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UK All Party Parliamentary Group being reactivated - 2020

Discussion in 'Advocacy Action Alerts' started by NelliePledge, Jan 9, 2020.

  1. Trish

    Trish Moderator Staff Member

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    I assume you mean Chris Ponting. I doubt there is any point the APPG lobbying funding bodies like the MRC to support particular research projects - the MRC has to go through its professional application and review process, not be directed by politicians, I think.
     
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    From what I’ve seen in other areas they can do inquiries and the autism one was pretty important in getting a national strategy for autism set up. Eg carol mongahon is on terminal illness appg who have publishedhttps://www.mariecurie.org.uk/policy/appg-for-terminal-illness



    Inquiry into legal definition of terminal illness
    The APPG for Terminal Illness has written a report following its inquiry on the impact of the legal definition of terminal illness on access to benefits for people living with terminal conditions.

    Published in July 2019, the report contains the findings from this inquiry and gives recommendations to policy makers on ways to improve the legal definition and guidance to healthcare professionals.

    https://www.mssociety.org.uk/get-involved/campaign-with-us/our-work-in-government
    All-Party Parliamentary Group for Multiple Sclerosis (Westminster)

    We work with a cross-party group of Parliamentarians who are committed to tackling issues that affect people with MS: the All-Party Parliamentary Group for Multiple Sclerosis (APPG). The group is made up of MPs and peers from all parties who help to make sure MS issues are high on the government’s agenda.

    Simon Hoare, MP for North Dorset, is Chair of the Group and has a keen interest in the welfare and healthcare issues affecting people with MS. Lord Dubs, Lord Monks, Chris Law MP and Karen Lee MP are all Vice–Chairs of the Group.

    The focus for the APPG for MS most recently has been to campaign to ensure access to ocrelizumab - the first treatment for early primary progressive MS. We'll be supporting the Group to re-form after the 2019 General Election.
    The MS society
     
    Last edited: Feb 18, 2020
  3. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Reasonable, i.e. as you highlight the MRC is an independent decision maker; therefore, the APPG cannot influence it directly. However, could the APPG lobby the Government to fund biomedical research e.g. by highlighting that GWAS studies have been useful in other diseases i.e. where a hypothesis driven approach has failed (one example is Alzheimer's)?

    I'm a bit concerned that this APPG, like the previous one, in effect becomes a vehicle to complain - without any meaningful progress in terms of biomedical research, or healthcare (the last APPG gave us graded exercise therapy), or social security support.

    This (new APPG) looks like it may be a useful vehicle; however, we need to be a careful --- forming groups is one thing, making progress re biomedical research and how people with ME are treated is another!

    Is the APPG a potential route to challenging the position of people regarding access to social security benefits?
     
  4. Andy

    Andy Committee Member & Outreach

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    https://www.meaction.net/2020/02/19/next-steps-for-the-appg-on-me-in-the-uk/
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    eta:
     
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    Whatever happened with the previous APPG and how impressed or unimpressed people were this is a different time and a new group of MPs. Carol Monaghan is doing a good job in getting ME highlighted. I think it is right to understand that an APPG can’t work miracles but i have confidence that CM is working hard to try to bring MPs together to try to exert some collective pressure in whatever formal and informal ways are open to them as a group, including by those MPs who are within the government party. And whatever pressure for change they can bring to bear is better than not having an APPG and there just being easily deflected effort of the odd PQ and letters to health ministers by individual MPs.
     
  7. Andy

    Andy Committee Member & Outreach

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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    next meeting
    APPG for #MECFS 1pm Tue 3 Mar



    eta:
     
    Last edited: Feb 21, 2020
  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Action for m.e seem to have no desire for real progress and improvement. They bundled the APPG announcement in with another, put up the wrong link and their letter
    https://www.actionforme.org.uk/news/will-your-mp-attend-the-appg-for-me-in-march/

    Conveys absolutely nothing about the desperate need in our community for action or any suggestions of a long standing funding crisis, in fact the info & letter provided it makes it just sound like why not invite your MP for a biomedical research tea party. How non rallying /inspiring is that. The House of Commons briefing paper was calling for this -=
    https://www.meassociation.org.uk/wp...ing-on-M.E.-for-Backbench-Debate-18.01.19.pdf

    It turns out just 24 MPs attended the last APPG due to short notice, and in 2005 they were getting 100 MPs and Lords so you’d think - if the charities wanted real progress and parliamentary lobbying - they’d be really pushing for more MPs to understand the ME plight and attend to start to do something. Contrast with the original letter #Meaction put out for the first meeting
    .

    when the last APPG died it’s slow ghastly death following ridiculous meetings of just 2 -5 MPs attending, the countess of marr was saying that it hadn’t been able to keep momentum and keep/attract MP interest and the charities were saying they couldn’t spare he time and resource to maintain the secretariat role.https://www.meassociation.org.uk/20...l-now-be-via-forward-me-group-22-august-2017/ For an illness situation that should be talked of as the scandal of the 21st century, with a very sick population who are generally considered one of the most underserved in the uk with problems across the board, My own belief is that the charities have to change their own attitude and behaviour to such things instead of offering the community just this:

    https://www.actionforme.org.uk/research/introduction/

    edit. The 100 MPs lords mentioned was membership of appg, not attendees stats.
     
    Last edited: Feb 28, 2020
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I hope the new APPG have been given this to read.

    I would like to see the APPG continue along the lines of the Parliamentary debates last year.
    Bring the new members up to speed re PACE and the CBT/GET NICE guidelines issue; (they voted last year to remove CBT/GET). And how biomedical research has received little funding as a direct result.
    Plus the issue of parents of kids with ME being targeted by SS (social services); which all stems from the same false narrative.
    MPs should also be made aware of the role the SMC has played in this.

    The truth of the political issues behind the ME communitys plight are rarely exposed and MPs are in a unique position to be able to do it.

    Yes, they should also be made aware of all the research that has been going on, particularly in the US.
    But unless they are fully aware of the situation we are in, how long it has been going on and who are responsible, the biomedical research presentations will have little impact and be just like any other illness lobby group begging for more money.

    eta:
    I know that AfME would like us to put PACE behind us and 'move on' (and its obvious why) but it's influence can still be clearly seen in their own literature, as well as BACME run clinics up and down the country.
     
    Last edited: Feb 21, 2020
  11. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Reminds me of advice regarding lobbying in the EU "You need to pin one [MEP] down to doing the legwork" that advice was provided by a UK MEP (now former MEP obviously) in relation to this EU Petition [https://www.s4me.info/threads/me-ac...-is-preparing-a-resolution-on-me.13569/page-2]

    I also agree with this "easily deflected effort of the odd PQ and letters to health ministers by individual MPs".

    @Andy has posted an extract from the minutes(?):
    "The AGM established the topics that the APPG on ME will cover, including:

    Access to healthcare
    Access to financial support and welfare benefits
    Protection for children with ME
    Biomedical research spending by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR)"


    So that looks promising, good luck to all of those participating/inputting.

    @Michiel Tack @Giada Da Ros
     
  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    This sums uP well how the severely affected feel about research situation. I hope that this need And urgency is conveyed to the MPs at the meeting rather than the science presentations taking up all the time.

    In 2011 this was written by the late
    Emily collingridge, an appeal

     
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  13. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Where does the figure of 100 MPs and Lords attending APPG on ME meetings in 2005 come from, please?
     
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  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    In my experience, although APPGs used to require 20 "Qualifying members" in order to register a new group, after the inauguration meeting, it was pretty much unknown for anything like the full 20 "Qualifying members" to pitch up at subsequent meetings.

    Not unknown, either, for MPs to sometimes send their parliamentary assistants to APPG on ME meetings, as proxy attendees.

    Not unusual, either, for an MP to be member of two or three APPGs.
     
    Last edited: Feb 28, 2020
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  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I'd be looking for quality, short and long-term commitment, over numbers.

    Little point having 30 or more MPs and Members of the HoL turning up for an initial meeting, if in practice, only a handful (or less than a handful) bother to attend subsequent meetings or do attend, but infrequently.

    An historical example:

    This APPG on ME group from 2007, would have had 20 "Qualifying members" whose names would have been listed in the details in the Register for this particular Parliamentary group:

    https://meagenda.wordpress.com/2007/07/31/appg-on-me-minutes-of-12-july-07-meeting/

    Minutes of the meeting of the All Party Parliamentary Group on M.E.

    Thursday 12th July 2007 Committee Room 17, House of Commons

    The group's Office Holders, MP members and HoL members who actually turned up for this meeting were:

    PRESENT

    Dr Des Turner MP (Chair) (Office Holder)
    Dr Ian Gibson MP (Secretary) (Office Holder)
    David Amess MP (Treasurer) (Office Holder)
    Celia Barlow MP (Member)
    John Bercow MP (Member)

    Koyes Ahmed (Office of Dr Des Turner MP) (Non voting, proxy attendee)
     
    Last edited: Feb 28, 2020
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  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  18. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Here, although it’s membership rather than attendees of one meeting so not like for like, apologise. I’ve added an amendment. The sad thing I didn’t pick up on was that then, in 2005, 14 attendees was noted as the best for 7 years, so it was actually low attendance back then. The idea would be lots of members initially to allow for drop off? I agree drop off awas huge problem before with Associated members vastly outnumbering MPs. I agree main point is having enough really committed members.
    I don’t know when the ME APPG started? The minutes info @Dolphin provided start 2000. key point , it isn’t new.
     
    Last edited: Feb 28, 2020
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  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    As I say, I'd rather see a small number of committed MPs and members of the HoL who are prepared to attend regularly involved from the beginning than a large number.

    What happened to that original 100 who showed initial interest in 2005? They would all have been receiving notices two weeks prior to a meeting, yet the vast majority very rapidly lost interest.

    There are no "Associated members". Only MPs and members of the House of Lords are members of APPGs and only they can vote at an APPG. Anyone else is there as a guest or in the case of AfME and MEA, as Secretariat.

    I've been around since mid 2002, but I don't remember when the first APPG on ME was assembled. It's probably archived in the Stephen Ralph MEActionUK Yahoo Group emails.

    My ME agenda site has copies of Minutes that only go back as far as 2007.
     
    Last edited: Feb 28, 2020
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  20. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Well if you look at early minutes the attendees are like forward ME ones, not just mea & afme, about 10-15

    2006-7 minutes all list attendees similar to this
    PRESENT
    Dr Des Turner MP (Chair)
    Celia Barlow MP
    Simon Alcock (Office of Ed Miliband MP)
    Colin Barton (Chairman, Sussex and Kent ME/CFS Society)
    Paul Davis (RiME)
    Neil Devlin (North London ME Group)
    Ciaran Farrell (Person with ME)
    Douglas Fraser (Person with ME)
    Christine Harrison (BRAME)
    Tanya Harrison (BRAME)
    Aidan Hocking (Office of Ed Miliband MP)
    Doris Jones (25% Group)
    Dera Kow (Patient)
    Ruth Manning
    Di Newman (Peterborough ME and CFS Group and Cambs Neuro Alliance) Clive Page (Father of person with ME)
    Augustine Ryan (Person with ME)
    Dr Charles Shepherd (ME Association)
    Trish Taylor (Action for ME)
    Stephen Vaughn (Sussex and Kent ME/CFS Society)
    Heather Walker (Action for M.E.)
    Adrian Ward (NICE)
     
    Last edited: Feb 28, 2020

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