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  • Only of interest if you go to SGH

    If you've attended the SGH sleep clinic and/or done a sleep test there, you'll know what I am on about. I just need to vent, see if I can get rid of this anger.

    I wrote the never-been-seen Dr Jane Wilkinson because, after four years under her 'care' as Consultant, I am using an APAP as a CPAP at 20cmH2O, no relief except ramp, and I'm still tired during the day - maybe not tired per se, but lacking energy. She wrote back asking me to attend a sleep study - same one she uses for diagnosis of OSA - make a movie, record sound, pulse-oximetry. Not impressed but you have to go along with them.

    Denise checked me in last night, brought me a cup of tea and then lights out so she could go home at 10pm. We discussed the bed, of course, marrower than ward beds, apparently, so it fits through the doorway. Foam matress. Clanked, groaned and creaked even before I climbed aboard. Clingy, thin blankets that you might find in a charity shop or a refugee camp. Naturally, the bed was too short for me. Required to wear PJs, maybe to spare someone's blushes but certainly to get tangled with the cheap bedding.

    Then comes the lighting. A window high on the wall lets light in from an adjacent room - "so you can find your way to the toilet". Doesn't seem too bright immediately after the room lights are switched off, but give it a few minutes for your eyes to adjust and it seems like one third of daylight.

    Give it an hour and it can pry its way under your eyelids. Give it two and it's like staring into headlights. Turn over? Get tangled in the bedding. Turn back? Get even more tangled. And all the while, the light burns relentlessly down and my blood pressure rises. I shouted expletives and made rude gestures at the camera, but to no avail - sleep retreated ever further away.

    I gave up at 1am and came home, cursing all the way, cursing as I set up my APAP/CPAP and all the wiring under the bed. Lights out at 2am and I remember nothing till 8am today.

    Here are some clues, SGH and Jane Wilkinson - the patient must be asleep for you to study their sleep. Patients will fall asleep and sleep longer/better/deeper in an environment that is condusive to sleep - a comforatable bed, a duvet, a bed-side lamp, DARKNESS.

    There is nothing that I couldn't have told Jane Wilkinson that last night's sleep study would have revealed (had I slept at all) - I could even show her pulse-oximetry graphs and reports. But for one thing: assuming she actually exists (I am in the camp that says she doesn't) she doesn't talk to her patients. She doesn't need to know anything about us, our life styles, problems we may be experiencing with our treatment. She's the Consultant and knows best, after all - she knows exactly how to head up a most shambolic, ineffective, time and money wasting clinic that leaves patients frustrated and poorly served.

    I'll leave it till Sunday to write Wilkinson and the hospital CEO so I'm calm and more likely to create a co-operative atmosphere. We are at their mercy, after all. I just gotta investigate transferring to a different hospital, though.

    Southampton General Hospital Sleep Clinic sucks big time, in my opinion and that of everyone to whom I have spoken.
    Respironics REMstar 'M' Series APAP.
    Resmed Mirage 'Quattro FX' Full Face Mask with a 'Quattro' headgear.

  • #2
    Hi TF,
    Sounds pretty much like the sleep study I had at the Sleep centre in East Grinstead.
    Like you I had wires, light from outside (a street light right outside the window) and a very busy main road just feet from the room.
    I live in a small villavel on a quiet road so in all it was a very wakeful night. I eventually fell asleep 15 mins before they came in to wake me up.

    BUT for one big difference, when I did go to see the doctor for the results I took my oximeter readings and he agreed they were more conclusive than a joke of a nights sleep at their offices.

    I hope you get somewhere with your complaint.
    I am waiting to hear what they make of my complaint at East Surrey hospital from when I was there a couple of weeks ago.
    Does it ever make any difference? I sure hope so!
    Lorraine x
    APAP: F & P Iconaax auto
    Masks: Resmed Swift FX, Sleep Weaver, Mirage Liberty and most other makes and models.

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    • #3
      'Annual' Review

      I just received an invite to my annual review: 20th December 2012!
      Last one was in April 2011; a new definition of 'annual'.
      I suppose it is one per calendar year!

      Mind you; apart from getting a new mask (took 2 visits, they had to order it in) it was all a waste of time anyway. I have never seen a consultant nor had a proper sleep study. My Embletta test was done at home after being shown how to put the kit on at the hospital.

      It looks as though NHS 'care' is retricted to issuing you with a machine and monitoring compliance for the DVLA.
      ResMed S9 Autoset with humidifier and ClimateLine
      ResMed Mirage Liberty and Quattro Air masks
      Sinupulse

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      • #4
        Doing the tests at home makes sense to me - that way they can study me in my natural habitat! and asleep!!!!!!

        Good clue there, Lorraine - take my own oximetry readout with me to the next meeting, assuming they'll still talk to me (after all my gestures at the camera and the letter I'll write tomorrow - I'm still angry but at least the cats are talking to me today). Problem with that is - the nurses won't have the vaguest idea what it means! How do you get to see the consultant in these outfits???

        How are your stitches, btw? You getting out yet?
        Last edited by Tigers Fan; 14th April 2012, 10:51.
        Respironics REMstar 'M' Series APAP.
        Resmed Mirage 'Quattro FX' Full Face Mask with a 'Quattro' headgear.

        Comment


        • #5
          Hi TF,
          Why not try phoning and asking for an appointment with the consultant? Say you don't mind waiting a bit longer but you think it may help as you have not actually seen one as yet since diagnosis. It might work. I get to see my consultant at the pain clinic if I make enough fuss but if I want a quick appointment I have to accept that I get whoever I am given.

          I am doing ok, stitches are disolvable so sadly I cannot remove them myself, I would have loved to do that
          I have to go back to work on Thursday next week and whilst I love my job I also like being able to spend hours in bed every day, wrapped up in my duvet with just my kindle for company and meals provided at the appropriate times.
          I have been spending loads of money though so going back to work will stop me going on ebay and other sites that all want my money in exchange for goods. I have spent a furtune on my new grandson but the personalised shawls and blankets etc are so sweet!
          Anyways, I hope you got the consultant sorted out, and glad to hear that the cat is your friend once again
          Take care
          Lorraine xx
          APAP: F & P Iconaax auto
          Masks: Resmed Swift FX, Sleep Weaver, Mirage Liberty and most other makes and models.

          Comment


          • #6
            You can't go writing to some imaginary consultant about some sleep test you have only dreamed about. I saw the reality of a sleep unit in that ITV crime documentary called 'Lewis' [http://www.imdb.com/title/tt0469870/], sleep units are sparkling clean and have individual soundproof rooms where the subject controls the lighting and air temperature. They are all like that surely!

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            • #7
              Yippee! - sort of, in a disappointed tone.

              Let's start with the good news! First - On an NHS journey of how many? steps, I have taken the first two. Second - She exists!! I have just had a consultation with Dr Jane Wilkinson (she answered 'Yes' when I asked her if she was. Why do Consultants never introduce themselves? I bet god would!). Pleasant woman, talks a lot and rapidly, can be interupted and then listens, doesn't want to know about AHI - she wants to know the symtoms, how one feels.

              A lightening review of the last four years I've been under her care and a discussion of what is going on right now. She understands that I will not subject myself to another of her sleep studies but she needs data so she can understand what is going on for me - no prizes so far! Needs to know my O2 saturation curve - so I told her what it is like. She doesn't know how much I move in my sleep- so I told her, like a log. How much do I snore? all the info she would have gained if I had completed the sleep study - I indicated very thin ice and she backed off. I don't snore or hardly at all. I know my stuff see. So we settled on pulse oximetry - a night at 20cm and a night at 15cm so she can see the differences. She'll write me when one is available but a meaningful glare persuaded her that just maybe one was available immediately - it was. I think I'll give her a night at 20 and half a night each of 15 CPAP and 15 to 20 APAP. So I told her what the results will be and then she said the magic word!!

              Polysomnography.

              If my test result predictions are correct, she will have to refer me for polysomnography, she said - seems that comes under 'Research' at SGH whereas she is 'Clinical' and stuck with her useless and infamous Sleep Lab.

              You can tell who my new best friend is, can't you? Elevatation from non-existence to NBF in a thirty-five minute consultation is good going, I reckon!

              You might even be having centrals, she said. Isn't she wonderful? Come along, dear - keep up! Keep up! Why do you think I have come to see you????

              My NBF said, "Polysomnography" to me. Strange, the things that turn on an elder man!
              Respironics REMstar 'M' Series APAP.
              Resmed Mirage 'Quattro FX' Full Face Mask with a 'Quattro' headgear.

              Comment


              • #8
                Blimey, there's a result. Collecting recorded information certainly seems to be the key to getting anything done - good for you!

                In addition to the information recorded on a card in my APAP, that I download each week, I keep a sleep diary in which I record sleep patterns and oximetry figures, food changes and colds, alongside a nightly total of hours and AHI, 90% pressure, and large leaks. It is a bit obsessive but I have also recently started (no joke) noting full and new moons after reading a study in the Journal of Sleep Research (see reference below) about phases of the moon and sleep patterns. The introduction suggests that sleep duration and tiredness can be related to a full moon, which can see 20 minutes more sleep accompanied by increased tiredness. A backward projection over the last 18 months in my case was inconclusive, but if like you I was measuring over two nights I think I would opt for consecutive nights, take the normal readings first, and record every meal and time of eating lest anything unwittingly contributes as a factor.


                Martin Roosli et al, 'Sleepless night, the moon is bright: longitudinal study of lunar phase and sleep', Journal of Sleep Research 15(2) 2006 pp. 149-153

                It's online.

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                • #9
                  I shall attempt to remove variables during the two consecutive days and nights - same food, same bedtime, de dah - and trust the moon to stay put in its orbit! This means I shall have to eat chocolate again this evening, of course!

                  Not looking forward to tonight on reduced pressure - nor tomorrow when I shall be a touchy, grumpy evilness on legs! But a step toward the goal - dare I say it..........

                  Polysomnography!

                  Seems I love it when consultants talk dirty!
                  Respironics REMstar 'M' Series APAP.
                  Resmed Mirage 'Quattro FX' Full Face Mask with a 'Quattro' headgear.

                  Comment


                  • #10
                    Hi all, haven't been on for a while but hope all is well with forumites.
                    Just had my annual review and it did just consist of hours of use (think they didn't want me wasting a machine if it ain't being used) but very nicely gave me assorted bits and a very supportive chat.
                    Gotta admit I belong to if its working don't poke it school so haven't been curious until now but wondering how you get info out of the beast.
                    Is there a hole you stick a usb into or a card you stick in it? Its a SleepStyle 604 CPAP F&P.
                    I've been using it for a bit over 2 years and its a great therapy, if i was on social sites it would be my bestest friend, (Apparently face******s talk like that) and if it was a choice between it and the wife it would be a close thing (ain't saying who would win, not crazy)

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