Mrs Sharon Hodgson

I thank my hon. Friend for that intervention. My hon. Friend the Member for Sunderland Central also mentioned the generation study. There are lots of questions around this, and, as I am sure my hon. Friend the Member for Portsmouth North is aware, in preparing for this debate, I have been asking lots of those questions. I will take that point away and get back to her. As we have heard, spinal muscular atrophy affects every part of daily life for the children and families involved: their routines, milestones, plans and the hopes that families hold for their children. Any progress against it matters deeply. At the same time, NICE has been clear that important questions remain, including around longevity and how long the benefits of these relatively new treatments may last. Those questions, alongside important issues of feasibility, must be answered before a national screening decision can be made. That is why my Department has worked with the National Institute for Health and Care Research and NHS England to establish an in-service evaluation. That evaluation will run within the routine newborn blood spot screening programme to gather the evidence that we need, help answer difficult questions and fill the gaps that stand between us and a confident national decision. Crucially, the Department has worked alongside patient advocate groups, including the SMA NBS Alliance and SMA UK. I commend both groups for their excellent support and advocacy. They help to ensure that families’ voices are not an afterthought but are at the heart of decisions. I acknowledge that, as we have heard, many have been frustrated by the pace of planning for this large-scale scientific evaluation. I hear that frustration—I really do—but we must get this right, because only a strong evaluation will give us the answers that families deserve and the evidence that a national programme requires.