March meeting – presentation to Day of Difference
At our march meeting tonight Burwood Rotaract will present the proceeds from our most recent trivia night to our chosen charity, the Day of Difference Foundation.
The Day of Difference Foundation’s mission is to reduce the incidence and impact of children’s injury in Australia.
Well over 50,000 children are admitted in hospital each year with an injury. There is currently no national data available to understand the reason for these injuries, where they are sustained or the extent of the injury. Without this information, it is not possible to establish a targeted accident prevention strategy.
Of greater concern is that no one has investigated the terrifying journey undertaken by the parents and siblings of children who sustain critical injuries. These are life changing injuries such as brain and spinal damage, burns and loss of limbs.
CEO of the Day of Difference Program, Charles Dennis, will attend our meeting tonight to accept the funds on behalf of the foundation and to give us some more information about their very important work. He has provided some information about one of their programs below:
The Paediatric Critical Injury Research Program
The Paediatric Critical Injury Research Program, a partnership between the Day of Difference Foundation and the University of Sydney School of Nursing, is a world first initiative that will describe, for the first time ever, the incidence of children’s injury in Australia and the impact the injuries have on the children and their families up to five years after the accident.
The total cost of the program is now $1,650,000. $1,550,000 of the funding has already been secured by the two partners including $192,000 from the NSW Agency for Clinical Innovation, $501,000 from the National Health Medical Research Council and $644,226 from the Day of Difference Foundation through the generosity of our supporters.
The program commenced in March 2013 and will take six years to complete.
Lead by Associate Professor Kate Curtis, this program is gathering the evidence to inform change to the system of care for these families.
Kate is Associate Professor and Principal Research Fellow at Sydney Nursing School and Clinical Nurse Consultant in Trauma at St George Hospital, Sydney.
Put simply, she wants the way the health system looks after patients to be the best it can be.
For the past 17 years, she has been a trauma nurse at St George Hospital, a major trauma centre. Her role is to attend trauma resuscitations then coordinate patient care through the ICU, wards and until they go home. She tells me it is a great job. I say she is highly respected. I also say she has an intimate understanding the frustrations of a health system populated by talented, caring and hardworking staff who know more can be done to improve outcomes.
Kate joined the Sydney Nursing School, at the University of Sydney 7 years ago, and alongside her clinical role, she investigates and implements better ways to deliver care to trauma patients and to those caring for them.
Put simply, she wants the way the health system looks after patients to be the best it can be.
In her nursing career she has been part of several resuscitations of catastrophically injured children. As you would appreciate, injury has devastating long term consequences. Unlike many other diseases, where progression and diagnosis takes time, injury is immediate. In a blink of an eye life can change forever for the child, siblings, parents and the rest of that child’s family and community. Often, there are other family members injured, the family unit is torn, generally displaced far from home, and there is a huge amount of uncertainty about the future. This is what drives Kate to generate the evidence for injury prevention and to improve the way health care is delivered.
I don’t use the word ‘evidence’ lightly and producing evidence for change isn’t enough.
Kate has designed our research program based on the principles of knowledge translation. She begun with the end point in mind, she is producing evidence that is useful, not just interesting, and, she is seeking outcomes that will last.
This is no small undertaking and at the beginning of 2013, she joined forces with the Day of Difference Foundation and with colleagues from the Universities of NSW and Canberra, to form the Paediatric Critical Injury Research Program.
Kate and her very talented team have begun to close the three major gaps in paediatric trauma knowledge. Closing these gaps is really important because they impact child and family outcomes, hinder injury prevention and prevent health policy change.
I’d like to briefly explain these three gaps, and what she has done over the past two years to begin to address them.
The first gap is – where and why childhood injury is occurring in Australia.
Injury is the leading cause of death in children aged 1-15 – double that of cancer. Funding for injury research in 2014 was less than a third of that for cancer, a third of cardiovascular and, less than half of diabetes research. Injury in children results in over 1,000 hospital admissions a week, double that of cancer, diabetes and cardiovascular disease combined.
Despite these huge numbers, we don’t know where or why these injuries are occurring, which means we can’t work towards preventing them. If you wanted to find out how many children were severely injured because they fell out a window, were injured on a quad bike on a farm, or hit by a car, you can’t. There has been no Australia wide research or report on severe childhood injury, despite it being the cause of one of the highest rates of years of healthy life lost due to disability in this country.
To address this gap, led by Dr Rebecca Mitchell from UNSW, we have started a major Australia – wide data linkage project that will define and describe the incidence and causes of severe paediatric injury over the past 10 years. This hasn’t been done before, because it is “too hard”. Getting approval to access the data took the team over 12 months and 50 ethics applications. They will have all the data from all states and territories of Australia by the middle of 2015, and then, will for the first time in this country have incredibly powerful information to target specific areas for injury prevention priority and raise awareness of the plight of injured children and their families.
But, injury will keep happening, and when it does, we have to make sure the system that delivers care to severely injured children and those with injuries for life is the best that it can be, which leads us to the second major gap in childhood injury.
If a child is severely injured, where should they go and how do we make sure they get there?
NSW research in 2010 found that if a severely injured child did not receive care at a paediatric hospital, they were 3 to 6 times more likely to die. We don’t know why this is, and ambulance policy across Australia is inconsistent, some haven’t been changed since 1995. So if a child or grandchild is injured on the roads in NSW tomorrow, there is no guarantee that they will get taken directly to the hospital where they will get the care that they need.
To change this, and to make sure that no matter where a child is injured they have the same opportunity for survival, mid this year Kate’s team are starting a review of the care received by all children who were severely injured in NSW over the previous two years. They are looking at where the injury occurred, how the child got to hospital, how long it took to get there, the quality of care that they got along the way to the hospital, and linking all of those things to their 12 month functional outcomes and quality of life.
This is a complex study. Kate has put together a team of expert surgeons, emergency physicians, nurses, health economists, biostatisticians and a forensic pathologist to do this.
One of the things she is particularly excited about with this project is that it received only one of eight NHMRC partnership grants in October last year, the $501,000 I mentioned earlier.
Importantly, this project includes the implementation of the changes to the health care system recommended by this expert team, and, to then evaluate these changes. This is guaranteed to happen because the partner organisations in this project include NSW Ambulance, the NSW Ministry of Health, NSW Kids and Families and the Australian Trauma Quality Improvement Program. These organisations that have committed to implementing the recommendations represent the key agencies that deliver or support paediatric trauma care at each stage of the trauma journey, from injury prevention to reintegration. Together, we can ensure a change in paediatric trauma policy in NSW and then nationally.
The final gap that the Paediatric Critical Injury Program is addressing is how best to support the family of the severely injured child.
The research team have reviewed over 3,000 published articles to find out if there is evidence that points to the best way to organise care for children and their families throughout their trauma journey. There were many ideas of what people think will work but the team could not find one model researched that intervened across the whole journey.
They then asked nearly 200 clinical staff at the paediatric trauma hospitals in Sydney, Melbourne, Adelaide and Brisbane what they think needs to improve for the families of severely injured children. Amongst many other recommendations, they have highlighted that some families can see up to four or five different social workers through the admission – imagine having to retell your story and develop a relationship that many times when you are tired, stressed and just really scared.
To address this, the first ever major trauma family support coordinator has started at the Women and Children’s Hospital for a 12 month trial as part of the program.
The family support coordinator will meet the family in the resuscitation room and be their go to person for up to 12 months. We will document how and why this role works, and what difference it makes.
Then most importantly, we need to ask the parents what they need. So, led by Prof Kim Foster from the University of Canberra, Kate has started a study that follows 30 families for two years after their child has been severely injured. We are listening to their stories, experience and investigating their unmet needs. To date, five parents have been kind enough to be part of that study, they overwhelmingly want to try and help other parents, which of course is why this Foundation was started by the parents of Sophie Delezio in the first place.
All the useful information in the world and the best implementation strategy doesn’t guarantee change. But the partnership between the University of Sydney and the Day of Difference Foundation is very special and well placed to close the three gaps and change things for the better.
Our recommendations will become reality because of our engagement and because the agreements are with the organisations and institutions who have the power to make change.
Childhood cancer survival rates have improved by 80%. It is our goal to translate this to childhood injury, and to improve the long term physical, emotional and social outcomes of severely injured children and their families.
This includes children who sustain injuries for life. Injuries of this nature have the same potential impact on the child and the family, yet injury assessment ratings and through them State and National statistics hide the truth about the enormity of the challenges facing our nation in regard to childhood injury.
It is time for the Federal Government to action the observation they made 10 years ago when it identified child’s injury of such public health importance that it is a priority injury issue. But nothing has happened.
This country needs a charity to represent the interests of injured children and their families. The Day of Difference Foundation is the only charity in Australia that is standing up to represent this group. We will respond to the evidence based research by delivering, facilitating or funding informed interventions through collaborations and national awareness campaigns.