John Paul Phelan
Question:591. Deputy John Paul Phelan asked the Minister for Health if he has appointed a rare disease liaison within his Department; and if he will make a statement on the matter. [52093/23]
View answerTuesday, 28 November 2023
Questions (591)
Written answers
The Government is fully committed to doing everything possible to assist people living with a rare disease.
Significant progress has been achieved under the National Rare Disease Plan 2014-2018, including the establishment of the HSE National Clinical Programme for Rare Diseases and a National Rare Disease Office (NRDO).
A Rare Disease Policy unit has been established in my Department who liaise with the National Rare Disease Office in the HSE and relevant stakeholders.
In February I announced a strategy/plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government. Initial work for the new strategy/plan has commenced, and a Steering Group to progress the new Strategy/Plan is expected to be convened in December.
The voice of patients and families will be central to the development of this policy. A patient liaison officer with a special focus on rare diseases will also be considered within the HSE as part of this new strategy/plan.
The NRDO established a National Rare Disease Information Line which provides current and evidenced based information on rare conditions and signposts to available rare disease expertise in Ireland and Europe.
Patients can also seek information, advice, and support through the Patient Advocacy Service. This free and confidential service, independent of the HSE, provides information and support to people who want to make a complaint about an experience they have had in a HSE public acute hospital through the HSE’s Your Service Your Say process.
Responding effectively to comments, compliments and complaints received and learning from them is key to providing high quality customer focused services. As such, Patient Liaison Officers are located in each Hospital Group and CHO to support service users and staff in the implementation of the complaints management process.