Families of children with rare illnesses are set to hold urgent talks with drug firms after a new NHS process to decide funding for the latest treatments was plunged into chaos.
NHS England has been forced to suspend plans for the new approach following a legal challenge.
Now parents will meet representatives of major pharmaceutical companies to urgently discuss an interim solution for NHS England to purchase drugs for ultra rare conditions ahead of a formal decision which is not expected until next year.
Among those hit by the delays are sufferers of conditions including Duchenne muscular dystrophy and Morquio syndrome, an illness which severely restricts growthin youngsters including Sam Brown, six, of Otley, near Leeds, whose MP Greg Mulholland has pressed for talks with Ministers and drug companies over the issue.
He said the problems had left families facing “huge uncertainty” about whether their children will be able to secure access to the drugs in the long term.
He said: “Their conditions mean that they simply cannot wait till NHS England establish a proper process and the system failures that have taken place must not prevent this happening.
“We need a solution now that allows all these children certainty that they can take these vital drugs that make such a difference to them, their future and their families.”
Sam’s mother Katy said: “Sam has not chosen to suffer from an ultra-rare disease, he isn’t old enough to make lifestyle choices that might affect his health, yet he is being denied treatment by the NHS.
“In five years’ time, no one in Westminster will remember this, yet for Sam his life depends upon it. Sam deserves this fight, he deserves the right result and we shall carry on until we get it.”