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A series of PACE funding FoI requests

Discussion in 'General ME/CFS News' started by AR68, Apr 28, 2018.

  1. AR68

    AR68 Established Member (Voting Rights)

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    Hello,

    First post, here goes...

    I recently placed a number of Freedom of Information requests with the funders of the PACE trial, named on the QMUL website.


    All the funders replied to my requests.


    All four named funders are below, with the donations they disclosed to me:


    The Department of Health (and Social Care)

    £200,000


    The Department for Work and Pensions

    £90,000


    The Chief Scientist Office of the Scottish Government Health Directorate

    £250,000

    (“A further £165,055 was provided to NHS Lothian for Excess Treatment Costs”)


    The Medical Research Council contributed two sums: £2,076,363 and a later £702,975.


    The MRC said: “This included the contributions from the Department for Work and Pensions (£90k), Department of Health (£134k), National
    Institute for Health Research (£66k), and Chief Scientist Office (£250k).”.


    Therefore it would appear that, on the face of it, all the named funders contributed a total of £2,779,338, the first three contributions added into the total sum that the MRC gave to the trial.


    However, this is where things get a little more complicated….


    To cross check the figures further (the MRC had more or less confirmed what the other three had told me) I contacted the people who carried out the trial - QMUL.


    QMUL firstly gave me a slightly amended figure: £2,779,362; a very small difference and one that I did not question. But, secondly, QMUL claimed that the Department of Health contributed £1,633,020.


    Now, I'm assuming that this figure of £1,633,020 is an additional sum to the £200,000 figure that the DoH told me they had contributed to the trial, via the MRC. However the DoH did not disclose this sum to me thus I have contacted the Department to ask them to confirm this undisclosed contribution.


    Therefore the monies accounted for total to about £2.8m. IF the DoH confirm what QMUL told me, that sum accounted for will be approximately £4.4m.


    I have not included the £165k for excess costs.


    As you can see, the total (unconfirmed) sum is a bit short of the often quoted £5m.


    So, why did the DoH not disclose the extra contribution of £1.6m, assuming that QMUL have told the truth?


    Is the total cost of the trial quite a bit lower than the much-quoted £5m?


    If the cost of the trial is indeed £5m, where has the other money come from?


    At no point, by the way, am I suggesting that financial impropriety has taken place, but I am curious to know more about the funding.


    One final interesting note: QMUL told me that they were unable to provide me with a final cost of the trial.


    All the FoI requests here, apart from the Chief Scientist Office: https://www.whatdotheyknow.com/user/g_ryan/requests
     
    Last edited: Apr 28, 2018
  2. Trish

    Trish Moderator Staff Member

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    Hi @AR68, welcome to the forum. I hope you find us a friendly and helpful community.
    Thank you for your efforts in finding out the funding data.

    @dave30th, @JohnTheJack, or anyone else, I wonder whether you have any further information.
     
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  3. JohnTheJack

    JohnTheJack Senior Member (Voting Rights)

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    I don't have anything more on this particular question.
     
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    So QMUL were meant to be providing oversight for the research, but they don't know how much it cost or who paid for it?
     
    Last edited: Apr 28, 2018
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  5. AR68

    AR68 Established Member (Voting Rights)

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    QMUL cannot provide a final cost.
    It's fair to say I find this a little unusual.
     
  6. chrisb

    chrisb Senior Member (Voting Rights)

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    I am not entirely surprised at the difficulties. In a study of this sort which must involve NHS resources,one suspects that there must be notional costs and internal accounting. I do not know whether anyone familiar with NHSaccounting has commented on this.
     
  7. AR68

    AR68 Established Member (Voting Rights)

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    Yes. I don't know how the funding of such studies works so we'd probably both like a bit of information on the mechanics of this matter.
     
  8. Melanie

    Melanie Senior Member (Voting Rights)

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  9. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    Greetings to you from Liverpool, @AR68. :party: I know you're here for serious reasons (hope you get some decent answers to your FOI questions :thumbup: ), but it's also nice to have some fun here too. :) Gardens, birds, pets, film, or if there isn't something that appeals start off something new. :)
     
  10. AR68

    AR68 Established Member (Voting Rights)

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    Yes, I'm pretty sure I know who you are!

    Thought that it might be an idea to inform a wider group of PWMEs of the PACE funding (no harm in enquiring and it makes the patients more knowledgeable). On top of that, I (with my colleague) have a MUCH bigger ME project coming up which should be made public in the not too distant future. Me and my colleague have managed to uncover a fair amount of stuff that's not made it into the public domain so I'm much more excited by that.

    Had a bit of a few rough years recently (some of which I've gone into elsewhere) but slowly, very slowly, getting back to some sort of normality.

    Hope the husband and the family down in London is OK and STAY OFF THE CIGS!
     
  11. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Welcome @AR68.
    Your post sounds intriguing . Looking forward to hearing more.
    Hope that you are moving towards normality.
     
  12. Adrian

    Adrian Administrator

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    I think there is some discussion of this in the TMG or the TSC minutes. If I remember they seem to refer to paying some NHS fee for patients that I assume covers overheads for the trial and the additional medical support costs. But I didn't understand it but it seemed to refer to a standard process.

    I also seem to remember that they didn't pay for doctors time as there were comments about problems keeping doctors interested for the standard medical care piece.
     
  13. AR68

    AR68 Established Member (Voting Rights)

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    UPDATE:

    I asked the Department of Health about the £1.6m that QMUL said had been donated to them by the DoH but which had not been declared by the DoH.

    Today I received a reply from the Department of Health and they said:

    "In addition there has been no further funding to this project or any other projects on Myalgic
    Encephalopathy/Chronic Fatigue Syndrome at Queen Mary University London. DHSC/ NIHR has
    not contributed a further £1,663,020 according to our records."

    https://www.whatdotheyknow.com/request/dohsc_funding_of_pace_trial#incoming-1160120

    So, we have, at the very minimum, £1.6m unaccounted for. QMUL claim the DoH provided the money, the DoH say they didn't (sort of).
     
  14. Seven

    Seven Senior Member (Voting Rights)

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    What can one do legally when there is a discrepancy?
     
  15. AR68

    AR68 Established Member (Voting Rights)

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    I have to say I don't really know where to go with this.

    There is obviously a discrepancy and I do find it, er, unusual that such a sum of money cannot be accounted for.
     
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  16. Alvin

    Alvin Senior Member (Voting Rights)

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    Could perhaps @dave30th want to know about it?
     
  17. chrisb

    chrisb Senior Member (Voting Rights)

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    One must probably start with the assumption that those currently responding are stating accurately what the accounts appear to show.

    Can afurther FOI be made requesting further and better particulars of the £1.6 million payment, specifically the dates and method of payment. It has to be determined that this is in fact a payment and not just a legitimate bookkeeping entry.
     
  18. AR68

    AR68 Established Member (Voting Rights)

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    Just to recap (and to save people going back to the more detailed first post), £2.8m of the circa £5m PACE trial money has been accounted for ("accounted" in this case meaning reported by at least two sources). That leaves approximately £2.2m outstanding.

    Firstly, we don't know the exact amount that's been spent overall on the PACE trial for when I asked QMUL, they could not give me a definitive answer on that therefore secondly, we don't accurately know how much the shortfall is because we don't have a precise final figure and thirdly, of course, we don't know which people made up the unknown final figure.

    This is the point where I use a 'puzzled' emoticon!
     
  19. AR68

    AR68 Established Member (Voting Rights)

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    I would have thought that QMUL are the people to ask given that they are the ones that stated the funder and a precise sum.

    Either way, there's something odd here.
     
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  20. Esther12

    Esther12 Senior Member (Voting Rights)

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