24 July 2018
Written by Ivar Petersen
It’s one of the principles of CoMo to be constructive and forward looking when working to improve the diagnosis and treatment of meningitis. Improvements require strong learning systems in the health systems that are handling the disease, which in turn require a strong and trusting learning culture. It’s human to look for someone to blame when disaster strikes, but if we truly want to improve the system, we must resist the temptation. Fully embracing the forward looking culture can achieve amazing results, which I hope my story will illustrate.
On New Year’s Day 2017, my and my wife’s world collapsed and our life as we knew it ended. Our 17-year old son, Hans, died in hospital from septicaemia caused by Meningitis W-135, 19 hours after first telling us he felt ill. We came through the following weeks only by support from friends and family, who filled our fridge, cooked our food and made sure they were there for us 24/7.
Throughout last year, a comprehensive campaign brought to the attention of the public some structural flaws in the triage and diagnosis of meningitis cases. The foundation of the 10-month campaign was the fatal cases of three teenage boys, one of whom was our son. The cornerstone was a 45-minute documentary, Our Sons’ Last Day, which was seen by about 20% of the Danish population.
(you can also watch Our Sons’ Last Day here)
When trying to analyse why the story became as big as it did, a couple of coincidental things spring to mind: Firstly, all three boys came from resourceful and well educated families that were able to step forward and communicate. Secondly, the fathers had on their own initiative come together to support each other, which was seen as unusual; “men don’t talk to other men about feelings”. Finally, and I think this is what really moved a lot of people, all three families were unified in being constructive, forward looking and non-vindictive in their dealing with the public and the health authorities. On the back of the documentary and subsequent publicity, there were general uproar, questions in parliament and increased pressure on the regional health authorities. 2017 was an election year, and the people in power were being blamed.
All three boys died within a year of each other. They were treated following similarly incorrect procedures by the same regional health authority. There were individual inquests for the three boys, each arriving at the same conclusion - that each death would have been prevented, if treatment had been appropriate and to the available and expected standards. The region commissioned a general inquest looking into reducing the time between infection from bacterial meningitis and commencement of treatment (antibiotics) – you can read about the inquests and their outcomes here.
As time progressed, we began to solidify our goals, strategy and position. I had a feature article published in a national newspaper, which headlined: “The health authorities caused the death of my son, but I’m not looking for a scapegoat”. This became the newspaper’s on-line version’s most read article that month. The reason for this was, that parallel to all the work happening relating to meningitis, a completely different case was also unravelling.
The case was 2 years old, and involved a junior doctor and her supervisor who were being put on trial for criminal negligence, due to a mistake made during note taking. My feature article, written unaware of this non-meningitis case, was adopted by doctors nationally as a rallying cry. In my article I write about “The human contract”: We must accept that we are being treated and diagnosed by humans, and that even the best make mistakes. In return, we should expect them to strive to improve and to recognise the mistakes they make and do whatever possible to avoid future occurrences. This contract must be adhered to if we want to improve our system. Even if the cost of the mistakes is the death of a child. Of our child.
I was beginning to establish a public image of “being safe”. I was invited to patient safety conferences and to speak to hospital managers. I was trusted by the front-line personnel and the top politicians alike, most likely because I had never gone “personal” and I had always only argued on the basis of facts.
In connection with our campaign to establish a vaccination program for teenagers, we met with representatives from the Ministry of Health. We had a very open and honest exchange of opinions, and though I wouldn’t say we got any closer getting a program, we did go away a lot wiser with respect to how to create a long term strategy for the organisation, which hopefully will reach that goal.
My wife and I, as individuals, carried out a lot of the work outlined above before establishing Bekæmp Meningitis. There were, however, a number of reasons for forming the organisation - we wanted to ride on the wave of public opinion and felt that as an organisation, we could achieve more compared to being single individuals. We also see what large established organisations like MRF are able to achieve, and even if engagement at that level is years in the future for us, we must start somewhere. Finally, we wanted to join CoMo as more than just a “Friend”. We would like to draw on the experiences of existing members with respect to policies, strategies and campaign examples, and we think we have something to offer: We regard the way we have been integrated and embedded in the work carried out by the Danish health authorities as our biggest success story. We have the ears and confidence of people throughout the system, from top politicians to the nurses performing triage. All that, we believe, could only be achieved by being trusting, constructive and forward looking.
It’s been just over 19 months since our son died. Since then, we have done a lot and achieved a lot. Well-meaning friends are complimenting us in the fight against the system, but they are wrong, we are not fighting the system. We have chosen to fight on the same side as the system, against meningitis. There’s still a lot to do, and we truly believe that we would not stand a chance of succeeding and wouldn’t have achieved what we already have, if we had chosen to fight rather than work. A seed of trust, which was sown at the very first meeting we had with the health authorities , has grown into a strong mutual trust that is absolutely crucial if we are to succeed in combating meningitis together.
Bekæmp Meningitis’ mission is to eliminate deaths from meningitis in Denmark. Our son, Hans, had a strong sense of fair play and always fought for those that could not fight for themselves. It is entirely in his spirit and with him wholly in our hearts that we continue fighting the disease to achieve this mission.
It is so human, so understandable, to want to find someone to blame for the death of your child. Whether there actually was someone making a mistake or not, do try and resist the urge. Look ahead, create a constructive meaning in your child's death, and honour their memory by “saving the next". We do look back, but we do not want to look back with bitterness and hatred against the people involved in Hans’ death. We want to look back with love, cherishing the nearly 18 years we had with the most wonderful boy in the world.
For more information about the first meeting Ivar had with the authorities, click here.
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Written by Ivar Petersen, co-founder of Bekæmp Meningitis, a Danish Patient Group that provides a range of educational resources and engages in the public debate for a better health system with improved patient safety. For more information, call +45 26 29 71 06, email or visit Bekæmp Meningitis' website.