Robbie Moore

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Sunderland Central (Lewis Atkinson) for opening this important debate on behalf of the Petitions Committee, of which I am proud to be a member. I am grateful to everyone who signed this petition and I pay tribute to the lead petitioner, Jesy Nelson. She has used her personal experience and public platform to raise awareness of spinal muscular atrophy. We know that it is a rare neuromuscular genetic condition that causes muscle weakness, movement problems, and difficulties with breathing and swallowing, as well as tremors, and bone and joint problems. Although those symptoms are most often noticed in babies and toddlers, they can also start in teenagers and adults. This extremely cruel disease has touched many people across the country and beyond. That is evident, given the simple fact that the petition has nearly 150,000 signatures, including that of my constituent Nasser Iqbal. Nasser’s daughter was diagnosed with SMA type 1, the most severe form, three months after birth. She is unable to walk or eat due to nerve damage caused by her condition being left undiagnosed and therefore untreated in the first few months of her life. We know that every year in the UK, 48 babies are born with spinal muscular atrophy, with 60% having SMA type 1. Once symptoms begin, damage to motor neurones cannot be undone. However, there is clear evidence that babies diagnosed before symptoms appear have significantly better health outcomes, with many able to reach developmental milestones that would otherwise not be possible. Earlier intervention would have made a huge difference to Nasser’s daughter. I am proud to speak in this debate on her behalf, because she and many other young people are impacted by the absence of early screening. That is why the petition calls on the Government “to fund and help fast-track the process to add SMA to the NHS newborn heel-prick test” so that every baby is “screened at birth to allow early diagnosis and access to life-changing treatment.” Although screening for SMA in newborn babies is currently not recommended by the UK National Screening Committee, it has confirmed that an in-service evaluation of newborn screening for SMA will start in October 2026. However, the plans will include only seven of the 13 regions, which, as many Members have said, leaves approximately 163,000 babies without screening until as late as 2030 or 2031. I am disappointed that one of the areas not included in the ISE of newborn screening for SMA is West Yorkshire, and I am extremely concerned that it will leave my constituents across Keighley and Ilkley without access to this potentially lifesaving screening, despite the ever-growing need for it. Yorkshire has 1.5 times as many patients with SMA compared with national figures; in the last three years alone, the regional neuromuscular service in Leeds has diagnosed 10 infants with the most severe form of SMA. Two tragically died within their first year of life and two have survived, but are living with significant and lifelong disability. Neither child can stand or walk independently. They require night-time respiratory support and are unable to feed themselves without assistance. In comparison, the children diagnosed and treated pre-symptomatically have achieved their expected motor milestones, and they are sitting and walking as expected for their age. I pay tribute to the Leeds teaching hospital for reaching out to me before this debate. In particular, I thank Dr Anne-Marie Childs and her team of paediatric neurologists, who asked me to tell the Minister that we cannot be in a scenario where not every new-born baby in the UK has access to early diagnosis and life-changing treatment. I therefore call on the Minister to make sure that West Yorkshire and my constituents across Keighley and Ilkley are included as part of the early screening process.