Former Little Mix singer Jesy Nelson has voiced strong outrage directed at Members of Parliament, particularly Public Health Minister Sharon Hodgson, following a recent debate concerning the screening of newborns for spinal muscular atrophy (SMA). Nelson, whose twin daughters Ocean Jade and Story Monroe Nelson both live with SMA, described the current situation as a 'postcode lottery' for vulnerable infants across England.
In an emotional video lasting nearly seven minutes, Nelson shared her 'heartbreak' after hearing Ms Hodgson argue against a comprehensive national rollout of SMA screening. Nelson has been a vocal campaigner for universal newborn screening, driven by her family's personal experience with the rare genetic condition, which causes progressive muscle wastage and can be fatal if not treated early.
The parliamentary debate on Monday was prompted by a petition launched by Nelson, which successfully gathered over 150,000 signatures. During the debate, it was announced that SMA screening would be introduced as part of in-screening evaluations (ISE) from October 2026, three months earlier than initially planned. However, Nelson maintains that this limited rollout is unethical, pointing out that it means 28% of babies will still not be screened, creating what she views as an unacceptable disparity in healthcare provision.
Nelson emphasised the critical importance of early intervention for SMA. She stated, "There is factual evidence that this treatment, if given from birth, is completely life-changing to a child that is diagnosed with SMA. If your child doesn’t get treatment, they will not see their second birthday, they will die before the age of two." She directly challenged Ms Hodgson's position, questioning why a test deemed safe for 72% of England's newborns was not considered good enough for the remaining 28%.
The singer recounted showing Ms Hodgson a video after the debate, illustrating the stark difference in outcomes between two sisters with SMA who received different treatments – one now using a wheelchair, the other able to run. Nelson claimed the minister was surprised by the video, admitting she had not fully realised the extent of early treatment's impact. Nelson expressed her disbelief that a health minister could argue against a full rollout without apparent full knowledge of the treatment's life-changing effects, concluding that the policy effectively tells parents in certain postcodes that their children are less important.