Drugs: Ultra-rare Diseases Debate
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Jim Cunningham
Main Page: Jim Cunningham (Labour - Coventry South)Department Debates - View all Jim Cunningham's debates with the Department of Health and Social Care
Drugs: Ultra-rare Diseases
Jim Cunningham Excerpts(9 years, 6 months ago)
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Greg Mulholland
I thank the hon. Gentleman for his intervention. It has been a pleasure working with him and others. We must continue to do so. That leads me on to the fiasco of the decision-making process. The leadership of NHS England should hang their heads in shame over the way they have handled this. There is also a responsibility on the shoulders of the Minister, who I know cares about this, but he needs to get a grip of NHS England and the way that it has failed families. Part of the problem goes back to the passing of the Health and Social Care Act 2012, which led to the disbanding of the advisory group for national specialised services in April 2013. That advisory group was the expert body that advised on specialist treatments and services, and it was respected by many rare disease charities.
Mr Jim Cunningham (Coventry South) (Lab)
I congratulate the hon. Gentleman on securing this debate. There are muscular dystrophy treatments in Europe that have suddenly been halted in this country. I hope the Minister can give us a good answer on that because people are suffering while there are delays. In some instances, it could shorten their lives.
Greg Mulholland
I hope that we get answers today and a real promise of intervention from the Minister.