The Association of People with NTM "UroConti", in cooperation with the Pro-Social Programme "NTM - Living Normally", has published the report "Patient with NTM in the Healthcare System 2023". This is its twelfth edition. The knowledge base of the ntm.pl portal was used in the preparation of the document
from 2002 to 2023. Data provided by the wider public administration were also used. The report presents the latest data on the situation of NTM patients
in the health care system in Poland. It focuses on social
and economic costs of incontinence, state reimbursement policies and long-term care issues.
What information will we find in the report?
For the first time, a chapter appeared in this year's study: "NTM as a consequence of oncological treatment". Important developments that have or will soon have a significant impact on the situation of people with incontinence in Poland were also noted. As every year, the report was prepared on the basis of
with the latest reports from the last 12 months. To create it, the authors used, inter alia, data obtained from the governmental website www.ezdrowie.gov.pl, which publishes information on health care in our country, including detailed reports and summaries. Data obtained from the Central Statistical Office and the Social Insurance Institution were also an important source of information.
- Unfortunately, more detailed variables showing the spending of public funds by the State Fund for the Rehabilitation of Persons with Disabilities were once again missing - says Anna Sarbak, President of the General Board of the UroConti Association.
Important developments for patients
The authors of the report highlighted important developments from the patients' point of view. Undoubtedly, one of them was the entry into force of the Ordinance of the Minister of Health of 27 October 2022 amending the Ordinance on the list of medical devices issued on prescription, which became effective on 1 January 2023. The document sets out new limits on co-payments for, among others, people with incontinence, stoma patients, diabetes patients or people
with disabilities.
– Unfortunately, the regulatory changes do not solve the problem of increasing patient co-payments. Patients, including members of our Association, who are supplied with tested and good quality products, have to pay even more than before the change due to increased costs caused, among other things, by inflation. Admittedly, changes to the financial limits have been announced, with a reduction in the co-payment for absorption products for adults to 20% and for children and minors under 18 years of age to 10%. Will these changes be a sufficient solution? It is hard to give a definite answer, we certainly need to hold off at least until the 2024 Report is published. - underlines Anna Sarbak.
In summarising the last year, the report also does not ignore the worsening economic situation that patients, including seniors, are currently facing. According to a study published by the Coalition "To help the dependent", of which "UroConti" is a member, it is clear that the expenses for medicines burden the household budgets of almost 95 per cent of elderly people, and more than 80 per cent of them happened not to buy prescriptions in the last few months due to the prices of medicines. However, a programme of free medicines for the over-65s may offer seniors hope. Legislation to this effect was introduced on 1 September 2023. The free drug scheme also covers children under 18 years of age.
Communication is key
Unfortunately, the health care system has its weaknesses. In Poland, the problem of communication between the patient and doctor and the patient and nurse is still noticeable, and consequently the lack of knowledge of the patient about prophylaxis and treatment of urinary incontinence.
– A large proportion of people with NTM do not report such complaints to their GP, nurse or urologist, gynaecologist or midwife and, in turn, medical professionals do not often ask about it. This can already be traced back to school education, using a curriculum that is far removed from the contemporary challenges of public health. We therefore reiterate the recommendation to expand educational activities, starting as early as primary school, through practical information
about prophylactic methods and measures available to maintain basic body hygiene
and maintain daily life activities - explains Anna Sarbak.
Therefore, the conclusions included in the report clearly indicate that the doctor, nurse and midwife of the PCP should have knowledge of NTM prophylaxis, diagnosis, treatment methods, as well as the types of
and optimum selection of absorbents and hygiene and skincare preparations to which the patient should have access at all stages of treatment.
Widening access to new therapies is necessary
"UroConti" also upholds the recommendation to introduce new, proven therapeutic substances with different mechanisms of action into the list of reimbursed medicines, in order to expand the possibility for patients to adapt their therapy individually. While combination therapy is already being developed in other European Union countries, involving the combination of two therapeutic substances with different effects, in Poland, the doctor prescribing the prescription is forced to deal with the following in the first instance
with the patient's financial capacity, instead of optimising therapy. At this point, it is impossible not to mention the extremely unfair decision not to reimburse mirabegron, which is the only drug registered and dedicated to second-line treatment of overactive bladder syndrome (OAB). This decision by the Minister of Health has meant that Poland remains the only country in the European Union without reimbursement for this drug.
From 2019, sacral neuromodulation is fully available as a guaranteed benefit
in urology and gynaecology departments, but only for patients with urinary incontinence (NTM). The problem is the lack of access to this therapy in patients with faecal incontinence (NTK). Our Association emphasises in numerous correspondence with policy makers that sacral nerve neuromodulation therapy in patients with both NTM and NTK or only NTK, who are usually cared for by proctologists, should be available in Poland, as it is in other European countries.
Strengthen long-term care
The 'UroConti' experts also point out that there is still a lack of systemic solutions to strengthen long-term care, including NTM care.
– Too little concrete and too many unknowns. This, in my opinion, is the picture painted by long-term care legislation. Unfortunately, we can see that solidly developed strategic solutions are not followed by drafts of implementing acts that would meet the implementation of the long-term state strategy. i supporting the effective functioning of the health system - concludes the President of the UroConti Association.
The report is available for download at www.uroconti.pl and www.ntm.pl.