On 7th June 2018 Lord Forsyth of Drumlean asked Her Majesty’s Government “what plans they have to ensure that clinicians in England are able to treat chronic lymphocytic leukaemia by prescribing Ibrutinib in accordance with NICE guidelines.” The Bishop of Carlisle, Rt Revd James Newcome, asked a follow-up question:
The Lord Bishop of Carlisle: My Lords, I am most grateful to the Minister for meeting some of the patients suffering from this terrible disease. Can he tell us whether anyone directly affected by blood cancer was consulted before the initial decision was made by NHS England to restrict access to Ibrutinib? Can he assure the House that NICE guidelines will not often be varied—and then only after consultation with patients?
Lord O’Shaughnessy: I thank the right reverend Prelate for that question. As he will know, NICE consults widely with patient groups and others in making its decisions. I am not clear at this stage whether NHS England met patient groups and others in designing its clinical commissioning guidelines, which is of course what I shall investigate next week.