of those advisers are not even clinical, they’re not doctors, they’re not nurses. They come from a limited mindset, and they come from a place of ignorance.

Now, I’ve worked in intensive care and critical care for 25 years in three different countries. I worked as a nurse manager in intensive care. I was part of setting up Intensive Care at Home in Germany 25 years ago, and even then, we had MND patients at home with tracheostomies and ventilation because that was their choice. They wanted to live.

So, why are some MND organizations advising against it? Because they simply don’t have enough insight. They’re coming from a very limited mindset. They’re saying things like, “Oh, the NDIS (National Disability Insurance Scheme) won’t funded here in Australia”, which is again nonsense. The client that I was referring to with MND tracheostomy, ventilation is fully funded for critical care nurses, 24 hours a day, by the NDIS. It all comes down to the right advocacy.

If some MND organizations don’t know how to go about the advocacy, well, maybe you don’t employ the right “experts” in your organization. Maybe you need to look outside of your little box, and you need to look what’s also happening in other countries and give people a choice.

So, with Intensive Care at Home, we obviously provide tailor-made solutions for long term ventilated adults and children with tracheostomies at home. We also provide tailor-made solutions for hospitals and intensive care units at home whilst we’re providing quality care for long-term ventilated adults and children with tracheostomies at home. Otherwise, medically complex adults and children at home, which includes Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure) at home, home tracheostomy care for adults and children that are not ventilated, Home TPN (Total Parenteral Nutrition), home IV potassium, home IV magnesium infusions, home IV antibiotics. We also provide port management, central line management, PICC (Peripherally Inserted Central Catheter) line management, as well as Hickman’s line management, and we also provide palliative care services at home.

We’re also sending our critical care nurses into the home for emergency department bypass services and we have done so as part of a program at the Western Sydney Local Area Health District, their in-touch program, saving approximately $2,000 per patient that we kept at home instead of going to ED, and we’re also cutting the cost of an ICU bed by approximately 50%.

With Intensive Care at Home, we’re currently operating all around Australia in all major capital cities as well as in regional and rural areas. We are an NDIS approved service provider all around the country, TAC (Transport Accident Commission) and in Victoria, WorkSafe in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), DVA (Department of Veteran Affairs) all around the country. Our clients have also received funding through public hospitals, private health funds, as well as departments of health.

We are the only service provider in Australia in 2024 that has achieved third-party accreditation for Intensive Care at Home nursing. No other provider has created this much intellectual property for Intensive Care at Home nursing than we have. We are therefore in a position to employ hundreds of years of intensive care and critical care nursing experience in the community combined. No other provider brings this level of expertise into the community than we do.

If you’re at home already and you’re watching this and you’re on a ventilator, tracheostomy, BIPAP, CPAP, Home TPN, whatever the case may be, and you realize that your current setup is not working and it is most likely dangerous that your current setup is not working and you’re not having the skills and expertise or the funding you need to keep you at home predictably and you’ll feel unsafe, where you’re going back to ICU all the time or you’re going back to hospital all the time, then please reach out at intensivecareathome.com before something serious happens.

Also, if you’re stuck in ICU on a ventilator with the tracheostomy, if your family member is stuck in ICU on a ventilator with the tracheostomy or something long-term, please reach out to us as well.

Many patients in the community have died on ventilation and tracheostomy because of a support worker model or even a general registered nurse model and not a critical care nurse model.

When you look on our website at intensivecareathome.com, when you look at the Mechanical Home Ventilation Guidelines, which are evidence-based, you will clearly see that the only way to keep a ventilated and/or tracheostomy client at home safe is with critical care nurses, 24 hours a day. Once again, that’s evidence-based.

We have proven our concept way back when by taking a client home from ICU predictably because he had a support worker model at home, and they couldn’t keep him safe at home. He ended up in ICU for long periods of time, and as soon as we started providing services to this client, he never ever went back to ICU. So, our model is actually evidence-based, unlike anything else really that’s out here.

This is also because we’ve been so heavily involved in the advocacy for our clients, that’s also why we’re providing Level 2 and Level 3 NDIS Support Coordination. Our NDIS Support Coordinator, Amanda Riches in Victoria has a wealth of knowledge. I’ll put a link in the written version of this blog to an interview with Amanda.

If you’re an NDIS Support Coordinator 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 more nursing care for your participants and you don’t know how to go about it and what evidence to provide, I also encourage you to reach out to us. We can help you with the right advocacy. We also provide NDIS specialist nursing assessments done by critical care nurses with the legal nurse consulting background.

If you are a critical care nurse and you’re looking for a career change, we’re currently offering jobs for critical care nurses in the home in Melbourne, Sydney, Brisbane, in Albury, Wodonga, Bendigo in Victoria, as well as in Warragul and Geelong in Victoria. If you have worked in critical care for a minimum of two years, pediatric ICU, ED, and you have already completed the postgraduate critical care nursing qualification, we will be delighted to hear from you.

I have a disclaimer because we’re offering a tailor-made solution for our clients, which includes regular staff, our clients will have the same staff coming over and over again because they’re so vulnerable and so especially it’s all about building those critical relationships with our clients and with our team members and having regular and stable teams.

That means if you’re looking for agency work where you can come and go, this is probably not the right fit for you on a long-term basis because our clients want regular with the same staff coming over and over again. So, it is all about building critical relationships with our clients and we want to build relationships with you as well, of course, so that it remains a win-win situation.

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. We can also help you eliminate your bed blocks in ICU and 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 you take the pressure off your ICU and ED beds. In most cases, you won’t even pay for it.

If you’re a hospital executive watching this and you have bed blocks in your ICU, ED, respiratory ward, et cetera, please reach out to us as well. We can help you.

If you’re in the U.S. or in the U.K. and you’re watching this and you need help, we want to hear from you as well. We can help you there privately.

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

If you like my videos, 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, share this video with your friends and families and comment below what you want to see next, what questions and insights you have from this video.

Thank you so much for watching.

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

Take care for now.