Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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chance for UK residents to influence NHS policy

Discussion in 'Action Alerts and Advocacy' started by wideawake, Dec 18, 2010.

  1. wideawake

    wideawake

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    It is not often that we get the chance to have a say in what happens in the NHS, but UK residents now have a wonderful opportunity to influence decisions in favour of ME in the Department of Health's Open Consultation on Choice.


    If you would like to take part in this consultation (which we are hoping will be seen as a MASS PROTEST by ME sufferers to the Department of Health), but are too ill to help us fill in the questionnaire over the next few days, then simply send an e-mail entitled MASS PROTEST to: choiceforme@hotmail.co.uk and we will send you the completed version once we have finished it , which you can glance over to make sure it reflects your opinion, and then forward to the Dept of Health (instructions will come in a separate e-mail at the same time). Please forward this e-mail to as many ME sufferers/carers as you can and post on any forums you belong to. If, on the other hand, you feel well enough to help, then read below:
    --------------------------------------------------------------------------------
    CONSULTATION

    The Department of Health "Liberating the NHS: Greater Choice and Control" are running an open consultation until the 14th January. This consultation is open to the general public, patients, GPs, PCTs, advocacy organisations and just about anyone!

    "We need to raise the quality of the patient experience so we will put patients at the heart of everything we do...giving people more choice and control...more say in making decisions about their care" In the Executive Summary, they talk about wanting patients to have far more influence and the NHS to be more responsive. They say that this would mean a cultural change in the NHS. Their vision is of informed, empowered patients making choices over the things that matter to them. "Choice encourages healthcare providers to tailor their services to what people want and to improve their quality and efficiency

    There are 54 questions in the consultation but participants need only answer the questions that they have a view on. It is intended that the results of this consultation will help to develop further proposals for implementing greater choice and control A summary of the response to this consultation will be made available before or alongside any further actionand will be placed on the Consultations website

    Both the executive summary and the online consultation or downloadable version can be found on www.dh.gov.uk/en/Consultations/Liveconsultations/DH_119651


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

    We need to respond en masse as ME patients who currently have NO CHOICE. As many ME patients are not well enough to fill in the questionnaire we have taken it upon ourselves to write a response to 15 of the questions, after consulting with many ME patients . Once it is finalised, people can forward to the Department of Health with one click (or of course, they can also use it as a starting point for their own personalised response). Please take a look by requesting to see what we have done so far in an e-mail to choiceforme@hotmail.co.uk giving your e-mail the title WORD DOCUMENT. Remember that we are trying to address issues in the current system and in the White Paper that have allowed and will continue to allow the ME situation to occur, so we should be talking about the system and merely giving examples from the ME world. Try and resist the temptation to talk about the injustices in ME treatment and concentrate on changing the system.

    Feedback to: choiceforme@hotmail.co.uk or leave your comments on facebook (Choice for ME) http://www.facebook.com/#!/pages/Choice-for-ME/168619626492012 We would like to have an e-mail ready to forward to thousands of patients by Wednesday 22nd Dec, so please give your feedback before Tuesday 21st. Thank-you. We will give you instructions later as to the format for sending the e-mail once it is drawn up.
     
  2. Sasha

    Sasha Fine, thank you

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    Interesting! Thanks for posting.

    Worth reiterating that the deadline for comments on the draft is this Tuesday 21st Dec! But that the deadline for responding to the NHS consultation is 14th Jan (as I see from the Facebook link).

    Looking forward to hearing more about this.
     
  3. Esther12

    Esther12 Senior Member

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    Are we meant to fill out every section?

    I've signed up. I'll see how this goes. Thanks for pointing it out.
     
  4. wideawake

    wideawake

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    No, you can answer as few questions as you like. In our draft, I think we have chosen 14 questions. PM me with your e-mail address (maybe you already have) and I will e-mail you what we have done so far. Or e-mail choiceforme@hotmail.co.uk . Please involve as many people as possible. I want this to be HUGE!
    We have given the date of Tuesday 21st as cut off for comments because we want to give ourselves plenty of time to get the final e-mail out to as many people as possible before the government deadline on 14th January
     
  5. Sasha

    Sasha Fine, thank you

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    I got the email and it says the deadline for feedback on the draft is today (Sunday 19th) rather than Tuesday 21st with a view to sending it to patients on Mon 20th - would be good to have this consistent if possible to encourage people to comment. :Retro smile:
     
  6. wideawake

    wideawake

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    Hi, yes, sorry, sent a couple of e-mails out with today as the deadline instead of Tuesday. Just confirming that it is Tuesday. Would like to spend Wednesday fitting feedback into the final version. However, if anyone comes up with something really good after that date, I will still try and fit it in!
     
  7. wideawake

    wideawake

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    Just 10 days to go! The consulation ends on 14th Jan, so please e-mail me on choiceforme@hotmail.co.uk to get your copy of the completed questionnaire to forward to the Dept of Health.


    > SUMMARY
    >
    > This is what the Dept of Health says the Consultation is about:
    >
    >
    > "We need to raise the quality of the patient experience so we will put
    >
    > patients at the heart of everything we do...giving people more choice
    >
    > and control...more say in making decisions about their care" In the
    >
    > Executive Summary, they talk about wanting patients to have far
    >
    > more influence and the NHS to be more responsive. They say that
    >
    > this would mean a cultural change in the NHS. Their vision is of
    >
    > “informed, empowered patients making choices over the things that
    >
    > matter to them”. "Choice encourages healthcare providers to tailor
    >
    > their services to what people want and to improve their quality and
    >
    > efficiency”

    OUR RESPONSE
    >
    > As we know most ME patients are too ill to respond to this wonderful
    >
    > opportunity, we have put together a document which we think will
    >
    > reflect most people’s opinion. Our aim is threefold:
    >
    >
    > 1) to make sensible suggestions that they can include in their
    >
    > changes to the system which would make a huge difference to us.
    >
    > 2) to make them aware of the extent of the discrimination against
    >
    > ME and to document as many examples of this as possible . Our
    >
    > hope is that this document will be passed on as it will now be part
    >
    > of an official DoH document summarising the public response.
    >
    > 3) to make them realise that the ME community is in rebellion
    >
    > mode as never before (this is the bit where we need massive
    >
    > participation)

    >
    > We have covered the following:
    >
    > suggestions for a more democratic process with a patient veto
    >
    > for the setting up of the Care Quality Commission ( i.e Wessely
    >
    > out!)
    >
    > correct diagnostic guidelines ending misdiagnosis
    >
    > proper testing and treatment (inc comorbid infections)
    >
    > equality with other neuroimmune diseases
    >
    > more weight to patient surveys

    > CBT/GET /LP - say no more!!
    >
    > Transparency>
     

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