PATIENTS WITH ULTRA RARE DISEASES AND POWERS OF THE HEALTH SECRETARY

That this House notes the Public Administration Select Committee meeting of 25 February 2015 where the Secretary of State for Health referred to the document he uses to hold NHS England to account, the Framework Agreement between the Department of Health and NHS England; also notes that the Health Secretary went on to say in reference to the document that if NHS England is failing on that, we can hold them accountable on that; further notes that paragraph 4.11.3 of the Framework Agreement says if the Secretary of State considers that NHS England is significantly failing in its duties and functions he is able to intervene and issue directions to NHS England; also notes the cross-party Early Day Motion 819 thus far signed by 61 hon. Members; reiterates its strong concern at NHS England's bureaucracy blocking access to drugs to 180 patients with the ultra-rare diseases Morquio disease, Duchenne muscular dystrophy and tuberculosis sclerosis; further notes that this matter has been raised repeatedly with the Prime Minister, Deputy Prime Minister, Health Secretary and Life Sciences Minister; further notes that Ministers are constantly saying that resolving this situation is a matter for NHS England; however is dismayed at the lack or urgency on the part of NHS England; therefore calls on the Health Secretary to immediately intervene as the Framework Agreement allows him to and announce interim funding for the drugs these 180 patients urgently need.