Patient support organisations
There are an extensive number of voluntary, community and support organisations that provide advice, information, services and support to patients and families about health issues.
These organisations play an integral role in the provision of advice, counselling, sharing of experience, information and support to families and the wider community. Some of the larger voluntary and community and patient support organisations operate on a national basis, and have extensive networks of local links. In addition, some of these organisations offer care services on behalf of your Health Service Executive (HSE) Area within your community.
Hearing that you, a member of your family or someone you know has been diagnosed with an illness or a rare condition or will go on to develop a progressive disorder can be devastating news. Often, you may not know where to turn or where begin to seek information or assistance. You may have lots of questions but are nervous about what to ask. You may be facing choices and decisions about treatments and are not sure if the decision you make will be the best one. It is important for you, therefore, to know that you are not alone and there is very likely a national or local voluntary or community organisation that can help answer these questions, share its own experiences and talk through with you the various options you face and decisions you and your family will need to make.
The involvement and participation of the voluntary and community sector in providing advice, information and support at local and national level can be extremely helpful for patients and families. These organisations can help provide information about local services, put families in touch with other families, provide a voice to raise awareness, lobby and campaign for change.
The Irish Medical Directory is a national directory of patient support groups. It may be available in your local library.
The healthcomplaints.ie list of support organisations includes organisations that can offer information, advocacy or advice.
The CAF (Contact a Family) Directory is a national directory of support organisations and organisations from the UK. Some of these organisations have branches in Ireland. The online version of the CAF Directory also contains a database that includes information on a substantial number of specific conditions and rare disorders.