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European network of respite care services for rare diseases (May 2007)

INSIGHT

European network of respite care services for rare diseases

The creation of a European network of organisers of respite care services is part of the development of networks of services included in the Rare Disease Patient Solidarity Project (RAPSODY). RAPSODY is a major Eurordis project, involving 10 partners and lasting two years. Other services covered by the project include help lines and therapeutic recreational programmes. What respite care services entail is not always clear in people’s minds, whether rare disease patients or not. One of the first tasks of the project is therefore to provide a shared definition of respite care services. ‘The joint definition agreed by the team is the following,’ says Shane Lynam, project coordinator. ‘Respite care is provided on a short term basis to medicalised patients under the age of 65 who normally live at home, so that their carers can have a break from care giving. Respite care should allow family members to have time and temporary relief from the stress they may experience while providing extra care for a family member living with a rare disease.’ Respite care services enable the family to have planned temporary, intermittent, substitute care, allowing for relief from the daily responsibilities of caring for the person living with the rare disease.

There are several approaches to respite care:
  Residential respite: the person living with a rare disease goes away to be looked after by someone else or by a centre for a while;
  Domiciliary care: a caregiver comes to the family’s home and takes over care for a while so the care giver(s) can have some time off;
  Day care centre or respite group home with assisted living facilities;
  Emergency respite services: parents/spouses/family/staff need to be able to access services on short notice in the event of an unexpected emergency. ‘For many families the respite care will work as an experience in increased independency: the services of respite care may play an important role in the whole family’s process of disengaging the person living with a rare disease from his or her childhood home and making preparations for an adult life in their own home,’ says Shane Lynam.

The RAPSODY project is using a step by step approach for the establishment of a network of respite care services in Europe:
  Establishment of the network with four initial participants: Frambu (Norway), RehabCare (Ireland), Centre Marin d’Hendaye (France), and Ågrenska (Sweden). A first step was to foster a dialogue between these centres to share needs, concerns and challenges and discuss possibilities of joint learning and development of projects at EU level to facilitate mobility of patients in Europe.
  Identification of respite care services used by Eurordis’ members. An online questionnaire in 6 languages was sent in May 2007, asking for the details of respite services used.
  Gathering of information about respite care services identified in the previous step (a more detailed questionnaire will be sent to these services).
  Identification of best practices and standards to be met by respite services. It is anticipated that members of the network will be able to learn from each other and benefit from each other’s experience.
  Development of an online database of respite care services in Europe, accessible via Eurordis’ website.
  Development of communication material (leaflet, website, conference) to raise awareness about the European network of respite care services at European level.

‘Respite care is of great importance, both for the person living with a rare disease and for the whole family and the carers around that person,’ says Katrine Fyhri, project manager for respite care services within RAPSODY. ‘It plays an important role in the empowerment process of the person and their family. It is therefore of great importance that services offered be appropriate. By establishing a network of respite care services we are seeking to facilitate a constructive dialogue between institutions offering respite services. Our hope is that the network will share and promote best practices of respite care for rare diseases, as well as their needs and challenges.’

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Author: Jerome Parisse-Brassens
Photos: All photos © Centre Marin d’Hendaye except RAPSODY © Baptiste Ferrier

05/2007