Post-stroke patients need comprehensive, specialized rehabilitation

We are fresh from the publication of the Report on the situation of post-stroke people in Poland. What picture emerges from the data presented?

This situation is actually uninteresting and suboptimal as far as the patients themselves are concerned. We can be happy that we have access to modern treatment in the first phase of strokes, and this is a good thing. On the other hand, what is problematic is the situation of post-stroke patients when they leave the hospital after those 7-10 days and begin their struggle to recover and return to a normal life. We have too little access to comprehensive rehabilitation, there are not enough funds for it. We also don't have a support system dedicated to these patients. They end up in the general system and no one leans into the specifics of this disease, its complexity. These patients are stakeholders in five institutions that do not cooperate with each other in any way. These are: National Health Insurance Fund, Social Insurance Fund, Social Insurance Fund, Regional Disability Assessment Panel and PFRON. There is no such system to guide these patients through what they are entitled to. Our report calls for the introduction of the institution of a stroke navigator, that is, a person who could bring all this knowledge together and pass it on to patients and their families. There are such systems in New Zealand, in Canada, and also in Germany, some states provide this kind of guidance and direct support.

What are the challenges and needs associated with the process of returning post-stroke individuals to work?

We have devoted one chapter to this very topic. There should be a way to assess post-stroke capabilities. Now no one is actually doing this. Patients report to Social Security examiners, of course, but we get signals from patients that not all aspects and ailments that appear after a stroke are properly analyzed. This includes, for example, cognitive impairment. A post-stroke patient may be physically fit, but may have cognitive impairment. This is quite often a problem that adjudicators do not understand, so that patients do not have the benefits they should have. They don't have vocational counseling related to the characteristics of the disease, which is stroke and precisely to cognitive impairment. In the chapter on returning to work, we are advocating the introduction of such a person who can evaluate these patients and can also coordinate assistance for them. In the West, such people happen to be physiotherapists. There is talk of so-called occupational physiotherapists, in other words, those who advise and evaluate patients on what they can do after a stroke.

Often a stroke completely ruins a patient's chosen career path. Imagine, for example, a lecturer who, as a result of the disease, speaks unclearly. Is the system able to help such people?

Unfortunately, we don't have such a system that would help someone re-brand themselves, that would match and offer other solutions to this dysfunction that occurs after a stroke. It is not the end of the world, even though it is a very serious disease. After a stroke you can function, you can live, you just need to get the right support. This support has to be very specialized, targeted to those needs that post-stroke people have.

These needs are probably very large and varied? Some need physical rehabilitation, while others, for example, need support from a neurologist....

We feel that this is such a group of patients that is a bit unnoticed. This is due to many things, while we would like this to change as a result of the publication of this report and our activities. Running the Brain Stroke Foundation's hotline for actually 12 years, we have been receiving signals about the needs that stroke patients have. 80 percent of requests for help are related to access to rehabilitation, especially for those most severely affected by stroke, i.e. patients with major motor dysfunctions. These services are really too few in relation to the needs. The group of patients who need rehabilitation is estimated at 20-40 percent of all patients. Official data from the National Health Fund says that in some provinces this primary rehabilitation is offered to only 15-16 percent of patients. As for secondary rehabilitation, these official data do not exist. We can get such data by analyzing the treatment appointments page. It turns out that sometimes these appointments are two years old.

Does the Brain Stroke Foundation take any action to improve the situation of stroke patients?

Yes, of course. In addition to running a hotline and publishing reports, the Foundation is actively working to improve the situation of post-stroke patients. On October 16 of this year, we sent a letter to Minister of Health Izabela Leszczyna, in which we expressed our satisfaction with the ongoing discussion on the revision of the B.57 drug program for the treatment of patients with limb spasticity using botulinum toxin type A. At the same time, we called for the new drug program to take into account the comments made by the AOTMIT Transparency Board regarding the possibility of treating spasticity with all reimbursable preparations of botulinum toxin type A, without limiting the etiology and localization of the muscles. We asked for the deletion of standing from the program's inclusion criteria to ensure equal access to treatment for all patients in need. In addition, we pointed out the need to provide treatment for children with focal spasticity of the limbs with an etiology other than cerebral palsy, and to continue treatment for patients with cerebral palsy beyond the age of 17. In the letter, we also stressed the need for a comprehensive approach to the treatment of spasticity and the addition of botulinum toxin administration as a summation benefit in neurology, rehabilitation, palliative care and hospice units. We hope that the Ministry of Health will positively consider the demands made and contribute to improving the quality of life of patients with spasticity.