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Description
PARENT PROJECT, z.s. is a Czech patient organization founded in 2001 by parents of children with Duchenne or Becker muscular dystrophy. The organization focuses on advocacy, individualized care, education, raising awareness, international cooperation, cooperation with doctors and neuromuscular centers in the Czech Republic and also organizing social gatherings for its members.
At the moment, the team consists of active parents of children with neuromuscular disease and of several experts (doctor, psychologist, physiotherapist, occupational therapist, social worker), everyone on the team is irreplaceable and due to the limited personal capacity the organization can''t reach the maximum potential.
The goal of this project is to PROFESSIONALIZE the organization and to secure long-term FINANCIAL SUSTAINABILITY.
The key activities are:
1) strengthening staff capacity
2) development of provided services
3) patient advocacy and networking
4) publicity of the project
The primary target group are patients with neuromuscular diseases and their families, the second target group is the public and also other patient organizations working who we cooperate with.
Our partner for this project is Frambu Foundation, Norwegian organization running one of the best centers for patients with rare disorders in Europe. Frambu Foundation will be our free of charge mentor and advisor through the process of restructuring.
Summary of project results
Thanks to the project, it was possible to restructure and professionalize the organization. The project contributed to its stabilization. As a part of the strategic planning, we have set up main processes for the functioning of the organization and team members. The project has helped to increase the capacities of the team, expanded social services for the target group of patients and their families, which were set on exact needs of our patients thanks to the project evaluation. Last but not least, the project enabled us to professionalize the management of the organization and strengthen our advocacy work so that it pushes the social care system in the Czech Republic, in the longer term, to change in favor of the real needs of patients.
The big challenge was for us to get new quality employees for those newly opened job positions.
The key action was the professionalization of the team (the position of executive director, PR manager, advocacy staff, fundraiser, etc. was created), which made for workers in direct care possible to devote themselves purely to patients, so they no longer deal with administrational tasks, creation of documents for advocacy work, posts for social networks etc. The professionalization of the team has also strengthened other areas of our work. Thanks to the project, our organization has strengthened the area of advocacy work toward the systemic change for improving conditions of the Czech social care system for our patients. We do have higher capacities for awareness campaigns and communication with our community of followers and wider public (lay and professional public), which ensures the greater stability of our organization, greater power for our advocacy work, which all together increases our motivation for our work.
Last but not least, we have set up strategic processes to make the organization professional and stable. During the project, we have created a strategic plan for the development of our advocacy work, a communication and fundraising plan and we have also tried a large awareness campaign out, the output of which was an extensive book publication of patient medallions. Communication activities towards the public also flowed in line with fundraising needs. Together, we managed to organize and communicate with the public several fundraising events and activities of the organization, which brought us new donors and donations. Throughout the project, we had been carrying out an evaluation of our services for patients and their families. We have integrated the evaluation results into the new design of our services. The new design of our services was established also with the contribution of the norwegian partner the ,,Center for Rare Diseases FRAMBU”, who shared his know-how with us during 4 common on-line sessions. We have been also inspired by the setting of social care in Norway and have incorporated some of the good practices, which are adaptable to Czech conditions, into the Strategic plan for the development of our advocacy work.
The purpose of the project was mainly: integration of real patient needs within new strategic documents of our organization and development of new service design for our patients and their families. To manage this targets we needed to strengthened of our organization so that we would be able to do mentioned changes for our patients within our organization but also to speak for them before the professional public and participate in changing the social care system in their favor.
The project fulfilled the purpose of the development of our social services by increasing our consultation capacities from 1,500 consultations per year to 3,418 per year. The professionalization of our organization has enabled our social workers to devote themselves exclusively to our patients and thereby to improve the quality of services for these clients. The project evaluation showed us that residential services are very popular among clients. Thanks to the professionalization of our organization we have managed to organize 16 of such stays.
As part of the evaluation, two questionnaire surveys, evaluation workshops (such as focus groups, discussion evaluation groups or individual evaluation interviews) took place. The evaluation helped the team to set up the new service design for clients according to their wishes and needs: "Parents of children and adults with muscular dystrophy greatly appreciate the possibility of meeting during residential social services, they also appreciate the mutual support and professional multidisciplinary help during those stays.They value assistance services during residential social services and the possibility of professional medical consultations, consultations with a physiotherapist, occupational therapist, social worker, psychologist and psychotherapist. The newly offered outreach services at the families'' place of residence and offerings of comprehensive solutions to the family''s situation, gained popularity. An important topic turns out to be the need for sensitive and highly professional support for families with older and adult children when approaching, opening up and processing challenging topics that have been taboo in families for long (palliative care, health complications, grief, bereavement, separation of children from their parents, loss and more). Based on the evaluation, we have supplemented our residential social services with meetings with many external experts, on the above-mentioned topics, but also with new experiences for patients, such as the opportunity to try some sports that are unavailable to patients with muscular dystrophy in ordinary life. For example - to try virtual reality, programming and other activities that clients named in the questionnaire surveys.
Thanks to the project and the professionalization of our organization, we were also able to implement advocacy activities within the Patient Council and its working groups, as well as in the working group for conceptual solutions for home care. The results: Communication with experts in neuromuscular centers improved and truly multidisciplinary care for children and adults with muscular dystrophy has been developing in czech hospitals in cooperation with our organization.
Summary of bilateral results
The cooperation with our Norwegian partner was a great inspiration for us. In many ways we are dealing with similar problems and patient situations in both countries. However, the FRAMBU Centre has been taking care of patients with rare diseases for much longer, so sharing with such an experienced partner has clearly enriched us and allowed us to look at individual topics of patient care from a different perspective, broadened our view on the solution of individual topics and shown us new ways. One of the highlights for us was the sharing of knowledge about care coordination in Norway and palliative care for adults with Duchenne/Becker muscular dystrophy, which the FRAMBU Centre is also starting. We really appreciate the partner''s willingness to discuss different aspects of care with us and the time they put into preparing the calls.