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How a Client at Home with Cerebral Palsy, Tonic Clonic Seizures, Lung Disease, BIPAP Can Be Safe!

If you want to know what level of nursing care the cerebral palsy client needs when they’re on BIPAP with seizures and other medical complexities, stay tuned. I’ve got news for you.

So today I actually want to showcase one of our other cerebral palsy clients, what this client gets, and what their clinical condition is. I also want to highlight what actually the shift of the staff that we are working there looks like, so you can actually see that, of course, a client with cerebral palsy on BIPAP with epilepsy is at risk of dying if support workers are looking after them. With all due respect to support workers, they might have worked in a supermarket last week and stocked on shelves, and now they’re being asked to look after basically critical care clients. It is absolutely ludicrous.

But let me illustrate today what a client with cerebral palsy looks like, what does shift looks like for one of our staff members.

So, one of our clients has cerebral palsy, refractory epilepsy, spastic quadriplegia, recurring chest infections, lung disease, bronchiectasis, wheelchair bound, vision impairment, they are PEG fed or gastrostomy fed, they need regular deep suctioning, and they are on intermittent BIPAP for respiratory support. They’ve also got excessive scoliosis which often impacts on their respiratory function and they’re often respiratory impaired because of this excessive scoliosis. Uncontrolled seizures requiring oxygen, high risk of fractures due to osteopenia, and high risk for pressure sores.

Now, let me also read out the seizure management plan for a particular client.

“You can actually see what is needed if this particular client experiences clusters or three or more tonic drop seizures in the space of 30 minutes, administer 5 mg Clobazam via PEG tube.

Tonic-clonic seizure, if this client has a tonic or generalized tonic-clonic seizure, loss of awareness, body stiffening, followed by jerking on one of more limbs, plus minus eye deviation, and if still seizure is ongoing at 5 minutes, administer Midazolam 2.5 mg, apply SPO2 (oxygen saturation) monitor, place BIPAP mask on and turn on machine, ensure oxygen tubing is connected to oxygen cylinder, valve is open and turned to 2L.”

The seizure plan continues but the point here is this, if this patient was in the hospital, it would trigger a medical emergency, and the ICU team would come running. The NDIS was wanting support workers to look after the very complex clients.

Now, I also want to read out a shift report from one of our nurses working there. You can actually see what a shift looks like, and you will see that under no circumstances can a client be looked after by support workers in a situation like that, and that’s why the other client passed away because the NDIS has been absolutely negligent. I believe the bureaucrats at the NDIS need to go to a court and need to be brought to justice for their negligence.

So, let me read out the shift report from our staff member for the client that I just read the medical history and the seizure management plan.

“So, the client can maintain the airway. However, an NPA (Nasopharyngeal Airway) and then Guedel airway was inserted for frequent deep suctioning of increased thick clear creamy secretions.”

Now, the management of a nasopharyngeal airway, Guedel airways, and deep suctioning is a critically care nursing skill. It is not a general registered nurse nursing skill, let alone a support worker skill.

Then the nursing report continues,

“Hypertonic saline nebulizers were given. The client is saturated during the afternoon nap, corrected with suction, then placed on the BIPAP.”

That is exactly what’s happening in the intensive care unit, and we are doing that at home. This can’t be done by a support worker. This is absolute an utter madness by the bureaucrats of the NDIS to allow that to happen.

Then the nursing report continues,

“Increased flickering and six atonic drop seizures were witnessed. PEG site changed with over granulation noted but skin breakdown has improved. Stage 1 pressure injury to the sacrum remains unchanged. The client did not void and bowels not opened this shift and abdomen slightly distended. All feeds, flushes, and medications were dispensed. The client showed signs of discomfort with increased tummy smacking during the routine walk which settled. Client enjoyed playing with instruments during most music therapy with increased engagement. Client was settled during the afternoon nap.”

Now, that’s one report. You can clearly see that this is clearly outside the scope of support worker.

Let’s look at the other report from same client, different shift.

“Nasopharyngeal and oropharyngeal, which is the Guedel airway suction, required every 45 minutes for increased production and thickness of secretion.”

Now, if that’s not being done, the client may desaturate and go back to hospital pretty quickly or if they don’t go back to hospital on that day, they will end up with a chest infection or pneumonia and potentially die. This is exactly what’s happened to the other client.

So, then the report continues,

“Hypertonic saline nebulizers are stable but desaturated during afternoon sleep, needing BIPAP and suction to correct flickering noted. The tonic drop seizures, nil absence seizures, PEG leaking, mildly over granulation to surrounding stoma, surrounding skin erythematous, large bowel action, abdomen slightly distended, ongoing but improving Stage 1 pressure sore, some signs of discomfort during monitoring routine tummy smacking.”

Clearly, airway management at home, seizure management at home, but also pressure area management, PEG tube management, that requires critical care nurses, not support workers, not even general registered nurses.

So, you can also see how our nurses are keeping our clients safe, which can’t be done by support workers. That’s why so many NDIS participants have now died because NDIS is ignoring clinical advice from either highly skilled registered nurses and critical care nurses, and they’re also ignoring doctors’ letters.

Bill Shorten, I appeal to you that you get your house in order before more NDIS participants are going to die. It is absolutely negligent what’s happening at the NDIS, and it needs to stop.

Now with Intensive Care at Home, we are providing 24-hour critical care nursing at home, and we provide therefore a genuine alternative to a long-term stay in intensive care for ventilation, tracheostomy, Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure), ventilation without tracheostomy, tracheostomy without ventilation, Home TPN (Total Parenteral Nutrition), and home IV potassium infusions, home IV magnesium infusions. We’re also providing palliative care at home. We’re also providing ventilation weaning at home and tracheostomy weaning at home. We’re also providing central line management, PICC (Peripherally Inserted Central Catheter) line management, as well as Hickman’s line management. We’re also providing nasogastric tube management and PEG tube management at home.

We are also sending our critical care nurses into the home for emergency department bypass services. We have done so successfully as part of a program at the Western Sydney Local Area Health District, they’re in-touch program, saving approximately $2,000 per patient that we keep at home instead of going to ED. We’re also in a position to cut the cost of an intensive care bed by around 50%. An intensive care bed costs around $5,000 to $6,000 per day. Our service costs between $2,500 and $3,000 per bed day and we’re freeing up the most sought-after bed in the hospital, which is the ICU bed, and we’re improving the quality of life and in some instances, quality of end of life for our patients and their families. So, it’s a win-win situation all around.

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

We are the only service provider in Australia that has achieved third-party accreditation for Intensive Care at Home nursing in 2024. We’ve been achieving this level of accreditation since 2012. No other provider has achieved this high level of accreditation in the community and has created more intellectual property for Intensive Care at Home than we have. That puts us in a position to employ hundreds of years of critical care nursing experience combined in the community. No other service provider employs a higher skill level in the community than we do, which enables us to look after the highest acuity client, adults and children, in the community in Australia. No other provider in Australia can take on a higher acuity safely in the community than we can.

If you’re at home already and you’re watching this and you realize that you don’t have the right level of support, I will give you a tangible example here. One of our first clients over 10 years ago was a client who was at home on a ventilator with a tracheostomy with a support worker model, 24 hours a day. Of course, support workers could not keep this client at home on a ventilator with a tracheostomy.

It’s like flying the airplane with a cabin crew instead of the pilot because this client was at high risk of dying and he was going in and out of ICU because support workers simply don’t have the skills, the experience, knowledge, professionalism, how to look after the ventilator and the tracheostomy client. It is an intensive care and critical care nursing skill.

Then eventually, the client found us, and we were proving our concept with this client very fast within a few days, really. When we worked with the client and we sent him intensive care nurses 24 hours a day, he never ever went back into ICU ever again and he was safe. We can do the same for you if you’re not safe at home, including the advocacy that goes along with it to get the relevant funding. We have always successfully advocated for our clients. Otherwise, we would not be in business.

That’s also why we are providing Level 2 and Level 3 NDIS Support Coordination. We have a team of NDIS Support Coordinators, and they have a wealth of knowledge. I will put into the written version of this blog, an interview that I’ve done with Amanda Riches, one of our NDIS Support Coordinators. We’re also providing TAC case management, WorkSafe case management in Victoria.

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

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

I have a disclaimer though because we’re offering a tailor-made solution for our clients, which includes regular staff, our clients want to have the same staff coming over and over again because they are so vulnerable and so special and that’s why we need regular staff. So, if you’re looking for agency work where you can come and go, this is not the right fit for you. We are looking for consistency and our clients are looking for consistency. So please, only apply with us if you can give us regular and consistent availabilities for shifts and if you’re really keen on building relationships with us and with our clients, otherwise it’s not going to work.

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 as well. 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. Even if you do pay for it, it’s much more cost-effective than what you’re paying in ICU or ED for.

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

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 simply 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 leave your comments below what you want to see next, what do you think about today’s topic, and what 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.