» Action Duchenne submit formal complaint to NHS England. HOW YOU CAN HELP! Action Duchenne

» Action Duchenne submit formal complaint to NHS England. HOW YOU CAN HELP! Action Duchenne: "Action Duchenne have submitted a formal letter of complaint to NHS England over their continued failure to establish a lawful, robust and transparent commissioning service that enables new drugs for the rare disease community to be assessed in an equitable and timely manner.

This letter also draws attention to NHS England’s routine failure to provide families and politicians with clear, accurate and thorough information. This latter point is exemplified by Sir Bruce Keogh (Medical Director of NHS England)’s  recent admission that Individual Patient Funding Requests may be viable route for patients to gain access to Translarna if they will suffer from “imminent, significant and irreversible deterioration” if the drug remains unavailable. This is information families and patients could have benefited from some 10 months ago."



'via Blog this'