'ENOUGH is enough'.

That was the agonised reaction of an Otley family to news a crunch decision about treatment funding for their son had, yet again, been delayed.

Simon and Katy Brown have now been waiting more than six months to discover if NHS England will pay for Vimizim – the drug that has been doing so much to improve their six-year-old son, Sam's, life.

The Whartons Primary School pupil suffers from the rare genetic condition Morquio Syndrome, which severely limits growth and mobility.

The family had already endured several delayed announcements before being told a decision last week had been postponed until Tuesday – and then, again, until yesterday.

But the Browns sat on tenterhooks for hours yesterday only to hear the announcement had been put off for at least another 24 hours.

Katy said: "Enough is enough. This is the fifth time we have experienced a delay.

"No thought or compassion whatsoever is given to patients and families who are awaiting a life-changing decision.

"NHS England doesn't even communicate directly with families before it publishes a press release.

"It has no functioning process and very limited experience of ultra rare diseases – quite frankly, it is making it up as it goes along.

"Our experience yesterday epitomises the eight-month debacle we have had to endure."

She and other parents were also quick to direct their outrage online towards Life Sciences Minister George Freeman MP.

Posting on the Keep Sam Smiling Facebook page, Katy added: "NHS England, a body that is wholly accountable to you, is putting families and sufferers through hell.

"There are no excuses. Vulnerable people, already suffering significant challenge and disability, do not deserve this.

"Sufferers around the world are already receiving this drug, but the country that was pivotal to the clinical trial, the UK, is not."

MP Greg Mulholland (Lib Dem, Leeds North West), who has been campaigning for the Browns, said: "Sam and his parents have waited long enough and faced more than enough uncertainty, without needing yet another delay.

"The repeated mishandling by NHS England has been astounding, and so has the failure of ministers to hold them to account.

"Sam has already had his drug supply cut and this delay adds insult to injury."

Chief Executive of the Society for Mucopolysaccharide Disease, Christine Lavery, added: "The emotional turmoil during the six months since a decision was originally expected, and the lack of transparency and clarity around timescales of a decision, is cruel.

"It is unforgivable NHS England has delayed the decision again on whether to reimburse Vimizim, and the Morquio community should not be made to pay for their mistakes."

Vimizim is used in more than 30 countries, including Germany and France, and clinical trials have found the drug can slow down the disease.

Sam's extended trial with producer, Biomarin, ended last week.

l Visit wharfedaleobserver.co.uk tomorrow for the anticipated report on NHS England's decision.