Patient power of change. Trust - understanding - empowerment

- The patient really is the force of change," said Iwona Czabak, president of Marfan Poland, giving the example of a teenage boy suffering from Marfan syndrome. The teenager required surgery for a concave rib cage, which approached the spine by only three centimeters. However, during the diagnostic process, it turned out that there was another problem - the patient had an aortic aneurysm, an affliction typical of Marfan syndrome, but not necessarily in children. Aortic aneurysms are operated on in adult hospitals, while for the boy - due to his condition - a single, combined, operation would be the best solution. And such, Iwona Czabak said, thanks to the parents' openness to dialogue and the specialists' openness to new experience, was carried out at the National Institute of Cardiology in Anin. It's a story from a few years ago that paved the way. - Today this solution, that two surgical teams work together, is a standard in two centers, WUM and GUMed," she stressed.

A change is taking place "here and now" in attitudes towards obesity, although as Katarzyna Glowinska, Social Advocate for People Suffering from Obesity, FLO Foundation, emphasized, people suffering from obesity are still invisible on the one hand, and stigmatized on the other. - It is not my fault that I suffer from obesity - this is how patients should think of themselves, while on the part of professionals the approach should be a mirror image: it is not the patient's fault that he suffers from obesity. - On our initiative, a team was established at the Public Health Council of the Ministry of Health, which is working to ensure that obesity is treated as a serious disease that needs to be diagnosed and treated, rather than an aesthetic defect," she said. One of the hard proofs of the change in attitude toward obesity will be the decision to include KOS-BAR in the basket of guaranteed benefits. The pilot program allows patients to be operated on until June 1, 2025, for the next twelve months the National Health Service will pay for their care, and specialists caring for patients under the program have in recent weeks more than once expressed concern about what the future of the successful - of that there is no doubt - pilot will be.

Patients suffering from endometriosis can already speak of a huge success. Lucyna Jaworska-Wojtas, president of the Foundation to Defeat Endometriosis, recalled that the struggle was extremely long. - "I have been fighting for thirty years to get the endometriosis patient into the health care system," she stressed, recalling that the first high-profile material on the situation of women who were not recognized either by the system or by a large part of specialists ("such a lady's beauty") was broadcast on TVN in 2005. There were online groups, forums, and finally - an association and a foundation. The relentlessness yielded results. - The Minister of Health announced the creation of a network of expert centers for diagnosis and treatment, both conservative and surgical, she recalled, stressing that women from all over the country are to have access to multidisciplinary teams, and the first patients will be admitted as early as July. - We fought for there to be care and for women not to have to bear the cost of treatment, she added.

- Women's health is a priority for the Ministry of Health, and this shows our proficiency," said Anna Kupiecka, president of OnkoCafe, pointing to, among other things, the return of funding for the IVF program from the state budget, the development of the HPV vaccination program, or recent decisions on the HPV-DNA test and liquid-based cytology, which will replace traditional cytology in the cervical cancer screening program, something that experts and patient organizations have been calling for for a long time. - The landscape of cancer treatment in Poland has changed dramatically over the past dozen years or so, but there are still white spots, diseases that are less well taken care of, she recalled, pointing, for example, to endometrial cancer, which has gone unnoticed for years but has a high mortality rate. - There have been changes in the drug program, but still eight out of ten patients with advanced or recurrent endometrial cancer do not have access to existing innovative treatment, she pointed out.

As she acknowledged, the area of breast cancer has changed the most, on the positive side. - The Ministry of Health has already done a great deal for these patients. Just mention breast cancer unity, the enriched drug program. However, there is a group of women whose health needs have not been met, she reminded. The problem is advanced breast cancer with low HER2 expression. - Medicine offers new possibilities, but they are out of reach. We know that not everyone can be helped right away, but we don't know what to say to patients whose requests for access to RDTL treatment are denied. The problem is that women with disseminated breast cancer cannot wait.

Anna Kupiecka also drew attention to the problem of lack of funding for multigene tests, which provide a precise answer as to whether chemotherapy - for certain groups of patients - is an appropriate and necessary therapeutic option. She also pointed out that the community has also been fighting for a long time for the availability of genetic tests from blood on an outpatient basis, which could also speed up diagnosis in situations where the patient cannot and should not wait, meanwhile patients still have to either be hospitalized or get bogged down in queues to genetic clinics.

Proof of fitness, according to Dominik Kuc, GrowSPACE Foundation, undoubtedly is and will be the emergence of the subject of health education in schools. - Younger and younger people will listen and talk about health, there will be a chance to shape pro-health attitudes, and not just impart knowledge about diseases and their symptoms, he said, pointing out that health education should not be centered around puns, but instilling the obvious truth that the most important things for health are prevention and prophylaxis. - This is also what young people expect, including those with mental health problems, he said, expressing the hope that health education will help reduce the stigmatization of such people. - It is still a problem to go to a school psychologist, to enter the office or even to admit to one's parents that one needs such help," said Dominik Kuc, supporting the Children's Ombudsman's proposal that minors should be able to receive help from psychologists without parental consent. As he stressed, pro-frequency activities are needed to ensure that the largest possible group of children and adolescents can benefit from health education.

Empowerment is reflected not only in what patients and their organizations receive from policymakers, but also in the ability to influence - through their own choices - their health. Malina Wieczorek, president of SM Walcz o Siebie, presented unconventional, but backed by hard scientific data, examples of such choices - specifically, the effect of visual arts and music on slowing down, postponing in time, neurodegenerative processes. - We are living longer and longer, so we should take more and more care of our brains, provide them with various activities to delay dementia processes, she stressed. How to do this? Reading, listening to music, fine arts, even painting strengthen connections in the hippocampus, an area of the brain crucial for memory. Drawing helps maintain the ability to concentrate.

It has been verified that seniors who play instruments have a 63 percent lower risk of dementia. Going to a gallery or museum once a month reduces that risk by 32 percent. But even being surrounded by greenery every day improves cognitive function by 16 percent. - Art and nature are a shield, an insurance policy, she stressed.