WEDNESDAY 16 JANUARY 2002

CLARA MACKAY AND DR IKE IHEANACHO

  20. I see from our briefing papers and the submissions that we have that the CA has come up with four recommendations concerning NICE where they see improvements, one of which struck me as eminently sensible and that was the one about resources being made available to patient organisations to enable them to have more of an opportunity to make a contribution. The thing that worries me is that the recommendation then goes on to say that the financing for this should come either from NICE or the government. Do you not fear that if the funding were to come from that the independence of those patient organisations or their effectiveness might be compromised or, even if they were not compromised, if they came up with views or opinions that others did not agree with, they would be accused of selling out to NICE or the government because they were reliant for some or all of their funding from those organisations? I am not sure how you get round that problem but do you think that recommendation is effective?
  (Clara MacKay) Yes. I quite take your point. When we were thinking about this recommendation, we very much had that same discussion. Any voluntary organisation or patient organisation that takes grants from the government or from other agencies certainly goes through this dilemma. There are two parts to that. One is where patient organisations have in some cases very effectively identified for NICE areas that require further research. One of the things that came through very strongly in our inquiry was instances where what was important to a patient in terms of effectiveness of the treatment was not something that may have been covered in clinical trials that were being looked at by NICE. It seems to me that that would warrant recognition of the need to have NICE, for example, commission research to further investigate that. That could be research money or research commissioned from that patient organisation if it has the expertise and capacity to manage that or perhaps some research by another organisation. That is one part which is not just relying on patient organisations to provide information that they are not going to take further and do some proper research around when that clearly is needed. The other part of it is that these patient organisations, regardless of whether or not they are providing clinical information, have a really important role to play in the NICE process, flagging up what needs to be looked at as part of the accountability process. I think NICE, when they give evidence, will say that they appreciate and rely on that very heavily. What came through so clearly at our inquiry is that some organisations are dedicating a whole individual for three months to trying to influence the NICE process. These can be quite small organisations. Stepping back, this is part of a bigger public accountability process and that does need to be recognised. Funding does need to be made available to patient organisations to enable them to do that. The dilemma about is the money ring fenced within NICE to ensure that patient organisations are supported in their work in contributing or is there another funding pool—for example, there are section 64 grants that the Department of Health manages. Should it come from there? I suppose that could be subject to some debate but the principle and the point is that public funding should be recognised as part of the process and public funding should be made available to support that.

  21. I wonder if Ms MacKay thought, when NICE was set up, that there would be such an emphasis on lobbying, both from patients' groups and from drug companies? What she has just said suggests that she wants more funds, so I suspect, the patients' side can do a bit more lobbying. Did you have the kind of naive idea I had, as a strong supporter of NICE that there would be scientific and medical evidence and that judgments would be made on whether treatments, including drugs, were effective or not? From what she has just said, it strikes me that we are going in the wrong direction on accountability and there are other ways of achieving that, but do we want to spend vast sums of money enabling people to make the same point over and over again?
  (Clara MacKay) I would not call it lobbying.

  22. It looks like lobbying.
  (Clara MacKay) I recognise that in some instances. What we saw at our inquiry is that patient organisations quite readily acknowledge that they take different approaches to NICE and stake out their stall in different ways. Some work completely focused on trying to identify issues that are important to their patient constituency and trying to get NICE to look at those. Others see their role more as lobbying for patient/public access to treatments that are on the market.

  23. Is this a good thing?
  (Clara MacKay) I think it is a natural thing and something, you are quite right, it is probably naive to assume does not happen. What we are talking about in our recommendations is not to support organisations to undertake political lobbying but to contribute in a way that is effective and appropriate. It is not about saying that we are going to launch a big media campaign.

  24. That is what would happen if you got more funds channelled into organisations.
  (Clara MacKay) I do not think it would because with any funding, for example, if you were looking at a drug for diabetes or Alzheimer's and you wanted to do some work with the patient constituency that might use that drug to find out what are the elements of that treatment that are most important to the patients, I do not think it is fair to expect those organisations to invest scarce resources—

  25. I am not saying you should stop patient organisations but if you could stop some other people doing it then maybe patient organisations would stop doing it and we would get a much more rational, sensible answer.
  (Clara MacKay) I am not sure I understand that point but what we are talking about in terms of support and funding is for contributions that we feel are expected and needed as part of the process; yet which patient organisations often struggle to provide and indeed a general concern within the patient group community that, where there are not patient organisations to support that process, there are constituencies of patients that have no representation in the process. That is another concern.

  26. Has the number of complaints to the Consumers' Association gone up since the advent of NICE in terms of people writing or telephoning, saying, "Look, we cannot get this particular product" and do you think NICE is a form of rationing?
  (Clara MacKay) I cannot say officially or formally whether formal complaints from our members, for example, have gone up since NICE has been established. We know from some research that we have done on looking at direct consumer advertising and doing qualitative research, interviewing patients and patient organisations that there is increasing public anxiety about access to treatments. NICE often provides the focus for that anxiety. It is probably a safe bet that the concern about NICE has increased and public concern about access generally has increased. If NICE is working effectively, then no, it is not rationing because it is providing guidance for the proper use of clinically effective drugs and it is a general policy stand that the CA very much supported when the Institute was set up.
  (Dr Iheanacho) Rationing is a loaded and difficult word for some people. But take the situation where one of the things NICE is charged to do is to provide advice on effective treatments for patients to help reduce ultimately things like postcode prescribing, and moves are afoot to ensure that health authorities implement NICE guidance: if that guidance is secure, reliable and credible, what it should mean is that patients uniformly across the country get access to good, effective treatment. Health authorities no doubt will have to cut their cloth to fit if, for instance, the cost of implementing a whole batch of NICE guidance means that they cannot afford something else. That is a bridge that will have to be crossed. The difficulty comes when there is serious concern about the quality of the guidance because if the guidance is not secure what you end up with is advice to be applied nationally that says people should have access to this, this and this; and then you have health authorities potentially up and down the country who say, "Okay, we have got to do this. What can we cut?" If they all end up cutting different things, it is hard to see that that in itself is a way of stopping postcode prescribing, because it may well be that things that end up being cut are things which NICE have not looked at but that are effective treatments. For me, it all goes back to the quality of the guidance. If the guidance is of high quality, reliable, credible and usable, people are in a position to say that whatever the pain of implementing it, it is worth doing. If it does not fulfil those criteria, we could end up with a worst case scenario where everybody has access to things which are not particularly good and then people start losing access to things that work perfectly well, in ways that differ across the country.

  27. Could we have a copy of the paper you sent to NICE about the influenza drugs?
  (Dr Iheanacho) Of course.

  Chairman: If there are no further questions, can I thank you both very much for your very helpful evidence.