3. 3. Statement: The Individual Patient Funding Request Review

Part of the debate – in the Senedd at 2:44 pm on 21 March 2017.

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Photo of Angela Burns Angela Burns Conservative 2:44, 21 March 2017

Diolch, Lywydd. Good afternoon, Cabinet Secretary. Thank you very much for bringing forward this statement today. I would also like to put on record my thanks to the review panel for conducting this and my thanks to you for involving all the opposition parties so comprehensively in this entire process. I’d also like to thank the great many members of the public. Particularly, I know that a lot of my constituents put forward their cases and they were very brave to do so. I’m grateful to all of them, because I think this is a very well-balanced report and I’m delighted that you’ve accepted all the recommendations and intend to move forward on it.

I do want to ask you just a couple of questions that come from it, though. A lot of this is predicated on the word ‘significant’. I’m sure all of us around this Chamber will be delighted that we no longer have to use the exceptionality clauses, but it says here quite clearly,

‘By “significant”, we mean that the nature of the benefit to be expected, and the consideration of cost-effectiveness of the intervention, should be comparable to the criteria normally applied to patients whose conditions have the benefit of HTA guidelines’.

So, ‘significance’ is obviously an accepted word for the main cohort when you are passing a medicine and saying that it is all right to be used on a general level, and now, of course, you’re looking to use that word, or the review recommends using the word ‘significant’ for rare and ultra-orphan diseases, for those who do not have an HTA, and for new interventions. So, I’d be very grateful if you could just give a little bit of clarity on how we define ‘significance’—how that’s defined and how we can remove any lack of clarity around that so people are very clear that it’s a very, sort of, logical assessment, because, of course, we’re trying to take the heat out of what is a very emotional subject.

I’d be very grateful as well if you could just give us a quick update on where you see the new national IPFR quality function sitting. Would it be part of one of the existing areas such as—I don’t know—Healthcare Inspectorate Wales, or will you be looking to set up something within your own portfolio, or an independent arm’s-length body?

Just two more questions: there was one area I didn’t think the review dealt with, particularly, and that was the question of putting timings onto decision-making processes. I haven’t been able to spot it when going through the review, and I just wondered if you might comment on that. By timings, that’s timings for a decision to be made, because, of course, most of the people who are applying for these through the IPFR treatment are people who are grievously sick—time is not their friend—and I know that there have been examples put forward to the review panel about how long it’s taken for a decision to be made, and how, in the end, that person has passed a point where what they were applying for would help them. So, if you could make some comment on that.

And finally—again, it’s timing, but this time the timing of the reports. I understand now that the health boards have between now and September to implement the recommendations, with a first report back to us in June 2018, and then ongoing reports every June after that. One of the criticisms of a previous method for the IPFR was that it wasn’t transparent enough, and that public and clinicians have lost confidence in it. I’m concerned that if we don’t get a full report back until June 2019, with a full 12 months of data, this may be too long to tweak it, pick up any issues, and correct any problems. So, I wonder if you might consider bringing forward, perhaps, for the short term, maybe three-monthly reports. I think it would help to increase public confidence, and it would allow problems to be identified and course corrections to be made much earlier, although I do accept that in the long term you’d want to lengthen that reporting process back out again. Thank you.