John Penrose

Conservative Party | Weston-super-Mare

Macular Degeneration

Westminster Hall Debate –

Sir George Young: The Department of Health—and I welcome the Minister, although I may say some unkind things about his Department—has said that the NICE review process should not be a barrier to the use of new treatments, but it has in effect opted out and delegated the decision on whether funding should be authorised to the 152 primary care trusts in England. Many are overspent, and do not have the resources to conduct the effective reviews of the treatment that they are obliged to carry out. The RNIB and the Macular Disease Society have told me that many primary care trusts hide behind the absence of NICE guidance and simply refuse treatment point blank. In Oxford, a consultant’s application for permission to treat was referred to the PCT’s exceptional circumstances committee, which takes a month. It turned down the application because going blind was not regarded as an exceptional circumstance. Consultants in Bristol have been told not even to apply for funding. Therefore, in effect, there is a blanket ban on using those treatments for patients. Many of my hon. Friends will know that their own PCTs are under enormous financial pressure and unless they have to provide a treatment, many decide not to.

John Penrose (Weston-super-Mare) (Con): I congratulate my right hon. Friend on the way in which he is making his case. I shall strengthen his argument by citing the example of North Somerset primary care trust in my constituency, which effectively runs the system that he is describing. Basically, if something is not mandatory under NICE guidelines, because there is a double deficit situation—both the PCT and the hospital are in deficit—the treatment is simply not available.

Sir George Young: I am grateful to my hon. Friend for reinforcing the case that I am making. I shall move on in a moment to what I think that we should do about that.
At Health questions, the Secretary of State for Health said:

“No patient should be refused Lucentis or Macugen simply because NICE guidance does not yet exist”. —[Official Report, 6 February 2007; Vol. 456, c. 692.]

But that is exactly what is happening. The treatments are not being prescribed because the NICE guidance does not exist.

Sir George Young: How come Scotland has gone around that course already and has licensed and approved Macugen?

Andy Burnham: I am sure that the right hon. Gentleman would accept that the NICE process is incredibly thorough and detailed. Because of that, it inevitably takes some time to complete. NICE has developed a reputation around the world for producing the gold standard of advice on new drugs and technologies, such is the quality of its work.

I refer again to my guidance to the national health service on 14 December last year on precisely what happens in the interim when a treatment is being considered by NICE. I say categorically for the record that it is not appropriate for PCTs to refuse treatment simply on the basis that NICE guidance has not yet been issued. I cannot be any clearer than that. Neither is it appropriate for such decisions to be taken in Whitehall, bypassing the system established to ensure that national clinical guidance is of the highest quality and based on a robust and independent assessment of the evidence, which is exactly what is appening at the moment. I fully appreciate people’s frustrations as that process takes its time, but I repeat what the Secretary of State said a few weeks ago: no PCT should deny patients Lucentis or Macugen on the basis that NICE has not yet finalised its deliberations.

John Penrose: I appreciate what the Minister says about the guidance that he issued. Does he have any evidence either way that it is actually being followed? Anecdotally—around the country and, I suspect, in many hon. Members’ surgeries—there is abundant comment from patients and others that decisions are being taken locally on the basis of finance. The decisions have to be taken on that basis because the money is not there to pay for this stuff. I am concerned that the Minister’s guidelines may, generally, not be being followed as he thinks they are.

Andy Burnham: It is for PCTs to determine those questions. In many cases they will set clinical criteria, whereby cases will be considered on an exceptional basis and a clinically led decision will be taken locally. That is the right way for them to proceed. Opposition Members often say, “Trust the professionals. Trust the NHS. Don’t interfere in all the decisions that the system makes.” At the same time, however, we get another request to do differently. In this case, the guidance from the centre could not be clearer: PCTs should consider the best available international evidence, and other clinical evidence, available today on those treatments and make their decisions on the back of that. However, like all health commissioners, they have to balance available resources with the clinical evidence. That is the job that NICE has to do, too.