Sepsibel

PRESS RELEASE

Urgent need for broad awareness to save lives 

• 2 in 3 Belgians never heard of sepsis before 
• Only 1 in 5 Belgians know that sepsis is an extreme immune system response to infection
• 70% of Belgians say they want to know more about sepsis

Brussels, 13 September 2024 - On the occasion of World Sepsis Day, patient organisation Sepsibel reveals the results of a survey conducted by iVOX on knowledge about sepsis in Belgium. And they are alarming: only 33% of Belgians have ever heard of sepsis and only 18% understand what exactly the condition entails. And yet sepsis, an extreme reaction of the immune system to an infection, affects nearly 41,000 people in Belgium every year, 7,675 of whom die. Sepsibel therefore calls for immediate sensitisation to raise awareness and save lives.

Alarming figures

The survey shows that 2 in 3 Belgians have never heard of sepsis and only 1 in 5 know what sepsis is: an extreme reaction of the immune system to an infection. An equally large percentage confuse sepsis with blood poisoning, causing a misjudgement of the severity of the condition. There are striking regional differences here: in Flanders, 24% know what sepsis is, compared with 15% in Brussels and only 6% in Wallonia. 

Insufficient knowledge can cost lives

Sepsis is life-threatening and can lead to organ failure, septic shock and death without prompt treatment. Worldwide, 48.9 million people contract sepsis every year, of whom 11 million die. In Belgium, sepsis affects nearly 41,000 people annually, of whom 7,675 die.(1) Early recognition and treatment are crucial; every hour without intervention increases the risk of death by 4% to 8%.

Ilse Malfait, co-founder of Sepsibel and a sepsis survivor herself, describes in her book ''Every hour counts' her personal experiences. She Stresses the seriousness of these figures: "These results are worrying. Sepsis is one of the biggest silent killers worldwide and can be deadly if not recognised and treated quickly enough. Every hour counts. The lack of knowledge and awareness about this disease can literally cost lives. By focusing on prevention and early diagnosis, we can prevent many deaths."

Although knowledge about sepsis is low in Belgium, the survey found that almost three quarters of Belgians would like to know more about sepsis.

Ilse Malfait: "It is crucial that people not only know what sepsis is, but also understand the severity of the condition. Two thirds of those surveyed mistakenly believe that there are more road or breast cancer victims than sepsis deaths, which misjudges the risks. We urgently need to raise awareness about sepsis to ensure that people seek help in time." 

Broad national awareness is urgent
Following an earlier communication campaign by Sepsibel, Ilse Malfait's book on sepsis and a Pano report, earlier this year Minister of Public Health Frank Vandenbroucke asked for a scientific report on a national sepsis plan. An expert group led by professor Erika Vlieghe, infectiologist at the UZA and UA, drew up a report a few months ago with guidelines for early recognition and treatment of sepsis, as well as information and prevention.

"Effective management of sepsis requires the introduction of a national plan with lines of force that include not only prevention and education, but also guidelines for early diagnosis and treatment, awareness among both health workers and the general public, ongoing training for health workers, aftercare and patient support, and research and evaluation", said professor Erika Vlieghe.

Ilse Malfait points out that the findings of the iVOX survey underline the importance of a national plan as well as the urgency of broad awareness-raising: "The proposal presented earlier this year by Professor Vlieghe and her team provides a solid basis for tackling sepsis in Belgium. However, further action is needed to translate the recommendations from this plan into concrete actions to step up the fight against this silent killer. We hope that a national sepsis plan will soon be implemented, as recommended by the WHO in 2017. Meanwhile, we make an urgent call for broad national sensitisation that is essential to save lives. Because previous communication campaigns in Flanders have paid off, as the figures show." 

About the study:
The survey was conducted online by research firm iVOX between 28 August and 2 September 2024 among 2,000 Belgians, representative by language, gender, age and degree. The maximum margin of error is 2.08%. The study was made possible by Bemedtech, Biomérieux, BD, Thermo Fischer and Roche.

About Sepsibel

Sepsibel is a Belgian non-profit organisation working for sepsis survivors and relatives of deceased sepsis victims. Founded by people who have themselves survived sepsis, the organisation aims to raise awareness about sepsis among policymakers and the general public. Sepsibel also focuses on improving the mental, social and physical health of people who have survived sepsis and those around them.

(1)  These figures are based on a reputable scientific study, exact counts are not available as sepsis is still not registered in Belgium.

An ambitious national sepsis plan is handed over by an expert group to the Belgian health minister today

Last year, following a television report on sepsis, there was a demand for a scientific report regarding a national sepsis plan. A group of experts worked on this for six months. The working group consisted of 62 experts from different disciplines within the healthcare sector, including doctors, nurses, physiotherapists and sepsis survivors.

Patient organisation Sepsibel is very happy with the result. For four years, we have fought heaven and earth to get things moving. 

After the Pano report we were contacted by many. It was remarkable how many victims struggle with post sepsis effects such as concentration problems, nerve pain and memory loss. 'Finally sepsis is coming to the fore,' they emailed, after which they told of the lack of understanding surrounding their severe symptoms. Even last week, we talked to relatives of two deceased young victims. Their story touches you to every fibre. It makes us keep fighting hard for awareness about sepsis. 

And now there is this long-awaited scientific sepsis report. It is a feat, especially considering the speed with which it was produced and the large number of doctors, nurses, experts, organisations and sepsis survivors involved. The collaboration was excellent. People really listened. 

We are especially relieved for the recognition of the pain points raised. The management of sepsis in our country could be better, concluded the Pano report. This is also reflected in the report's many recommendations.  

Much work remains to translate these recommendations into legislation and initiatives. In the short term, the sepsis body should be established, from which the implementation of the entire plan will be monitored. We hope this happens soon, as every hour counts. We are hopeful for the future.

Watch the documentary on Sepsis by Pano now on VRT MAX: https://www.vrt.be/vrtmax/a-z/pano/2023/pano-s2023a10

An inspiring story of desperation and courage and an all-consuming illness

The story of Every hour counts and Ilse Malfait starts with breast cancer, another terrible disease that strikes Ilse in May 2020. After an initial treatment with chemo, hellish pains follow and Ilse ends up in intensive care. And that's where hell really begins. She is in a life-threatening condition for weeks and is kept in a coma for a long time. Her lower legs and fingers turn pitch black as they die and are amputated. She spends as many as 487 days in hospital and undergoes 22 operations. 

"In the end, I came through, thanks to the excellent care of the medical team at UZ Ghent. But it should never have come this far. In the first hospital I ended up in, action was too slow. The symptoms were recognised and treated too late, with dramatic consequences," says Ilse Malfait.

Urgent call for national Sepsis plan

"There is a deafening silence around sepsis in Belgium. No awareness, no data, and especially no guidelines in many hospitals to detect critical patients quickly. I want to change this with my book. The government must act now and implement a national sepsis plan," Ilse continues.

At least one Belgian dies needlessly from sepsis every day. According to Sciensano, prevention and early recognition can avoid a significant proportion of bloodstream infections, which underlie most sepsis cases.

The World Health Organisation, through a resolution in 2017, urged governments to develop such a national plan around sepsis. Several European countries including Germany, France, Ireland, Italy, the Netherlands, Austria, Spain, Sweden, Switzerland and the UK responded.

"An effective approach to sepsis requires the introduction of a national plan with lines of force regarding prevention; data registration; guidelines for early diagnosis and treatment; awareness both among healthcare workers and the general public; ongoing training for healthcare workers; aftercare and patient support; research and evaluation," says Professor Erika Vlieghe, infectiologist at the UZA and UA, who called for
A national sepsis plan.

"We urgently need to bring sepsis out of the shadows," says Professor Jan De Waele, president of the European Society of Intensive Care Medicine (2024-26) and intensivist in the UZ Gent IZ team that saved Ilse's life. "Prevention, early recognition and prompt treatment of sepsis are essential to save lives and prevent permanent damage ranging from concentration problems, brain damage, to limb amputations."