Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

I thank the Deputy and acknowledge his ongoing work on behalf of patients and families with a rare disease diagnosis.

We are fully committed to doing everything possible to assist people living with a rare disease and to support their families as well. Good progress was made under the national rare disease plan, including the establishment of a national clinical programme for rare diseases and, critically, a national rare disease office. While there is currently no HSE patient liaison team official with a special focus on rare disease, the national rare disease office established the national rare disease information line which provides current and evidence-based information on rare conditions and signposts to available expertise in Ireland and across Europe.

Patients can seek information, advice and support through the patient advocacy service. It is a free and confidential service, independent of the HSE, providing information to support people who want to make a complaint about their experience or give feedback on their experience in an acute hospital. Then we have the Your Service Your Say process as well. Responding effectively to feedback and learning is essential in providing very high quality services. As such, the patient liaison officers referred to in the Deputy's question are located in each hospital group and community health organisation to support patients, service users and staff in the implementation of the complaints management process.

In February I announced a plan to develop a new national rare disease plan, in line with the commitment in the programme for Government. Work for the new plan has commenced and, critically, the voice of patients and families will be central to the development of this policy. The measure the Deputy is proposing through his question is one that we will consider through this forum. A patient liaison officer with a special focus on rare diseases can be put in place within the HSE potentially as part of the new plan.

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