HEALTH bosses have been slammed for 'passing the buck' regarding a decision that will have a major impact on an Otley boy's life.

Sam Brown, who has Morquio Syndrome, has been waiting since 2014 to find out if NHS England will fund Vimizim, which has significantly improved his quality of life.

The six-year-old and his parents, Katy and Simon, thought their long wait would finally be over today (July 2).

But NHS England has instead issued a statement saying they will back whatever NICE (National Institute for Health and Care Excellence) recommends after it has concluded its appraisal of the drug – which could take another 16 weeks.

The news has been blasted by the families of those suffering from Morquio, which severely limits growth and mobility.

Katy Brown said: "I am furious.

"After eight months of delays and incompetence NHS England has weakly side-stepped its responsibility.

"It is cowardly and an utter disgrace.

"How ministers and, indeed, Prime Minister David Cameron can sit by and allow this to happen is beyond me.

"It shows a deep institutional failure, which is blatantly accepted by the Department of Health.

"Meanwhile, Sam now faces at least six months without treatment, with his health and mobility at serious risk of deterioration.

"And his long-term future depends now upon NICE, which has already shown it is no more capable of dealing with ultra rare diseases.

"I will not stop fighting for justice for Sam."

MP Greg Mulholland (Lib Dem, Leeds North West) was equally scathing.

He said: "After many months of bureaucratic failures, this announcement is NHS England clearly passing the buck.

"It has chosen to hide behind the NICE process.

"The prospect of a further six to seven-month wait will be devastating news for the families.

"It is incredible Vimizim has been approved on a European level and is already used by 20 other countries, but not the UK, which led the way in the clinical trial!

"Sam deserves better than this and so do his parents.

"Next week I am meeting Richard Jeavons, NHS England’s director of specialised commissioning, and will be urging him to seriously reconsider."

Chief executive of the Society for Mucopolysaccharide Diseases, Christine Lavery, added: "We are shocked, dismayed and disgusted.

"Eighty eight children and young people in England have been utterly failed by NHS England."

The NHS England statement notes NICE has expressed doubts about the cost-effectiveness of the treatment.

It concludes: "If NICE ultimately does recommend the NHS funds this treatment then NHS England will do so.

"NHS England believes the manufacturer has an ethical duty to continue to support those patients it enrolled in clinical trials... whilst the NICE process is ongoing."

Vimizim's producer, Biomarin, has been supplying Sam for three years, but he received his final treatment on June 25.