European Sepsis Report – Belgium

Patient-led initiatives: Sepsibel, Belgium

Starting around May 2020, Michael Clarke and Carine Nelissen, two sepsis survivors introduced through the ESA, joined forces with others with the ambition to set up a Belgian Sepsis Action Plan and a Support Group. Michael and Carine set up Sepsibel, a group with the ambition to aggregate Belgian sepsis patients, share their stories, and create a national movement around sepsis. A Sepsibel website and Facebook page were set up as a first step.

In parallel with and in support of the Sepsibel initiative, another member of the team has engaged with a group of ICU and medical specialists – a sepsis expert reflection group. One of these groups then had a meeting with Belgian politicians who have shown their support for the idea of a national action plan against sepsis. As a result, two federal MPs, Robby De Caluwé and Nathalie Muylle, proposed in April 2021 a resolution for a national action plan. A round table with experts was also organized on 13 September 2021 by Mr. De Caluwé, to build consensus around such a national sepsis action plan.

Though there was considerable support in the Federal Parliament for this resolution, it has been held up by rather limited opposition. In November Sepsibel addressed an open letter to the Federal Minister of Health supported by ten medical and patient associations urging action.

Progress is being made in populating the Sepsibel website and gaining more public attention with stories appearing on the ESA webpage and in a specialized Belgian medical review,’ De Specialiste’. The open letter to the Minister of Health also got coverage in the medical sections of the wider press.

Since the 2022 ESA Annual Meeting, the Sepsibel team has been reinforced by a very active sepsis shock survivor, Ilse Malfait, who aims to publish a book about her experience.

Sepsibel is now working on obtaining formal status as a not-for-profit entity to further support its ambition to create a national movement around sepsis.

It has ambitious plans this year to raise awareness for sepsis

  • Gathering new members

  • Collecting sponsors

  • Publishing a narrative nonfiction book about the experiences of sepsis written for a wide audience

  • Getting media attention around 13 September

  • A Belgian sepsis event around 13 September