The new Guiding Principles on Training for Social Services Providers focuses on the need to better prepare social care providers to work with people living with a rare disease, given that care provided via social services and policies is instrumental to the quality of life of patients and their families.
This document, the latest outcome of the European Union Committee of Experts on Rare Diseases (EUCERD) Joint Action: Working for Rare Diseases,informs Member States (MS), rare disease experts, patient organisations and others involved in relevant policy-making and advocacy at European, national or regional levels by providing a set of guidelines for the implementation of training programmes for social services providers.
The guiding principles specify the elements that training for social services providers should include and delineates a set of measures needed to establish efficient training at the MS level.
Experts of the multi-stakeholder group involved in the development of these guiding principles consider that such training should be collaborative across different sectors, including Centres of Expertise, university hospitals, Specialised Social Services, patient organisations, and other relevant stakeholders. MS are also reminded that these training programmes need sustainable and adequate funding and should be included in national rare disease plans/strategies. Of particular interest is the list of recommended Contents that training for Social Service Providers should include.
Besides seeking to increase the quality of services provided, training of social services providers aims at facilitating the integration of people living with a rare disease into services that are not specific to rare diseases, thus promoting the optimisation of resources at MS level.
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