A series of PACE funding FoI requests

Audit Commission?

 

Curiouser and curiouser

 

Unfortunately Phil Hammond is Private Eye's 'MD', and works at Crawley's clinic.

 

https://twitter.com/user/status/1013347652631711744


link to original FOI (2011)
https://www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b#incoming-160364

 

Thanks to those who've shown an interest in this. I don't think that this is immediately important but there is obviously something awry here.

In my limited dealings with MS I noticed that he was quick to correct me in my (deliberate) omission of 'excess costs' in Scotland but appeared not to be aware of the NIHR contribution.

Anyway, it remains that we do not know where (at least) £1.6m for PACE comes from. I, as the person who put forward the FoI requests, quite frankly, don't know where to go with this as I feel it may end up with one organisation v another.

Maybe it needs more publicity, since I'm more or less a nobody?!

 

I mentioned this in a tweet to CM whilst in the same room as her in the June debate in the HoC but nobody seems to want to run with this!

It does need clarification.

 

This I have no knowledge of.

The focus (quite rightly) is on the research and treatment but maybe we should be paying a little more attention to where these people got funding from and what was funded?

You don't necessarily donate to something without having an interest in the outcome.

 

I've submitted a new request/enquiry regarding the trial funding:

https://www.whatdotheyknow.com/request/funding_of_pace_trial#followup

 

Might it be worth asking DWP how much they funded to the PACE trial? Though I expect they won't have a clue, they don't seem to have a clue about anything really. (I'm sure everyone knows I've stopped myself doing a major rant here! )

 

£90,000. Answer was given in 2004, if I remember correctly. <Checks notes>. Ah, here we are....Lord McKenzie of Luton, 24th March 2010: "A sum of £90,000, authorised by the Department for Work and Pensions, was made available as a contribution from the department to the PACE study. It has not been possible to confirm from records the source of the original request. The department's records dating back to 2004 do not show that we have used the Medical Research Council as a supplier of research in that time. Information from before 2004 could only be obtained at disproportionate cost".

 

Wonder if the missing amount was the estimated cost of the cbt therapists who administered it, if paid separately by their regions. Dont know how the funding would work.

 

My gut feeling is that the DWP contributed £90,000 and no more. I may, of course, be wrong but I see no real evidence to suggest that they contributed any more than that. There however remains a fair old question mark over the Department of Health and, obviously, QMUL. I would find it hard to believe that QMUL did not have a full breakdown of the costs.

Either way the lack of transparency over funding appears to be par for the course when it comes to the whole study in general.

 

Personally I'm not entirely convinced that the frequently-quoted figure of '£5m' is the actual figure. At best I think the figure is a round-up/down of the actual figure and given that the results from the trial are highly controversial, I would not take £5m as a total without viewing it with at least some doubt and curiousity.

 

I think it was a figure given by the PACE researchers a long time ago. If including the costs of trying to keep their data hidden, I expect it will be a lot more by now. Also though, I doubt anyone knows the true total cost.

edit: The full cost would include things like the time spent by people at the MRC trying to excuse their incompetence, etc.

 

In that case if the figure was made public by the PACE researchers some time ago it may *possibly* still be available in an archive somewhere.

Either way this issue will not disappear. It may just be best to 'come clean' as the momentum is now very much with the PACE critics in general.

 

Is the only source of the 5 million figure the PACE authors? I can't help thinking that if the number is true, it will be the first reliable and accurate number they've ever given for anything. They could have inflated it or deflated it for any number of reasons (inflating and deflating numbers to try and create the effect they want is what they do, after all). Maybe they rounded it up to 5 million from the real number during a boasting session?

 

Or maybe they rounded it down to try and avoid anger from tax payers as well as patients.

 

I honestly don't know where the '£5m' came from but it's reported everywhere without question, even by critics of PACE; I even fell into that trap. However I'm now more cautious. Objectively why should we not question the sum (and who contributed to it) when we have evidence that the results from PACE are somewhat questionable?

I just wish people were more cautious about quoting this figure UNTIL we have definitive proof of the funds.

 

I think there was a thread in which the amounts that are known to have been contributed to PACE by various parties were added up and didn't come very near to 5m, so the questions arises where the rest came from. If the 5m figure originated from the PACE authors, "plucked out of the air" is as likely an answer as any.