|PATIENTS, ORGANISATIONS, SERVICES|
Specialised Social Services
Specialised Social Services are instrumental to the empowerment of people living with rare diseases and are essential to the improvement of their well-being and health. This section provides the list of services in Europe, as well as facts, case studies and guidelines for these services. Testimonies of both patients and volunteers can also be found below.
What are Respite Care Programmes?
Respite care is provided, on a short term basis, for people living with rare diseases, so that their carers can have a short relief from care giving. Many of the people living with rare diseases involved might otherwise require permanent placement in a facility outside their home.
Respite Care Services (RCS) can be offered in various ways:
- Residential respite: the person living with the rare disease goes away to an adapted centre to be looked after by someone else, a “respite care family”, for a while;
- Domiciliary care: some services offer a caregiver who comes to the family home, and take over care giving duties for a while so that the regular carer can have a break from the daily routine of care giving;
- Day care respite: day care centres, nursing homes, institutions or respite care group homes with assisted living facilities (no overnight facilities);
- Emergency respite: services that give access to respite on a short notice in the event of an unexpected emergency.
Why are they needed?
Respite care enables the caregivers to maintain the ability to continue care giving. The benefits to carers described in the literature also fall into these two broad categories: stress reduction and self-esteem increase; and improved family functioning (Merriman and Canavan, 2007).
A second purpose of respite is to make it possible for people affected by a with rare condition to live according to their usual daily routine and to provide a place to experience and perform recreational and meaningful activities away from their parents/other caregivers. Benefits to service users mentioned in the literature are socialisation, and enjoyment of experiences outside the home (Merriman and Canavan, 2007).
Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress and exhaustion associated with continuous care giving. Three fifths of family caregivers aged 19-64 surveyed recently by the Commonwealth Fund, a private foundation working with health care and related policies, reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non-caregivers.
The long term implications of providing respite care involve benefits for carers and people living with rare diseases. The families will become better carers because of the relief respite provides and due to the exchange of experience with respite care providers while people living with rare diseases will increase their life quality. Respite often prepares people affected by a rare disease to live more independently in the present but also as grown-ups. In this way, the quality of the overall care provided will improve.