Direct Care Services are aimed at direct attention to families, carers and people suffering from rare disease, being their objective getting these people to achieve the highest level of developing and self-realization, the best degree of personal autonomy and the improvement of their quality of life as well as their carer families’ ones.
The following programmes and services are available in this area:
It includes programmes in which families, carers and people with rare disease are given specific attention by several professionals from a social and health point of view. It is developed through short stays in the Centre for families with children, affected and non-affected by a rare disease, where families and people with similar situations can join and exchange experiences. It provides information about resources, advises of characteristics, symptoms and possible sequels of diseases. It organizes congresses, round-table discussions, workshops and other guiding and support actions.
The Centre organizes temporary stay programmes during holiday periods for people with rare diseases, especially from July to September (15 days lasting at most), which allow families to have relief from care giving or daily caring. During their staying time, people with rare disease and similar problems can take part in training, educative activities, especially for children, and leisure and free time activities, organized by the Centre, which encourage and allow them to break from daily routine. Users will be able to come with a support person when they need it in daily routines or, on their own, if they have enough autonomy.
It provides training about several points of disease in order to improve capacities, skills and co-responsibility in relative’s care and attention. It trains people with rare disease in the best skills for their personal autonomy and families and main carers in daily care and attention to patients so that they can be more suitable for dealing with the problems derived from the disease. It guides about the impact on the other family’s members, family routine and other interesting aspects. It encourages groups and self-help networks setting up.
The Centre gives information and advice to involved NGOs about different associative possibilities, care resources, regulation they can be affected by and all those interesting points they can need relating to their organizations, as well as it is a meeting place to put topics of their concern in common to have better knowledge of diseases and their care and set up collaboration ways.
It has been thought for people with rare disease and their families that live in the Centre environment. It gives daytime attention through intervention programmes aimed at patient’s needs and their social and family situation, especially psychosocial condition ones (interdisciplinary evaluation, early care, rehabilitation, training in daily life activities, readapting to family and social’s environment,…) and educative.
The Centre has family apartments to resident lodging of people who take part in care programmes for families and NGOs as well as for holiday respite programme.
It also has some daily continuous care places, part-time or itinerant, for users of Rare Disease Multidiscipline Care Service (Samer).
Última actualización: lunes, 10 de junio de 2013
© Instituto de Mayores y Servicios Sociales (Imserso) 2009
CRE Enfermedades Raras (Creer) de Burgos