Respite care services
EURORDIS has been promoting and networking Rare Disease Respite Services since 2007. The Rapsodyonline website includes a full listing and cartography of existing services around Europe.
What is respite care?
Although respite is an established and common term in some countries, in other countries the word does not even exist.
Respite care1 is provided on a short term basis for disabled or very ill people who either live at home or attend a respite centre, so that their carers can have a break from care giving. Many of the patients involved might otherwise require permanent placement in a facility outside the home. One of the important purposes of respite is to give family members and carers temporary relief from the stress they experience while providing care for a family member living with a rare disease. Respite care enables the caregivers to maintain the ability to continue care giving. A second purpose of respite is to make it possible for the person living with the disease/disability 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. Respite exists all over Europe under different names and programmes. However many countries are not familiar with the term and as a result these services are not available to patients in these countries.
Respite Care Services (RCS) can be offered in various ways, these are:
- 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 to come to the family’s 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 centre, nursing home, institution or respite care group home with assisted living facilities (no overnight facilities)
- Emergency respite services that gives access to services on short notice in the event of an unexpected emergency occurring.
The European Commission’s Communication on Rare Diseases: Europe's Challenges2 documents the need for specialised services for rare disease patients around Europe, including RCSs, to be sustainable in order to pursue their goals. Respite is one of the services most often requested by family caregivers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance. While the focus has been on making sure families have the option of providing care at home, little attention has been paid to the needs of the family caregivers who make this possible.
Without respite, families cannot only suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous care giving. Three fifths of family caregivers aged 19-64 surveyed recently by the Commonwealth Fund3 reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non caregivers.
What does the European Network of Respite Services offer?
It is the belief of EURORDIS and its European Network4 of Respite Care Services that every rare disease patient and carer has a right to respite. It is for this reason that as part of its advocacy actions it encourages national patient organisations to request respite at national level and to encourage the government to adopt laws ensuring that the necessary services exist to ensure that parents have a break from the routine of looking after a sick child. The long term implications of providing respite care involve benefits for carers and patients, the former will become better carers because of the breaks respite provides while the latter will see increases in their quality of life and be better looked after as a result.
The network also believes that the rare disease community should be as aware as possible of the services that exist. It is by collecting data regarding the services that exist at European level that we can ensure that patients across Europe are aware of the services that exist today. EURORDIS has created a network in order to build up actions to support its members and to achieve its long term objectives. The network has collected the advice and experience of its contacts from all over Europe so to develop Best Practice Guidelines. These guidelines are available on the Rapsodyonline.eu and EURORDIS website.
The network can also help you with the following:
- Defining your mission, preparing the service, evaluating your needs, developing an action plan
- Identifying best practice
- Training health care professionals, volunteers
- Evaluating the quality of the service you are providing (audit)
- Meeting with other programme directors
- Improving awareness of your service by including in the Rapsodyonline listing.
Please get in contact if you would like your service to be included in the Rapsodyonline listing.
CONTACT
François Houÿez , EURORDIS Health Policy Officer
LINKS
- Rapsodyonline
- EURORDIS Specific Contribution on Specialised Services for People Living with Rare Diseases to the Public Consultation: "Rare Diseases: Europe’s Challenges".
- Fact Sheet
FOOTNOTES
1 The term "short break" is used in some countries to describe respite care.
2 COM (2008) 679 Communication from the Commission to the European Parliament, the Council the Economic and Social Committee and the Committee of the Regions on Rare Diseases: Europe's challenges.
3 http://en.wikipedia.org/wiki/Commonwealth_Fund
4 The Respite Care Services Network was created in the context of the European Commission-funded Rare Disease Solidarity Project which sought to create European networks for Rare Disease Patient Services.
Author: Shane Lynam
Photos: Agrenska © Agrenska ; others © L'Hopital Marin d'Hendaye
Logo: © EURORDIS
