Prader Willi Syndrome Association Ireland’s Post

A momentous day happened on March 28th 2024 for PWSAI as we launched the Joint National Report with the HSE (Irish health service). The report details eight recommendations for the development of high quality, safe and effective health and social care services for people living with PWS. Recommendations include: • Quality and delivery of health and social care services • Respite services • Residential services • Day services (new direction) • Acute services • Mental health services • Educational and lifelong supports for people with PWS • Psychological supports for families Yesterday PWSAI was heard. The voices of people with PWS and their families were heard. The future for all is looking brighter but as Chairperson Rory Tierney said at the launch, the work begins now. This report can’t be left to sit on a shelf. PWSAI welcomes the announcement by Bernard O’Regan of an implementation group and a monitoring group to action the recommendations. “This report needs to make a difference to all my friends with PWS” - Richard, an adult with PWS who spoke at the launch sharing his experience of living with PWS With the fantastic news that Minister O’Gorman announced at the launch about the PWS respite service opening this summer, we in PWSAI believe that the PWS respite service is one step in the right direction, creating a better future for all people with PWS and their families. Thank you to everyone who came to the launch yesterday. A momentous day. #praderwillisyndrome