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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,

WHY IS THERE A NEGATIVE IMPRESSION OF A TRACHEOSTOMY? I THOUGHT IT WAS PART OF THE COURSE IN ICU?

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

https://intensivecareathome.com/why-is-there-a-negative-impression-of-a-tracheostomy-i-thought-it-was-part-of-the-course-in-icu/

In today’s blog post, I want to share a podcast with Dionne, our Queensland service manager who has started with us in the last few months to set up similar services that are already successfully operating in large parts of Victoria and also in large parts of New South Wales.

Interview with Intensive Care at Home Queensland Service Manager Dionne Essenstam

Patrik:   Hello and welcome to another intensivecareathome.com podcast. My name is Patrik Hutzel, I’m the host of the show. Intensive Care at Home, we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies, and we also provide tailor-made solutions for hospitals and intensive care units whilst providing quality services for our clients, and we also provide services for our clients on BIPAP (bilevel positive airway pressure), CPAP (continuous positive airway pressure), home TPN (Total Parenteral Nutrition). So, welcome to the show.

Today, I’ve got a very special guest here. I’ve got Dionne Essenstam here. Dionne, welcome to the show.

Dionne:  Thank you, Patrik.

Patrik:  Thank you. Let me introduce Dionne to you. Dionne is our Queensland service manager. Dionne has started with us in the last few months to set up similar services that are already successfully operating in large parts of Victoria and also in large parts of New South Wales. Again, Dionne, welcome to Intensive Care at Home and thank you for making time to talk to me on this podcast today.

Dionne, tell us a little bit more about your experience and how you ended up working for us and what we are planning to do in Queensland going forward.

Dionne:  I would have to say I’m very lucky to have found this position with you guys. It’s a culmination of all my years of experience as an intensive care nurse. I feel like I’m using all of those skills with the role that I have with Intensive Care at Home, so thank you for that.

I am a bit older than I’d like to be. I’ve been a nurse for 30 years, 25 years of that was in the pediatric intensive care space. I’ve pretty much done almost every role in the intensive care unit right up to being the nurse unit manager before the facility I worked at closed to merge with another facility. I have opened up a number of services over my years, new pediatric services, and I had also a position as a nursing director with one of the largest HHSs up here in Queensland Health.

So, I bring with me my ICU nurse’s hat, but I also bring with me some management skills and capabilities that I think that we need to try and build our surface up here in Queensland.

Patrik:  But you’re also bringing the experience, especially from the pediatric ICU world, where you would’ve seen kids stuck in ICU long-term.

Dionne:  Always.

Patrik: You would’ve dealt with trauma of parents first-hand.

Dionne:  Yes, absolutely. There was always at least one patient in the ICU who was our resident who used to live there because there was no alternative. There was no way home without burdening all of the care responsibilities on parents and who are often absolutely traumatized and stressed at the worst time of their world that their child has fallen ill and has a critical illness that is likely going to be long-term and ongoing for these resident PICU patients.

So absolutely, I’ve seen first-hand the damage that responsibility can do to a family, to a family structure and it is really part of the reason I’m so excited to be working with Intensive Care at Home. I feel like we offer these families a way out, a way to go back to almost the normality that they used to have pre, whatever got them into that horrible situation. I firmly believe that we save relationships and families by assisting with that burden of care in the home space so that moms and dads can go on doing the normal things that they would do, going to social school events with their kids, and just participating as a family as best they can under their new definition with their child that has obviously got something that’s led them to needing us to care for them in their home.

Patrik: Look, I think it’s no exaggeration when I’m saying we have transformed lives and I mean that in every positive way.

Dionne:  Yeah, absolutely. I completely agree. I completely agree.

Patrik:  Okay, and for anyone watching this that’s a hospital employee, hospital executive, and intensive care professional doctors, nurses, physiotherapists, Allied Health, whilst our goal is first and foremost to improve the quality of life for our clients as well as for families, we can help you eliminate your bed blocks, especially in ICU, but also on some of your respiratory wards. We can eliminate the cost for a hospital.

When I say eliminate, the majority of our clients are now funded through the NDIS, through the National Disability Insurance Scheme, so there really is no cost for the hospital. It’s a win-win situation all together.

Dionne: It’s the revolving door, Patrik, that I feel like we’re closing. Families who were traditionally sent home to be the primary caregivers, in a moment of deterioration or change that’s unexpected, the first things these families are advised to do is come straight back to the hospital and thus the revolving door occurs by having a qualified, experienced, intensive care nurse at their bedside. Not only can they help with that deterioration, but they can generally recognize and prepare or even prevent that deterioration from happening just simply by using the nursing skills that they’ve developed over years and years and years.

Patrik:  Absolutely. It’s quite literally, we are bringing the intensive care into the home to stop that revolving door, which not only keeps ICU beds empty, but also ED beds, ED admission base empty. It’s a win-win altogether.

What have you seen in terms of, and I have seen it, whether it’s in the adult world, but also with some of our pediatric lines, family structures can be very fragile in those situations. We’ve certainly seen our fair shares of family crisis and leading or as a result of those long-term stays in ICU. I’m sure you’ve seen families breaking apart because of that. Our goal is not only to improve the quality of life, it’s also to keep families together really.

Dionne:  Yeah, absolutely. Even just things like gainful employment. I’ve looked after a pediatric patient whose mother was by the bedside for 12 to 14 hours a day and then would go home to care for the other children after childcare arrangements were finished, and the father would then come and stay by the bedside all night, but then in the morning get dressed in his business suit and go off to do his company directorship role, which I think in the short-term, most employers would be kind enough to allow and adjust for these kind of situations. But this child had a lifelong chronic illness that was exacerbated and eventually he needed to leave his job.

That took the financial burden onto the family. It put more strain onto the family because obviously things were a lot harder and a lot tougher when there was no gainful employment for the family to even fund this sort of bedside vigil that they needed to do, and there was no alternative for this young man to go home receiving, especially the airway care that he needed while he was in that acute face of his deterioration. It was awful. It was absolutely awful.

Patrik: Yeah. Look, I have another example there. We have a current client where initially when we started out, there wasn’t any 24-hour care and it was a child at the time, was more or less living in ICU and the dad couldn’t work either. Now, 24-hour care has been in place now for a number of years and the dad is now gainfully employed again in a full-time role. I argue we have saved this very family from poverty.

Dionne: I couldn’t agree even more. I really couldn’t. I think that what we are doing is yes, we are caring for the patient at the bedside, but there’s such an ongoing role on effect of how that affects the family, the place in society and community, people’s mental health. They all walk out of intensive care generally with a fair bit of PTSD (Post-traumatic stress disorder) from what they’ve had to experience watching their loved ones deteriorate. I just think that gentle comfort and reassurance that there is somebody qualified and able to help them in the home helps that journey to mending.

Patrik: Yeah. It’s also the good old term being used in healthcare, holistic healthcare. We are looking not only at the ventilator and the tracheostomy, we’re looking at the bigger picture, which includes the family, which includes the social relationships, the family dynamics, everything. Where hospitals tend to treat an organ or bed number five, whereas we are treating or we are looking after a client and their family from a holistic perspective.

Dionne:  Sometimes even feeding the dogs and the cats.

Patrik:  Absolutely. I think another thing that intensive care professionals seem to forget is they can’t look outside of their little bed space in ICU. All of our clients, without exception, have community access. All of them.

Dionne:  Yeah, absolutely.

Patrik: So, you’re going from ICU where you’re stuck in a bed space or in a cubicle to going home and having community access, especially in the pediatric world, kids going back to Kindy, going back to school, whatever the case may be. But there is a world outside of an ICU bed for those long-term patients.

Dionne:  Yeah, normality. I recall doing that with a little pediatric patient who was a nearly, after an injury, quadriplegic. After I think about eight months within the intensive care unit, she was finally at a point where we could take her out on outings and that family, their first outing, all they wanted to do was go and have a burger at a burger joint and just do family stuff. Just laugh and do what they would usually have done prior to the horror that they’d had. They don’t want miracles, they just want what they used to have, what they know, and support.

Patrik:  Yeah, absolutely. We’ve shared some similar experiences there and we can all see what needs to happen for that particular patient group to improve their quality of life and in some instances, what we’ve done as well, quality of end-of-life, i.e., palliative care where we’ve taken adults and kids home from ICU for palliative care. Sometimes that could have been a few days, it could have been a few weeks, could have been a few months, which again, from my perspective is a much better environment to provide end-of-life care in.

Dionne:  Yes, absolutely. Yeah. I don’t think there’d be many people that would argue against that.

Patrik:  Yeah, absolutely. What do you see, I know you probably have less experience in the adult world of mainly pediatrics, but I mean I have mainly experience in the adult ICU world, but it’s not dissimilar. It’s probably more traumatic for families if there’s a child in a situation where they’re potentially ventilator-dependent, have a tracheostomy. But even in the adult world, there are so many long-term ventilated patients in ICU that would benefit from going home and the hospitals would benefit from them going home. Not dissimilar to the pediatric world. Any insights there or any thoughts on the adult side of things?

Dionne:  Look, I’ve dabbled a little bit in adult intensive care. I didn’t feel it was for me. I think I am a child at heart and it’s easier to communicate with those that you know. So, I didn’t find an area that was conducive to the skillsets that I have. But I still think at the end of the day, if you’re faced with this scenario of lifelong ventilation or whatever complex care needs that you’ve developed. There’s a sense of mourning and a sense of loss of what could have been. In pediatrics, that’s often exacerbated by the fact that they haven’t had as many life experiences. But I still feel like in the adult world as well, a lot of our clients, I think, Patrik, you might have said they’re average age in their 30s, is that correct?

Patrik:   Look, I could do the math, but I would say the average age of our clients is probably somewhere between 35 to 40-ish at the most.

Dionne:  So, there is the mourning for that loss for what could have been. However, I think that what we are doing is giving a little bit more sunshine to what can be, rather than just being stuck in a residential care home where you are outside of your age group or you’re stuck in the intensive care or a complex care ward bed, which seemed to be the majority of the alternatives faced by these non-pediatric patients at least.

Patrik:  Yeah. Here in Melbourne, we have provided even home TPN (Total Parenteral Nutrition) for some pediatric clients, we’re definitely doing it for adults. Any thoughts on the home TPN side for pediatrics?

Dionne:  I believe there is a program that does supply that. However, in my age, I’ve had a lot of experience and I can definitely recall a young man who through his disease was TPN-dependent for his entire life. I would have to say I don’t think he was younger than 10 years old when we finally got him home and the right home TPN care for him to start living at home. And this poor young man had been raised by nurses in the hospital. He didn’t last more than a year at home and had to come back because he just didn’t cope in the home environment. He was so institutional.

Patrik:  Wow.

Dionne:  It was traumatic. It was really traumatic for all concerned, his parents as well, of course. He unfortunately passed but that was due to his disease process.

Patrik: But basically, what you are saying here is that every day in a hospital where, especially for long-term pediatric patients, it’s really stopping their development as a normal person.

Dionne: Absolutely. From into what they would normally be in that home environment. Absolutely. I mean the professionals and pediatric facilities do the very best that they can, but it’s not a home and it’s not a family. No matter what you do, you can’t replace that experience.

Patrik: Yeah. Dionne, I think we also should talk about from what you and I know about the children’s hospital in Brisbane that tend to ask their families that have long-term ventilated kids to stay within a radius of 30 or 40 kilometers. We believe that with our service, and especially with NDIS funding, that is not necessary. Case in point, in Victoria for example, we are looking after pediatric clients that are two, three hours away from the children’s hospital in Melbourne. We believe the same can happen in Brisbane, that geographically, we are not limited. We are absolutely not. For one particular client, we had to fly-in fly-out arrangement for staff to go to a remote area. The same we can make happen in Queensland. Again, with NDIS funding, that’s definitely more possible to what I believe the children’s hospital is offering there at the moment.

Dionne:  Yeah, with Queensland being so geographically vast, I mean obviously it’s a lot bigger than Victoria and New South Wales. I think that as we develop further in Queensland, we will have had this as come to the forefront that people don’t want to move to Brisbane and be constrained by the distance they’ve got to be from the hospital. I feel like definitely there’s a time and a place for that care that if you need to be near the hospital while you’re transitioning out and still have acute care, but majority of the patients that we deal with are not as acute if they’re not as likely for deterioration they’ve got, so their time on ventilation and stomas and so forth has been in to a point where this is an established care pattern. Let’s not make these families uproot their entire lives, move them from their families, their communities, their support people, let’s put them back in their hometowns again.

Patrik:   Absolutely. I think when we sort of talk to people within our world, we are still finding that people don’t understand enough about the NDIS as a funding body, as a funding source. What we have found is some people don’t even know that the NDIS is funding specialized nursing care like we offer.

This is also for anyone watching this who’s an NDIS support coordinator, in case you might have some participants that have only funding for support workers, basically for an intensive care patient, you should absolutely talk to us because we wouldn’t be talking to you and we wouldn’t be in business if there wasn’t any funding for specialist nursing care through the NDIS, for a ventilated and a tracheostomy client.

If you look on our website, there’s a section, the Mechanical Home Ventilation Guidelines, which are evidence-based and you will actually see there that the evidence not only suggests, quite frankly, demands intensive care nurses in the home with a minimum of two years critically care nursing experience to make it safe.

Again, case in point, we know of patients, adults and children, that have passed away under the care of support workers with tracheostomy or ventilation because they couldn’t manage a medical emergency, which makes perfect sense for anyone that has worked in the intensive care world.

So, just be very mindful as an NDIS support coordinator about what your client needs, and we would love to talk to you. If you have a client that needs the specialist level of care, we can provide you with a nursing assessment. We can also help you with the advocacy with the NDIS because we’ve been there, done that many, many times.

Now, another thing that I quickly wanted to talk about, Dionne, especially in the pediatric world, I can tell you from my experience what sort of conditions we have been looking after, especially with pediatrics. Can you talk about the conditions that you think most of our clients would benefit from our service?

Dionne:  Look, I think there’s definitely the syndrome, so like central hypoventilation syndromes, syndromic situations where children are born with diaphragmatic hernia that is not repaired to the degree that they can survive without say ventilation overnight or while they’re sleeping. Definitely children with MND (Motor Neuron Disease), SMA (Spinal Muscular Atrophy), or the different spinal atrophy type scenarios. Unfortunately, those that all people end up usually requiring some source of non-invasive or invasive ventilation during their disease progress.

Lots and lots and lots of children over my career that I’ve looked after that have got tracheal stenosis and damage to the trachea through ingestion. So, a lot of those little people grow and live relatively long lives given they still had these things. I recall when I was a baby ICU nurse looking after a newborn baby with a, it’s like a neurological disorder that grew tumors, and their tumor was squashing the windpipe.

That young man came back at 16 for some kind of follow-up surgery and it was mind blowing to me that I looked after this little baby and this big, striking young 16-year-old. He still had his tracheostomy, he still had the actual disease process, but he was living his best life and that was really through the advocacy of his mother actually demanding that, not only that she was given proper training and given proper support in the home environment. This was back in the day mind you. But also she stayed upon herself to go to the regional and rural hospital facilities that were close and trained the nursing staff there on caring for the specific needs of her son. So, kids really can make a difference.

Patrik: Yeah, absolutely. For any parent watching this, I think it is also important, we want to also empower you as a parent because we don’t want to have anyone bogged down by the system or by the NDIS potentially telling you, “Oh, you can’t have a registered nurse.” Well, there’s enough clinical evidence that your child or your family member does need and will get funding for registered nurse to leave intensive care or potentially another hospital bed where you’re stuck because you have a tracheostomy or a ventilator. Don’t be bogged down by what the system is telling you. Start talking to us. We can walk you through the process step-by-step because we’ve done it many, many times.

Dionne: It’s even the clients, Patrik, that don’t have a ventilator or tracheostomies, but they have a complex seizure disorder. That means that during their recovery process or even in their management of that seizure, that they lose their capability of maintaining their own airway. I mean that is just hands down an extremely critical moment in that little person’s recovery time that somebody qualified and experienced in doing that. Pediatric ICU nurses that I’ve worked with quite often it would be a daily occurrence of some of our patients that would come in, being able to manage that emergent situation, keep you calm, keep you cool, know exactly what you’re doing, and work through that until the patient has recovered fully and no longer has an airway assistance requirement. Registered nurses are needed for that, bottom line.

Patrik:  Absolutely.

Dionne:  Critical care ones at best.

Patrik:   Yeah. No, that’s absolutely true. Maybe just to illustrate what you’ve just said, we have a client here in Victoria who’s got Rett syndrome, R-E-T-T. She’s actually not ventilated, but she has still a critical care nurse, 24 hours a day. The simple reason for that is she has regular seizures unfortunately, and she also stops breathing quite regularly. When she’s seizing, she sometimes vomits. So, she’s at high risk of aspiration and more than once she did aspirate when she has a seizure and vomits.

So, like you said, yes, whilst we are predominantly specialized on ventilation and tracheostomy in the home, there is the exception to the rule where you might think, “Oh, my child, my family member doesn’t have a ventilator, doesn’t have a tracheostomy.” But they might have complex seizure management issues, they might have an unstable airway even without a tracheostomy.

Dionne:  There’s also that group of clients, Patrik, that we look after that are, whilst they have a ventilator in the home, they’re on a slow wean program. So, the doctors have decided that they won’t need that ventilator forever. So, we help them by slowly weaning over a long period of time, but in the home environment where everyone can continue to try and live their normal lives. Then, when the person’s ready, they can go back to the hospital environment, have their tracheostomy removed in the safety of the hospital, and their post care’s done and then quite often we don’t need to do much more care for them at Intensive Care at Home as such. That’s really the positive outcome.

Patrik:  Yes, absolutely. I can give two case studies here as well. So, we’ve had two, there would’ve been two 18 months old babies at the time. Both were prem babies and they spent their first year in NICU and then in PICU with a tracheostomy on a ventilator. They then eventually went home with our service. Both would’ve been weaned off pressure support at home and about between six to nine months at home, they would’ve been decannulated. So, real success stories.

Dionne: Absolutely.

Patrik: Again, if you’re watching this and your baby or an adult patient as well, is a slow respiratory wean, meaning it’s slow to wean them off the ventilator, you should absolutely contact us. Or again, if you’re in hospital, if you’re in ICU watching this, you are in a situation like that, your beds are full, you need empty beds, please contact us. We can help you with all of that.

Dionne:  Absolutely.

Patrik:  Yes. The other thing we should mention now in Queensland is we are now also on the preferred provider list for NIISQ, which is the motor vehicle accident insurance in Queensland. So, if you’re falling under that scheme and you need help, you can contact us as well.

Dionne, any final words?

Dionne:  No, I’m just loving my job. I’m happy at work. This is a dream come true. Everyone that I’ve met within the company, extremely happy and positive people, and it’s a nice environment to be in and thus, hopefully, it’s a nice environment for all of our clients and their families to deal with as well. So, thank you again for the opportunity.

Patrik:  Yeah, no, thank you. It’s great to have you on board and you’re coming with so much industry insight. I guess you’re just connecting the dots or I think we’re all in our world really, we’re just connecting the dots. We’re all intensive care ED professionals, just connecting the dots, seeing what works in a hospital, but also seeing what doesn’t work in a hospital and filling the gap in the community. That’s at the end of what it’s all about.

Dionne:  Yeah, absolutely. I agree.

Patrik: So, thank you, Dionne. We are very lucky to have you. Dionne, how can people find you?

Dionne:   So, they can contact me on my email, which is [email protected] or they can contact me on my phone number, which is 0436-417-225.

Patrik: That’s wonderful. Okay, well thank you so much, Dionne.

Now, if you are watching this, and again, if you are an NDIS support coordinator and you know of participants that can benefit from our service, we encourage you to reach out to us.

If you are a health professional working in intensive care or in any related specialties and you need help with freeing up your exit blocks, please contact us at intensivecarehome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].

If you are a family member or a patient yourself, you are stuck in ICU and you can contact us, please do so. If you are at home already and you are now wondering whether you could have and need more support, I encourage you to reach out to us as well.

If you are a critical care nurse with a minimum of two years ICU or critical care experience looking for a career change, we have jobs in Victoria, New South Wales, and Queensland. Please contact us as well.

If you are an intensive care specialist or ICU consultant and you are interested in our work, I encourage you to reach out to us as well.

If you like the video, give it a thumbs up, subscribe to my YouTube channe for regular updates around the topic Intensive Care at Home, and share the video with your friends and families as well.

Thank you so much for watching and I will talk to you soon.

Take care.

Dionne:  Bye.

Patrik:  Bye.

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.

Intensive care at home Case studies

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, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.

www.intensivecareathome.com/careers

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.

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.