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Description
Within the project, we will focus on improving the care for patients with SMA in healthcare facilities and expanding the services provided to them by the SMÁci patient organization.
The main topic addressed by the project are the large discrepancies in the patient approach in particular neuromuscular centers, which provide care for these patients, as well as non-compliance with the SMA Standards of Care. We will therefore conduct a questionnaire survey among patients, focused on their experience with the care of physicians and specialists in the neuromuscular centers. We will regularly publish the results on the website and use them to provide feedback to neuromuscular centers and their experts, and we will strive to improve their services and adhere to the SMA Standards of Care.
We will also organize training for patients, to inform them about the SMA Standards of Care. Patients will know what care they are entitled to and will be able to request it. Thanks to questionnaire surveys, they will be able to inform us about areas for improvement. The aim of this part of the project is to improve and balance the level of care for patients with SMA in neuromuscular centres in the Czech Republic.
The aim of the second part of the project is to improve the services that the patient organization provides to its members. We will expand the capacity of the telephone line for crisis intervention and psychosocial support. Crisis intervention and psychosocial support will also be provided directly in patients'' families.