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Spinal Muscular Atrophy Type 1: Treatment

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 Danny Kennedy Danny Kennedy Deputy Speaker 3:30 pm, 24th January 2017

Ms Nichola Mallon has given notice of a question for urgent oral answer to the Minister of Health. I remind Members that, if they wish to ask a supplementary question, they should rise continually in their place. The Member who tabled the question will be called automatically to ask a supplementary.

Photo of Nichola Mallon Nichola Mallon Social Democratic and Labour Party

Ms Mallon asked the Minister of Health whether all children in Northern Ireland with spinal muscular atrophy (SMA) type 1 will be included in the potentially life-changing nusinersen drug trial.

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

This is a very sensitive issue, as these families are dealing with very difficult diagnoses of SMA and their children have very complex needs. I understand the concerns of those families involved and their request to have their children enrolled in the extended access programme of nusinersen, the potentially life-changing drug, to treat spinal muscular atrophy, and I am fully sympathetic to their concerns.

Clinicians in the Belfast Health and Social Care Trust made a clinical decision to use the extended access programme to provide this drug in an individual case to treat SMA. On this basis, the extension of this programme is a decision for the clinicians in the Belfast Trust. Like the Member, I am aware of the concerns of parents of children with SMA about the communication. My Department has raised these concerns with the trust, which in turn has assured me that urgent action will be taken to make contact with the families involved. I understand that direct contact will be made this Thursday with the families, offering a face-to-face meeting with the clinical team in the children's hospital.

Photo of Nichola Mallon Nichola Mallon Social Democratic and Labour Party

I thank the Minister for her response. The Minister will know that I have raised this issue. I wrote to her twice before Christmas asking her to meet a family to discuss specifically access to the drugs. We have only four children in Northern Ireland who have this rare condition, one of whom is getting access to the drugs trial and three of whom are yet to get any decision on access to it.

Can any assurance can be given that, if those three children — Caoilte Fitzsimmons, Mia Warren and Noah Collins — meet the suitability tests, they will face the very real prospect of getting access to what is a life-saving and life-changing drug, given that the Health Department does not have to pay for it but simply provide the theatre space and medical staff to administer it?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

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.

Photo of Andy Allen Andy Allen UUP

I take this opportunity to thank the Member for North Belfast for bringing this very important matter to the Floor and the Minister for coming here today. Minister, I have also written to you on this matter, and, indeed, I am aware that your officials have been to see one of the families who engaged with me. From my engagement with the clinicians, it is my understanding that it is, indeed, resources and infrastructure that are a barrier to the other three families being offered this procedure. If that is the case, will you have engagement with the health trust to ensure resources and infrastructure are in place to offer this procedure to the other three families?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I thank the Member for his question. Again, I make the point that it is, ultimately, for clinicians to decide who gets access and to decide on the allocation of resources to provide this drug. We know there are a lot of additional needs involved in being able to provide the drug. Let us be very clear: it is not a money issue, in that sense; this is a drug that is not yet licensed for use in the North. As I said before, it has been made available to one child as part of a special programme. It is definitely not a question of there being a lack of funding to supply the drug. Decisions on the use of the clinical resources in hospitals are, quite properly, for clinicians to make.

Needless to say, these are families in very difficult circumstances and the children have very challenging needs. I am sure it is very difficult for all the families involved, so we need to be very sensitive to the issue. I can give an assurance that all those families will be properly engaged with, and if there is a route for them to get into this trial and it is beneficial medically for their child, the clinician will have to arrive at that decision in conjunction with the family.

Photo of Pat Sheehan Pat Sheehan Sinn Féin

Gabhaim buíochas leis an Aire as ucht a freagra. I thank the Member for her answers thus far. It is clear in this case that there has been a breakdown in the relationship between the parents and the trust. Will the Minister tell us what is being done to rectify that problem?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

That is something we can all agree on, and the concerns of parents about communication are valid. We will rectify that, and, as I said, all families will be engaged with directly by the trust and, in turn, by the clinicians on their own child and particular circumstances. They will be given the fullest information possible to allow them to make a decision on the future health support for their child.

Photo of Paula Bradshaw Paula Bradshaw Alliance

Minister, your response seemed very hopeful, and I hope the clinicians will come through with the best solutions for the families. It strikes me, as you said, that it is not really about resources; it is about getting people in the system. As this is your last session in this mandate, when are you going to launch the waiting list strategy you said would come out this month?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I said I would publish it before the end of the month, and I am still on course to do that. We are finalising all the details, but I will take the opportunity to publish it, as I said I would. It is part of the wider transformation programme that I have already set out and that we need to see brought through, because we have to transform the health service. We have all well rehearsed the arguments for why we need to do that. Part of the transformation programme has to be to tackle waiting lists to build public confidence. I am on course to publish the plan.

Photo of Jo-Anne Dobson Jo-Anne Dobson UUP

I thank Nichola Mallon for tabling this important question today. I understand that, through correspondence with my colleague Andy Allen, and he articulated this earlier, limited resources and challenges are being cited as the reason. Those are not acceptable reasons for young children to be denied access to a drugs trial. Elections aside, Minister, what guarantee will you give that those children will not continue to be neglected in the weeks and months ahead?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I was very happy with the tone of the questions so far, because we have to be very sensitive to this issue, so it is unfortunate that you are trying to use it to electioneer. These are four families who are in a very difficult situation as a result of their children's diagnoses, which can be life-threatening for some of them. We therefore have to be very sensitive to the needs of these families.

Regarding the drug and getting into the clinical trial, as I said, the drug is not yet licensed. We do not want to build false hope that the clinical trial will benefit all those children, because we do not know. You are not qualified to make that assessment and neither am I, but I am very clear about that. These are clinicians' decisions to take, and that is how they should be taken. What is most important here is that the families be engaged with, that the communication issue be addressed and that they get all the information and the fullest of support that the health service can provide them with at this time.

Photo of Mark Durkan Mark Durkan Social Democratic and Labour Party

The Minister is quite right: it would be ultracrepidarian of her and us to say what patients get what treatment. Those decisions should be made by the experts. I think that we heard a bit of an assurance there. Will the Minister reiterate that this decision and other decisions around patients' treatment are made on a clinical basis and not a financial one?

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

Yes, I can absolutely confirm that. I am not a clinician, I am not medically qualified and I would never want to make a decision on what child gets access to any life-saving drug or clinical trial. It has to be based on medical considerations, and I would never interfere in that.

Photo of Danny Kennedy Danny Kennedy Deputy Speaker

That concludes that item of business. I ask the House to take its ease before we move on to the next business.

(Mr Speaker [Mr Newton] in the Chair)