Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults& Children with Tracheostomies by improving their Quality of life and where we also provide tailor made solutions to hospitals and Intensive Care Units to save money and resources, whilst providing Quality Care!
In the last blog I shared a newspaper and also online article about one of our clients
You can check out last week’s episode by clicking on the link here.
In this week’s blog, I want to share the story of Dion Detterer a young man with muscular dystrophy. He’s been ventilated with tracheostomy for 14 years and he has been fearing for his life for a long time because he only gets care with support workers and not with Intensive Care nurses.
Dion and his wife Estella have been first enquiring about our INTENSIVE CARE AT HOME service in April last year and since then we have supported him in his fight to get the care with Intensive Care Nurses anybody with ventilation and tracheostomy needs to stay alive and live a good quality of life.
Working with Intensive Care nurses in the home for ventilated Patients is best international practice as is documented on our website for the MECHANICAL HOME VENTILATION GUIDELINES.
Therefore Enable NSW- who only funds support workers for Patients on life support at home- as is documented in the article below, is trying to cut corners by saving money and is therefore risking lives. Unlike our third party accredited INTENSIVE CARE AT HOME service, there is no quality control unfortunately when it comes to support workers in the community looking after Patients on life support.
You will see below in the article, that Dion and his wife Estella want a quality service looking after him and not untrained staff.
Dion’s plight was documented in the Sydney morning herald a couple of weeks ago.
Dion’s fight to overcome muscular dystrophy so he can continue helping others
Dion Detterer is a self-confessed nerd, a Star Wars aficionado who for the past few years has been tackling a PhD in computational biology to find answers for “people with diseases that defy genetic explanation”.
But right now, the 39-year-old’s focus isn’t on completing his doctorate, it’s on staying alive.
“I just want to live my life, stay alive and contribute to the community,” said Mr Detterer, whose head is rotated 80 degrees to the left and whose arms are permanently bent inwards.
Dion’s fight for life
Dion Detterer suffers from muscular dystrophy and needs 24 hour ventilation to stay alive. He says his support network has become plagued by inadequacies.
Mr Detterer was born with Ullrich congenital muscular dystrophy, a genetic condition that has caused his muscles to weaken and waste. When he was 25, he suffered a brain haemorrhage and was moved to full-time ventilation via a tracheostomy.
He didn’t let his disabilities stop him from walking his own “hero’s journey” a la Star Wars – receiving a university medal, starting a PhD, and marrying Estella, a full-time chef.
In 2003, the NSW government granted him a care package that included 24-hour care by registered nurses. But two years later, the nurses were replaced with unqualified support workers, and Mr Detterer said the standard of care deteriorated to the point he now believes his life is at risk.
Dion Detterer’s wife Estella adjusts his tracheostomy tube, which he needs 24/7, at their Blue Mountains home.
Photo: Wolter Peeters
With the NSW health system already accounting for nearly a third of the state’s budget, his situation raises uncomfortable questions about how to balance the unquestionable needs of an individual with those of the wider community.
Mr Detterer said there were large gaps in the 24-hour roster and alleged some of the Southern Cross-employed support workers had behaved inappropriately, allegedly drinking alcohol prior to a shift, smoking marijuana, and even asking his wife for a massage.
“Up to 90 hours are unfilled each fortnight and my wife can’t cover the gaps because she’s the breadwinner keeping us afloat with the mortgage,” he said.
NSW Health Minister Brad Hazzard says they’re working to find “some sensible balance” to improve Dion Detterer’s situation.
Photo: Andrew Quilty
“Most of the support workers aren’t suitable and can’t operate ICU-level equipment. One couldn’t identify the tracheostomy kit while I was suffocating and my wife had to race in her car just to get to me to save my life.”
Out of desperation, he wrote to Health Minister Brad Hazzard last year asking for registered nurses so he could continue to “contribute to society in a meaningful way – as a researcher and a developer in the field of genomics and, more importantly, as a husband and son”.
A couple of months later, a case conference with representatives from EnableNSW, which runs the Home Ventilation Program, Southern Cross, Muscular Dystrophy NSW and NSW Health was held. While a plan of action was drawn up, nothing changed.
Dion Detterer was born with muscular dystrophy.
Photo: Wolter Peeters
“I want my care to be clinically and legally appropriate, I want to know that I am going to be alive tomorrow if something goes wrong,” he said.
“I believe they’re cutting corners and, while I understand the budget is very tight, they’re risking people’s lives.”
Mr Hazzard told Fairfax Media the cost of caring for Mr Detterer was $400,000 a year and, if registered nurses were provided, “it would be a lot more expensive”.
He has checked with HealthShare NSW, which runs EnableNSW and contracted Southern Cross, and said the care provided to Mr Detterer was consistent with what was being delivered across Australia.
“It’s a challenging balancing act – the service must be adequate and appropriate but we also have to recognise the cost is very high to taxpayers,” Mr Hazzard said.
“Nevertheless, I’ve asked them to have another look at Dion’s case and see if there’s anything we can do to find … some sensible balance that will help him move forward with his life.”
Southern Cross spokeswoman Barbara Merran said it had no knowledge of a support worker drinking before a shift but was made aware of someone smoking marijuana during one.
She said this worker immediately underwent drug and alcohol testing and the results were clear. He was still removed from Mr Detterer’s program.
“This unsubstantiated accusation has caused great distress to the support worker and his family,” she said.
Ms Merran said Southern Cross provided quality care, made evident by the fact Mr Detterer had not been admitted to hospital for a long time.
“There would be no gaps in Dion’s roster if he had accepted the two support workers we recruited [but] we are continuing to take steps to improve the stability of Dion’s roster through ongoing [job] advertising.
“Southern Cross continues to work with Dion, his family, the funder and other parties to try and address Dion’s concerns.”
PhD supervisor Professor Paul Kwan, from the University of New England, said he was impressed by Mr Detterer’s intellect and ability to quickly pick things up.
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He said he hoped Mr Detterer could finish his “high risk and high yield” project, which involves using computer simulations to study how genetic variations are maintained or introduced across generations.
Mr Detterer said he would be able to complete it in a year if he had the time and head space to dedicate to it.
“I’ve been programming since I was eight and my passion is in maths, science and research,” he said.
“My whole life was heading towards this, and it’s all slipping through my fingers because I just can’t manage a doctorate and the stress of being in survival mode with my care.”
If you want to find out how we can help you to get your loved one out of Intensive Care including palliative care or Long-term acute care (also nursing home) or if you find that you have insufficient support for your loved one at home on a ventilator, if you want to know how to get funding for our service or if you have any questions please send me an email to [email protected] or call on one of the numbers below.
Australia/New Zealand +61 41 094 2230
USA/Canada +1 415-915-0090
UK/Ireland +44 118 324 3018
Also, check out our careers section here
We are currently hiring ICU/PICU nurses for clients in Melbourne, Sunbury and in South Gippsland/Victoria.
We are an NDIS, TAC (Victoria) and DVA (Department of Veteran affairs) approved community service provider in Australia.
We have also been part of the Royal Melbourne health accelerator program for innovative health care companies earlier this year!
Thank you for tuning into this week’s blog.
This is Patrik Hutzel from INTENSIVE CARE AT HOME and I see you again next week in another update!