Particle.news
Download on the App Store

Jesy Nelson Posts New Update on Twins as Calls Grow to Add SMA to UK Newborn Screening

The health secretary has pledged to review screening policy after her disclosure prompted scrutiny of delays and media language around disability.

Overview

  • Nelson shared an Instagram video showing a playful moment with one of her 8-month-old daughters, with a feeding tube visible, days after detailing intensive home care including a night-time breathing machine and cough-assist devices.
  • She is launching a petition to add spinal muscular atrophy to the NHS heel-prick test, highlighting reports that the test costs about 36p and is already used in dozens of countries including the United States.
  • SMA Type 1 is the most severe early-onset form of the disease, and coverage notes that outcomes improve when treatment is started very early.
  • Scotland has announced newborn SMA screening will begin in the spring, and the UK National Screening Committee is reassessing its current position not to recommend universal screening.
  • Health Secretary Wes Streeting said Nelson was right to challenge diagnostic delays and vowed to consider screening and wider use of genomic medicine, as on-air wording from This Morning drew criticism from disability advocates calling for more representation.