AN MP is calling on the Government to end uncertainty about the treatment of children with very rare diseases.

The move comes after NHS England announced it was suspending its process for commissioning treatments - just days before a key decision was due to be taken. The Clinical Priorities Advisory Group was set to choose, on December 15, which of 60 drugs should continue to be funded.

It s conclusions, now delayed to allow a public consultation, will have a profound effect on children like six-year-old Otley boy Sam Brown, six (pictured), who is one of only 88 people in the UK to suffer from the life-limiting genetic condition Morquio Syndrome. and for the past two and a half years has been receiving a clinical trial of Vimizim.

Greg Mulholland, MP for Leeds North West, said: “Now that a court case has ruled NHS England’s processes are not fit for purpose, the sudden uncertainty has created significant confusion for parents.

“No timescales have been set out for new processes, and parents need a clear assurance that until this is done, their children will continue to get the life-saving drugs they need.