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Today's APPG on ME meeting is cancelled

Discussion in 'Upcoming ME/CFS Events' started by Dx Revision Watch, Jan 17, 2017.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Please circulate widely on all platforms as there are currently no notices about this

    Yesterday, Dr Charles Shepherd was advised by Action for M.E.'s

    Katie McMahon <Katie@actionforme.org.uk>

    that today's APPG on ME meeting has been cancelled:


    "APPG inquiry meeting" has been cancelled

    When: Tuesday, 17 January 2017 02:00 PM to 03:00 PM

    Where: Room T, Portcullis House"​


    I have asked AfME and Dr Shepherd if AfME can get notices out ASAP as there is nothing that I can find in the public domain announcing this cancellation.
     
    Last edited: Jan 17, 2017
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  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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  3. Binkie4

    Binkie4 Senior Member

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    Thank you @ Dx Revision Watch for correcting my misapprehension about APPG secretariat.
    I think I got it mixed up with the CMRC where I think AfME provides all admin help?

    Just glad that you are ensuring circulation of cancellation. It takes ages to get an MP to show an interest and, if an MP turned up to a meeting cancelled without notification, then am not sure s/he would be back.
     
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  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    PA Anna is out of her office.
    So, I've just tried phoning Sonya, on two numbers.

    Out of office on both.

    Main AfME phone number: "No one available to take your call."

    No means of talking to anyone about this.

    Grrrrrr.
     
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  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Not sure, but I think you may be right that they provide admin to CMRC.

    I share your concerns.

    Not good that there is no-one in AfME available today to field calls about the cancellation.
     
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  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Binkie4 has reminded me that this current APPG on ME is not open to members of the public.

    It used to be the case that it was run as a group where members of the public could attend. Then the Officers at the time voted to change the policy over members of the public attending.

    So this group's policy is MPs and invited only.
     
    Last edited: Jan 17, 2017
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  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Update:

    From Sonya Chawdhury:


    The meeting is not cancelled; it is a [members and MPs] meeting to consider inquiry evidence and is being chaired by Daniel Zeichner MP as the Inquiry Chair. Hope that clarifies the position

    Sonya Chowdhury
    Chief Executive, Action for M.E.

    ---------------

    From Katie NcMahon

    Thanks for your email.

    There has been some confusion around the APPG meeting, so I want to make sure we're on the same page.

    The meeting is not cancelled, but it is a parliamentarians only meeting, in line with the plan for the inquiry which has been set out by the Chair of the inquiry, Daniel Zeichner MP.

    Unfortunately, our communication got confused along the line and invites were also sent out to the charity partners of the APPG.

    Therefore the recent cancellation notice was for the charity partners. All charity partners were informed earlier of this amendment to the meeting having had direct contact from Clare Ogden, our Head of Comms and Policy at Action for M.E.

    I hope that's clear - please let me know of there are any further actions required still, or if I've misunderstood your email in any way. I apologise again for the confusion this has caused.

    Kind regards

    Katie
     
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  8. user9876

    user9876 Senior Member

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    What is the inquiry about?
     
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  9. Binkie4

    Binkie4 Senior Member

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    Is this saying that MPs are invited after all? This is presumably what " Parliamentarians" means. What inquiry?

    " I hope that's clear". (Quote from Katie) It is as clear as mud to me.

    Have I missed a whole loop of something? I saw notice of cancellation last night and husband emailed MP, asking CS this morning to do the same to try and maintain his interest.

    I read other posts doing similar things.
    What is the position now? It would look so amateurish to go back to MP now and change info again.
    Are we reinviting uninvited MPs?
    Can anyone clarify?
     
  10. AndyPR

    AndyPR Senior Member

    Oh good god. Yay for AfME, how can we lose with them on our side. :bang-head:

    Thanks for all the hard work in trying to sort this Suzy @Dx Revision Watch
     
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  11. Binkie4

    Binkie4 Senior Member

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    Yes, @Dx Revision Watch, thank you as @AndyPR said for all your work.

    Do you have any hair left? I think I would have torn mine out.
     
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  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    https://www.actionforme.org.uk/make...tion-now/all-party-parliamentary-group-on-me/

    (...)

    Social care inquiry
    Following the publication of Action for M.E.'s Close to collapse report, the APPG is leading an inquiry into the shocking lack of social care provision for people with M.E. This included a policy roundtable in April 2016, chaired by Daniel Zeichner MP, which sought to explore how we can improve access to appropriate social care for people with M.E., asking how we can:

    • address the barriers faced by people with M.E. in accessing care and support
    • ensure that those delivering social care assessments have access to all the information they need to achieve a good understanding of M.E. and its impact
    • identify tangible, realistic and achievable practical steps that will improve outcomes for people with M.E. and their carers.
    The findings from the inquiry will be published later this year.

    Minutes of last meeting:

    7 September 2016


    https://www.actionforme.org.uk/uploads/pdfs/sept-2016-appg-agm-minutes.pdf
     
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  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    None at all, but I have a good hat:

    [​IMG]
     
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    My understanding is that the meeting was for APPG on ME members and Parliamentarians.

    What was cancelled was not the meeting, per se, but the presence of charity reps at the meeting.
     
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  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Daniel Zeichner MP is an Officer holder of the APPG on ME (Secretary).


    Minutes of last meeting:

    7 September 2016


    https://www.actionforme.org.uk/uploads/pdfs/sept-2016-appg-agm-minutes.pdf

    (...)

    3. Social care inquiry

    Countess of Mar shared her concerns that MPs need to consider all the evidence about the current state of affairs before agreeing recommendations as per previous inquiries. She felt that decisions could not be made at the APPG meeting. Sonya Chowdhury agreed and identified that Daniel Zeichner MP, as Inquiry Chair, would lead these discussions with APPG members to ensure consideration of a draft report (which would include an Executive Summary), submitted evidence, evidence from the Roundtable discussion and the recommendations; consultation with charity colleagues who participate in APPG meetings would contribute to these discussions.
    Sonya suggested that she and Countess of Mar have a discussion with Daniel on the process of the inquiry and agreed to convene this meeting in October.

    Charles Shephard said that it is important that the Inquiry and its recommendations have maximum impact.
    Cath Ross emphasised that it is necessary to communicate to MPs the reality of the situation that people with M.E. find themselves in. For example, people being refused care. While much-needed research is going to take time, measures to address such experiences as these can have a much more immediate impact on the lives of people with M.E.

    Sonya highlighted that the terms of reference for the inquiry had already been approved, which Sir Peter Bottomley had been involved in. In terms of inputting into the report, there are examples readily available of people being refused care, and who do not have access to services. What is required as an output from the inquiry to address the neglect that people with M.E. experience is one or two ambitious policy goals alongside some quick wins.
    Catherine Hale stated that the Close to Collapse report focussed on the experience of people with M.E. in relation to their access to social care and gave a good representation of the current state of affairs. More case studies could be included in this final report, if required, in order to inform and ground the recommendations.
    Cath Ross suggested that legal advice could be sought on the duty of the local authority, and this aspect could be incorporated into the recommendations if appropriate.

    Actions: Daniel Zeichner MP, Countess of Mar and Sonya Chowdhury will convene to discuss the process of the inquiry.
     
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  16. JohnCB

    JohnCB Immoderate

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    @Dx Revision Watch thanks for sorting through this mess.

    It is astonishing how far people will go to avoid saying sorry and admitting they got things wrong. A proper apology is not a sign of weakness. Obfuscating and denying errors are signs of weakness. A cock-up has been made, we have no idea how many people have been incommoded, and better efforts should have been made to avoid such a mistake in the first place and to correct it at the first possible opportunity. The chief executive of AfME is well paid and I would expect better. Perhaps more concentration on the day job and less time building imaginary international organisations would be a good idea.
     
  17. Cinders66

    Cinders66 Senior Member

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    AFME, all those paid staff and they achieve nothing beyond "support" than propping up establishment approach . Contrast to the real action group #MEaction.
    I'm guessing this inquiry is expected to fill up some time, give an illusion Of action whilst being as ultimately effective as the Gibson inquiry.
    The moderate and severe who need care are mainly failed by the fatigue clinic /CBT approach to CFS which is leaving few with access to and support from expert medics, combined with the general rehabilitation narrative etc. Thinking people like Rees Mobbs, who is probably fully supportive of the Tory squeeze on social care spending causing havoc country wide, will be a knight in armour on this cause (he's chair or something of ME APPG) seems naive.
    I saw no asking of people to try to ask MPs to attend so are we expecting more than the usual 2-4 to attend anyway? Totally disillusioned with UK charity advocacy 20-30 years on it's still amateurs
     
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  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    The current chair is Sir Peter Bottomley MP

    Current Officers according to the Minutes of 7 September 2016 are

    Chair: Sir Peter Bottomley MP
    Co-Chair: Countess of Mar
    Kerry McCarthy MP
    Julian Sturdy MP
    Carol Monaghan MP
    Vice-Chair: Mark Tami MP
    Secretary: Daniel Zeichner MP


    Officers according to the Minutes of 11 May 2016 meeting were:

    All Party Parliamentary Group on M.E.
    Chair Sir Peter Bottomley MP
    Co-Chair Countess of Mar
    Vice-Chair Mark Tami MP
    Secretary Jacob Rees-Mogg MP

    2. Appointment of new officer – Daniel Zeichner as Secretary

    Unclear whether Jacob Rees-Mogg MP retains any involvement with the current group.

    ----------------------------

    According to the Minutes of the 11 May 2016 meeting:

    Secretariat
    Sonya Chowdhury, Action for M.E.
    Declan Mullaney, Action for M.E./Whitehouse Consultancy
    Dr Charles Shepherd, ME Association


    Declan Mullaney

    Associate Political Consultant, Whitehouse Consultancy
    http://www.publicaffairsnetworking.com/profile/declan-mullaney


    He also attended as "Secretariat" at the May 2016 meeting.

    Secretariat
    Declan Mullaney, Action for M.E./Whitehouse Consultancy
    Dr Charles Shepherd, ME Association


    In what capacity does he attend these meetings and what is his relationship with AfME?
     
    Last edited: Jan 17, 2017
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  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Did you spot that it incorporates an excellent trunk warmer?
     
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