Jesy Nelson has spoken out against what she calls the NHS ‘postcode lottery, revealing that she will be heading to Parliament on Monday for a debate on ‘life-changing’ spinal muscular atrophy (SMA) screenings.
The singer, 35, revealed in January her now one-year-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition.
Due to the late diagnosis, the girls are unlikely to be able to walk and require specialist equipment to help them breathe at night, as well as feeding tubes.
Jesy, who has been campaigning tirelessly on the issue, shared the news in May that the UK Government had confirmed a petition calling for SMA to be added to newborn screening in England would be debated in Parliament on 22 June.
However, ahead of the debate, she took to Instagram on Friday to reveal that the screening programe will initially cover only 72% of England.
She penned: ‘We have had some amazing news that screening is due to start in October this year, which is a huge step forward!
‘But there’s still a big problem… it will only cover 72% of England. That means some babies won’t be screened simply because of where they live. A postcode lottery like that just isn’t fair. Every baby deserves the same chance every babies life matters!
‘On Monday 22nd June, the petition will be debated by MPs in Parliament. I’ll be there alongside Giles from SMA UK and we’re hoping this debate will help push for screening to be available for every newborn across England.
‘We’ll be arriving at 5pm on Monday, and it would mean so much to see as many of you there as possible. We’d love to get a photo together outside Parliament before we head inside
‘Please if you can, tag your MP in the comments and ask them to attend the debate and support universal newborn screening for SMA. No baby should miss out because of their postcode. Let’s keep fighting until every newborn has the same opportunity. Thank you for standing with us every step of the way!’
She then said in the video: ‘I know some of you will know I have been trying to get SMA as part of the heel prick test here and because of you guys the signatures got over 150,000.
‘And because of that it is going to be debated in Parliament this Monday which is just crazy because we did that! And this has never got this far before. It’s been ignored for so long but you guys made enough noise and you supported it.
‘And if they get the treatment from after birth the treatment is so life-changing, you wouldn’t even know they had SMA. But if they don’t they will go on to be disabled.
‘It is being rolled out in October but only in certain parts of England. Why are we playing postcode lottery with children’s lives? This is about our children’s futures. We are playing with children’s lives and it is not okay.
‘It makes me feel so sad that my children’s lives could have looked so different…’
Last month, Jesy shared her joy after the NHS announced it would roll out ‘heel prick’ testing for SMA In newborn babies.
2026-06-20 11:35:00
