OTLEY’S Liberal Democrat candidate has branded NHS England “cowards” for failing to face campaigners over treatment funding for children with rare diseases.

Greg Mulholland, who is hoping to be re-elected as MP for Leeds North West has been fighting for months for a stop-gap solution to help patients like six-year-old Otley boy Sam Brown.

The Whartons Primary School pupil suffers from Morquio disease, a rare genetic condition that severely affects growth, and for the past two years has benefitted from a clinical trial of Vimizim.

Sam – like the 179 other people in the UK who have Morquio, Duchenne muscular dystrophy, or Tuberous sclerosis – is still anxiously waiting to see if the Government will pay for his treatment.

Mr Mulholland and representatives from national charities pressed their case with Life Sciences Minister George Freeman last Thursday – but were outraged when no-one from NHS England turned up.

Mr Mulholland said: “We have ministers saying the decision is not down to them, but NHS England. But NHS England are repeatedly failing to reply to letters or even turn up to meetings.

“The whole affair is a shambles, especially given we are here because NHS England’s own process was discriminatory and they were forced to scrap it.”

He then added: “I am disgusted at the NHS England cowards for failing to be answerable for their own mess, and for completely letting down the 180 people who desperately need treatment. Ministers absolutely must intervene.”

Communications officer at MPS Society, Charlotte Roberts, added: “We are grateful to Greg for ensuring that a third meeting took place with George Freeman and are hugely indebted for his tireless support, both for Sam and all those affected by this debacle.

“NHS England are misleading both the minister and prime minister that they are consulting on a process, but there is still no transparency on the assessment criteria they are going to use.”

She added: “They are also misrepresenting the notion of ‘active discussions’ with the pharmaceutical companies, and need to be held to account.”

NHS England was due to make a ruling in December but a legal challenge forced it to review its decision-making process.

The subsequent delay has left many patients like Sam, who has been told that his supply of Vimizim will end in May, facing an uncertain future.