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Spinal Muscular Atrophy Type 1: Treatment

Part of Question for Urgent Oral Answer — Health – in the Northern Ireland Assembly at 3:30 pm on 24th January 2017.

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Photo of Michelle O'Neill Michelle O'Neill Sinn Féin 3:30 pm, 24th January 2017

I thank the Member for her question. Again, a member of my team has met all the families involved to discuss their individual circumstances. Obviously, everybody's condition will have different circumstances. This is a clinical decision; it is not for me to make a decision on who should get what drug or who can get access to the trial. I want to make sure that these families, who are dealing with very complex and challenging conditions, are given absolutely every support and every lifeline possible, because that is what we are talking about.

I think there has been a breakdown in communication. We need to rectify that problem, and I have asked the trust to do that. I am glad the families will be engaged with and offered a face-to-face meeting on Thursday so that they can get the full facts and details. It is important we do not raise expectations, because you and I are not medically qualified to decide which child should have the drug or access to the trial. If clinicians decide that is the case, that is who should make the decision.

I think it is important that, because this is so sensitive, we do not raise expectations with families. I am glad the families will now have an opportunity to talk to clinicians about their individual circumstances with the medically trained people who are qualified to make the decision and give them access to the trial, if that is what is suitable for their child.