Patients need coordinated care. Pilot launch possible in the fall

It is possible that a pilot for coordinated care for patients with Parkinson's disease will begin later this year, in the fall. The health ministry has revisited a project that has been waiting as long as five years for implementation. - We would like there to be a coherent system of networks of centers that would offer a clear patient pathway, says Prof. Jaroslaw Slawek of the Medical University of Gdansk.

MINISTRY PULLS PROJECT OUT OF DRAWER

The first model for piloting coordinated care for patients with Parkinson's disease was prepared by the Polish Neurological Society in 2018. It lay in a ministerial drawer until early 2023, when the health ministry commissioned the Agency for Health Technology Assessment and Tarification to develop the pilot, along with a valuation of the benefit. That work is expected to last until May.

- This is a very complex issue, especially when we consider the specifics of Parkinson's disease, with which patients live 20 or 30 years. The offer of a comprehensive program must therefore be tailored to the different stages of the disease, the different degrees of progression and the different treatment methods that change over the course of the patient's life, says Prof. Jaroslaw Slawek.

REFERENCE CENTERS NEEDED AND ACCESS TO EXPANDED DIAGNOSTICS

Coordinated care would be centered around a reference center, where rapid and abbreviated diagnosis could be made and treatment planned for the early period. In the later period, when a patient has already developed complications, for example, this center would also serve to help determine further treatment and place patients on more advanced therapies.

- Comprehensiveness is supposed to be based on the fact that in a reference center we could offer such a patient expanded diagnostics compared to what we have today. We can't now, for example, order genetic tests, and in about 10 percent of patients, parkinsonism is just genetically determined. Today we also have at our disposal the same set of tests as a neurologist practicing in a neighborhood clinic," the professor notes.

Allowing patients to receive care organized around a reference center would also shorten the path they must take to hear a diagnosis.

- Today, patients circulate in the system, are diagnosed by two or three neurologists, are repeatedly hospitalized, and are given dozens of tests, often unnecessary. In the world, it takes an average of about a year for a diagnosis to be made, while in Poland a patient wanders around for 1.5, two or even three years before he or she hears what he or she is sick with, adds Prof. Jaroslaw Slawek.

CENTERS SHOULD BE NAMED ACCORDINGLY

The situation is also not improved by the fact that people seeking diagnosis and treatment encounter difficulties in finding a center where they will receive care under the guidance of doctors who specialize in diagnosing and treating people with Parkinson's disease.

- We need to convince the NFZ to create units with clear information in their name about what they do. I have been running a Parkinson outpatient clinic in Gdansk for a quarter of a century, and if someone were to look for it on the NFZ website, they are unlikely to find such information. The Fund, not knowing why, defends itself with arms and legs against calling, for example, a migraine treatment center a "migraine clinic. This is working against patients, because, after all, they are the ones who feel lost and don't know where to go," says the expert.

The coordinated care pilot will be conducted in selected centers that already have experience in treating Parkinson's patients. These are few in the country, as are doctors who specialize in working with such patients. The pilot period will therefore be a time in which not only will it be necessary to organize and implement a system of comprehensive care, but also to train the staff that will take care of the patients when the time comes to launch the program nationwide.

- There are places in Poland, for example in the northeast of the country, where we have practically no known people or clinics to provide services. There also comes communication exclusion. So we badly need to level the playing field. We also need to educate new staff. This year we are opening a Young Parkinsonologist Academy. We are happy that we have a lot of applications," adds Prof. Slawek.

However, staff training is not limited to neurologists. This is because coordinated care also involves the patient working with a physiotherapist. Those who specialize in working with patients with Parkinson's disease are also few in number.

The centers aspiring to implement the pilot are primarily: Gdansk, Warsaw and Wroclaw. The final choice will be made by the Health Ministry. The ministry plans to launch the program in September or October.