Finian McGrath (Dublin Bay North, Independent) | Oireachtas source

-----behind the scenes. As far as I am concerned I fully recognise this is a very important time for patients, their families and carers.

As to the answer to the question, 11 children have been approved for Spinraza treatment in Temple Street Children's University Hospital and four patients have received the treatment of the medicine to date. Three of these started on 7 November at Temple Street - this is the key sentence - but there is no definitive timeline for the schedule of treatment for more complex cases. What I am saying is that the complexity of this treatment requires appropriate service arrangements to be put in place in Temple Street Hospital to ensure that the treatment and delivery of this medicine is conducted in a safe and sustainable way, appropriate to the standard of care that has been developed for the particular treatment. While I hope that access to this treatment will be provided shortly for all concerned, it is important to note that I or the Minister, Deputy Harris, have no role in relation to how clinicians manage the care of individual patients. All decisions are entirely a matter for the treating clinician, in line with the patient safety protocols and guidelines, which are currently being developed by the HSE to administer Spinraza. I will of course bring the issues raised by the Deputies today back to the Minister, Deputy Harris.

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