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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,
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to talk about
A Safe Pathway for Motor Neuron Disease (MND) Patients with Intensive Care at Home!
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 services for long-term ventilated patients and medically complex patients at home, including home TPN.
In today’s blog, I want to talk about pathways for patients with MND or Motor Neuron Disease. We have first-hand information from a family who had their 51-year-old loved one diagnosed with MND or Motor Neuron Disease late last year. He was moved to a hospital, and he was told that he only has a few weeks to live and that the progressive nature of motor neuron disease would kill him very quickly. There were no options being given such as a tracheostomy and home care with Intensive Care at Home, for example.
What happened in the end was the client was put on BIPAP and then was sent home to die with a support worker agency. And as soon as the client was sent home and the support worker saw that the client was on BIPAP (Bilevel positive airway pressure), the support worker said, “Well, I can’t look after BIPAP.” Of course not, because that’s an intensive care nursing skill. And the client then passed away apparently within less than 24 hours at home. That is utterly disgraceful, and it should not happen in a country like Australia, especially now with the NDIS (National Disability Insurance Scheme) and services like Intensive Care at Home available.
So, let me illustrate what that might look like in an ideal scenario for someone being diagnosed with MND. We have a couple of clients at home with MND that have tracheostomies and are ventilated, 24 hours a day, and that live a very good quality of life at home because they have 24-hour intensive care nursing at home with our service Intensive Care at Home, and it’s NDIS funded.
So, what should have happened in this scenario is the family should have been informed by the NDIS and by the NDIS support coordinator what options are available. The challenge that we are finding is most NDIS support coordinators are unfortunately not clinical, and they don’t really have an understanding what MND, or motor neuron disease is and what pathways there are for motor neuron disease.
And again, for example, with one of our other MND clients, what happened was he was on BIPAP initially and then they reached out at that stage saying, “Hey, what if I need a tracheostomy? Can you help me at home with nursing care?” We said, “Yes, of course we can.” And then a few months later, the client ended up in ICU with an aspiration pneumonia, which is not unusual for patients with MND and BIPAP. And after he ended up in ICU with an aspiration pneumonia, ended up being intubated, and then ended up with a tracheostomy. And a few weeks later, we took the client home. And the same could have happened with this particular gentleman if the family had either reached out to us or had reached out to an NDIS support coordinator who understands medical issues, but most NDIS support coordinators don’t. So, this particular client could still be alive had he been referred onto the right services, to the right NDIS support coordinator.
Now, with NDIS support coordination in particular, you should reach out to us. We can help you with NDIS support coordination. And also, especially with our clients that are ventilated and have a tracheostomy, even if they’re non-invasively ventilated, you still need intensive care nurses, 24 hours a day, because clearly this example that I’ve just given you is showing that support coordinators cannot look after BIPAP, not even general registered nurses without ICU experience can look after BIPAP unless they’ve worked in intensive care.
So, if you look on our website at the mechanical home ventilation guidelines that are evidence-based, it clearly says that ventilated patients at home, adults and children need to be looked after by intensive care nurses with a minimum of two years ICU experience. And that’s exactly what we do here at Intensive Care at Home. We bring high quality nursing staff into people’s home to avoid readmissions back to hospital and to ICU. So, the pathway is there for MND, you just need to talk to the right people.
If you or your family are in the unfortunate situation where your family member might have been diagnosed with MND, please contact us. We can help you either with home BIPAP, home CPAP. We can help you with tracheostomy ventilation at home, 24 hours a day, and we can help you with the NDIS, especially with support coordination and specialist support coordination.
So, I want to conclude the video there.
If you have a loved one in intensive care or you need home care for ventilation, tracheostomy, home TPN, non-invasive ventilations such as BIPAP, CPAP, or any other condition where someone is medically complex, you should contact us at intensivecareathome.com. Call us on one of the numbers on the top of our website. We are NDIS accredited here in Australia. We provide services all around the country. We are also a DVA (Department of Veteran Affairs) approved provider, as well as TAC (Transport Accident Commission) in Victoria, and iCare in New South Wales.
And if you are an intensive care nurse with a minimum of two years ICU or pediatric ICU experience, please contact us. We have vacancies in Melbourne, in Victoria, in Sydney, and in Brisbane. You should definitely contact us.
And if you are an intensive care specialist and you’re watching this, we’re also looking to expand our medical team. And if you’re interested in joining our team as an intensive care specialist, I encourage you to contact as well.
And if you are in the United States, you can contact us as well. We have a clinic liaison nurse now in the United States that can help you with finding service providers in the U.S. She’s very dedicated in helping you and your family. If you are in the U.S., please contact us as well on the number on the top of our website for the U.S.
Please 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. And again, contact us at [email protected].
You can also check out our membership for families in intensive care at intensivecaresupport.org. There, you have access to me, and my team and we answer all questions, intensive care and Intensive Care at Home related.
If you need a medical record review, you can contact us as well at intensivecareathome.com.
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Thank you for watching.
This is Patrik Hutzel from intensivecareathome.com and I’ll talk to you in a few days.
Take care.