Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

The inquiry will be established as soon as we get the terms of reference finalised. It is important that the terms of reference, first and foremost, make sense for the patients, families and groups. We must also ensure all the stakeholders can work with those terms of reference. We are reviewing the terms of reference at the moment. I cannot give an exact date but I will revert to the Deputy with an update when I have it.

After a diagnosis, the geneticist makes a recommendation on the health services that are needed for the patient. This is important. The geneticist is designing or recommending a package of care. The relevant CHO is then informed and a liaison officer is appointed. We will all agree that is important. The liaison officer establishes the link to the services and, critically, is an advocate for the patient. At that point, the appropriate healthcare services and the appropriate equipment are provided through the care pathway and with the CHO.

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