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Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies and where we also provide tailor made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home, including home TPN.

In last week’s blog, I talked about,

CAN YOU DIE WHILST ON BIPAP

 

You can check out last week’s blog by clicking on the link below this video:

https://intensivecareathome.com/can-you-die-whilst-on-bipap/ 

In today’s blog post, I want to answer a question from one of our clients and the question today is

Is the NDIS Neglecting and Killing Ventilated and Tracheostomy Clients in the Community? (Part 2)

Hi, it’s Patrik Hutzel from Intensive Care at Home, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies. And where we also provide tailor-made solutions for hospitals and intensive care units whilst, providing quality care for long-term ventilated patients with tracheostomy and also with non-invasive ventilations such as BiPAP or CPAP, otherwise medically complex patients at home, including home TPN.

Now, a few weeks ago I made a video with a title, “Is the NDIS (National Disability Insurance Scheme), Neglecting and Killing, Ventilated and Tracheostomy Clients in the Community?”. And that’s a few weeks ago, the video had quite a large number of views, and I obviously had some feedback from clients, had some feedback specifically from NDIS support coordinators, and they all agreed that the NDIS is clearly neglecting and potentially has an agenda to let people with ventilation, tracheostomy die so they don’t end up paying for them.

So clearly there seems to be a misaligned agenda from the NDIS in going down that track. Clearly, we have seen over the years that if NDIS participants with ventilation and tracheostomy don’t get funding for 24-hour nurses with intensive care nursing skills, that they are dying because we’ve seen clients where the clients were only funded for the night shift. For example, ventilation tracheostomy, and they were left during the day with parents or with other family members or with support workers, disability support workers that couldn’t manage medical emergency that inevitably happen with ventilation and tracheostomy, and then patients died at home because medical emergencies could not be managed by lay people and by the time the ambulance arrived, the patients had already deceased. This is tragic beyond words, absolutely tragic beyond words, and I hope that those clients at the time have not died in vain because obviously the NDIS seems to be busy sweeping it under the carpet whereas we are trying to bring it out to the open here at Intensive Care at Home because money should not be a determining factor whether someone can live or die.

But obviously that seems to be the agenda of the NDIS at the moment. Clearly people within the NDIS when we talk to them, they have no clinical background. They have no ethics morals, they have no research or evidence-based papers to stand or to justify their decisions, why a ventilated tracheostomy client cannot have an ICU nurse 24-hours a day. Clearly it’s a win-win situation. Otherwise, those patients or clients end up back in ICU where the taxpayer funds a $6,000 per day ICU bed that can’t be used for somebody else.

And in the community with our service, for example, that saves around 50% of the cost of an ICU bed, and we are maximizing quality of life and quality of end of life for our clients and their families in the home. So by the same token, as much as I have things to say about the NDIS, I do believe the Department of Health need to come to the party as well. Because whilst our clients technically have a disability that leads to significant health issues, I do believe whether it’s the NDIS or the state departments, they need to communicate to each other how to free up ICU beds with our service Intensive Care at Home. Because clearly, we can provide a win-win situation for all stakeholders.

And it seems to me like, the Departments of Health are trying to delegate the decision making to the NDIS. And again, within the NDIS, the people that we have come across, when we ask them what makes them qualified to make decisions about people on life support, I. e. ventilation, tracheostomy, we get silenced. And again, their decision making, to cut funding and what not is not backed up by research. It’s probably backed up by financial budgets. So, it’s very disappointing what we see and lives are at stake and people need to wake up what’s really happening in the environment. And I can only stress once again that all of our clients that we are advocating for all have the medical support from the specialist doctors where letters have been written for 24-hour nursing care with intensive care nurses. We have done nursing assessments. If you look on our website, there’s the mechanical home ventilation guidelines that are result of about 25 years of Intensive Care at Home nursing.

Now, in Europe and here in Australia as well, clearly the mechanical home ventilation guidelines have proven that the only way a ventilated and tracheostomy client can be looked after at home is with intensive care nurses 24-hours a day. Those intensive care nurses need to have a minimum of two years ICU experience or pediatric ICU experience to make that safe. Clearly with deaths that have occurred in the community this is a no-brainer. Now, furthermore, whilst, we unfortunately witnessed at least three deaths in the community from our clients where that weren’t funded for 24-hour intensive care nursing at home, even though they had a tracheostomy and were ventilated, clearly there’s negligence from the NDIS and the NDIS needs to live up to that.

But also, again, I do believe that the departments of health and the NDIS need to talk to each other. I think that’s obviously something that’s not missing. I think there’s a lot of blame shifting from the NDIS to the Department of Health and vice versa. Now, the state governments and the federal governments have the so-called Co Act agreement where, money is being exchanged between the states and the federal governments to provide services that people need to keep hospital beds, empty intensive care beds, in particular, the most highly sought after bed in a hospital, the most expensive bed in a hospital, the most difficult to staff bed in a hospital. Again, with Intensive Care at Home, we are providing that win-win situation for families, for clients, for hospitals, for the NDIS, for departments of health and people shouldn’t die along the way. So, happy for your comments below this video, what do you think the NDIS should do and what do our families think?

If you have a loved one at home or in a hospital with a ventilator, tracheostomy and can’t be weaned off the ventilator. Where do you want your loved one to be? How do you see the hospital helping us and vice versa? How do you see us helping the hospitals? How do you see us helping the NDIS? How do you see us helping the departments of health and so forth? Leave your comments below the video or on our website, so that healthy discussion can take place, because I think that’s also part of the issue that no healthy discussion is taking place. Any discussion seems to be stifled, and we want to hear people’s opinions.

So thank you for watching.

So, if you have a loved one in intensive care with a ventilator, with a tracheostomy, even if they’re not on a ventilator and have a tracheostomy, you will find it very difficult to get them home.

If they’re on BiPAP or on CPAP in a hospital, you will probably find it very difficult to get them home. If they’re on TPN (Total Parenteral Nutrition), again, you will find it very difficult for you to get them home. But we can help you. And it’s the same for hospitals. If you’re finding a difficulty discharging those patients home, we can help you with Intensive Care at Home, saving half of the cost of an intensive care bed, and freeing up those resources. And we are obviously improving the quality of life for our clients, and adults and children at home. So if you need that service or if you want to know more about it, call us on one of the numbers on the top of our website at intensivecareathome.com or simply send us an email to [email protected].

Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There you have access to me and my team 24-hours a day, and we answer all questions, intensive care and Intensive Care at Home related.

If you need a medical record review, please let us know as well. We can help you review medical records, we can help you with NDIS specialist support coordination so you should contact us as well. Thanks for watching.

Subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home. Share the video with your friends and families. Click the like button, click the notification bell and comment below what questions and insights you have from this video. Do you agree or do you disagree to what I’m saying here?

And thanks for watching.

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