Rory Staunton Foundation Honored with Special Award at Global Sepsis Awards

Global Sepsis Alliance, Awards, Rory Staunton Foundation, Honored

Global Sepsis Alliance, Sepsis, Rory Staunton Foundation, Award, HonoredThe Jury for the Global Sepsis Awards today announced the Rory Staunton Foundation as the recipient of a Special Global Sepsis Award for “exceptional efforts with a global outreach and the unique success to increase awareness for sepsis on all levels of the society.”

The Awards honor excellent sepsis awareness and education initiatives and recognizes major achievements of governments, organizations and individuals, consistent with the aims of the World Sepsis Declaration and World Sepsis Day movement. The Award Panel is comprised of internationally recognized experts in patient safety and sepsis management. We are delighted to accept the award and congratulate our fellow honorees on their successes.

 

Rory’s story featured in USA Today

Story, Rory Staunton Foundation, Sepsis Awareness, Sepsis, USA Today

The Rory Staunton Foundation’s efforts to end preventable deaths from sepsis were featured in a special Patient Safety section of USA Today on March 31.

Our friends at Patient Safety Movement were responsible for the eight-page pull out section in Thursday’s paper. They are doing great work to confront the issue of preventable deaths in U.S. hospitals and share our commitment to ending the sepsis crisis, which results in so many of these needless deaths.

How One Boy’s Preventable Death is Fueling the Fight Against Sepsis

By
Published by USA Today, March 31, 2016.

More than 1 million Americans get sepsis annually, and over 258,000 die from it.

Sepsis is the leading cause of death in hospitals and the eleventh leading cause of death overall in the United States, killing more people annually than AIDS, prostate cancer and breast cancer combined.

Those who don’t die often experience dramatic, life-altering consequences including losing limbs or organ dysfunction. Sepsis is also expensive, accounting for an estimated $23 billion annually in national health care expenses.

“‘Like so many others, Rory’s death from sepsis was preventable. Lack of awareness of sepsis, and its signs and delays in diagnosing the condition, contribute to the  staggering mortality rates.'”

Rory’s story

Sepsis took the life of Rory Staunton, a healthy 12-year-old boy who contracted a fatal case of the disease in 2012 from a seemingly innocuous scrape on the elbow. Since then, his parents Ciaran and Orlaith Staunton created the Rory Staunton Foundation, which works to increase awareness of the dangers of sepsis and improve hospital protocols.

“Like so many others, Rory’s death from sepsis was preventable. Lack of awareness of sepsis, and its signs and delays in diagnosing the condition, contribute to the  staggering mortality rates.”

ENSURING PREVENTION: With Rory’s Regulations—first adopted by the state of New York—hospitals must ensure that the best practices for early identfication and treatment of sepsis are implemented.

Radiating reform

To make sepsis diagnosis a priority in hospitals, the Stauntons have helped to create Rory’s Regulations, which require hospitals to adopt best practices for the early identification and treatment of sepsis. The initiative requires hospitals to communicate critical test results to parents before a child is discharged from the hospital.

New York state adopted Rory’s Regulations in 2013.

Rory Staunton Foundation scores major congressional victory in sepsis fight

Congressional, Rory Staunton, congessional, Kathleen Staunton, Fergus O'Dowd

By James O’Shea
Published by IrishCentral, March 11, 2016.

As the fourth anniversary of 12 year-old Rory Staunton’s death approaches on April 1, his parents Ciaran and Orlaith scored their most important – and personal – congressional victory to date when both the House and Senate Appropriations Committees chose to focus significant attention on the issue of sepsis in the all-important 2017 Appropriations Bill.

The Stauntons are the co-founders of the Rory Staunton Foundation for Sepsis Prevention, an organization they established following the tragic death of Rory from sepsis in 2012. Since then, they have devoted themselves to raising awareness of the condition and to securing federal resources to combat the sepsis crisis, which kills between 250,000 and 500,000 Americans each year and costs the government more than $23 billion annually.

Throughout the 2017 budget process the Rory Staunton Foundation has redoubled its efforts to educate congressional representatives about the devastating impact that sepsis has on American families and on the national budget. They were joined by members of the National Family Council on Sepsis, a network of families impacted by sepsis, who shared their stories of heartbreak with congressional leaders and committee members.

As a result of the Stauntons’ hard work and determination, both Committees included strong language to highlight sepsis as a critical issue in need of increased resources and attention.

Read more: Rory Staunton Foundation launches the sepsis Forget-Me-Not appeal (VIDEO)

The House Appropriations Bill requests that the CDC “significantly and materially increase its public awareness, outreach, and education efforts on sepsis, including health provider outreach and other related activities to improve diagnosis and treatment of sepsis.” The Senate Bill notes that, “major improvements in outcomes can be achieved but there has been no effort to educate the public or medical providers as to the signs, symptoms, importance of early diagnosis and treatment.”

“The Rory Staunton Foundation has worked diligently to ensure that sepsis receives its fair share of attention and resources from the federal government. The high profile given to sepsis, which was mentioned 89 times in the CDC’s 2017 Justification of Estimates, is clear proof that the movement to address the sepsis crisis in gaining momentum and that the voices of sepsis victims and their allies are finally being heard,” says Ciaran Staunton. “Tragically, we can never bring Rory back”, added his wife Orlaith, “but we will do all possible to prevent other needless deaths from sepsis through lack of awareness.”

The CDC, acknowledging that the issues raised by the Committee were “critical,” responded positively in its 2017 Budget Justification by committing to the introduction of public awareness campaigns aimed at ensuring primary prevention of sepsis and increased early recognition.

Read more: Dramatic new video on dangers of sepsis released by Rory Staunton Foundation

Link to original article on IrishCentral

Thank You to The Cleveland Cavaliers and to Kyrie Irving

Rory Staunton Foundation, Rory Staunton, Sepsis, Sepsis Awareness, Sepsis Education, Sepsis Prevention, NFL, Kyrie Irving
Sepsis sucks in more ways than one. For Kathleen, Rory’s sister, and all families that suffer because of sepsis deaths, their lives are changed forever.
 
Kyrie Irving’s mom died when he was four, Elizabeth Irving died from sepsis. Kyrie has always spoken about the love he carries for his mom and the strength of his family since her death. In interviews he becomes emotional speaking about her loss and she is ever present in his life.
 
The Cleveland Cavaliers and Kyrie, in response to a letter we wrote, invited us to be their VIP guests at a game in Cleveland. This weekend we flew to meet Kyrie, and other Cavalier players Matthew Dellavedova and Iman Shumpert.
 
It was a spectacular night with the Cleveland Cavaliers being very kind and generous hosts. Thank you to all the Cavaliers and in particular to Kyrie Irving for making this happen.
 
We hope that we can work together to spread more awareness of sepsis and will be publishing information about our imminent Ohio initiatives. We also want to let people know the terrible price that families pay for these “preventable” deaths. Preventable deaths are real people.

Families warn of sudden, deadly threat of sepsis – CBSnews.com

Signs of Sepsis, Sepsis Kills, Rory Staunton Foundation for Sepsis Prevention, Rory Staunton Foundation, Sepsis Education, Awareness and Prevention, Rory Staunton, Orlaith Staunton, Ciaran Staunton, Sudden deadly threat of sepsis, cbsnews.com, Ashley Welsh

By Ashley Welsh
Published CBS News, October 5, 2015.

Last December, 26-year-old Katie McQuestion of Kenosha, Wisconsin, went to the hospital with a suspected case of the flu. Four days later, she died.

Doctors told her mother, Ann Ceschin, that her daughter, a radiology technician and newlywed of three months, had contracted sepsis and died of it, though they did not know how she became septic.

“Here was a perfectly healthy 26-year-old and it happened so quickly, she turned so quickly,” Chescin told CBS News.

Sepsis is the body’s overwhelming and life-threatening response to an infection which can lead to tissue damage, organ failure and death. It can happen to anyone with any type of infection. Though most cases occur while patients are in the hospital, people can also acquire it in the community.

Dr. Fredrick Moore, chief of acute care surgery at University of Florida Health and Director of the UF Sepsis and Critical Illness Research Center, likens sepsis to the body’s reaction to a very small, but relatable intruder: a splinter.

“If you have a splinter in your hand, you get a local inflammatory response,” he said. “You get inflammation and pus, but you don’t get sick. Now, say you get a big infection, you have that same local response, but then you also have a whole body response.”

According to the Centers for Disease Control and Prevention, there are over 1 million cases of sepsis each year in the United States. Sepsis — also known as septicemia, blood infection or blood poisoning — kills more than 258,000 Americans every year, making it the ninth leading cause of disease-related deaths.

Chris Aiello of Chestnut Hill, Pennsylvania, also lost his daughter to sepsis earlier this year. He described Emily as a vibrant 14-year-old, in spite of her cerebral palsy. She developed an infection as the result of spinal fusion surgery in May of 2015. She died of sepsis days later.

emily.jpg

Emily Aiello died of sepsis at the age of 14 after contracting an infection as the result of spinal fusion surgery. Chris Aiello.

Symptoms of sepsis include the presence of an infection, as well of as at least two of the following symptoms: an elevated or lowered body temperature, a fast heart rate, a fast breathing rate and low blood pressure.

If caught early, sepsis is treatable with fluids and antibiotics. But it progresses quickly and if not treated, a patient’s condition can deteriorate into severe sepsis, with an abrupt change in mental status, significantly decreased urine output, abdominal pain and difficulty breathing. Septic shock occurs when someone has all of these symptoms plus extremely low blood pressure that doesn’t respond to fluid replacement.

Several barriers may get in the way of septic patients obtaining the care they need, including untrained hospital staff who don’t recognize the symptoms, delayed communication between doctors, and the lack of appropriate antibiotics readily available at hospitals, Moore explained.

Once a patient has been identified as septic, “the gold standard to get the appropriate antibiotics to patients is one hour,” Moore told CBS News. But in most hospitals, “processes of care are just not in place to rapidly give needed treatment. We know that once you become septic, every hour delay that the appropriate antibiotics aren’t given, the risk of morality increases.”

Aiello said his daughter Emily had a 103-degree fever and rapid heart and breathing rates. “These are classic symptoms of sepsis, but they [the doctors] waited over 14 hours to take blood to test if she had an infection. After that, it took another eight hours for the results to come back and another two hours to administer the antibiotics. A few hours later, she had coded. It was the most tragic day of my and my wife’s life.”

Like many Americans, Aiello knew little to nothing about sepsis at the time of his daughter’s death. “I had heard of the word before, but not being a medical professional, I wasn’t educated on the subject,” he said.

According to a 2013 poll by the Sepsis Alliance, fewer than half of adults in the U.S. have heard of sepsis.

Aiello, along with Ceschin and other families who have lost loved ones to the condition, are working to change that. They are members of the recently-launched National Family Council on Sepsis, an initiative of the Rory Staunton Foundation, founded by Ciaran and Orlaith Staunton of Queens, New York, in honor of their son Rory who died at age 12 from sepsis in 2012.

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Click here to watch “After losing son, family fights to shed light on sepsis”

The goal of the Council is to function as a support network for those who have lost loved ones and those who have survived the illness, as well as to educate the public about the signs of sepsis.

“We want everyone to know the signs of sepsis. We want them to be as well-known as the signs of heart attack or stroke,” Ceschin said. “Looking back, knowing everything I know now, Katie had every sign of sepsis, but the doctors never thought about it. They never thought that could be it. And because of that, it progressed and she ended up passing from it. I just never want another family to go through this.”

The Council is also working to pass a set of regulations in all 50 states requiring every hospital to adopt aggressive procedures for identifying sepsis in patients. The mandate, known as Rory’s Regulations, was instituted in New York State — the only state to adopt the regulations so far — in 2013.

Setting up protocols to identify and treat sepsis in a timely manner has already proven successful in some hospitals.

Since 2009, North Shore-LIJ Health System in the New York metropolitan area has been working to reduce deaths due to sepsis within each of the approximately 20 hospitals in their network. Overall, the system has reduced its sepsis mortality by 50 percent.

“The initial focus was to assure emergency departments were trained and educated to rapidly identify sepsis,” Dr. Steven Walerstein, Senior Vice President of Medical Affairs and Associate Chief Medical Officer for North Shore-LIJ Health System, told CBS News. “Once sepsis is identified, the next step is to get those patients highlighted and targeted to make sure they don’t get lost in the craziness of the day-to-day of the emergency department and to make sure the appropriate tests are done and the appropriate treatments given as quickly as possible.”

The hospitals took performance measurements of the lengths of time it took to test patients and treat them in order to establish and share best practices, Walerstein said. Once improvements were made in the emergency departments, those protocols were instituted in the general hospital populations.

The University of Florida Health has also set up procedures for training hospital staff to recognize signs of sepsis and get patients the needed care as quickly as possible, including a system that allows paramedics to alert the hospital that they may have a septic patient before they even arrive at the ER. As a result of those efforts, the sepsis mortality rate at the hospital has dropped from 30 percent to 10 to 15 percent, Moore said.

Additionally, the UF Sepsis and Critical Illness Research Center received a grant from the National Institutes of Health last year and is currently working on ways to prevent surviving patients from having repeat sepsis infections.

“Time, energy and commitment are required,” Walerstein said, “but it’s certainly feasible for any institution to put together a sepsis initiative to improve their management of this patient population.”

 

NBC Nightly News with Lester Holt

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Ciaran and Orlaith Staunton were featured in an NBC Nightly News report on a new study that reveals that misdiagnosis contributes to 1 in 10 patient deaths. The study concludes that most Americans will receive an incorrect or late diagnoses at least once their lives. The report is a timely reminder of the need for improved sepsis protocols that will facilitate swift recognition and treatment of sepsis and reduce deaths resulting from misdiagnosis.

The Rory Staunton Foundation is committed to ensuring that all 50 states implements robust sepsis protocols in hospitals by 2020.

http://www.nbcnews.com/nightly-news/video/study–misdiagnosis-contributes-to-1-out-of-10-patient-deaths-530461763857

He Could Be Your Child: Learn the Signs of Sepsis – from The Huffington Post

Rory Staunton Foundation, Sepsis Education, Awareness and Prevention

By Kara Lawler
Published Huffington Post Parents, September 17, 2015.

It’s raining–a hard, soaking rain. I have the windows open and the air is crisp and clean. I can actually smell the ferns hanging on my front porch. It smells like life right outside of my window, but I have just learned the details of a young boy’s death. It’s just past 11:00 a.m., and I’ve hung up the phone with tears in my eyes and a lump in my throat, saying a quiet prayer of thanks for the children waiting for me to finish the call.

Ciaran and Orlaith Staunton hung up the phone after our call with only one child to turn to, as their son, Rory, died three years ago from sepsis, a clearly identifiable disease. From a scraped arm in gym class at school, he developed sepsis, a reaction to an infection of any kind, but was not diagnosed. The scrape was minor, but bacteria entered the wound and Rory died three days after the scrape. Over 250,000 Americans die per year of sepsis, and I was shocked to learn from the Stauntons that it is the leading pediatric killer.

It’s after lunch and my small son is building a castle with his blocks near the window. He’s doing his best to keep his little sister from wrecking his creations, but it’s futile and he decides to add her into the story. It’s dark in the living room and as I turn on the lights, he tells me all about what he’s building. It’s fantastical and literary–a knight is trying to protect his fortress from the attacks of the enemy–a toddler, his sister. With the lights now on, the stage is set for a massive battle.

Rory, a bit older, loved blocks, too, and would spend hours building with them, just like my son does now. One day, on a day much like this one, his mother asked him what he was building. Already a civil rights advocate at such a young age, he answered that he was building a hospital near where Martin Luther King, Jr. was shot. His dream was that his hospital would save the life of King after the shooting that proved fatal.

My son is sitting at his desk writing a short story after dinner. His desk is red and is up against a taupe wall. The room is covered with Star Wars posters and toys now, but there are still many stuffed animals–signs that my boy is still just a little one. I’ve looked in his desk before, only to find short stories, written in very basic structure–one sentence per image. When I’ve found them, he’s told me all about them. Even at six, he has a way with words and storytelling and I can already see that he’s a writer.

Rory sat at a black desk. The walls in his room are dark blue–a color he had picked himself–and his room was decorated with pictures and models of airplanes. His passion was flying and at 12, he had already flown a plane. There are a few posters on the wall of Family Guy, a sign that he was soon to be a teenager. After he died, in his desk, his parents found a letter to the leader of North Korea. Rory was a human rights advocate, even at 12, and in his free time, he drafted letters to enact change.

We’ve just returned from our walk and my son talked to everyone we saw. It makes for a slow walk sometimes, but I allow him to be social when he feels called to be. My son is only six and is generally the smaller boy in a class, but he already has a way with people. I watched him at his kindergarten orientation, and he went up to each child he met, introducing himself. Hanging back, I allowed him to make his own introductions and to find his own place in a sea of strangers. He’s quick to sit with someone if they are alone and even at six, he’s very empathetic. A crowd isn’t daunting to him in the same way that making a new friend is exciting.

Rory was 12 when he died, but was known as a friend to many. Always the one to take a student under his wing, he tried to make people new to his school or town feel welcomed. A recent transfer student from Japan, whom Rory had befriended, wrote a tribute to Rory after his death and it was clear that Rory was an amazing friend. At 5’9″ and 160 pounds at age 12, he was generally the tallest kid in his class and instead of using his size to intimidate, he was the class helper–the big teddy bear of a kid with red hair and freckles.

It’s right before bed and my two children are playing. My son is chasing my daughter from the playroom to his bedroom and she is squealing at the pursuit. That’s how they play together–just running from place to place. I gather them into my lap and read them a story before we start the routine of bedtime. My son is reading now, so sometimes, he reads the story to us.

Rory and Kathleen, Rory’s beloved sister, played together, just like my children are now. They were best friends–just like my children are. One of their very favorite things to do was to ride their bikes through the community Rory so loved. At age seven, Rory even petitioned and helped raise money for a new bike path in his community. As small children, after the bike rides, at the end of the day, his mother also gathered them into her lap for a bedtime story and as Rory got older, he would also take turns reading.

When I spoke to the Stauntons, I couldn’t help but hear my son in Rory, my daughter in Kathleen, Rory’s younger sister. Rory could be my child. Rory could be your child. The only real difference is that we get to put our children to bed tonight. Rory’s bed is empty.

Tragically, Rory died of sepsis and it was preventable, but like most parents, before my conversation with the Stauntons, I didn’t know much about the disease. According the Sepsis Alliance’s website, sepsis “is the body’s overwhelming and life-threatening response to infection which can lead to tissue damage, organ failure, and death” (www. sepsis.org). The infection can enter any cut, small or large, and Rory’s cut happened in gym class when he scraped his arm. The symptoms are easily identifiable, but mimic the flu. With early recognition, a complete recovery can be made, but without recognition, death is inevitable. Rory should not have died, and education about sepsis is crucial to prevent further needless deaths.

Please, honor Rory and protect your children by learning the signs of sepsis: fever, dizziness, cold and mottled skin, chills, pain, and shortness of breath are just to name a few. More symptoms are found here.

September is Sepsis Awareness Month Please visit the Rory Staunton Foundation for more information about sepsis prevention, education, and their annual forum.

Let’s save lives. Become educated about sepsis. Learn the signs. Protect your child.

 

http://www.huffingtonpost.com/kara-lawler/he-could-be-your-child-le_b_8131262.html

‘Could it be sepsis?’ The four words that save lives

Rory Staunton Foundation, Sepsis Education, Awareness and Prevention, Rory’s Regulations

By Cian Traynor
Published, Irish Times, July 14th, 2015.

 

In March 2012, 12-year-old Rory Staunton cut his arm during a basketball game at school. By midnight, he was vomiting, running a high temperature and felt pain in his leg.

His parents, Orlaith and Ciaran Staunton, who are from Louth and Mayo respectively, brought Rory to his paediatrician in New York the next day.

The doctor assured them that it was most likely a stomach bug that had been circulating, although Rory was taken to hospital just to make sure. There, medics concurred that the best thing to do was drink fluids, take painkillers and go home. Within 72 hours, Rory had died from severe septic shock.

Sepsis, or septicemia as it is also known, is a common but life-threatening condition that can slip by undiagnosed due to the initial appearance of flu-like symptoms. (See http://iti.ms/1f5asm7.)

It’s triggered by the body’s response to bacterial infection, causing a widespread inflammation that damages tissues and organs. In Rory’s case, bacteria had penetrated his blood through the cut on his arm.

The Stauntons have been campaigning to raise awareness of the condition ever since.

Sepsis occurs more frequently than heart attacks or strokes, and claims more lives than any form of cancer. In 2013, the most recent year for which figures are available, approximately 60 per cent of hospital mortality in Ireland had a diagnosis of sepsis or infection.

Lack of awareness

Yet, despite being the leading cause of death from infection worldwide, fewer than half of adults are aware of the condition. One reason the term is not better known is because when someone dies from sepsis that arose as a result of pneumonia or severe burns, for example, sepsis is not always given as the cause of death.

“What shocked me is that I never heard of it until my son died,” says Ciaran Staunton.

“Sepsis causes 258,000 deaths in the US in just one year. To put the magnitude of that in perspective, Ebola has claimed 5,000 lives worldwide. Yet the latest polls in the US say that more than 60 per cent of people have never even heard of the word ‘sepsis’.

“For me, the hard part is knowing this is avoidable. It’s not like getting cancer or being hit by a car. This boy’s life could have been saved with just the slightest bit of awareness.”

In the 1980s, Staunton says, it took the death of film star Rock Hudson for the public to start paying attention to Aids. He wonders what it’s going to take for sepsis to come into focus, feeling dismayed that the campaign is left to those whose lives have been irrevocably altered by it.

Signs of progress

There are, however, signs of progress. In 2013, the Rory Staunton Foundation initiated the first US senate hearing on sepsis. It also led to the introduction of ‘Rory’s regulations’, a set of protocols concerning the diagnosis and treatment of sepsis across New York State, including better training at medical schools and improved communication between staff and parents in paediatric emergency rooms.

This is the first legislation of its kind in the world and, Staunton says, is already saving the lives of 20 New Yorkers every day.

Then there are the personal stories that humanise those numbers. Many parents have contacted the Stauntons to say that their child was about to be sent home from hospital before they asked, “Could it be sepsis?”

“Those four words are now saving lives because people have heard about Rory,” says Staunton. “The first time we got an email saying, ‘I want to thank you for saving my son’s life,’ it came from a woman who said, ‘Because of your 12-year-old son, my 12-year-old son is alive and sitting beside the pool.’

“My daughter, Kathleen, couldn’t help wondering, ‘Isn’t it a pity someone didn’t do that for Rory?’ The reality is that if we had ever heard of sepsis, those four words would have saved our son too.”

Saving lives from sepsis depends on early detection. From the moment of infection, every hour counts and antibiotic treatment is required as soon as possible.

“The first 24 hours are crucial,” says Staunton. “Even those who have been saved will often lose limbs or suffer brain damage because of it. What we’ve been saying to various agencies is that if you look for sepsis only in emergency situations, it’s already too late.

“Trying to save a person in ICU from sepsis is like trying to save a burning house after the roof has fallen in.”

Guidelines

In November, the Stauntons spoke at a meeting of the Intensive Care Society of Ireland ahead of the launch of the Irish National Sepsis Management Guideline. These directives, published by the Department of Health, were recommended by the Health Information and Quality Authority (Hiqa) following Savita Halappanavar’s death from sepsis in 2012.

Staunton believes Ireland can play a big role in campaigning for further awareness within the UN and with the World Health Organisation. He and his wife have urged the Department of Health to make sure there is a sepsis protocol in place whenever money is given to healthcare agencies around the world.

“If you do that, it means you’ll start saving lives straight away because once sepsis has been ruled out, most other things can be dealt with,” Staunton says. “Sepsis is very easy to detect, but only if you’re looking for it.”

© 2015 irishtimes.com

http://www.irishtimes.com/life-and-style/health-family/could-it-be-sepsis-the-four-words-that-save-lives-1.2275053

Deadly Strike

Deadly strike, Rory Staunton Foundation, Sepsis Education, Awareness and Prevention, Rory Staunton

The Rory Staunton Foundation was featured in the June 2015 issue of the NYSUT United magazine. Ciaran Staunton delivered the keynote address at the 13th Annual NYSUT Professional Issues Forum on Health Care on April 18th in Albany, New York.

Rory Staunton Foundation, Sepsis Education, Awareness and Prevention, Rory Staunton

Visual of the article about Rory and his family’s mission, which was printing in this months NYSUT United magazine

By Liza Frenette
Published NYSUT United, June 2015

http://www.nysut.org/~/media/files/nysut/nysut-united/flipbooks/2015/june/index.html?la=en#p=30

An Indiscriminate Killer

Rory Staunton Foundation, Sepsis Education, Awareness and Prevention
By Bette Brown
Published, The Medical Independent, March 5, 2015.

It is a story of unspeakable tragedy: A 12-year-old Irish-American boy dies in a New York hospital because the sepsis in his body went undiagnosed and untreated. All that was essentially needed to save him was awareness of what his parents call ‘this vicious killer’. Bette Browne reports

Rory Staunton died after receiving a scrape on his arm during a basketball game. His parents brought him to his paediatrician, who sent him to a major New York Hospital emergency room for rehydration. Hospital staff missed several critical symptoms indicating he was developing sepsis, the most damaging of which was the failure to read a blood test that indicated very high white blood-cell count.

Rory was sent home, where his condition worsened. He became seriously ill and returned to the hospital the next evening. By then it was too late and he died of sepsis on 1 April, 2012, a month short of his 13th birthday.


Rory Staunton

Since the death of their son, Ciaran and Orlaith Staunton, originally from Mayo and Louth, respectively, have set up the Rory Staunton Foundation and spearheaded an international awareness campaign about sepsis, a condition that claims more lives than lung cancer and more than breast cancer, bowel cancer and HIV/AIDS combined.

Ireland has embraced the campaign and become a leader in the fight against sepsis, Ciaran Staunton tells the Medical Independent (MI), citing in particular the adoption by the HSE of guidelines on the diagnosis and treatment of sepsis.

Mr Staunton points out that sepsis is the single leading cause of death in intensive care units in the US, killing more than 200,000 Americans each year. But despite that, a 2010 report found that 70 per cent of Americans did not even know it existed.

Much of that is now changing, due in no small part to the work, particularly in the US and Ireland, of the Rory Staunton Foundation.

Since it was launched, the Foundation’s campaign has been credited with saving thousands of lives and pressuring the US Centres for Disease Control and Prevention (CDC) to make sepsis awareness a priority. “To our amazement at the time, the word ‘sepsis’ did not appear in the CDC’s list of illnesses,” Mr Staunton says. “With a budget of $76 billion (€66.8 billion), not a penny was spent on sepsis.”

Regulations

The Foundation has also been responsible for a hearing on sepsis in the US Congress, a major forum on sepsis in Washington and the landmark adoption by New York State of ‘Rory’s Regulation’ on the management and treatment of sepsis in the state’s hospitals. These regulations are the first of their kind in the US and New York State is the first government in the world to have mandatory sepsis regulations.

These regulations require all hospitals to adopt best practices for the early identification and treatment of sepsis. The regulations also require special procedures for paediatric patients, including communication of critical test results and the posting of a parents’ Bill of Rights.

“We now know much more about sepsis. In New York, because of Rory’s Regulations, clinicians must first think ‘sepsis’ and act accordingly. Our mission is to make that mandate and mindset the national standard of care.

“Vast numbers of patients walking into emergency rooms across this country and the world show symptoms of sepsis. Too many, like our precious son Rory, are sent home only to return, gravely ill and with no hope. It is when government and the medical community come together that we can eradicate this vicious killer,” the Stauntons stressed at the US’s First National Forum on Sepsis last year.


Ciaran Staunton at a US Senate hearing on sepsis

“We get emails and letters saying that ‘because of the information you put out, our child is alive today because we knew what questions to ask the doctors’. If we had known to ask our hospital and our doctor if Rory had sepsis, then Rory would be alive,” Mr Staunton says. “Our over-riding goal is to ensure that no other child or young adult dies of sepsis resulting from the lack of a speedy diagnosis and immediate medical treatment.

“Children cannot be expected to be advocates for their own care in emergency rooms and urgent care clinics, so it is essential that hospitals and medical clinics put diagnostic protocols in place to ensure the speedy treatment necessary to save children’s lives.

“We want to make a checklist for sepsis a key part of assessing patients, and to create a long-term informational strategy that will inform and educate parents to look for the signs of sepsis when their child is exposed to injury and bacteria.

“We also want to ensure that medical professionals check for sepsis and that educators have a basic training in first aid if a child is injured,” Ciaran says. “If there had been a greater awareness and understanding of sepsis earlier, Rory would not be dead.’’

Saving lives

Dr Kevin Tracey, a neurosurgeon and President and CEO of the Feinstein Institute for Medical Research at North Shore-LIJ Health System in Long Island, New York, told globalpost.com that the kind of sepsis awareness protocols advocated by the Rory Staunton Foundation have made a difference in his hospital.

“There is evidence that these measures, applied across large health systems, save lives. Deployment of major sepsis awareness protocols and rapid sepsis response teams within our hospital system, North Shore-LIJ, slashed the mortality rate from sepsis by 50 per cent.

“A major ally in combating sepsis is the Global Sepsis Alliance (GSA). The mission of the GSA is to provide a unified voice to those who treat sepsis and to elevate public and governmental awareness. A unified, global approach is absolutely necessary if we’re to stop a deadly, global pandemic. And a pandemic it is: Sepsis is currently one of the biggest killers of adults and children worldwide.”

If there had been a greater awareness and understanding of sepsis earlier, Rory would not be dead

Underscoring this point, Mr Staunton tells MI that his Foundation is aiming to build on its achievements in the US and Europe and focus also on the developing world. He wants the Irish Government to assist with this campaign.

“We’ve met Irish health officials and the Minister for Health and have asked the Irish Government to launch an initiative with the UN membership and the WHO regarding sepsis awareness.

“Under the initiative, any country the UN/WHO are giving aid to must have a sepsis awareness programme in place before they get funding. We’ve met with the Minister for Foreign Affairs, Charlie Flanagan, to discuss this and at the moment we have requested a meeting with the Irish Ambassador to the United Nations. Ireland gives a lot of money overseas, especially to developing countries, and a lot of it is health-related money. Sepsis is the largest killer of children in the world and if we are giving money to a country, we should insist that they should have a protocol on sepsis education in place.”

Meanwhile, the Foundation is targeting a number of US states with its sepsis awareness programme. “Introducing Rory’s Regulations in New York was an executive decision by Governor Andrew Cuomo. It didn’t have to go through state legislators. So we are meeting governors from a number of states at the moment. In a country of great wealth, there are 300,000 people dying each year from sepsis because no-one knows to look for it or to ask a doctor or a medical facility, ‘could this be sepsis?’ If we say the word, we save a life,” Mr Staunton emphasises.

UK and Ireland

The UK, too, has launched a major effort against sepsis, which kills 31,000 people annually in England alone. The plans were announced in December last year by Health Secretary Jeremy Hunt, who said that a new system for detecting sepsis in children under five is to be introduced in doctors’ practices and hospitals.

Sepsis accounts for 100,000 hospital admissions each year and costs the NHS an average of about £20,000 (€27,000) per patient.

It has been reported that in England, 1,000 children under five are admitted to paediatric intensive care units annually due to severe sepsis, of whom 10 per cent will die. It has become a more common reason for hospital admissions than heart attack, and has a higher mortality rate. “Sepsis kills more than 80 people in England every day,” the Health Secretary said. “It’s time to apply the lessons we’ve already learnt on patient safety and reduce the number of lives that are needlessly lost to this silent killer.”

The condition, which arises when the body’s response to an infection injures its own tissues and organs, can lead to shock, multiple organ failure and death, especially if not recognised early and treated promptly. It remains the primary cause of death from infection, despite advances in modern medicine, including vaccines, antibiotics and acute care.

Multiple studies have shown that programmes aimed at early identification and treatment of patients with sepsis lead to reduced mortality

International estimates of incidence vary but suggest approximately 300 cases per 100,000 population per annum. By comparison, myocardial infarction affects 208 patients per 100,000 per year and stroke 223. Mortality from sepsis is currently as high as mortality from acute myocardial infarction was in the 1960s.

According to the Centres for Disease Control and Prevention, sepsis affects more than 800,000 Americans annually and is the ninth-leading cause of disease-related deaths. The Agency for Healthcare Research and Quality lists sepsis as the most expensive condition treated in US hospitals, costing more than $20 billion (€17.5 billion) in 2011.

Sepsis incidence is predicted to grow at a rate of 1.5 per cent annually. This is partly due to an ageing population, increased numbers of invasive procedures and the increasing number of people living with comorbidities and on long-term immunosuppressive therapies. Multiple studies have shown that programmes aimed at early identification and treatment of patients with sepsis lead to reduced mortality, as well as deceased intensive care unit admission, ICU length of stay and hospital length of stay.

Sepsis represents a significant burden on Irish patients and the healthcare service, according to the HSE’s National Clinical Guideline No 6 Sepsis Management, published in November 2014. While hospital statistics do not capture underlying cause of death data in Ireland for 2013, up to 60 per cent of all hospital deaths had a sepsis or infection diagnosis, with approximately 16 per cent of all hospital deaths designated with a sepsis-specific diagnosis code. The total number of cases with a diagnosis of sepsis was 8,831 in 2013 and these cases accounted for a total of 221,342 bed days.

In addition, in 2013, the mortality rate of patients with a diagnosis of sepsis who were admitted to an intensive care environment was 28.8 per cent.

The corresponding figure for 2011 was 32.4 per cent and 31.3 per cent for 2012. However, this data is based on the discharge code of patients who had a diagnosis of sepsis and who were admitted to any type of intensive care environment at some point during their hospitalisation. It is not possible to conclude that these patients were admitted to ICU as a result of sepsis, or that sepsis was the cause of death.

“Sepsis is a leading global health and financial burden and is expected to increase further with an ageing population,” the HSE guidelines warned. “Fixed, direct costs associated with the spectrum of sepsis, such as increased ICU LOS, ICU staffing, medications and new technologies, are significant. Equally concerning are the indirect costs associated with sepsis such as loss of earnings, productivity and mortality. In fact, indirect costs may account for up to 70 per cent of the total costs of sepsis.

“European studies estimate that a typical episode of severe sepsis will cost a healthcare institution around €25,000. One-year healthcare use has also been shown to be elevated after severe sepsis. In addition, long-term mortality in previously healthy patients with severe sepsis/septic shock has been shown to be worse than that of patients with non-septic critical illness and of the underlying general population.”

‘Indiscriminate killer’

Dr Vida Hamilton, Consultant Anaesthetist, Waterford Regional Hospital and National Clinical Lead, Sepsis, chaired the Sepsis Guideline Development Group and is on the front line in the battle against sepsis. “I would categorise sepsis as an indiscriminate killer, irrespective of age, socio-economic group, underlying good health status or whether you have chronic health morbidities. It kills one-in-five patients with severe sepsis sceptic shock. About eight million people in the world are estimated to die from sepsis each year,” Dr Hamilton tells MI.


Dr Vida Hamilton

“We don’t have robust data in Ireland. What we do have is data on our mortality rates from patients presenting with severe sepsis sceptic shock who have some part of their treatment in the critical care area. That rate is 28.8 per cent; that’s 2013 data and is in line with the European norm. The Impress study on sepsis identified a mortality rate of 28 per cent in Europe, 30 per cent in Asia and 24 per cent in the US, though the study group in the US was slightly different from that in Europe.

“The mortality rate from severe sepsis sceptic shock now is where myocardial infraction was back in the 60s. The difference from what’s happened since the 60s in the management of acute myocardial infarction is that time-dependent pathways were introduced that resulted in the reduction of mortality rates. And we have very robust evidence now that introducing time-dependent pathways in the recognition and management of patients with sepsis, particularly severe sepsis sceptic shock, reduces mortality rates to approximately 20 per cent.”

Dr Hamilton says the focus in Ireland this year is on implementing the 2014 National Clinical Guideline No 6 Sepsis Management. “The guidelines were launched last November and this year represents implementation year. We have to ensure there are appropriate resources, education and audits to ensure that people are aware of the pathways and then are able to follow them. That process will occur during this period, with a view to being implemented by 2016.

“The guidelines are evidence-based and the evidence demonstrates that mortality rates, particularly for patients presenting to the emergency department with severe sepsis/sceptic shock, can be reduced to 18-to-20 per cent by following these guidelines. We would be looking for a reduction in mortality rates of between 20-to-30 per cent with the full implementation of these guidelines. It will take a number of years to achieve that drop, probably a minimum of two-to-five years.

“The fundamental approach that the guideline is recommending in management of patients with sepsis is the sepsis 6 approach. This is a very simple approach, where we ask for three things to be given and three things to be taken in all patients diagnosed with sepsis.

“The three things to give are: Oxygen, if they require it; IV antibiotics, as per hospital guidelines; and IV fluids, as they require it. And the three things to take are: Blood cultures before IV antibiotics are administered; routine bloods and a blood lactate level; and to take account of the patient’s urinary output. That is our fundamental approach to all patients with sepsis.

“The second step then is to risk-stratify the patient as to whether they have severe sepsis or severe sepsis sceptic shock and when you risk-stratify a patient into the more severe manifestations of sepsis, then you have additional management tools.”

Dr Hamilton views the guidelines as a milestone for sepsis recognition and treatment in Ireland. “These are hugely important and we have very robust data supporting the following of guidelines in the recognition and treatment of patients with sepsis and a reduction in mortality rates.

Pathways

“It’s a phased process. The first two pathways have been agreed — the emergency pathway for patients presenting to the emergency department with symptoms and signs consistent with sepsis, and the other pathway is for the management of adult inpatients.

“We have three other pathways that are in evolution at the moment. The paediatric guideline is published and it is hoped that this pathway will be published by the middle of this year, and the maternity pathway is in evolution, and the pre-hospital pathway also. We are hoping to have all those done certainly by the end of this year, if not by the middle of this year. The guidelines are already there, so these are specific pathways to facilitate the implementation process.”

I would categorise sepsis as an indiscriminate killer, irrespective of age, socio-economic group, underlying good health status or whether you have chronis health morbidities

In view of the number of sepsis-related tragedies in Ireland, why did sepsis awareness slip so far off our radar?

“I think it is true to say that sepsis has suffered from a lack of awareness within the medical community. Sepsis kills more people than breast cancer, bowel cancer and HIV/AIDS every year and yet the amount of money put into research and awareness of those three conditions far, far exceeds the kind of awareness and investment in research on sepsis. This is true of Ireland, the UK and the US.

“As a result of high-profile cases associated with poor outcomes from sepsis, the Minister for Health at the time, Dr Reilly, asked the HSE to set up the National Sepsis Steering Committee and the National Sepsis Management Guidelines are a product of the Guideline Development Group from that Committee. There are six national guidelines and sepsis was the sixth one published. The implementation of those guidelines is listed as a ministerial priority for 2015.”

So is Ireland now becoming a leader in sepsis awareness, as Mr Ciaran Staunton suggested? “Yes, I believe so. We are the first country to publish the National Clinical Guideline No 6 Sepsis Management, so we are definitely leading the field in this area. Great steps have been taken and I think we have to recognise that. We are absolutely at the European norm and that’s before we have implemented our guideline and our pathways. So I would say we are ahead of the curve and are now leading the field.”

But much remains to be done, Dr Hamilton stresses. “I would like to encourage all healthcare workers involved in the care of patients to read the summary guidelines and review the pathways on the website www.hse.ie/sepsis. I am planning to visit all the hospitals in a formal way to present sepsis awareness and education lectures and to discuss with the relevant stakeholders how they can implement the guidelines.

“My priority now is to increase awareness, increase education, to ensure that the resources are available for clinicians to be able to implement the guidelines and then to facilitate that implementation.”

http://www.medicalindependent.ie/60531/an_indiscriminate_killer