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Opted out of Cervical Smear Testing in ^2006 and yet STILL being harrassed by NHS!!!

Discussion in 'General ME/CFS Discussion' started by golden, May 24, 2014.

  1. golden

    golden Senior Member

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    The NHS comedy continues.

    Tests I dont need or want, for eg. Vaccinations, smear tests, the NHS bombards me with letters, leaflets and even now a personalised letter from my G.P. (to cover themselves - not at all because they care about me).

    I opted out and signed a form in 2006ish. It is still in my notes.

    And yet they have continually pursued me to have this test.

    Tests I do need:

    Full Thyroid Panel
    Full Hormone Panel
    Coeliac Disease
    POTS test
    Heart issue tests
    Adrenal Tests

    And so on...!!!!

    The letter i got today from my G.P. States their collegues who orgsnise the recall have advised them i have not responded to their routine recall letters.

    'Enclosed is a leaflet which explains the programme in full.'

    HA! The leaflet is patronising propaganda. And contains no real information.

    The letter states after making an informed decision (not possible from that leaflet)

    If i wish to postpone recall they advise no longer than 5 yrs.

    They want me to sign the form which excuses them of any responsibility!!!

    The useful bit of the letter though states its possible to be removed entirely from the programme.

    Whilst i was mis led to believe the initial OPT OUT form i signed in 2006 was doing just that, i obviously need to be removed from the programme.


    This is MY choice and i recommend everyone else does exactly what their Doctors tell them.

    I have searched for similar people and found this story:

    http://m.huffpost.com/uk/entry/4959164/

    Although the NHS leaflet does now contsin a little bit of the information she said the leaflet did not contain at time of her writing.

    Where is the concern from my Doctors? They know i m stuck for transport, they know
    i missed an MRI scan becsuse of it - they know i requested the above tests i do want and they know i opted out of this!!!

    No, how am I? How is the M.E.

    Am i even well enough to attend for a smear!!!

    So fed up with them. The only reason is to cover themselves. The ONLY reason.

    Golden.
    i
    signed in 2006 was doing just that
     
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  2. peggy-sue

    peggy-sue

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    I get utterly fed up with these things too. They want me to attend "well woman" clinics, they want me to have flu jabs, they want me to take statins...

    It's just a "duly performed", "box-ticking exercise" they get paid for.
     
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  3. peggy-sue

    peggy-sue

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    They can't even be a*sed giving me a diagnosis. I've been sick for over 10 years.
     
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  4. golden

    golden Senior Member

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    Hearing from them has wound me up- no question lol


    Thats why i opted out in 2006.

    My one and only smear test was late teens or early twenties - so about 18-20 yrs ago. It was an insult to my body.

    When the Doctor told me to go away and deal with the M.E. I did - and so didnt have to receive the smear letters.

    I re registered in 2006 due to a breast lump.

    I refused having a needle stuck in it - and so was given a gentle ultra sound. It was a simple cyst.

    I refused having it drained, I didnt want to anger it :) and it went a few months later never to return.

    Can you believe they actually have me booked in for a vaccination when i turn 60!!!! That annoid me too. I will Cancel that appointment too as i am busy that day :)
     
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  5. golden

    golden Senior Member

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    :( Thats terrible...
     
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  6. golden

    golden Senior Member

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    Have they given you all the blood tests you could possibly get?
     
  7. peggy-sue

    peggy-sue

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    I've had minimal investigations. There are several I have asked for and been refused. They wouldn't even do an ECG when I was fainting everywhere.
    I did ask for a haematocrit. They did a haemoglobin. My gp had the cheek to try to tell me; "they are the same thing".

    I did not have the presence of mind to ask him if he would say the same thing to somebody with sickle-cell anaemia.

    (They are not. I've even performed both tests in labs myself.)

    I'm supposed to be going into hospital for an general anaesthetic for an investigation. No cutting or bleeding involved, just a camera shoved into my bladder.

    They can't get the info. they need to give me straight, they've adressed me as being a MRS, which I am not, they're ignoring or have lost the Grace Charity for ME leaflet I gave them, they want me to stop loads of my supplements... because they will cause bleeding problems.

    Theu do not understand that if I do stop them, they will have to get me there in a wheelchair, I won't be able to walk.
    My health and general functioning will go downhill rapidly - I know, becuase I get really bad when I have stopped them in the past.

    I have even been told to stop using my electronic vapouriser for a fortnight beforehand, "because it will cause bleeding problems".
    That is a downright LIE. 12 hours would be overkill and have it all out my system, even if it did cause problems, which it doesn't.

    However, according to another leaflet, having stopped my electronic pure stuff (and taken up cigarettes again, which is what would happen) I only need to stop them for 24 hours.

    The (morbidly obese) nurse who was doing my pre-op screening was also really peculiar. When I told her I have ME, she went out of the room without a word, and got another nurse to come and sit in with us.

    She rabbited on at great speed, reading out instructions, with no expression or pauses to indicate meaning or punctuation, I didn't understand or follow any of it.

    She asked tons of questions, but I don't know what she wrote down as being my replies. We fell out when she asked me "how much exercise do you need to do, to get out of breath",

    I had to tell her I can't answer that, because my body won't do any form of aerobic exercise, my blood pressure drops, my heart rate goes up and I get air hunger. She didn't believe me.

    I asked 4 times for her to slow down because I was having trouble understanding. She refused, saying;"We are under time constraints.".
    So I still don't know how we suddenly got from the car-park to 6.30 in the morning.:cautious:

    If they think I'm going in to hospital to let these sorts of ignorant fools loose on me, they have another think coming.

    I've lost half a stone with the worry.:(
     
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  8. golden

    golden Senior Member

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    Oh @peggysue :( You need a triple dose of TLC plus some competent, civil medics around you.

    There really isnt the words.

    Could you try a different hospital under the choose and book system...?

    Or go private?

    Its all so very difficult isnt it.

    I admit I have all the same concerns about the sheer ignorance of CFS/ME/ME/ in the NHS and this should be addressed immediately .
     
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  9. peggy-sue

    peggy-sue

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    There really isn't another hospital. I'm in Dundee, Scotland. There is Ninewells.
    I've never heard of a choose and book system!

    Michael does have me on his BUPA thing with work, that would be Fernbrae. Recently in the news for being dirty.
    And BUPA don't do ME stuff anyway. (They must have seen Phil Parker for a bit of LP!)

    Thank-you for the TLC! :love:
    Sorry for the long moan.:redface:

    Another silly thing the fat nurse was on about - having told me I need to stop all my supplements and vapouriser for a fortnight - she asked me if I could come in at 24 hours notice if there was a cancellation.:alien:

    (And apologies for going on about her weight. I was not being fattist in general but about her specifically. A nurse giving out health advice ought to be able to follow some of it herself. I've lost 3 stones while being sick and unable to be active. I just did not need to loose the extra half stone I just did - I'm too thin now.)
     
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  10. peggy-sue

    peggy-sue

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    But getting back to your original point,

    Yes, it is horribly frustrating and infuriating that you keep on getting more and more stuff, on general check-ups for well folk (that earn the practise money because they can then tick their duly performed boxes)

    When we're really so sick we can't get to or through the appointments... and they just don't give a toss.
    :bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
     
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  11. maryb

    maryb iherb code TAK122

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    @peggy-sue
    if Michael has you on bupa you can choose your hospital. Any decent consultant will respect your illness, having ME won't make a difference to the operation. You'll get your own room, 48hrs is enough I would say to stop supplements for. The anaesthetist will discuss drugs with you or you can ask to speak to him after your consultation. I wouldn't hesitate to use the private sector.
     
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  12. minkeygirl

    minkeygirl But I Look So Good.

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    here they say to have a PAP I think every 2 years until your 65. I had my last one in 2011? Maybe earlier. I'm 62 now. I told my doc i wasn't doing it so she hasn't bugged me about it. I do get a mammogram every years because my mom died of breast cancer. They are free her with insurance but they don't hound you like the NHS does.
     
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  13. golden

    golden Senior Member

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    Sometimes these things just need to flow out when they do! :) No problem at all.

    http://www.chooseandbook.nhs.uk/patients/choosing-your/copy_of_index_html


    Edinburgh sprung to mind - Is that a good hospital? I suspect hospitals in the richer parts of the country are better too -

    Is there a better BUPA? Dirt is a major concern in a hospital. Has the BUPA hospital cleaned up its wards currently?

    Plus, is there a better way?

    Is there a more expensive NHS procedure for example that is less invasive but will deliver the info needed (no need to answer - just putting the Q to you :) )

    Its not on at all that Nurse consultation. And sadly not uncommon.
     
    Last edited: May 24, 2014
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  14. golden

    golden Senior Member

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  15. golden

    golden Senior Member

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    Sorry about your Mum Minkey girl.
     
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  16. minkeygirl

    minkeygirl But I Look So Good.

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    @golden Thanks. It was over 30 years ago so I'm past it.
     
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  17. peggy-sue

    peggy-sue

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    It's the whole business of giving somebody with ME a general for just a camera in the bladder.
    It seems complete overkill to me.

    They did try to get a flexible camera in me, without an anaesthetic and without any sedation, but couldn't.

    I would be willing to let them try under medical hypnotherapy. Or even just a big dose of valium.

    But I haven't even got to the point of being able to speak to the anaesthetist.
    I just got a letter from her, telling me she's spoken to the senior pharmacist and giving me the list of things I've to stop and that on the understanding I will, they will go ahead.
    That's the one that says the use of the vapouriser will cause bleeding problems if I don't desist for a fortnight and is addressed to MRS.
    I do not like being LIED to, particularly for the sake of pushing certian political agendas and to blatantly lie about the science is unforgivable.

    I did speak to a different nurse on the phone, she told me to ignore my appointment, so I did. I'm not sure what's happening now. Muzzy has puked on the letter.:cat::angel:

    Not keen on any Edinburgh hospitals, I have to say, not after the nightmare the Western put me and my Dad through when he was dying.
    After that, I resolved to carry a letter on myself on all my visits to the city, stating;

    "If I'm found dying on the street and the Western is where you might think of taking me, leave me here on the street, thank-you very much."

    I'm still contemplating putting in an official complaint about the nurse who did not seem to think it important that I understood what was happening at the pre-op assessment or undestand all the information and instructions she was suppsed to be giving me.

    I don't really trust private medicine, never have, because I grew up with my Dad (and mother) being part of the "new NHS dream" in the '50s - '60s.
    He was a pioneer in preventative dentistry, believed completely in top quality care for everybody.
    .
    The NHS dream was part and parcel of the atmosphere at home - good health care is a basic human right.:(
     
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  18. maryb

    maryb iherb code TAK122

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    @peggy-sue
    honestly 've had the very best of treatment in the private sector, you'd be surprised nay amazed at the difference. Do try it if you need this op, my consultant did a heavy sedation for a colonoscopy, so I was lightly asleep but not a full general anas, not sure if this would work for you though.
     
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  19. peggy-sue

    peggy-sue

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    I personally suspect they're just smarmier to your face, have chocolate biscuits instead of plain, and a few exra frills on the bedcovers. :cautious:

    I don't think they're any better at medicine, they do not have the facilities the big hospitals do, so when things go wrong, you end up in Ninewells anyway.:bang-head:

    I don't approve of private medicine. And I don't trust a doctor that chooses to go private - it's greed, which disgusts me.

    ....moan, moan, grump, mump - nothing will do. :rolleyes::rolleyes::rolleyes:
     
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  20. golden

    golden Senior Member

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    You are right not to jump straight onto the NHS conveyor belt though as M.E. Requires specialist knowledge and care.

    If you are stuck in hospital with Doctors n Nurses being clueless - this is very serious in deed.

    I was thinking:

    Second opinion?

    Then I wondered well what would an M.E. Doctor recommend...

    Again, to find that out a private one woild need to be sought :(

    But i did find Dr. E. Dowsett on Anaesthetic - print out sheets for anaesthetist etc. Looks super helpful

    http://m.hfme.org/site/mobile?dm_pa...64caff6fb1c49aadc35de9&fb_sig_network=fw#3233

    Cats always know just the right thing to do lol :)
     
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