CFAI appreciates all information and concerns communicated to staff at CF House, by members, CF care staff and other interested parties. As the representing body for people with CF in Ireland, it is important for us to understand the real issues that people are facing at home and in the CF centres. In order to ensure that any issues raised are given due credence and attention, CFAI is implementing a system to accurately record and follow up on all queries brought to our attention.
Any concerning issue will be noted and recorded on the Information Retrieval Form, and reports will be compiled by CFAI from the data on these forms on a six-monthly basis. No names or other personal details will be included in the reports; they will simply monitor trends and identify key issues. This will help to direct CFAI's work in terms of identifying priorities, and will equip the Association with relevant statistics to lobby on behalf of members
Staff at CF House may be able to help resolve some issues directly. Others will contribute to wider advocacy campaigns and CFAI strategy development in the medium to long term.
Information retrieved by staff members at CFAI will be categorised into one of the following general groups:
- Issues relating to hospital facilities / staffing
- Issues relating to organ donation / transplantation
- Issues relating to social welfare / HSE entitlements
- Issues relating to insurance
- Situations of home distress
- Other (specified)
Please send completed Information Retrieval Forms to