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Society medical professionals ability to diagnose

worried33worried33 Posts: 293Member Pioneering
edited August 15 in Disabled people
I have already decided I am going to make a website detailing my life's struggles to help people in similar situations to myself, but I want to ask you guys on here if you have ever had these issues.

So e.g. when I have physical examinations at hospitals, almost 100% of the time, in the doctor's notes (or am rarely told and then asked if I am in pain) that they dont see signs of me been in pain.
As many of us know of course before seeing a consultant you are sitting down for prolonged periods of time waiting and waiting.  e.g. before seeing my knee specialist I was waiting for nearly 4 hours in the waiting room.

However that wait whilst dulling my pain, and increasing my mobility temporarily, did not get rid of the pain, I was in pain when walking to him, when been examined, and especially when asked to do the movements he asked me to do.  However I am not a person to shriek out in pain, I always try to hide it as I consider it polite.  I was then observed walking out of his room, and after that was done, however after that appointment I did have to get myself to the x ray room, as soon as I walked out of the waiting area, into the corridor to the x ray room, the pain went up a few gears and my mobility collapsed to almost nothing, (this happens to me, my initial mobility is limited but not crippling but then falls of a cliff after a short time, this initial burst leads to false assumptions been made as HCP's seem to expect you to have practically no mobility from the moment you stand up).

I eventually got discharged by this consultant but the reasons on the letter were interesting, it didnt state the patient has no signs of X condition, but instead no "severe" signs.  I asked my GP what that meant, and she said he couldnt find anything.  I then asked her why didnt he state simply there was no signs instead of no severe signs, and ad asked her to check the notes on her computer.  She then found notes that arthritis was found but not severe enough for treatment.  I made the point thats wrong, she agreed and bounced the referral back to him.  I was discharged a second time, she bounced it back, then the third time I went, whilst doing the knee exercises something weird happened in my knee causing it to lock and I collapsed on the floor.  Then I was diagnosed.  Without persistence from myself, no diagnosis would have been made.  Consultants seem to have a very severe resistance to diagnosing people.  My first appointment with my GP several years before this her original gut feeling was I had arthritis but was overruled by a consultant in a&e and told to drop the diagnosis.  His reasoning was "only old people get arthritis, so he probably doesnt have it".

I have had other experiences similar to this.  

Now my younger sister had some serious health problems last year, of course given my own experiences, only me and her boyfriend took her seriously, rest of my family were like, "well if the hospital cannot find anything, then there is nothing wrong with you".  I advised her to record everything, and pester the patient liason service so the hospital know she doesnt consider what was happening acceptable, her own GP also told her to use the PLS.  As an example the cyst was considered too small to be serious to no treatment offered, a registrar sent her home without even properly discharging her, her name was on the ward whilst she was sitting at home.  Of course the cyst grown, and the NHS it seems only cares when you about to drop dead, decided it did care when her life was threatened.  The problem was she now had to have surgery with a 50/50 chance of survival, all because the NHS delayed it 10 months.  The trigger for my sister pushing harder was when she was next to another lady in bed with lots of tubes going into her kidney, the lady told my sister "push hard, they will deny anything wrong with you, if you dont you end up like me".  My sister pushed very hard after that point, and eventually had the 50/50 surgery which she thankfully made it through.

Back to me, I frequently get people asking me if I am ok in the street, the reason is I try to walk without aids when out in the public, and try to hide my walking problems, but obviously I fail at it as people are noticing.   But interestingly medical professionals cannot notice it.  (or they pretend to not notice it).  My thinking is doctors and consultants, are used to seeing lots of people, including people with very extreme problems, given the NHS budget issues, they have probably got used to only considering the most extreme patients as a problem to deal with, and kind of mentally trained themselves the less severe are "normal".  The trigger for my GP was "well you do look normal to me", a member of the admin team who was in the room decided to say "he does struggle downstairs to get to you".  The GP since that day has took me seriously and fought my case against every discharge.  She has told me she is hassled frequently about referrals for NHS budgeting reasons, but believes in her medical integrity over money so will do it.

Paramedics also pick up on it, and have also written a letter to give to my GP after they last attended my home, to advise her of a new diagnosis they believe I have.  They can now read notes on a tablet, so it helps their job a lot when visiting people in their homes.  They also told me they get frustrated, they take patients to hospital who clearly have something wrong with them, to only find out later they get discharged for having nothing wrong.  They end up repeatedly taking the same patients to hospital again and again until a diagnosis and treatment is done.

My sister has advised me to now emphasise my pain, with whatever it takes when at hospital, crying out, grunting, whatever required to getthe message across, but its not in me to do that.

This of course affects also benefit entitlements, as diagnosis is used as a means to legitimise claims.  So not only quality of life is affected but likely financial support as well.

I am curious tho do others have the same experiences with hospital consultants not noticing pain or been discharged without diagnosis?

Replies

  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @worried33 and thank you for taking the time to share this with us. I know for certain you won't be alone in this, but I'm sorry you have not been listened to.

    It took me nearly 5 years to get a diagnosis as my pain was put down to disabilities I already had, growing pains or that I was simply too young to have anything else going on. I also had deteriorating eyesight which fails to have a proper diagnosis. Again, this has been put down to preexisting disabilities despite only happening over the last year and a half.  
    Chloe
    Online Community Officer
  • worried33worried33 Posts: 293Member Pioneering
    Thank you for your reply Chloe, I am thankful for you posting your experience.
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    No problem at all @worried33! How are you doing today?
    Chloe
    Online Community Officer
  • dolfrogdolfrog Posts: 290Member Pioneering
    Hi @worried33
    I have been fallowing your thread, i understand where you are coming from, as our family have been experiencing similar problems for most of our lives. 
    All of my family, 3 sons, my wife and me, have the same communication disability Auditory Processing Disorder, which is about the brain not being able to effectively process what the ears hear. The problem has been that here in the UK our issues were not even recognised by any medical professionals until the late 1990s which was when our eldest was diagnosed. 
    The next problem has been the lack of post diagnosis support from the so called medical professionals who should be part of a multi discipline support team, recommended by the UK Medical Research Council. Instead we have three or more different professions (some professions have more than one professional body) using different terminology to describe exactly the same issues, and in denial that our disability exists. it is all about them hiding their ignorance and incompetence, maintaining their career incomes, and massaging their egos, while ignoring the real needs of those who have our disability, which is also the main underlying cognitive cause of the dyslexia symptom.
    It is all about money and politics, and nothing to do with the real clinical issues. 
    I have been through disability discrimination in the work place, and as a result experience post traumatic stress, our sons are now adults and have problems finding their best career options, and my wife and I are almost house bound trying to avoid further disability discrimination and coping with the stresses of our disability not being understood by others. 

    I hope you are having a better day today
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    I agree. My son’s first urology appointment was a complete waste of time. He refused to conduct tests or answer my questions either. On the other hand I have attended appointments with skilled caring doctors who have respected me and restored my confidence. 
  • worried33worried33 Posts: 293Member Pioneering
    What a time to bring this up, my GP has just retired, I hope I dont have another 10 years of finding one who is motivated to help me.  Sorry for not responding yesterday guys, in huge pain the last 24 hours.
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