Actually, this meeting should have taken place weeks ago. But then barbara bauer had to go to hospital unexpectedly. After eight days of inpatient treatment at the schweinfurt hospital, she was discharged – without any findings. But for barbara bauer, it's clear what's behind her pain: lyme disease, an infectious disease transmitted by tick bites. Together with other members of the bad kissingen self-help group, she initiated a signature campaign in november to draw attention to what she sees as poor medical care in the district and deficits in research.
The main demands of the petition are: better medical education about the symptoms and treatment options of lyme disease, less dogmatic research and simplified recognition of professional disability. Since she was bitten again by a tick in december, barbara bauer's health has deteriorated. "I have so much pain in my joints that I can't sleep anymore", it tells. Their expectations of the petition were accordingly high.
Now the answer came from munchen: the petition is considered "done" looks at. That is, the state parliament sees no acute need for action, the problem lies rather in a "lack of information" from the self-help group. Sabine dittmar, a member of the bundestag, takes a critical view of this assessment: "this letter deals primarily with the situation of doctors in the district. But the group has a completely different concern, namely research and the reimbursement of diagnostic costs."
Petition needs other focus
Sabine dittmar first met with the group about a year and a half ago at the multigenerational house and encouraged them to start the petition. A few weeks ago they discussed the topic again in their burgersprechstunde. "They told me that they also wanted to submit the petition in berlin. However, the bundestag will not comment on the situation of general practitioners in bad kissingen." How should it go on now?
The group must focus on clear guidelines for laboratory diagnostics, since the health insurance company will only cover the costs under certain circumstances. According to dittmar, the high number of 289 lyme disease cases in the county could also be interpreted as doctors here having a sharper eye on the disease and adhering more strictly to the reporting requirement that has been in place since 2013.
"I am probably the least disappointed of all, because I already expected such an answer", says christopher randt, who has been leading the wurzburg lyme disease self-help group since january. "At least the letter is detailed and with sources, so that we can continue to work with it." Barbara bauer is more critical: "i certainly hoped for more of this. The fact that the bavarian politicians are so little open to our demands is very disconcerting to me." Lyme disease patient heidi sattes-muller is also disappointed: "at least i expected the state parliament to do its own research. But we know ourselves what the answer says." In her opinion, the state parliament should have passed the issue on to a working group. "But we were turned away."
Patients feel insulted
The initiators of the petition are particularly annoyed by a certain line in the reply letter: it says that lyme disease patients were often referred to "doctor google" trust and all too quickly found self-help groups. "This is insulting", finds heidi sattes-muller. State parliament member sandro kirchner rejects these accusations: this statement is not directly directed against the bad kissingen self-help group and its petition, but must be understood in general, kirchner defends himself. The support group had probably taken the answer very sensitively, as some members have been suffering from the disease for a long time, he says.
Kirchner was also unable to confirm the accusation that the group had been turned away in the state parliament. "We certainly understand their concerns. The petition was treated no differently than any other." On the contrary: during the discussion in the state parliament, the deputies had even asked the committee for health and care a striking number of questions. According to kirchner, the protocol was also sent to the local association of panel doctors for further processing. Although it is unlikely that a working group will be set up in the state parliament, kirchner advises seeking comrades-in-arms in other self-help groups in order to raise awareness of the issue at the federal level as a next step.
"We are now working through the letter from the state parliament for false information and are looking for points of attack", says christopher randt. "Then we turn again to the state parliament. But in what form is not yet clear."
Help with lyme disease
Contact the bad kissingen self-help group meets every four weeks at the multi-generation house. The wurzburg self-help group can be contacted via the mail address borreliose-shg-wue@gmx.De accessible.