Former Little Mix star Jesy Nelson attended Parliament on Monday as MPs debated whether to introduce universal screening for spinal muscular atrophy (SMA) in newborns. The debate follows a petition launched by Nelson and backed by the Daily Mirror, which has garnered over 150,000 signatures. Nelson, whose twin daughters Ocean and Story were diagnosed with SMA at six months, has campaigned for all babies to be tested at birth so they can receive life-changing treatments before irreversible nerve damage occurs.
During the debate, Labour MP Liz Twist said: “I'm glad that with the help and promotion of Jessie Nelson, who brought forward this petition, we are able to highlight the need for preventative action to protect children from the impact of SMA. There is a test available. It should be made available to everyone.” The UK National Screening Committee has repeatedly declined to recommend the £5 blood test for SMA on the NHS since 2018, despite the emergence of drugs that can effectively cure the disease if administered early.
An NHS pilot programme to test most newborns in England was delayed for years but former Health Secretary Wes Streeting intervened after meeting Nelson, bringing the start date forward from January 2027 to October this year. However, under current plans, over 160,000 babies annually will remain untested as part of a control group. Streeting resigned as health secretary two months ago, leaving the future of the programme uncertain.
Amanda Martin, Labour MP for Portsmouth North, questioned the regional disparity: “Why do babies born in Portsmouth matter less than other babies born in other parts of the country?” Only seven of 13 regions in England will receive routine SMA screening under the pilot, meaning an estimated 11 babies a year will still be diagnosed too late. In contrast, Scotland has already decided to screen all newborns for SMA, while Wales and Northern Ireland have not yet made similar commitments.
Speaking outside Parliament, Nelson said: “I cannot thank you guys enough for signing the petition. We have over 150,000 signatures, that is why I’m going there today. We have got SMA to be debated for the first time ever in Parliament. It is such a big day for the whole of the SMA community and for future babies that are going to have SMA.” She expressed hope that the debate would not be overshadowed by Sir Keir Starmer's announcement that he would stand down as Prime Minister on the same day.
