Improving the level of care for patients with SMA in healthcare facilities and expanding the services of the patient organization
Published
| Region | National coverage |
|---|---|
| Title of the Programme | Health |
| Title of the Project | Improving the level of care for patients with SMA in healthcare facilities and expanding the services of the patient organization |
| Number of the Project | ZD-MGS3-023 |
| Project Promoter | SMÁci |
| Project Partner from Donor State | N/A |
| Czech Partner | N/A |
| Status | Estimated project duration: 12/2021 – 12/2023 |
| More Information | Target group: People with disabilities Web pages: |
| Total Eligible Costs | 61 526 EUR |
| Grant | 61 526 EUR (100 %) |
Summary:
The project will focus on improving the care for patients with spinal muscular atrophy (SMA) in healthcare facilities and expanding the services provided to them by the SMÁci patient organization. The main topics 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.
Therefore, a questionnaire survey among patients will be conducted, focused on their experience with the care of physicians and specialists in the neuromuscular centers. The results will be regularly published on a website and used to provide feedback to neuromuscular centers and their experts. Thus, the project will strive to improve its services and adhere to the SMA Standards of Care.
A training session for patients will be organized, 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 the organization about areas for improvement. This part of the project aims to improve and balance the level of care for patients with SMA in neuromuscular centers in the Czech Republic.
The second part of the project aims to improve the services that the patient organization provides to its members. The capacity of the telephone line for crisis intervention and psychosocial support will be expanded. Crisis intervention and psychosocial support will also be provided directly in patients' families.