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Trial By Error: Who Has the School Study Documents?

Discussion in 'General ME/CFS news' started by Andy, Mar 4, 2019.

  1. Andy

    Andy Committee Member

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    Hampshire, UK
    http://www.virology.ws/2019/03/04/trial-by-error-who-has-the-school-study-documents/
     
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,637
    There does not seem to be any indication of which schools/Local Education Authority were involved other than they are likely to have been in the catchment area for the Bath CFS Service, one of the schools was an all girls state school and a Larry Cunningham was involved in liaising with the schools.

    If as claimed neither Bristol University and the Bath service have the relevant paper work, in what format was Proff Crawley's instructions to the schools about what to include in the letters to parents/guardians, and would a freedom of information request to the schools/LEA be feasible.

    [There is an all girls state school in Bath itself, though it is an academy which will impact on any role the LEA might have played and has a mixed sixth form.]
     
    Last edited: Mar 4, 2019
  3. inox

    inox Senior Member (Voting Rights)

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    539
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    So that's the way to do it, just claim any research project is a 'pilot clinical service'.
     
    Last edited: Mar 4, 2019
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    I'd like them to describe the service being delivered.

    Surely service evaluation has to actually name the service being delivered. What is that service? And how does it relate to the actual evaluation?

    Of course it doesn't help that it was published under research. Sometimes the devil is in the details. Sometimes the devil doesn't bother with that and just slaps the contradictory label himself because he knows nobody holds him accountable or care about those "non-patients" with imaginary complaints.
     
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  5. dave30th

    dave30th Senior Member (Voting Rights)

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    Of course that's one of the ridiculous things here. This was a pilot effort. So how could it have been service evaluation? There was no existing "service" to be evaluated.
     
  6. large donner

    large donner Guest

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    The quickest way to find out who has these documents would be to ask Crawley herself who has them. It would be fascinating to have her reply that she doesn't know.

    Of course the request cant come from David Tuller as that would be "harassment". :rolleyes:
     
    Last edited: Mar 4, 2019
  7. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522

    In my professional experience, all children with chronic health problems and 'fatigue" would have to go first to a pediatrician, ( sometimes the 'school doctor'/ community paediatician before any other statutory services ( including specialist ME and CFS Clinics) would accept the referral.
    Likewise for Alternative Education, Pupil Referral Units have the community paediatricians coming into the unit and also into mainstream schools.

    The LEA will more often not accept requests for home tuition unless the community paediatrician is willing to endorse it.

    Likewise Educational Welfare staff and school new shiny 'attendance" officers. Or "newly named 'Local Offer Brokers"!!!!!

    School,nurses if they still exist, will bow to the community paediatric service.......

    So people like EC are all powerful and will have a defined captive audience.

    New on the scene since 2010 are Parent Carer Organsations tasked with doing the LEA bidding on Alternative Provision for children with complex needs
    https://www.bristolparentcarers.org.uk/
    often, sick kids are treated as an afterthought, or what Bristol Commissioning team call ' Pushed out " learners!!!!,......

    https://www.bristol.gov.uk/documents/20182/239212/Commissioning+Plan+-+Meeting+the+needs+of+‘pushed+out’+learners+-+March+2016/d3a625a5-c0a6-4039-b95f-7e5a8d2b693b


    https://www.bristol.gov.uk/schools-learning-early-years/alternative-learning-provision.


    Alternative Learning Provision

    The Alternative Learning Provision (formerly the Pupil Referral Service) is for pupils who can’t attend mainstream educational settings.

    The service is made up of:

    1. Lansdown Park Secondary Specialist Provision

    2. St Matthias Park Pupil Referral Unit

    3. Bristol Hospital Education Service
    The Educated Otherwise/Alternative Learning Provision Hub commissions alternative provision from a range of alternative providers.

    Alternative Learning Provision

    The Alternative Learning Provision (formerly the Pupil Referral Service) is for pupils who can’t attend mainstream educational settings.

    The service is made up of:

    1. Lansdown Park Secondary Specialist Provision

    2. St Matthias Park Pupil Referral Unit

    3. Bristol Hospital Education Service
    The Educated Otherwise/Alternative Learning Provision Hub commissions alternative provision from a range of alternative providers.
     
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  8. dave30th

    dave30th Senior Member (Voting Rights)

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    thanks for the various suggestions. So which would be the local education agency to which I would send a freedom of information request?
     
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  9. large donner

    large donner Guest

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    Can someone ask Esther on twitter who to send the FOI as she should know which agency holds this information?
     
  10. Trish

    Trish Moderator Staff Member

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    UK
    I don't think she's on Twitter. There is a parody acount:
    https://twitter.com/Estherpouts
     
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  11. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    What I find astonishing here, is that nobody seems to be accountable for holding archived records of this information? It's not like it's receipts from when they nipped out to buy lunch; it's critical documentation from a clinical study! Are there really no regulations or guidelines to regulate retention of such data? If they are effectively admitting such data has been lost, then what the heck is going on? It's ludicrous. Is it maybe in breach of some regulation? I hope so.
     
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  12. Daisy

    Daisy Senior Member (Voting Rights)

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  13. dave30th

    dave30th Senior Member (Voting Rights)

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    I hope this is a joke. No one should approach Professor Crawley on behalf of anything having to do with me. I hope that is clear to everyone.
     
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  14. inox

    inox Senior Member (Voting Rights)

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    No, silly - it's just a pilot for a new service :noteworthy: no need to keep records :rolleyes:


    (.....the tongue in cheek is obvious, I hope? :p ) also - :banghead: :mad:
     
  15. Barry

    Barry Senior Member (Voting Rights)

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    Absolutely.
     
  16. Barry

    Barry Senior Member (Voting Rights)

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    MEMarge and Daisymay like this.
  17. JohnTheJack

    JohnTheJack Moderator Staff Member

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    The first thing I would try is to send an email to both FOI departments, copying the responses you have received and saying something like:

    To both parties,

    As you can see (below) I have made requests to both authorities and each has said the other is responsible.

    I wonder if you could please assist me by saying which in fact was the responsible authority for the trial and which would then be the one who would hold the information.

    Thank you for your help.

    Yours sincerely,



    Incidentally I would never use the term 'vexatious' in a request. If I think there is a likelihood that the vexatiousness exemption may be claimed then I would give the reasons for the request, but without actually using the word.
     
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  18. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  19. Adrian

    Adrian Administrator Staff Member

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    I wonder if it is worth writing to the local education authorities in the area (who used to run the schools most will now be independent) for example

    Bath and North east Somerset
    https://www.bathnes.gov.uk/services/schools-colleges-and-learning
    https://www.bathnes.gov.uk/services...cracy/data-protection-and-freedom-information
    information_governance@bathnes.gov.uk

    South Gloucester Which is part of bristol
    http://www.southglos.gov.uk/education-and-learning/schools-and-education/
    FoI Information: http://www.southglos.gov.uk/council...tion/making-a-freedom-of-information-request/
    freedomofinformation@southglos.gov.uk

    Bristol
    https://www.bristol.gov.uk/schools-learning-early-years
    FoI information
    https://www.bristol.gov.uk/data-protection-foi/freedom-of-information-foi
    https://www.bristol.gov.uk/foi-request
     
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  20. Adrian

    Adrian Administrator Staff Member

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    Given my experience they don't even offer a service at the required legal level for home education and they may agree to other things such as online education but won't deliver.
     
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