Heike Norda is Chairperson of the Independent Association of Active Pain Patients in Germany, SchmerzLOS e.V. in Neumünster. She has been a pain patient since 1982 following a bicycle accident and several operations and hospital stays and has been involved in patient self-help for many years.
Do you remember how your involvement in this area started?
Very well. In the late 1990s, I was in a pain clinic, where I discovered that I could help myself to cope with my pain. During one of the surgeries on my knee, I had suffered some nerve damage, leading to severe nerve pain, but I just wanted to stay positive despite the pain. In the pain clinic, I saw a small notice for a support group, and it was in that group that I had my "eureka moment". I met a woman who had very similar problems to mine. She told me that her colleagues were also becoming increasingly displeased when she had to call in sick. It was so good to talk from one sufferer to another. It felt only natural for me to then establish a self-help group back home in Neumünster. I have met so many valuable people over the years, which helps me immensely and gives me support. We’re all there for each other. We don't give advice and recommendations at our meetings, but occasionally we invite experts to speak on the subject of the doctor-patient relationship or even to explain about new medications. This is a good exchange of knowledge.
What do you expect from the experts?
We very much want patients to be taken seriously, because we can really sense it when doctors and therapists approach patients and their history without any prejudice. Our wish is for our own wishes to be considered. For example, lots of different sports activities are offered in pain clinics, but it would be nice for patients to be asked what they would or wouldn’t like to do. We often know exactly what’s good for us. The more individualized the discussion of treatment goals, the better. Another problem is that realistic as well as unrealistic goals need to be discussed quite openly and honestly with patients. Even after the best treatment, you won’t go home one hundred percent pain-free. Patients need to be aware of this. Communication is the key to mutual understanding.
What advice do you have for patients?
We need to be very honest. I can't trust a new doctor right away, and I have to be allowed to say that. We also need to be able to express our wishes. And in terms of transparent communication, I would like, for example, to also receive a copy of a physician’s letter without having to ask, rather than it only being sent to my family doctor. For our own part, we should also be honest, ask questions and be open with a new doctor. Patients should prepare themselves for their visit to the doctor. This is really important because doctors often have limited time. So you can't ramble on for ages, but should make a list of the most important points in advance. This saves time for everyone. As a patient, you also need to have an understanding of the doctor’s perspective. For example, you should tell the receptionist in advance that it might take longer and ask for a slightly longer appointment.
What problems are created by the flood of information, e.g. on the Internet?
Everybody googles their symptoms, illnesses, and different treatments, but I always advise: Check the company details on whatever website you’re looking at! There are many companies roaming around on the internet and in forums that have very different interests but hide it well. Personally, if I don’t understand something, I ask a trusted doctor.
The best thing would be for doctors, together with self-help groups, to create lists of which websites are good. Patient forums are also a problem because they are in no way online self-help groups. We used to have a forum in our self-help association, but there were also some dubious things being posted, so we don’t do it anymore. Anyone can post anything in these forums! Nobody knows anyone’s identity and also what their interests might be. I have another important concern: 10% of our population in Germany is functionally illiterate and these people often do not understand websites.
One would need to recommend good videos on YouTube that are easy to understand, including for people who do not always feel confident in our language. Doctors often think: A lot of text is good. But I know from experience that this approach only works to a limited extent.
What do you think about the supply of pain therapists?
It’s poor, because for instance, when a doctor retires, there’s often nobody to replace them. At least, that’s what I can say about the situation here in Schleswig-Holstein.
The Association of Statutory Health Insurance Physicians is making an effort - there is also a key for the supply, but there aren’t enough therapists. We should start with the young physicians and simplify the process for achieving the additional qualification for "specialist pain therapy". You're already a specialist, and then you have to do extensive additional training - that's often a stumbling block. It’s also simply a question of more money to create incentives. It's terrible to see how long the waiting times are, even though all the experts say that acute pain must not become chronic. You can't wait for months in that case!
How willing are patients to participate in scientific studies - basic research as well as clinical studies?
Some of our members get annoyed because there they often receive too many requests. An incentive should be created. A voucher or something like that. That would help. Sometimes the request is not well explained. You get a letter saying "I need this or that from you" but then you never hear about it again. But as a self-help association, we would also like to publish findings from researchers. Maybe studies could also be created together with us as a self-help group. I can say from my own experience that patients like to feel part of the research. And transparency is also very important here. If I’m going to take part in a study, I want to know why the research is being done and what its goals are.
For more information, visit https://www.uvsd-schmerzlos.de/