This mum faces a nightly battle to keep her daughter alive - but the NHS won't help her

For Shelley Mclean, every night is a sleepless one, just to keep her 11-year-old daughter alive.

Missy was born with a rare genetic condition that affects her breathing, digestion and movement. She spent the first nine months of her life in hospital before coming home with a breathing tube in her throat, a feeding tube in her stomach, and a line into her bowel. At first, the family had some NHS-funded nighttime care to help keep Missy safe while she slept. But when her local NHS body decided she no longer met the threshold, that support was taken away. Now, Missy's mother is responsible for her care.

Children like Missy who leave hospital but still need intensive support are meant to receive what's called NHS continuing care - specialist help for those with the most complex, life-limiting or life-threatening needs. But new figures obtained by Sky News reveal just how uneven continuing care has become. NHS spending on children's continuing care ranges from just 80p to £6 per head depending on where families live.

Out of almost 100,000 children in England with a life-limiting or life-threatening condition, only around 4% - roughly 4,400 - receive NHS continuing care funding. And more than half of all disabled children referred for this kind of support are rejected.

Read full article.

Source: Sky News, 30 October 2025