Trial By Error: Who Has the School Study Documents?

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

  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I agree, but the legislation and Statutory guidance says otherwise, and they often break all those rules.
    Thus any 'research' which can 'encourage' improved attendance, etc will be welcome 'cos it lets them off the hook- so they will argue.
    I am just looking at the 2016 Bath Commissioning document with dismay........
    I went through the Suffolk new Alternative Provision Consultation in much the same way.
    Where do the sick chronically ill kids fit in?
     
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  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Tuller's blogs related to Esther Crawley's work often make my head spin.

    "I have previously sent a Freedom of Information request about this study to Bristol University. I was informed that the university does not hold the documents of interest because the study was conducted out of the Bath clinical service. That is why I am now appealing to you."

    “We do not hold information in relation to your request. Please redirect your request to the University of Bristol.”

    This isn't as crazy as some of the LP SMILE trial stuff, where 'prospective' registration occurred after they'd used information from participants in the trial to change outcomes, but I'm still left feeling that I must be misunderstanding something.
     
  3. Andy

    Andy Committee Member

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  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    They don' t.
    Hence current interest in " off rolling"

    Virtual education should be state funded and complement mainstream.it isn' t and that' s a big part of the issue.

    Even if a child could make it into school for a single subject, if able, that could be augmented / reinforced via virtual ed.
    It also could be cheaper than home tutors.

    Just need to find a not for profit model.
     
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  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Trying to identify the schools involved from the article is likely to be problematic. Geographically all we can say is that the schools are within the catchment of the Bath CFS/ME service that covers a number of LEAs (Local Edcation Authorities).

    The most immediate is Bath and NE Somerset Council (see https://www.bathnes.gov.uk/services/schools-colleges-and-learning) which has some 20 secondary schools (see http://schoolswebdirectory.co.uk/leasearch.php?lea=Bath and NE Somerset ) but if the schools involved are academies contacting the Council rather than the schools may not help.

    So far I have only been able to identify one all girls [state] school in Bath itself (see http://www.hayesfield.com/ ) which is an academy and is part of a multi school trust (see http://www.batheducationtrust.com/index.php ), so it is not clear if it is part of the study whether an FOI request should be sent to the Headteacher or to the Bath Education Trust.

    The published paper thanks one Larry Cunningham ("who helped us work with the schools in this project"), but so far the only Larry Cunningham I have found with links to the area co wrote a book of walks.
     
    Last edited: Mar 5, 2019
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  6. Amw66

    Amw66 Senior Member (Voting Rights)

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  7. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Not sure as services have changed and been restructured since 2010/2011.
    I have contacted the parent Carer group who span this time frame initially.

    Softly, softly......
    Don't want anyone closing ranks before we start!
    I have asked for info both as an involved exprofessional and a coordinator (as well as a family carer).
    I will do some more ground work and fishing first, then pass on to you what I find......

    Will private message what I have asked for.
     
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  8. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Just to let all know, I am making some headway!
     
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  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    The net is closing, but no one seems to have been around....

    Interestingly, this chap was in children's commissioning in 2015 and tasked to do a 'mini review' and related scoping exercise on "pushed out learners".
    I have read his stuff - nothing about sick kids- just "others'????? but he said children with chronic long term medical needs were "scoped out" of his mini review, which turned out to be a rather major one!
    He was very helpful......


    Hi B
    Thanks for your enquiry and earlier phone call.
    I’ve made enquires with relevant teams but unfortunately no-one in current Bristol City Council staff was around and doing anything related to the study mentioned in 2011, and they are not aware of any archive records about this.
    Chris Davies, Head of Alternative Learning advised that Jim Bowyer the Headteacher at Hospital Education – BHES may be able to advise. His email is jim.bowyer@bristol-schools.uk
    Best wishes
    Duncan
    Duncan Fleming
    Equalities and Community Cohesion Officer
    Bristol City Council
    Tel: 0117 3574828
    Email: duncan.fleming@bristol.gov.uk
    cid:image003.jpg@01D4B6FD.297BB020
     
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  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Chap above mentioned EC..... I did not respond to that but kept it general.
    http://bathneshealthandcare.nhs.uk/childrens/community-paediatric-service/
    Having a little look here..
    OM Gooddness, it's a privitised service Virgin Care......



    https://www.bathnes.gov.uk/services...arers-educational/children-missing-educatio-4
    Home » Services » Schools colleges and learning » Support parentscarers educational » Education for C&YP who cannot attend School because of medical health needs
    Education for C&YP who cannot attend School because of medical health needs


    Hospital Education and Reintegration Service
    The Hospital Education and Reintegration Service (HERS) offers teaching and support/advice to children and young people who cannot attend school because of health medical needs. As of September 2018, this service is being provided in B&NES by Broadlands Academy (The Hive).

    B&NES Policy Statement Ensuring a good education for children who cannot attend school because of health needs

    If you would like any information, please email the EOTAS officer at eotas@bathnes.gov.uk T: 01225 394307

    Schools, Colleges and Learning
    Support for Parents/Carers (Educational)
    Children Missing Education
    Absence from School
    Chaperones (Children in Entertainment)
    Child Employment
    Child Performance Licences
    Compulsory School Age
    Education for C&YP who cannot attend School because of medical health needs
    Elective Home Education
    Exclusion of Pupils
    Holidays in Term Time
    Penalty Notices
    Private Tutors
    School Attendance
    Contact Us
    Hospital Education and Reintegration Service,
    Broadlands Academy,
    St Francis Road,
    Keynsham,
    BS31 2DY

    01225 394307
    eotas@bathnes.gov.uk

    [​IMG]
     
    Last edited: Mar 5, 2019
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  11. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    ehttps://modalitypartnership.nhs.uk/.../2011/december/me-cfs-cause-of-school-absence
    NHS website - Study of chronic fatigue syndrome in children

    Chronic fatigue syndrome could affect one in 100 pupils, BBC News reported.

    The estimate is based on research that followed nearly 3,000 children at three secondary schools in Bath. It found that 28 pupils missed school due to chronic fatigue syndrome. The Daily Telegraph said that this means the condition could be 10 times more common than previously thought.

    This research investigated whether school-based clinics could be used to identify children with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). The researchers assessed pupils who missed more than a fifth of school days each term and found that 28, around 1% of the schools’ population, had CFS. Only five of these children had been previously diagnosed. Children detected as having ME by the school clinics tended to be less severely affected than children who had been previously referred to health services.

    The research highlights that CFS is a possible cause of unexplained school absence and that symptoms of fatigue should be followed up. While fatigue is a symptom of CFS, it can also be caused by other conditions such as mood disorders (for example depression) or sleep problems. Although the prevalence of CFS in these schoolchildren is higher than previously thought, further research is needed to see if these figures are representative of the whole country, as well as the Bath area.
     
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  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    Ta Suffolkres. Any reason to just summarise the e-mail rather than post it on a public forum? I don't know, but thought I'd check with you.
     
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  13. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Sorry a bit slow today. Are you suggesting a summary rather than whole email?

    I posted the email complete so DT ( and others), can see the public LEA officers tasked with our children's situation.
    DT might need to issue an FOI at some point, but to whom?

    I did summarise the telephone conversation as I could see little regard to sick children's needs in the documents issued in 2015 and 2016.
    Duncan confirmed this to be the case as this group had been 'scoped out" of the debate and consultation at that time.

    Just browsing this;
    https://purehost.bath.ac.uk/ws/port...ronic_Fatigue_in_Childhood_Revision_clean.pdf
     
    Last edited: Mar 6, 2019
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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    Possibly - I just wasn't sure if there'd be any downside to posting the e-mail and his contact info on a public forum. I know a lot of those corporate e-mails include 'not to be republished' small print, but I don't really know what is seen as the done thing, so just thought I'd mention it for you to consider.
     
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