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UK only - tell NHS England what to discuss/do at their AGM

Discussion in 'Action Alerts and Advocacy' started by MeSci, Sep 11, 2014.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Short notice, I'm afraid - only just seen it. A week's notice from today (11th September) thus 18th September (meeting starting at 1730 according to the NHS England website):

    In one week's time, NHS England - who run our NHS - are holding their biggest decision-making meeting of the year. The meeting’s open to anyone, so this is our chance to be heard by the people making huge changes to our NHS.

    But what’s the message we should be sending the people in charge of our NHS? Can you take this two minute survey to help decide? Click here to get started.

    NB I believe that it is now NHS England who instruct NICE, so something about their ME/CFS Guidelines seems like a good idea.
     
    golden, Valentijn and Esther12 like this.
  2. Keela Too

    Keela Too Sally Burch

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    Certainly taking ME/CFS off the static list would be a good request. I understand even though NICE guidelines are recognised as inadequate that they will still not be reviewed for 5 years as ME is on the static list!!

    Got to get off computer now, but will look back at this later. Thanks.
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Thinking again - it's NHS ENGLAND so maybe only for people in England and not other parts of the UK. (I tend to think of 'Britain' rather than England so find it quite strange talking about England, but then that may be all that's left of the not-so-United Kingdom soon!)
     
  4. golden

    golden Senior Member

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    Problem I have with this is its a con that the NHS is short of money and this is what it seems to be about - more funding.

    The NHS expenditure has been a farce. The NHS has had too much money for too long.

    Doctors are overpaid. Too many self important paper managers.

    Drugs have been dished out wrecklessly, plastic surgery, lifestyle abortions , abusive drunks fill up A&E at weekends, and all manner of questionable procedures have been paid for by the taxpayer. Not to forget of course psychiatry and CBT for M.E.

    Slowly its created a nation of unhealthy dependence by patients who forget how to take responsibility for their own health. And yet I have always taken responsibility, I need some help - And there is NONE!

    Its not what I want.

    If a child breaks their leg - its fantastic that they can get free treatment. This was what the NHS was for in my view. Not the monstrosity it is today.

    ^^^ that came from filling out the questionnaire :)
     
    Last edited: Sep 11, 2014
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I agree with a lot of that.
     
  6. shahida

    shahida Senior Member

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    'lifestyle abortions.'.. etc Probably best not to get your facts from the Daily Mail....
    there are a lot of problems out there and we perhaps shouldn't be so quick to jump to conclusions about how 'rife' certain things are - and yet not want to be judged so harshly ourselves. It's a lesson I've learnt on this journey.
    And who knows what the future effects of this stealth privitisation will be-probably profits before the (poorer) sick patients.
     
    Last edited: Sep 11, 2014
    MeSci likes this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Yes, I didn't want to start any discussion on this or other controversial topics, but yes, life is complex.

    There are very few women who will treat abortion as a casual option. And it could cost the NHS more to fix the damage done by back-street abortion than to provide them safely.

    Plastic surgery can be to correct a disfigurement - I had some myself at an early age due to a facial disfigurement that probably arose as a result of chicken pox and was a sign that the infection had got into my nervous system - a reason I suspect the zoster virus of being involved in my ME.

    But I agree with @golden's points about waste, over-dependence on drugs, etc.
     
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  8. golden

    golden Senior Member

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    I dont think the NHS should be paying for lifestlye abortions.

    I used the term ' lifestyle' to mean those who are aborting because its a girl (Gender Abortion on the NHS - http://www.express.co.uk/news/uk/48...ervice-Rape-Gender-Baby-Termination-Pregnancy), because of their career, because of other trivial reasons and so on. http://www.telegraph.co.uk/journali...3-women-have-had-at-least-nine-abortions.html

    If people want this, they should be personally paying for it in my view. I dont want to be paying for it. It is just one of the ways money is being wasted out of funds.
     
    Last edited: Sep 12, 2014
  9. golden

    golden Senior Member

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    http://m.bbc.co.uk/news/business-27325363

    A high court judge ruled Northern Ireland NHS patients are not allowed to get a free abortion in NHS England.

    I did not know the system.operated this way.

    NHS England... changing NICE guidelines then? is it really possible?
     
  10. golden

    golden Senior Member

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    Plastic surgery such as breast enlargement, for career etc. i was thinking along the lines of:

    http://www.telegraph.co.uk/health/healthnews/9953786/Larger-breasts-on-NHS-for-would-be-model.html

    But I agree it does get complex.

    I wondered how much money has been wasted dealing anti-depressants to folk with CFS/ME too.
     
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    As stated in the article, this is in fact illegal in the UK. The NHS do not do it.

    Perhaps you should check out Ann Furedi. I believe there is a connection with the Science Media Centre via Living Marxism.
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Why would it not be? They were decided by people, and they are not set in stone. NICE Guidelines get reviewed. It's just that ours have been 'kicked into the long grass' and we need to get them back out of there and corrected, based on proper scientific evidence.
     
  13. golden

    golden Senior Member

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    I have not looked into it myself yet but the article suggests gender abortions are so rife they are showing up on the census.

    Its obvious to me that the NHS conducts gender abortions. But really, this is no worse than the other trivial reasons offered, is it? I am in my 20s, its the wrong time, I dont have enough money etc. I am not casting opinion on this subject, I am simply saying the collective NHS funding should be used for Life saving procedures first and foremost.

    I am exceptionally money efficient and it is a disgrace to watch the money being wasted. The same pattern has happened with Charities, the money hasnt gone where it was needed.

    Funding cuts? Then close the useless CBT for M.E. /CFS centres down and sack the staff implementing it.

    http://www.telegraph.co.uk/health/h...greed-to-illegal-abortions-of-baby-girls.html


    who-agreed-to-illegal-abortions-of-baby-girls.html[/url]
     
    Last edited: Sep 13, 2014
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It is not obvious to me. Your article does not say who funded the illegal gender abortions.

    You are casting opinion by calling reasons for abortion trivial. I can assure you that it is a horrible, frightening experience and cannot imagine any woman viewing it lightly.

    I do agree that saving lives should be be a priority, but that too can be complex - to give an expensive drug to prolong the life of a cancer patient by a few months? To keep someone alive who wants to die? To save the life of a premature baby whose prospects of life expectancy and quality appear very poor? Etc.

    Things like this are often decided by ethics committees, who take all the issues into account and come to good decisions, if the Radio 4 series Inside the Ethics Committee is reliable.
     
  15. golden

    golden Senior Member

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    I dont want take this thread off topic. Maybe it should be under a new thread called Lifestyle Abortions.

    This is commonly understood and known about. I cant see it acknowledged on the NHS website though. Todays attitude of abortion has changed and it is viewed more as routine.

    Ethics committees are great but it is not ethical to use group money for things like this. And the lax rules means that women are actually being pressurised into abortions. Since babies survive at 23 weeks too, it is questionable the 6 month law. In my view 3-4 months is ample time to decide.

    This article is of a lady forced into two gender abortions, one with the NHS and one privately

    She feels that gender ought not be disclosed until the legal abortion limit has passed.

    It talks of the 'lost girls' between a conservative approx 1500 to 4,500 and the difficulties in attaining accurate statistics.

    http://www.independent.co.uk/life-s...d-into-genderselective-abortions-9193623.html
     
    Last edited: Sep 13, 2014
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    By all means start a thread on 'lifestyle abortions'. It was you who introduced the topic to this thread. This thread is about what to tell NHS England, so if people want to raise such subjects they can do it under 'other'. My own submission focused on changing the NICE Guideline on ME.

    I see that the NHS did not know that the abortion was wanted for gender reasons in the case you link to. I think it unlikely that a substantial proportion of abortions for gender reasons are done on the NHS, and hopefully none knowingly, except in cases of serious sex-specific illnesses in a foetus.

    Putting aside the moral issues (and I doubt whether anyone here supports abortion purely on the grounds of gender), this issue is probably vanishingly small in NHS budget terms.

    As for 3-4 months being 'ample time to decide', you overlook the fact that a girl or woman is often unaware of pregnancy until relatively late, and cases are known when the person is unaware until they go into labour! This happened to a colleague of mine.

    Furthermore, doctors can fail to suspect pregnancy when a patient consults them with symptoms that in retrospect could clearly be due to pregnancy. The woman may visit doctors 5 times before it is suspected, by which time it is too advanced for termination to be straightforward (and by 'straighforward' I mean little different from the spontaneous, natural early abortions that go completely unnoticed by the woman and which happen all the time).
     
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  17. golden

    golden Senior Member

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    I didnt bring the topic of Lifestyle Abortions up specifically.

    The 38degree campaign seemed to be focused upon getting more money to the NHS.

    And so I was making a general point about this and what money is being spent on.

    Here are further ideas:

    http://www.nhsjusticegroup.co.uk/vernon_coleman.html

    It seems like an M.E. Charity, advocates ought to be taking this up? A petition?

    http://www.england.nhs.uk/about/board-meetings/agm/faqs/
     
    Last edited: Sep 13, 2014
  18. golden

    golden Senior Member

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    Also:

    " Can I contribute to the AGM?


    Yes there will be opportunities to ask questions within the format of the AGM.

    For those that can’t be there in person, there is the chance to contribute using Twitter by using the hashtag #NHSAGM on the day of the AGM. We may not be able to directly respond to all comments, but they will be recorded as part of the event.

    Will there be a webcast of the AGM for those that can’t attend in person?

    Yes the AGM will be live-streamed
    on the NHS England website."
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    ?

    From your first message:

    [/quote]
     
  20. golden

    golden Senior Member

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    [/quote]


    Yes, thats correct. I didnt bring up lifestyle abortions *specifically* for in depth, individual debate...

    I am not going to ask 38 degrees to address specifically this issue.

    I added lifestyle to the word abortion to seperate it from a *serious Medical need * for an abortion either physical, mental or both.

    This community funding should probably be reserved for Emergency abortions only:

    http://www.angusreidglobal.com/poll...hould-only-fund-abortions-in-emergency-cases/

    I am happy to debate the specifics in depth but it seemed off topic. And whilst I mostly dont mind my own threads going off topic I noted some members are keen to be very on topic. :)
     
    Last edited: Sep 13, 2014

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