内容摘要："People felt so strongly, they talked so passionately, and I was particularly struck by the doctors who are now MPs talking about their own experience.

"People felt so strongly, they talked so passionately, and I was particularly struck by the doctors who are now MPs talking about their own experience.

"She would decline rapidly and we need Brineura to keep her being Bee and doing all the things...she's loving life at the minute. She deserves a chance," she said.Anna told the BBC her daughter had an infusion of the drug every fortnight which "keeps her on her feet and talking".

"She's reading books, she's swapping them at school so her life is the same as the other kids in the class," she said."Knowing that this drug...could be just ripped away...the anguish we are living in is absolutely heartbreaking."A fortnightly 300mg dose of Brineura costs £522,722 for each patient every year, according to the National Institute for Health and Care Excellence (NICE).

An agreement on access to the drug between NHS England and manufacturer BioMarin is set to expire in May but NICE said "constructive" discussions over permanent access to the drug continued.Wednesday's rally in Westminster was backed by the Batten Disease Family Association and a supporter of the charity, the former England cricket captain Lord Botham, took part.

He said he hoped the government would keep the treatment going to allow children with the disease a "much better life".

"It's not curing, the research into it needs to be expanded and moved on because it is a brutal disease," he told BBC Radio WM.. Recommendations were not acted on.

In 2017, Essex Police launched ainto the deaths of 25 patients at nine mental health units, but there were no charges.

Police said the cases did not meet the "evidential threshold".In 2019, the PHSO published