Risk of a large-scale patient safety disaster
Today Swedish radio has a couple of good reports on postcovid (links are at the bottom of the post). However, what emerges is worrying on several counts.
Firstly, Minister of Social Affairs Jakob Forssmed seems to have difficulty understanding that it can be good to know how many people have been affected by the long-term consequences of COVID-19 in order to take care of them in the healthcare system. No authority has been commissioned to investigate the incidence, but at the same time, the National Board of Health and Welfare and SBU have been commissioned to develop guidelines for the healthcare system. Although the number of people with long-term illnesses is expected to increase, the number of specialist clinics is decreasing without anyone knowing how great the need is. It is time for the Swedish government and authorities to recognise the extent of the problem, but without a mandate to map it, they will continue to evade responsibility.
Secondly, the report notes that people continue to suffer from post-covid after acute COVID-19 and that the number of people affected will increase if the spread of infection increases during the autumn and winter. It also states that the risk of contracting the disease increases with each acute infection. The Minister for Social Affairs only states that those who become long-term sick need to receive good care, but does not mention that we need to use the tools available to reduce the risk of falling ill. Other than vaccines, that is.
Doctor and researcher Judith Bruchfelt mentions that, in addition to vaccination, we should try to avoid infection as far as possible. But no one talks about how this should be done. Reducing the risk of infection, for example through improved ventilation, masks and testing to monitor the situation, still seems to be out of the question. The reports state that children and young people are also affected by post-covid, but the fact that they still do not have the opportunity to be vaccinated in Sweden is not mentioned.
Thirdly, it is extremely problematic that Judith Bruchfelt is left completely unchallenged when she says that this is a completely new group of patients. This is not true. People were already suffering from post-infectious diseases, such as Myalgic Encephalomyelitis (ME), before the pandemic. The reports show that people with milder acute COVID-19 suffer from long-term and very severe symptoms in the aftermath. I know that many of those who have been sick the longest now fulfil the criteria for ME. Some are diagnosed, but I have also understood through contacts with sufferers that others are met with great ignorance about ME and stress-induced symptom exacerbation (PEM) even at the country's specialist clinics for post-covid.
Repeatedly suggesting that this is something never seen before is dishonest and risks putting people with PEM at high risk of deterioration. They are also distancing themselves from all those who suffered long-term illness after infection even before the pandemic, but also those who contracted ME from COVID-19 or other causes during the pandemic. And in this way, they also distance themselves from the knowledge that already exists about post-infectious disease and how certain symptoms should be treated. This actually risks giving free rein to the BPS lobby to promote their theories. I know, for example, that some post-covid clinics are prescribing gradually increased exercise to people with PEM which, according to the research already available on PEM, can be directly harmful and lead to a permanent deterioration of the disease.
Emma Moderato, a post-covid patient and vice-president of the Swedish Covid Association, tells in the report how she has deteriorated in her contact with the healthcare system and gone from being partially able to work to being on full-time sick leave.
"Paradoxically, it was a number of hospital visits that made Emma Moderato worse. There was no room to admit her when she came in with stomach pains, instead she was asked to come back several days in a row. - It's a classic description of post-covid, these setbacks that, for me, it was very exhausting to be in the emergency room for three days without being able to eat and drink properly. My body can't handle that and it makes me worse."
We are unfortunately many ME sufferers who share Emma's experience of being deteriorated by the healthcare system. And if they continue to ignore the knowledge that exists - and treat people with post-covid and PEM like they have done so far with ME sufferers - we are facing a large-scale patient safety disaster where seriously ill people risk getting even worse when they get avoidable damage from the care.
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