Response to interpellation 2023/24:403 on treatment and investigation of serious illness without identification
Translated from Swedish by AI; the translation may contain errors. The Swedish text is the original.
Summary AI, written in advance
KD argues that there are large differences in the regulation between healthcare and complementary and alternative care 1. KD emphasizes that penal provisions in the Patient Safety Act exist to ensure that persons without expertise do not perform healthcare 1. KD believes that treatment without evidence should be prohibited as it is not good for the patient 2. KD thinks that the investigation proposals regarding age limits and broadening to all diseases are excellent 2. KD wants to use and sharpen existing supervisory tools to handle operations that exploit people's fear. KD states that it is appalling when people are led to death through dangerous advice 3.
Written by AI in advance and may contain errors. The numbers lead to the speech a statement builds on; check against the text below.
Statsrådet Acko Ankarberg Johansson (KD)
Madam Speaker! Anders W Jonsson has asked me what measures I and the government will take to ensure that no more people with serious illnesses are affected by investigations and treatments carried out by individuals who lack the required competence.
Health and medical care is care performed by practitioners who are under the supervision of the Health and Social Care Inspectorate and who either have scientific evidence or are supported by proven experience among the professionals within health and medical care. For health and medical care, there is extensive legal regulation aimed at ensuring patient-safe and treatment-effective care. No such regulation exists, however, for complementary and alternative care, abbreviated KAV. For example, there is currently no requirement that KAV be performed in accordance with science and proven experience, and there are also no systems to ensure the competence of complementary medicine and alternative medicine practitioners to perform the care they provide.
There are thus large differences between the legal regulation that applies to healthcare and the legal regulation that applies in activities outside of healthcare. In KAV, the risks that care may entail in individual cases are countered primarily through the penal provisions contained in the Patient Safety Act (2010:659). The penal provisions aim to emphasize the importance of the person performing KAV exercising necessary caution and not performing care that he or she lacks the expertise to perform.
If the Health and Social Care Inspectorate becomes aware that someone who is not part of the healthcare personnel has violated certain provisions in the Patient Safety Act, the authority shall take measures to ensure that the provisions are followed and, if necessary, make a report for prosecution.
In the Patient Safety Act, there are also provisions that restrict persons other than healthcare personnel from performing healthcare measures, as well as penal provisions for crimes against the Patient Safety Act. The Health and Social Care Inspectorate may decide on a prohibition for a person to carry out activities, either for a certain period of time or forever.
It should also be emphasized that the Consumer Agency has a supervisory responsibility when businesses market goods or services in their business activities. The Consumer Agency also works to ensure that there is information and guidance on consumers' rights and obligations, as well as other information that gives consumers good conditions to pursue their interests, unless another authority has that task. As appears from the KAM-investigation's (S 2017:05) partial report Complementary and alternative medicine and care - safety, knowledge, dialogue (SOU 2019:15), the Consumer Agency has previously had several different supervisory cases that have dealt with these issues.
As Anders W Jonsson has pointed out, the final report of the KAM investigation Complementary and alternative medicine and care - new legislation (SOU 2019:28) has been submitted for consultation, and I can state that the consultation outcome is mixed. Several consulting bodies point to ambiguities regarding certain central concepts in the investigation's proposal. I am, however, following the issue closely and do not rule out that current penal provisions may need to be reviewed.
Anders W Jonsson (C)
Madam Speaker! I thank the Minister for the answer.
A 32-year-old man with severe bipolar disorder felt very well for several years. He was on lithium, which is a stabilizing medication for people with bipolar disorder. He met a representative for alternative medicine who said that that is a poison and that he should stop taking it. The representative argued that there is other, herb-based medication that is at least as good or rather better. The man stopped taking his lithium, developed a very severe depression, and took his own life.
A woman of similar age with schizophrenia, which is also a very severe mental illness, was doing well as long as she took her preventive medication. For that disease, there are medicines today that ensure these people do not experience relapses. Even in this case, the woman was in contact with alternative medicine - which was not free - and was urged to stop taking the medication. She suffered a very severe relapse as a result of this.
A twelve-year-old boy who had childhood cancer visited a healing center together with his worried parents. At the healing center, they were told that children who get cancer choose to get their cancer to get attention from their parents. This, it was said at the healing center, is nothing that one cures with chemotherapy, radiation, and surgery, but it is cured with healing powers.
Madam Speaker! All of this is completely legal today. It is perfectly okay to take payment for giving these pieces of advice, even though everyone knows that it has such severe consequences.
This was something that Minister for Health and Social Affairs Lena Hallengren saw. She appointed an inquiry with the mandate to produce a tightening of what is carelessly called the quackery law. This is something that the Riksdag has pushed for over many years, especially regarding severe mental illnesses.
A bill was submitted in 2019, in the middle of a raging pandemic, and the bill was referred. The investigator, who was a very experienced former director-general, realized that one cannot focus only on severe mental illnesses and chose to broaden it and propose a raised age limit. The proposal has since been referred. Since then, nothing has happened in the Government Offices.
The Minister says that she continues to closely follow the issue. I wonder what it is that causes the Minister to say that she "closely follows the issue" when people are being harmed, perhaps not every day but every week and every month, and a number of cases have actually had a fatal outcome. Is it the case that the Minister and the previous government do not see at all that this is a problem? Perhaps it is thought that it is okay for representatives of alternative medicine to be well paid to treat this target group?
The Minister also says that comments were received on the report, but that is always the case. I have personally read through the referral comments. It was expected that those who deal with alternative medicine do not think this is good at all. The Public Health Agency, however, thinks it is good. The Swedish Courts Administration thinks it is good. The profession thinks it is good. The National Board of Health and Welfare has objections on some points.
If one had seen this as a real problem, one would have tasked the department with making the necessary corrections so that this could be laid before the Riksdag so that we can protect this vulnerable group. Alternatively, if one had thought the views were significant enough, one could have appointed a new inquiry that could come with a Ds or equivalent to correct this.
However, it worries me that it is obvious that nothing is happening, apart from the fact that the Minister continues to closely follow the issue.
Statsrådet Acko Ankarberg Johansson (KD)
Madam Speaker! I thank the member for the additions. I have also taken note of such cases. It is absolutely appalling that people are led to ill health or even to risk of death - in one of the cases, it led to death - and this, moreover, at a high cost. People are thus paying for extremely dangerous advice. It is very serious that this is happening.
Let me first supplement with what the current legislation says and what the penalty is. In Chapter 5, Section 1 of the Patient Safety Act, there are provisions regarding limitations on the right of persons other than healthcare personnel to take measures.
In the same law, there are also penal provisions that shall be applied if someone violates the law, which can result in both fines and imprisonment for up to one year. There are therefore clear provisions that one must comply with what is stated in the Health and Medical Services Act, and if one does not do so, there is a possibility of punishment. It is precisely this path - the path of prosecution - that we have to follow today. I will, of course, follow the developments regarding whether we need to have higher penalties to apply this and to ensure that intervention occurs.
I cannot answer why the previous government did nothing during those three years. For us, the difficulty lies in some formulations in the investigation. It is not about whether one should ban or raise age limits, which sounds perfectly reasonable, but about the concept that symptom-relieving treatment should be permitted. In that case, we need to define in legislation what is symptom-relieving, and it will be difficult to get it right there because we are outside the evidence of healthcare.
We have today no catalog or concept holding where we know what is approved and what is symptom-relieving, but we would need to build up entirely new knowledge and evidence regarding this part of procedures and advice given and furthermore define what is symptom-relieving, which in this case would be permitted according to the investigation while other things would not be.
The main initiative to broaden the perspective from the few diseases mentioned today to a wider scope, I think, is absolutely excellent, but when one enters the concepts, it must be clarified in the law what it is to look like. That is where difficulties arise, and this means that something more will be required if one is to proceed.
We have to assess the need we have for investigations right now, and there are many who are demanding them. In that case, one always needs to prioritize, and our assessment so far has been that it is on the criminal side that we need to look at how we can proceed. I do not rule out that we can also look at other things, but just as the member says, it will require significant supplementary investigations to get it in place from a legal technical standpoint. It is a fairly large undertaking.
I do not quite know what is the best way for us. Is it to exercise supervision, to attack and point out to all those who act on incorrect grounds and in incorrect ways that they are destroying people's lives and health and to use the tools we have and tighten the penal provisions? Or is it to spend a lot of time pulling out entirely new material that confirms what exists but also speaks about what is not permitted? It is this choice of path we face ahead.
Until now, I have chosen the path that we should sharpen and make use of what we have, but I do not rule out otherwise. I would like to listen to how the member, who has a long and solid experience of healthcare, views concepts such as symptom-relieving treatment and how it could be defined.
Anders W Jonsson (C)
Madam Speaker! We are in a situation where we see a need for amended legislation. This has been a subject of discussion for as long as I have been here, perhaps ten or fifteen years. We must ensure that the provisions are tightened, especially with a focus on the severe mental illnesses. It is clear that the demarcation against other diseases is difficult to make. That was why the investigation landed where it did.
The Council of State and the government hang it on the investigator's limitation, that it should be correct with symptom-relieving treatment. The definition of symptom-relieving in relation to treating and curative is that the latter is aimed at actually achieving a change in the disease, while symptom-relieving, just as in palliative care, is about something that is not aimed precisely at curing but at relieving symptoms. This boundary can therefore be drawn.
If one is hesitant about this, there is always the possibility of saying that neither symptom-relieving treatment of the truly severe conditions should be permitted. This, however, requires that one moves forward. It is not enough to just sit and say that one is following the issue closely.
There is no one in the profession who sees it as a possibility to manage this through increased penalties and existing legislation. It is also not included in the referral responses that this should be an alternative. That is why this discussion has existed for a long time. A determination is required. We cannot just point out the four diagnoses and say that there should be a ban there, but we must broaden it, primarily to the severe mental illnesses.
As appears from the investigators' proposal, there are also a number of other very serious diseases where precisely the treatment is crucial for the patient to have a chance of surviving at all. It is this that we must address. Every week we receive reports and information that this is a real problem in healthcare.
I am the first to realize that one must prioritize when it comes to the investigative system, which unfortunately is a bottleneck, but I mean that the government has the ability to prioritize both a reporting law, lowered snus tax, and reduced opportunity for interpreters in healthcare and so on. I think that this is significantly more urgent as it concerns a truly vulnerable group, but it requires the government to act.
It still pleases me very much when I listen to the Minister to hear that the problem has been noticed, but now it is a matter of moving from words to action. That nothing happened from 2019 onwards can be criticized, and I see representatives for the Liberals in the rural press now who argue that the Social Democratic government did not get anything done. I will at least remember that we had a pandemic during those years which meant that the Ministry of Social Affairs was fully occupied with other tasks, and I have full respect for this. But now, from and including the autumn of 2022, it is this government's responsibility.
I cannot understand why one does not move forward faster in this area when there are investigation resources for so much else that is apparently prioritized. This is about severely ill people who today suffer very badly due to a lack of effective legislation.
My question remains: Why is this not prioritized higher? Why is there no attempt to change the law? There is a proposal. It is possible that it must be corrected, but then one takes an initiative to do this, either through the department's officials or by appointing a new investigator.
Statsrådet Acko Ankarberg Johansson (KD)
Madam Speaker! I thank the member for the supplementary submission and comments.
The investigations that the member refers to do not fall under my area of responsibility or under the requirements I have for investigations to be conducted, so no problem arises there. It is healthcare investigations that fall under my responsibility.
What is contained in the investigation's proposal regarding age limits and a broadening to all diseases is, as stated, absolutely excellent. The distinction that treatment shall be prohibited is self-evident, because it is not a treatment that has evidence or that is good for the patient.
When it comes to symptom relief being permitted for both children and for pregnant women, we must define what is symptom-relieving and has evidence, and what in that group of interventions and measures we consider it reasonable to be allowed. Then we must build up knowledge in an authority that defines this, because it does not exist today.
When it comes to the experience that has been built up over hundreds of years in healthcare regarding what is evidence-based and what one has good experience of, we know what applies. Otherwise, one has a clinical trial and a study on how to proceed. This is, however, an area where we do not have that, and then we must build up such a thing in order to be able to know what is a symptom-relieving treatment that we believe would have acceptance. We must build up a structure around this that makes it possible to do so. Then one always needs to make a trade-off as to whether it is what we need to do and whether this would benefit or disadvantage the sector.
I believe that we need to invest the best resources, both when it comes to the investigation and when it comes to what we do overall. It is about people getting the care and support they need, which is evidence-based and which we know has proven experience behind it.
Other [things] tend to be deception where people are made to pay money for something that, in the worst case, is dangerous. We need to use all existing laws to stop this, and I want to say that the Marketing Act is not insignificant in this context to attack both this and other things we see in society today that should not exist and where something that is not true is portrayed.
There is a lot that can be done that can be good and that is included in rehabilitation interventions and much more, but today it is based on evidence. This exists within the area that we work with. This is something completely new where we are to leave everything that is health and medical care and everything that is evidence and proven experience and create a new field where we approve symptom-relieving treatment, not only for adults but also for children and pregnant women. It is a new field.
As said, we are following the issue, but it is not on my agenda at the moment or in the near future.
Anders W Jonsson (C)
Madam Speaker! In some way, I am pleased that the Minister is highlighting the problem. But the default mode that prevails now, that is, doing nothing, means that it is fully permissible to say to a twelve-year-old: "You have chosen to get cancer yourself - make sure to get our treatment with healing energy, and you will get well!" It is fully legal and permissible to say to the patient who has a severe depression and is on lithium to "stop taking that poison" even if the consequence might be a suicide. It is fully permissible to urge someone with schizophrenia to stop taking their preventive medication.
The alternative that the government has chosen – to do nothing, as I see it – is therefore unacceptable. If one wants to move forward, one must ensure that an inquiry is appointed to look into this. I am pleased when I see that the Liberals' spokesperson on healthcare policy has a debate article in the rural press where she writes that an inquiry has come forward with a proposal that involves significant tightenings and that that law must become a reality. She also writes that in the Liberals, one will never give up until that goal has been reached.
One can only hope that the discussion between the Tidö parties on this issue will ensure that the government can leave the passive stance it has had until now, that is, to wait and see, and actually ensure that it helps this group of people who are suffering very badly today. Legislation is required to address this.
Statsrådet Acko Ankarberg Johansson (KD)
Madam Speaker! I thank the member, not least for raising the issue. I think it is also part of the public opinion formation to be able to speak about the fact that these are activities that in many cases are deception where people's lives and health are actually put at risk - and where someone additionally takes payment for it.
We do not know what would have happened if the cases referred to had been legally tested based on the laws and possibilities that exist. I want to urge everyone who sees this to report to the supervisory authorities we have so that we can test whether the legal rules we have are sufficient or if we need to take more measures. The investigation that was submitted is, as mentioned, in many parts very good and wise, but in the division regarding how a law should be, some problems arise that make us have to evaluate whether we should step in and do this now or if we should do other things that are also prioritized.
The Government will truly follow up on the issue. I have also taken note of what the member refers to, and these types of alternative measures - it is difficult to even call it medicine - are dangerous. Every time this occurs, as well as other instances where we see that people's fear and anxiety are being exploited to make money from them while they are being exposed to life-threatening danger, it is despicable.
We therefore need in every way to use and sharpen the supervisory tools we have and ensure that those who carry out supervision are given better opportunities. Therefore, I raise the question both from a supervisory perspective, where I hope that we can test the legislation and the penal provisions that exist, and from the perspective that we will follow the issue. There are, however, some complexities in the bill that need to be further evaluated for this to be able to become a legislative product.
Source: The Swedish Parliament. The speeches come from the open data of the Riksdag, translated into English by AI, which may contain errors.