Don't be afraid to stand your ground with 'The Professionals'

Discussion in 'I have a partner with dementia' started by Necion, Feb 16, 2015.

  1. Necion

    Necion Registered User

    Hi all, I have to share an experience Andy and I had in a large NHS hospital last week.

    It was Andy's appointment- at the Sleep Clinic- for his review of his sleep apnoea & CPAP machine.(that's the air machine & mask which he wears at night)

    All went fine until the nurse handed Andy the clipboard with the Epworth sleep scale questions. This has 7/8 questions about when he is likely to doze off, each answer on a scale of 0-3.

    Now anything which remotely resembles a 'multiple choice' question is a complete no-no for Andy - even what may seem totally simple for most of us just causes him confusion and anxiety, so he had a quick read then handed the board to me and said he couldn't do this.
    I obviously knew exactly what he meant, which was that he needed me to take him through it in 'bite sized chunks' so that we could get the right answers down.
    (during this time, the nurse had moved from the desk in front of us, to a worktable behind us where she was adjusting the machine.)

    She then said 'It's supposed to be Andy who completes this form, not Mrs'
    I kindof half turned around to face her, and said that because of the illnesses, if Andy asks me for help, I give it.

    She made a big deal of me NOT writing on the form, as they need the correct information From The Patient - not the wife!!!!

    Again, I turned to face her better, and asked if she knew about the other diagnosis. She replied 'Yes, I need Andy to fill in the form.'
    In disbelief, I asked her if she knew about the dementia.
    'Yes I know about that'
    So you'll know there are some things which are difficult, especially when there are distractions? (she did like to witter on, and had shown no regard for giving Andy any extra time to absorb what she had been saying!)
    'Yes I know that, he'll be fine if you just let him take his time' witter witter witter !!!!!!!!!!!!!!

    Somewhat gobsmacked, I had to tell her we need to calm things down ( I could see Andy becoming agitated) and motioned with my hand in a downward manner.

    She then became even more wittery.....and said 'everything was fine until you became aggressive' to which I replied I am not the one being aggressive - please stop speaking until we get this form completed.
    That brought a retort from her of a PHFFFFF over her shoulder - you know, as we may do to a piece of dirt on our shoe !!!!

    I turned back and gave the clipboard to Andy saying to have a go at it, and I'm here to pick up the pieces if he needs me.
    This he did, although some of the answers were scored as a low level 1 where they should have been a definite 3.

    However, we did our normal routine of a bite sized chunk - with example where needed - so that Andy could then give a Yes/No answer, as opposed to having to calculate 0-3.

    The nurse left the room for a few minutes, and when she returned I can only say I felt like I'd stepped into a parallel universe!!

    I think she must have had a personality transplant in those couple of minutes she was out of the room.
    She resumed her seat at the desk, and proceeded to acknowledge how wonderfully well Andy & me worked as a team, that she had noticed how well I asked the question, used an example and approached the required answer from a whole different direction.

    'It's wonderful when we see patients being helped like this, and very informative for us to see from a different perspective what is required, because we don't know what individual patients need'

    'I can see you are a very caring person, and love your husband, it shows through in how easily you are willing to help him'

    etc etc etc !!!!!

    As you will all realise, I'm not posting this to blow my own trumpet....the reverse is true....like everyone else I loose it once in a while, and we all know what a bloomin' lot of hard work it is to figure out one method of coping......before things change and we have to start all over again....... but -

    my reason for this post is to show that we must, must, must stand our ground against even the most highly 'qualified' medics if we know they are - not actually 'wrong' - but lacking in understanding of what OUR loved one or patient needs.

    They know their job, I have no doubt.......BUT I KNOW MINE TOO.... so don't MESS with me!!!!!:eek:

    Rant over folks...... we mst not allow ourselves to be downtrodden by those who don't always know better!!;);)

    Take care all,
    lots of love, Necion. xx
     
  2. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    Good on you.
    I'm guessing its likely that the personality transplant was due to a far more knowledgeable staff member putting her right.

    Over the years I've had battles for both my parents with people who should have known better.
    I remember telling one GP who came out because mum had yet another infection , that he didn't have a clue , he didn't like it and said so , I didn't care how he felt because he was telling me to do the impossible, well two thing really, make mum drink more, 8 glasses at least and it had to be water which mum detested.
     
  3. Necion

    Necion Registered User

    Hi Lin, how you doing??
    Yes, I wondered about colleague intervention if she had gone out to have a rant about me!!

    Good for you telling that GP he didn't have a clue:D I mean, it's not their professional integrity we need to watch out for being up to scratch..... just basic common sense - which doesn't come just because they have letters after their names!

    That said, we now have a GP who's an absolute treasure, knowledge, common sense and totally approachable. He's lufferly too:eek:

    Take care,
    Lots of love Necion. x
     
  4. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    Hi Necion, I'm fine thanks . Have missed you on here.
    It is wonderful when the professionals have common sense .
     
  5. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Hi Necion I couldn't agree more with your approach to professionals. I could probably fill a few pages on their incompetence from recent experiences. At the Stroke Clinic a couple of weeks ago a doctor pointed out that Maureen's vascular dementia was progressive and there was no treatment. I just don't know why he needed to say this and add to her concerns about her condition..

    Last week a Consultant at the Cardiology Clinic insisted that Maureen's blood pressure needed to be taken three times a day for a week. This needless request would have induced panic for someone who always fears she has a 'bad heart', just like her mother. Fortunately, our thoughtful G P, who knows Maureen very well, has come up with a simpler way of ensuring Maureen's blood pressure remains within safe limits.

    I am sure most medical professionals work very hard and have had extensive training. However many do not appear to engage their brain before they open their mouths.
     
  6. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    Eventually managed to get very good with standing my ground. My Husband had a great GP and Carers in his CH, but the rest of them were mainly hopeless.:eek:There was the local MHT who wanted to move Pete from the CH where he had the best care he could have-and were happy to keep him. The was the CPN who told me that there was no help available for Pete (daycare) but I could take an aspirin for my stress headaches:eek: Then there was the OT who came out to assess Pete for bathing/toilet aids; she was so impatient with him because he didn't understand how to get in the bath and had forgotten what a toilet was for I could have hit her (I gave her a verbal bashing instead) Don't even get me started on the service from 111:eek:

    It's not right-but you have to be downright rude at times to get these people to address sufferers with dignity and compassion

    Take care

    Lyn T
     
  7. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,948
    Female
    Dundee
    I surprised you didn't throttle her Necion. I'm glad you didn't though as I'm looking forward to seeing you both again at the Edinburgh meet up. ;)

    You did well and I know I would stand my ground for Bill too. I feel angry for all those who don't have someone to stand up for them.

    Take care. xx
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,910
    Kent
    I`m with you all the way Necion. :)
     
  9. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,498
    Female
    Near Southampton
    Hi Necion. Looking forward to seeing you next month!

    You did so well to remain calm in those circumstances.
    It wasn't just the fact that the nurse obviously didn't understand dementia but that she didn't listen to you either. Obviously she spoke to a wiser person whilst she was out of the room. I'd have been inclined to grab the form and fill it in then!
     
  10. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,693
    Salford
    I think it's a fairly typical experience that medical professionals want to speak to the patient not a third party until they realise the extent of the problem, but then any man speaking on behalf of a woman is immediately seen as some control freak from the outset. What you describe is normality for me now I just sit back and wait until it all goes **** up and they ask me to help.
    K
     
  11. Beate

    Beate Registered User

    May 21, 2014
    11,546
    Female
    London
    #11 Beate, Feb 16, 2015
    Last edited: Feb 16, 2015
    If they let OH answer all the medical questions they'd think he was at death's door as he answers all symptom questions with a resounding yes!
     
  12. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    I've only needed to engage with a few 'professionals' so far when it comes to the care of my aunt, but it's surprised me how they often won't question the answers she gives them. I'm sitting there thinking I should keep quiet and let them do their job, but there have been times when I've had to interrupt to make sure they don't end up with completely wrong information which could have a serious implication later on.

    When my mum had a hernia a little while ago, auntie suddenly pipes up that she's got one of those as well! (she doesn't, in case you're wondering). In fact, any medical condition you might mention, she seems to have or have had several times in the past! Complete fantasy, but a medical professional might just accept the answers as fact if I'm not there to correct them.

    We all like to think that GPs, doctors, nurses etc. are somehow a cut above all other professions, but the reality is they are normal people who have studied their subject, taken some tests, got a qualification and are now a professional because it says so on their card and they are being paid to do it.

    They aren't all happy or motivated in their work, they don't all keep up with new developments in their field, they don't all have a good 'bedside manner'. Some of them probably really wanted to be a lumberjack...

    I think it helps to learn and use some of their jargon, so they think you know more than you might do and if you don't get a satisfactory answer or explanation, don't be afraid to challenge them and go above them if you have to.

    I respect any professional who knows their subject, acts in a professional manner and treats their customer (or patient) with respect. But if they are arrogant, rude, patronising or clearly don't know what they're talking about then they better watch out because I'll be on their case and I'd apply those same rules to a plumber, lawyer, doctor or whoever.
     
  13. Necion

    Necion Registered User

    Thank you all for your support.

    Yes, it's shocking how often we have to take control of these situations!
    I suppose it's all down to the stage of 'raising awareness' we are at, and highlights the need for us all to keep educating the world !!

    We're really looking forward to Edinburgh too - it's a beautiful spring morning here in Peterhead, so lets hope we're blessed with decent weather at the meet-up.

    Kassy, Andy says hello to Simon too, he had a great time in Birmingham with everyone.

    lots of love,
    Necion. xx
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,660
    Female
    South coast
    I think a lot of the problem for health professionals is that these days you cant move for directives, protocols, best practice and procedures, Seriously, you cant even go to the loo without one (handwashing procedure!) Everything is constantly drummed into them that they must do this and have to do that with the threat that if they dont comply they will get a serious dressing down/struck off/sued by the patient that they just dont go "Hmmm - I really aught to be doing this, but you know what, I dont think they they can do it"

    So yes, we have to keep reminding them.
     

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