NHS ENGLAND BUREAUCRACY

That this House expresses extremely strong concern that despite 14 months having passed since the treatment Vimizim was licensed by the European Medicines Agency in April 2014, it remains unavailable for use through NHS England; notes a series of broken commitments on decision dates, moved from 25 June 2015 to 30 June 2015 to 1 July 2015 to eventually 2 July 2015; further notes NHS England's eventual decision was to delay making a decision until October 2015; believes NHS England ultimately failed to make a decision on access to the treatments Vimizim and Translarna, while those who need Everolimus treatment remain in the dark about the possibility of a prescribing policy; strongly believes that it is unacceptable that 218 children and young adults with Morquio syndrome, Duchenne muscular dystrophy and tuberous sclerosis complex are being repeatedly let down and suffering the consequences of bureaucracy; and believes that those with ultra-rare progressive conditions do not have the luxury of time and need immediate access to these licensed life-changing treatments.