Jesy Nelson's campaign for spinal muscular atrophy (SMA) screening achieved a major victory as the Department of Health announced a national newborn screening programme for SMA, set to roll out across England from the end of 2026. The announcement came just before the release of her documentary 'Jesy Nelson: Life Changing' on Prime Video, which captures her emotional plea to former Health Secretary Wes Streeting.
Documentary Details Emotional Meeting
In the documentary, Nelson is seen breaking down in tears during an interview with Streeting for ITV's This Morning. She asked him: 'Why now? Why did it take for me to come along with a platform for people to take it seriously?' Streeting responded that his inbox had been 'full of people asking the same questions' and that many were 'so thankful' for her campaigning work.
Nelson added: 'It's just madness that we are living in a day and age where we have three treatments that are life-changing and it's still not part of the heel prick test.' After the interview, she felt she hadn't made all her points and asked for two more minutes. She tearfully said: 'I feel so passionately about trying to raise awareness for this and getting it changed. I believe no parent should ever have to go through this.'
Newborn Screening Programme Announced
On Thursday, the Department of Health confirmed that a national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of 2026. This means hundreds of thousands of babies will be screened via the heel prick blood test shortly after birth. Nelson shared her delight on Instagram, stating the rollout will start in October 2026 and cover the country by October 2027.
She wrote: 'For babies diagnosed at birth, their lives will now look completely different and I just am so proud!' She thanked her supporters, adding: 'You have no idea what it means.'
Nelson's Personal Journey
The former Little Mix star gave birth to twin daughters Ocean Jade and Story Monroe in May 2025, who were later diagnosed with SMA type 1, a rare genetic condition causing muscle weakness. Nelson felt her initial concerns were dismissed, but early diagnosis is critical. She believes if her girls had received the simple blood test at birth, their muscle strength might have been preserved.
In the documentary, she wonders about her daughters' future questions: 'What will they ask me when they are older? Will they be mad I didn't see the signs sooner and could have potentially given them a completely different life?' She added: 'It shouldn't have been their life. I know disabilities don't define children, but I can't accept they should have been able to walk and run and live how a child should live.'
Impact on Families
Nelson said her daughters went from kicking their legs to stopping in just two months. She stated: 'If we can prevent this, it's life changing to people's families and their children.' Streeting acknowledged the 'pressure' to get the testing running so 'every child benefits'.
Nelson described the documentary as 'the most heartbreaking series I've ever had to make' and 'only a small glimpse into what my girls have to go through every single day'. She urged people to watch it, saying: 'Please if you watch one thing, let it be this.'
Documentary Release
'Jesy Nelson: Life Changing' streams from July 17, 2026, on Prime Video. Nelson concluded that SMA will 'never stop me enjoying my life with my girls' and that caring for them and her campaign have given her 'purpose'.
