Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies whilst providing quality care and where we also provide tailor made solutions for hospitals and Intensive Care Units to save money and resources where we provide win-win situations for all of our stakeholders and clients.
So 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, I want to focus on Duchenne muscular dystrophy syndrome, and again, focusing on whether they should have a tracheostomy or not. So today’s question in this blog is
Is it True that Patients with Duchenne Muscular Dystrophy Syndrome with a Tracheostomy Have a Better Quality of Life at Home Rather than in ICU?
So after having worked in intensive care and also with intensive care at home for over 20 years, I have found again, very different approaches when it comes to tracheostomies for Duchenne Muscular Syndrome, for Duchenne Muscular Dystrophy patients.
And obviously this Duchenne syndrome is a disease, a genetic disease that only comes up usually for children or for young adults. And often here, what I found is that, those young patients get denied a tracheostomy when it comes to the time when their breathing is failing, when they go into respiratory failure.
And patients get denied a tracheostomy to prolong their life because people think or health professionals, I should say in intensive care in particular, think that those patients wouldn’t have any perceived quality of life.
Well, nothing could be further from the truth because the fact of the matter is, that with services like intensive care at home, there is no need for someone with Duchenne Muscular Syndrome to stay in ICU for the rest of their lives.
Some literature suggests that if patients with Duchenne Muscular Syndrome have a tracheostomy and can’t come off the ventilator that they stay in intensive care for the rest of their lives.
Well, again, nothing could be further from the truth because patients can actually go home with our service intensive care at home, cut the cost of an ICU bed by 50% and provide patients and families with better quality of life and in some instances, quality of end of life for Duchenne Muscular Syndrome children and it provides a win-win situation.
Also ICU’s, don’t have to worry about blocking their ICU beds for weeks or months to come. So the intensive care service can continue at home. Again, provides a much better quality of life and better quality of end of life for those patients and their families.
Some people still think that ventilator and tracheostomy care can’t be provided at home, but again, nothing could be further from the truth, it’s been happening, particularly in Germany for over 20 years. And it’s been happening here in Australia for over five years now.
So the proof of concept is already there. So nobody can say that this isn’t possible. We basically bring the intensive care into somebody’s home to enable them to leave the ICU in the hospital and continue same quality care at home.
Now, patients and families, couldn’t be happier to finally leave in a burdensome stay in intensive care and go back to their lives at home with 24-hour specialized intensive nursing care at home. Our clients, whether they’d be children or adults can actually go back to school, can go back to kindergarten, whatever their normal life activities are because they’ve got the specialists care around the clock, and that doesn’t stop them from going back to their lives and to the things they want to do.
Compare that to an intensive care unit that is regimented, that doesn’t provide quality of life for patients and families, compare that with the cost effectiveness of intensive care at home, where we are able to save the cost of 50% of the ICU bed or the pediatric ICU bed.
Again, with my experience even 20 years ago, we were looking after Duchenne syndrome, kids at home with a tracheostomy on ventilation. Yes, they do often go into cardiac failure. Yes, they do often have cardiomyopathy, but again, nothing that can’t be treated.
And we have certainly prolonged the lives for many Duchenne syndrome kids to stay in their homes and live with their parents and other family members. The alternative is just too cruel to even think about.
So that is my blog for today. Anybody with Duchenne syndrome that needs a tracheostomy can go home with our service intensive care at home.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected]. That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section
And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.
And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Mornington Peninsula, Frankston area, South Gippsland, as well as Wollongong and in Wagga Wagga in New South Wales.
So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.
Also, we have been part of the Royal Melbourne health accelerator program in the past for innovative healthcare companies.
Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from intensive care at home, and I’ll see you again next week in another update.