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Description
The aim of the project which is directed at by all of the described activities is improvement of professionalization, quality and extent of activity of patients organization.It has been founded already in 1994 and it belongs among organizations with the longest history in the area of rare diseases(taking into account the organizations working in favor of patients with MPS and similar metabolic disorders).MPS remains still an incurable and lethal disorder in most cases.The specifics and complexity of the work of the patients organization follow on that.The project ensures the improvement of the level of managing,personal and communication competences of the organization.The realization of the project will lead to a better effectiveness of activities which were performed before.The activities of project are focused on the improvement and development of these areas:internal management of the organization,education of and communication with the target group,Advocacy activity both in communities and at central level,professional support of the target group.The stated aims will be achieved via the following activities:1)Reinforcing of the staff dealing with the project’s activities2)Direct support of the target group3,4)Educational activities to the target group and of the workers5)PR activities towards both lay and professional public6)Information materials for the target group and doctors.The project is submitted as a two-year project–it hence enables to better fulfill the stated indicators comparing to short-term projects.The project follows on and extends the existing portfolio of activities.The project team is experienced,the members work in the stated area for a long time,and the team will be completed by new professionals from the helping professions.Contacts with professionals who are considered to be added to the team are already established.The ultimate aim of the project is to contribute to the improvement of the care of the patients of the target group.
Summary of project results
The project was necessary for the development of the patient organization. The activities provided comprehensive support to families of children with serious illnesses. After the diagnosis is communicated and then the support of the Centrum provázení, the family comes to our Society. The project ensured continuity of care and subsequent transition to "normal" life with the support of the patient organisation. Families were provided with crisis support (telephone crisis assistance), professional counselling and specialised legal counselling. Throughout the project, we worked with patient families to develop family stories, the subsequent production of individual publications and the content of educational seminars. A challenge for us in the beginning was to find a lawyer – we managed to establish cooperation with Mgr. Radka Pešlová, who is a leading expert in the Czech Republic on patient topics. It is important for us that this support for the families continues after the end of the project. The second difficulty was the impossibility of Dr. Hájková (the birth of the child in September 2022) to participate in training courses to improve her qualifications. An amendment to the project was approved and the activity did not take place.
In the first phase we focused on building a stable team to implement the project. The division of roles in the project, setting up a model – information transfer, linking activities, meeting and consultation possibilities. After the initial part, we started looking for a lawyer – unfortunately, it was not possible to get one for a longer period of time (consulting was still ongoing and was provided by Dr. Háková and Prof. Michalík – a lawyer). Crisis support was set up – families were informed of their possibilities. Subsequently, a publication plan was developed on two levels – project publicity and education and information towards patient families. We then focused on the content of the educational course for the target group – we built on previous meetings with parents and were informed already during the development of the project what topics they were interested in.
Overview of activities: Project management, reinforcement of staff capacity, project publicity, educational events, educational seminars, continuous updating of the website and preparation and publication of brochures.
An important part of the project for us was the so-called administrative service - this is the "invisible" activity of the project - preparation of documents and materials, providing educational space, communication with the publishing house, organization of individual activities, their monitoring and much more.
Ensuring the implementation of the project and reinforcing the staff capacity in the size of Norwegian FTE 0, 662.
Expanding support for new patient families – two newly created work positions that were not previously in the Society – Telephone crisis support, legal counseling.
Regular updates to patient families on Society activities and project implementation –15 “Dění” sent out.
Realization of two training courses in the framework of the National Meeting – 60 caring parents trained each time.
Ongoing Educational Event – made up of sub-activities mainly: publishing a series of articles, interviews, stories of families, meetings with doctors and staff of accompaniment centres, active lecturing activities.
Updated website – the aim was to make our website more active for patient families – a total of 20 updates were ordered – sharing articles, interviews, family stories.
Publishing brochures – 7 individual brochures (Průvodce pro rodiče dětí se závažnou diagnózou…) ) and one summary brochure (Průvodce pro rodiče dětí se závažnou metabolickou diagnózou, ISBN 978-80-244-6471-8) were published, for a total of 400 – 50 of each type.