Now drama student Lily Wood, 19, has penned an emotional letter to Health Secretary Matt Hancock urging him to intervene.
She wrote: Are you aware of any drug other than Kuvan that is taken away from the patient when they reach 18? I certainly can t. All of my life I have been on a highly restrictive low protein diet where I cannot eat meat, fish, eggs, dairy, pulses, and even some fruit and vegetables are restricted. If PKU sufferers don t follow this diet the side effects are immense. Depression, confusion, memory loss, anxiety, motor skills and hospitalisation. Patients with type 2 diabetes could be treated with a Mediterranean diet, yet NICE doesn t take their insulin away.
If we don t reform social care now, when will we? telegraph.co.uk - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from telegraph.co.uk Daily Mail and Mail on Sunday newspapers.
Jeremy Hunt thanks brilliant staff at Royal Surrey County Hospital for treating broken arm
He thanked them over a video link
Former health secretary, Jeremy Hunt (Image: Peter Summers/Getty Images)
Get the latest email updates for Surrey with our FREE daily newsletterInvalid EmailSomething went wrong, please try again later.
Subscribe here
When you subscribe we will use the information you provide to send you these newsletters. Your information will be used in accordance with ourPrivacy Notice.
Thank you for subscribingWe have more newslettersShow meSee ourprivacy notice
Former health secretary Jeremy Hunt thanked staff at Royal Surrey County Hospital for treating him after he fell and broke his arm on Thursday morning.
Matt Hancock announces major border changes to fight Covid - with 10-year prison warning Dan Falvey, Political Correspondent
Replay Video UP NEXT
All arrivals to the UK will now be required to take an extra two Covid tests during their 10-day isolation period, while those arriving from 33 red list countries will be forced to quarantine in a hotel for 10 days upon entering the UK. Travellers staying in approved accommodation in England will be charged £1,750 for their stay.
Anyone found to have lied about having arrived in the UK from a country from the red list faces up to 10 years in prison.