Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Advocacy in the UK

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Aug 29, 2016.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    The inspiration for this thread was a number of comments about advocacy made on this thread here (click here to view) where the poor treatment, and subsequent death, of a PR member is described. So this thread is here to discuss actions that can be taken to improve the situation in the UK specifically.
     
    Jennifer J, Mel9, Countrygirl and 3 others like this.
  2. slysaint

    slysaint Senior Member

    Messages:
    2,009
    Likes:
    10,427
    W. Sussex UK
    You could try emailing Nicola Blackwood MP (Minister for Public Health & Innovation)

    I did a while ago before all this and did at least get an aknowledgement of my email:

    Louis McMahon

    Parliamentary Assistant ■ Office of Nicola Blackwood MP ■ Oxford West and Abingdon

    House of Commons, London, SW1A 0AA

    nicola.blackwood.mp@parliament.uk

    Westminster Office: 0207 219 7126

    www.nicolablackwood.com
     
    AndyPR and sarah darwins like this.
  3. JaimeS

    JaimeS Senior Member

    Messages:
    3,112
    Likes:
    11,238
    Mid-Ohio Valley, United States
    After just a few months in advocacy, I actually could write you a whole essay as to why we don't mobilize as we ought. It would be insightful and incisive. Then I would get pelted with rotten tomatoes.

    For the record, I am ready to do a hunger strike, chain myself to the HHS or do a lie-in. I don't think anybody would understand me, because I refuse to yell. It's too tiring. I would not fit the 'typical' serious protester mold. But I would sit there forever like a Buddha on the hill, and hold a sign.

    @L.A. Cooper @actup

    Any thoughts?
     
    MeSci, ScottTriGuy, justy and 5 others like this.
  4. Alison2

    Alison2

    Messages:
    28
    Likes:
    157
    uk
    I know of several people with ME who wrote to jeremy corbyn (LP leader) about 6 mths ago and received supportive responses.also dianne abbot ( shadow health seceretary) may be more open , supportive?
    But any thoughts / action about this mebbe will have to wait til the end of sept
     
    justy likes this.
  5. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    779
    Likes:
    4,587
    Could you write it anonymously when everyone's forgotten you posted this? It would be fascinating to read and I think the community (any community) needs to know where it is going wrong so it can get it right.
     
    Countrygirl, helen1 and JaimeS like this.
  6. AndyPR

    AndyPR Cookies for Tired Sam

    Personally, I like the idea of a campaign of contacting MPs, either by email, letter or phone for those up to it. And if we can link this to MillionsMissing in September then even better, either just before, which may be the best option, or just after. The very recent contact campaign by MEAction USA was the inspiration for this thought.

    And following on from that thought, in the cities that are holding Millions Missing demos, perhaps we can contact local councillors or similar people, see if they could be convinced to attend.

    I'm afraid I can't promise anything but I'll have a think on a draft MP letter and see if I can come up with something - if somebody has inspiration for it before me, please step forward. :)
     
    Alison2 and JaimeS like this.
  7. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    The problem with advocacy for ME is that it doesn't fit into the usual strictures of health or disability advocacy. Usually, the question you'd ask is fairly straightforward - do you care or not? Patients are understood to be credible witnesses to their treatment. We are not seen as credible witnesses to our treatment; we can be complacently dismissed with the notion that we don't know what's good for us. This has proven so successful in the UK that it has been exported wholesale to disability in general, with more mixed results but effectively enough that widespread consent has been created for the barbaric system of disability assessments currently in place.

    Given this credibility gap, we can be safely ignored as at best inexpert and at worst our own worst enemies ("why are you attacking the people trying to help you?" etc). So, in their powerlessness and frustration, people scream on the internet and get no response. So they scream on the internet directly at the people they hold responsible for their ill-treatment, which is then used against them and neatly plays in the 'dangerous mental patient who can't be trusted to know what's good for them" meme. At which point they give up, despair, turn into conspiracy theorists, etc. It's a classic catch 22: If we shout, we reinforce all the negative stereotypes about us, if we say nothing then the powers that be carry on steamrollering over us.

    As such...
    …this might not be a bad idea. The genius of the Millions Missing protests (which I think could be the start of something really great) is that they lay out the reality of the situation in a way that avoids the angry fist waving that has served us so poorly, but shows the seriousness of the illness for all to see.

    The other effective option I think is hitching a ride on the credibility of others. I'd say that the voice of Jonathan Edwards is worth a thousand of ours, but a thousand times nothing is still nothing. We should always but always but always promote our links with esteemed scientists when we can. The IOM report is another useful tool. I want the PACE authors to see articles about ME by respected scientists and feel that tug of dread in the pit of their stomachs that we feel when we see something by them.

    These are, of course, limited options and will remain so until enough solid science is available that the credibility problem can be challenged. And it'll be up to someone else to do it given that I can barely look after myself, let alone go swanning about organising protests. :) Just my twopennorth.
     
  8. JaimeS

    JaimeS Senior Member

    Messages:
    3,112
    Likes:
    11,238
    Mid-Ohio Valley, United States
    I would love to see roll-out futons or yoga mats and have ME protesters show up and lie down, with their arms crossed over their chests.

    At specific moments, I would like people to lay out another futon, lie down on it silently, saying nothing. Perhaps when they can no longer stand. Entire protest silent. When people's energy gives out, they collapse: as they ought.

    a huge sign in the background.

    CAN YOU SEE US NOW?

    Pamphlets for people to take. No one says a word.

    [Edit: maybe those who can still stand hand out the pamphlets. They should carry their futons under their arms. Imply it's them, next.

    Maybe offer to futon to a passer-by. Implying they're next. That this disease can happen to anyone.]

    -J
     
    Last edited: Aug 29, 2016
  9. JaimeS

    JaimeS Senior Member

    Messages:
    3,112
    Likes:
    11,238
    Mid-Ohio Valley, United States
    Realistically, one of those standing should walk up and drag a sheet over someone who has agreed previously. While we will not all die of ME, recent news in our community shows that it happens. When it does, a sign should be added that stands up, as in a presentation:

    SHE (or HE) DIDN'T DIE OF ME. SHE DIED OF CANCER. The card should be printed and look official, but the 'cancer' should be hastily scrawled in.

    HE DIDN'T DIE OF ME. HE DIED OF AN ANEURISM.

    SHE DIDN'T DIE OF ME. SHE DIED OF PNEUMONIA.

    A way that the lack of seriousness with which this disease is treated obscures actual COD.

    -J
     
  10. Jennifer J

    Jennifer J Senior Member

    Messages:
    778
    Likes:
    3,942
    Southern California
    I don't know much about her, was wondering can the Countess of Mar be of any assistance in any way?
     
  11. mfairma

    mfairma Senior Member

    Messages:
    201
    Likes:
    1,035
    The questions were really more rhetorical. I know the reasons we aren't more aggressive, I just think many of these reasons are underwhelming or, in some cases, somewhat self-serving. When I raised the idea of a serious hunger strike in summer of 2012, the main responses were 1) worry that doing so would make us seem too aggressive and crazy; 2) the belief that HHS was already doing amazing work and we shouldn't rock the boat; 3) concern that a hunger strike would hurt patients; and 4) concern that we couldn't manage the logistics. The last is really the most reasonable, as far as I'm concerned.

    The alternative has been a whole lot of the same old stuff that hasn't worked in the past, such as petition after petition and a range of other ideas that often ignore systemic factors that limit our ability to advocate. Appealing to Congress is great, for example, but trying to do so without the public support that motivates decisive action or the organizational support to exert continuous pressure means you're going to be trying to swim upstream. Doing traditional demonstrations is great, but you need to do something different enough to compensate for the relatively few people that will be willing/able to participate, the inevitable difficulty in organizing repeat protests, and the relative lack of organizational capacity to support protest. A dozen people don't get noticed in DC. Protests have to be either be unique and epic enough to get people to notice or so serious that they stand out.

    Good advocacy, to me, means developing a really clear understanding of the sociopolitical landscape and trying to build up your ability to exert pressure, while being cognizant of how those factors limit your ability to do so. That kind of analysis may be difficult to swallow, as you pointed out, but the alternative is more of the same slow, plodding improvements around the margin in approach and success achieved.

    The best advocacy idea I've seen come out of the community in the last few years is the shoe protest. It lacks the urgency of the examples I gave, but it potentially has huge visual and symbolic power. To achieve its potential, though, you have to have enough shoes that the protest appears epic in scale. Doing that demonstration at HHS, a very large concrete plaza, meant needing a massive amount of shoes, quite possibly prohibitively so. Before even trying to organize the protest, in my opinion, the organizers should have figured the area of the plaza, calculated the density required, and figured the total number of shoes needed to be effective. If the number is too great, then don't do the protest or figure alternate protest sites or alternate means of securing the needed amount of shoes in advance, such as finding a few donors to commit to the purchase of a certain amount of shoes and people nearby willing to store such a huge quantity of shoes and well enough to manage the logistics. Perhaps in the future, the protest will evolve to the scale needed to be effective, but it really needed better organization from the beginning. The pictures that came out of it really undersold the scale of the problem, which was unfortunate, because its a good idea.

    Edit: The chili protest wasn't a bad idea either, but the shoe protest was better because its success isn't contingent on important people caring enough to eat hot peppers and regular people caring enough to share it.
     
    ScottTriGuy likes this.
  12. JaimeS

    JaimeS Senior Member

    Messages:
    3,112
    Likes:
    11,238
    Mid-Ohio Valley, United States
    I agree with some of that and disagree with other aspects. However, tomatoes.
     
  13. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,656
    .
    Its important at protests to make it totally clear What We Want officals (medical/government etc) to DO. Tell them what we want them to do... ie suspend the NICE Guidelines ... suspend the MAGENTA Study ... whatever it is ... and then Why we want them to do that.

    Raising awareness and bringing attention to problems is important, but its most important to make a clear statement about what we want to be done about it .

    The British public and most doctors Do Not Know That ME can be Fatal ... so it needs to be Spelt Out that it is.

    Protests are not a place to make statements that are not immediately self explanatory .... WHO is being spoken to? A relatively small number of passersby? .... officials (ie DoH)? ... and/or Media. The messsage must be crystal clear, unambiguous and very immediate.


    Its the same when writing to MPs ... they may want to help, but if we don't spell it out what we want them to do, they can go off and do what They think is helpful, but is totally the wrong thing. We are the experts. We tell the officials what we want and need.
    .
    .
     
    Last edited: Aug 29, 2016
    ahimsa, Alison2, Bob and 1 other person like this.
  14. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,802
    Likes:
    9,200
    Toronto
    While the situation in the UK is grim we can be reminded that the UK is boundaryless when people do things online.
    I just suggested in another thread (for Canadian advocacy) that I might be able to manage a video with me sitting and raising cards that have my message one after the other. You could put a bunch of these together (although it would be good to coordinate many so that they all cover agreed upon points that you want the UK people/media/government to know and then post them to youtube/share them online attach them to a campaign maybe?
     
    Wildcat likes this.
  15. slysaint

    slysaint Senior Member

    Messages:
    2,009
    Likes:
    10,427
    W. Sussex UK
    This is what I wrote to the MP I mentioned before:
    "
    Why, in this country, are ME sufferers still being treated as though ME is a mental illness? The NHS have a total lack of understanding of the illness which affects approx 250,000 people in the UK (more than there are MS sufferers).

    NICE ignore all the medical evidence pointing to biological/physical causation.

    This is what the Americans are doing:

    https://www.nih.gov/research-traini...ih-requested-comments-me/cfs-research-efforts

    Meanwhile here the only research is done by psychs wasting precious research funding.

    If the NHS would stop using the term \'Chronic fatigue syndrome\', and use either the Canadian Consensus criteria(CCC) or the International Consensus Criteria (ICC) for diagnosis/treatment it would be a big step forward."
     
    MeSci, Countrygirl and Wildcat like this.
  16. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,415
    Likes:
    10,004
    Cornwall, UK
    I totally agree with that. I think sometimes people, including the media, get the impression that sufferers are just opposed to things. A coherent message about what we need to happen is the way to go.

    For me, off the top of my head, it would be something like 'It's time to take up the challenge of solving this disease, and we must start by taking account of all the evidence rather than cherry-picking to suit one theoretically-founded group's preconceived ideas.'

    I suppose you could sum it up as 'Stop ignoring inconvenient truths', but I guess that's been done.

    That was a strong line, slysaint, especially with the reference to the US.

    I do think that for the UK particularly we should focus on how far we're falling behind the cutting edge of research in this area, especially when addressing politicians (who are wedded to the idea of the UK as a sophisticated leader in such things).

    We should be emphasising that the UK is dogmatically pursuing an approach that is being abandoned in the USA, where exciting, groundbreaking research is coming thick and fast. It's a national embarrassment.
     
    MeSci, MEMum, Hutan and 2 others like this.
  17. slysaint

    slysaint Senior Member

    Messages:
    2,009
    Likes:
    10,427
    W. Sussex UK
    Basically what I said without the frills.
     
    sarah darwins and Wildcat like this.
  18. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,415
    Likes:
    10,004
    Cornwall, UK
    I still can't distill it down to something that sounds good chanted at a demo, though!

    "What do we want? Take up the challenge of solving this disease. Start taking account of all the evidence rather than cherry-picking to suit one theoretically-founded group's preconceived ideas.

    When do we want it? Now!"

    Hm. Needs work.
     
    DoggerFisher, MEMum, Hutan and 2 others like this.
  19. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    Lessons from the Brexit campaign: heard Alan Johnson saying on the radio the other night, "we had the lyrics but they had all the best tunes - "Take back control", "£350 million a week", etc. The winners alway have the best tunes, even if they don't mean anything.
     
    Wildcat likes this.
  20. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,415
    Likes:
    10,004
    Cornwall, UK
    Yep. Wessely gets it, doesn't he. His "CBT/GET is the only game in town" is a great example of a good tune.

    Elsewhere I mentioned Colbert's concept of truthiness ("something not based on fact but sounding like it could be"). We know around here that CBT/GET a) isn't the only game in town, and b) might not be in town at all, but most people hearing that line from a knighted professor are going to assume it's a simple fact, 'cos it sounds like it might be.

    I don't know. Do we have to descend to the same level to get anywhere? Do we have to start sloganising like crazy? Maybe.

    - CBT/GET is a busted flush

    - Patients matter more than someone's pet theory

    - Stop playing games with our lives

    I sort of hate that stuff, but maybe it's what we have to do.
     

See more popular forum discussions.

Share This Page