Mrs Sharon Hodgson

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank my constituency neighbour, my hon. Friend the Member for Sunderland Central (Lewis Atkinson), for opening the debate on behalf of the Petitions Committee. It is very heartening to see so many Members in the Chamber and so many families in the Public Gallery, all united by a shared concern for children and families affected by spinal muscular atrophy. SMA is a cruel and devastating condition. It can steal from a family the carefree future they had imagined for their child. It can take away a child’s mobility and, far too often, it can take away a child’s life far too soon. I pay tribute to children living with SMA for their courage, to their families for their strength, and to campaigners for working tirelessly to ensure that their voices are heard. Their message to us is clear: where there is a chance to identify affected babies earlier, and where treatment may have its greatest effect, we must pursue that chance with urgency, care and resolve. I particularly thank Jesy Nelson, who is in the Public Gallery and is very welcome. She is so brave to share her experience of the condition, which affects her twins, Ocean and Story. She has given a public voice to all those going through a similar experience. This petition has rightly gained significant support—150,000 signatures —in such a short space of time. I am so pleased that we can take the time to have this debate and raise awareness of SMA. I assure everyone that this conversation will not stop today. I will continue to listen to the voices of those speaking for children with SMA. Tomorrow, for example, I am due to meet with members of Muscular Dystrophy UK to continue this very conversation. I know that many families and advocates feel that the Government have moved too slowly towards a decision on screening for SMA. I understand that frustration, but decisions about national screening programmes must be made with great care. We must be confident that screening will do more good than harm, that it can be delivered safely and fairly, and that we are making the best possible use of NHS resources for the babies and families who depend on them. There remain many unanswered questions about the benefits and practical delivery of screening for SMA. That matters because the answer we seek must be robust enough to support a lasting national programme. We were pleased that the National Institute for Health and Care Excellence published final guidance earlier this year accepting both nusinersen and risdiplam as treatments that could be routinely offered to SMA patients for whom gene therapy has not worked. The finding that those treatments can improve survival rates and slow the progression of disease is welcome and significant. For families living with SMA, even slowing that progression can mean more time, more independence, more moments together and more hope.