Hi, my name is paul Feel as if my CP is being dismissed — Scope | Disability forum
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Hi, my name is paul Feel as if my CP is being dismissed

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paulgg
paulgg Community member Posts: 2 Listener
edited June 2023 in Cerebral palsy
Just looking for some help and advice, I was diagnosed with CP in my 30’s, when my body gave up on me! I am now in my 50’s and am struggling with pain which is now in what I used to describe as my good side. I don’t feel as if my Dr believes or understands me and I feel as if my CP is dismissed and has never been discussed with me. 
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  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @paulgg

    Welcome to the community! :) I am so sorry to hear you are in pain and don't feel your Doctor is being understanding. Can I ask, does your GP have multiple doctors under the practice? Could you get an appointment with one of them? 

    Just to let you know, I have moved your post into the cerebral palsy section of our forum and I'm going to tag @Richard_Scope who is Scope's Cerebral Palsy Programme Lead :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Richard_Scope
    Richard_Scope Posts: 3,659 Scope online community team
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    Hi @paulgg
    You are experiencing pain in your 'good side' due to you using it all of the time. As we age with CP some people experience post-impairment syndrome. You need to speak to your G.P. about this. Do you attend G.P. appointments on your own?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • surfygoose
    surfygoose Community member Posts: 437 Pioneering
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    That is such a late diagnosis. How did it feel finding out only in your 30s? I haven’t heard of someone being diagnosed so late before. Did it upset you that they overlooked it when you were a child and missing out on the early support? That seems such poor practise that as well as diagnosing you at such a late stage they did not discuss your condition with you properly and that they are dismissing your concerns around it. I hope you manage to see someone more helpful and they begin to at last help you.
  • paulgg
    paulgg Community member Posts: 2 Listener
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    Hi,
    Thanks for your responses, as a child I was told I had polio and had an operation to lengthen my achilies tendon as I could not put my foot flat. I also struggled with reading and writing and struggle with maintaining info. I only was given a diagnosis when I tried to claim benefits when my body gave up on me as I had been working as a dray man and couldn’t physically do it anymore. This led to me having to appeal the benefits and pay to see a consultant who diagnosed me with CP. Scope were the only ones who discussed my cerebral palsy diagnosis with me back then.
    I do not think there is a regular Dr in my surgery, i do go to the drs on my own but don’t feel as if I’m heard and my partner does say I divert away from the issue where I should stay focused.
    I feel as if the smallest task becomes so tiresome and now the pain is in my good side too
  • Richard_Scope
    Richard_Scope Posts: 3,659 Scope online community team
    edited June 2023
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    Hi @paulgg
    What I would do is take the information that I have included in the links in my earlier reply to your next G.P. appointment. Also, before I go to any medical appointments, I make a list of all of the questions that I want to ask the doctor.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 

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