Getting Tested for Cancer - an important notice — Scope | Disability forum
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Getting Tested for Cancer - an important notice

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JustPete
JustPete Community Volunteer Adviser, Scope Member Posts: 303 Pioneering
For a number of years I have asked my Doctor to be tested for Prostate cancer.  A recent blood test came back indicating that I should be tested further.  He said the guidelines had changed as to how abnormal the blood test should be before he could refer me, and that I was not within the range to refer.  I convinced him to refer.  He did a fast track referral, so I had to be contacted within 2 weeks.

After a number of 'no-calls' I finally received a telephone call from a Lead Nurse at the hospital Urology Dept.  This Telephone Call was the most unprofessional call I've ever received.  At the height of it she told me that "it was not in my best interest to be tested for cancer due to my having CP".

I stood my ground and got my MRI Test within a fortnight and the results were indicative of cancer and I will now undergo biopsies in the coming month to get a more definitive diagnosis.

I have written to PALS.  They had until Sunday to reply to my complaint which I confined to 4 pages (so you can see how much I have left out of this post).  They wrote today explaining they needed more time to conclude there investigations.

I really think that as a disabled person I have experienced gross negligence from the NHS twice and this almost became a third occasion.

The point to my post, and my message to this community and beyond, is that you need to ensure that you have things in place when it comes to health issues.  Don't be fobbed off.  If it feels wrong it probably is wrong.  Be ready to fight.
I am a Scope Community Volunteer Adviser with knowledge of "life"!  Lived experience including employing personal assistants, being gay, sport & leisure inclusion & participation, mental health issues.  

What is the bravest thing you've ever said? asked the boy. 'Help,' said the horse.  'Asking for help isn't giving up,' said the horse. 'It's refusing to give up.”

Comments

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Oh @JustPete I am so sorry to hear that the results were indicative of cancer. I am keeping everything crossed for you with the further tests <3 Please keep us updated.

    I hope when you hear from PALS its a proper apology and more support for you. 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • JustPete
    JustPete Community Volunteer Adviser, Scope Member Posts: 303 Pioneering
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    @Hannah_Scope I will, thanks

    But I don't want my message lost - I cannot be the only person with CP being failed by the NHS because they are disabled.  Anyone who thinks they need testing or treatment should always check that their disability is not a factor in a decision making process.
    I am a Scope Community Volunteer Adviser with knowledge of "life"!  Lived experience including employing personal assistants, being gay, sport & leisure inclusion & participation, mental health issues.  

    What is the bravest thing you've ever said? asked the boy. 'Help,' said the horse.  'Asking for help isn't giving up,' said the horse. 'It's refusing to give up.”
  • Sandy_123
    Sandy_123 Scope Member Posts: 50,342 Disability Gamechanger
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    Hi @JustPete I'm sorry to read about your diagnosis and thank God you pushed for testing. I'm totally shocked why they would think someone with cp shouldn't have the test, that makes very little sense to me. 
    I would definitely continue with your complaint as much as you can take it. Good luck with biopsies 
  • Lou67
    Lou67 Community member Posts: 7,237 Disability Gamechanger
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    @JustPete
    Hi I hope you’re feeling not too bad today.
    It’s just awful the way you have been treated thank goodness you weren’t easily put off and pushed for what you should automatically have gotten 🤦‍♀️
    I wish you well and all the best with your biopsy results.

    Take care 😊
  • Rosie_Scope
    Rosie_Scope Posts: 2,213 Scope online community team
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    Thank you for sharing your story, @JustPete.

    It's frustrating how much we all have to fight to get through sometimes, but so important to keep making our voices heard. I hope PALS are able to offer you an apology.

    Wishing you all the best with your testing.
    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • Albus_Scope
    Albus_Scope Posts: 4,081 Scope online community team
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    I've not got anything helpful to add to all the other comments, but I just wanted to wish you good luck with the tests and I'll be keeping my fingers and toes crossed for you @JustPete
    Albus (he/him)

    Online Community Coordinator @ Scope

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    Opinions expressed are solely my own.
    Neurodivergent.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    @JustPete I am going to tag @Richard_Scope here as he is our Cerebral Palsy Lead. To help support you with your message. I am still keeping everything crossed for you with your PALS outcome and results <3
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • JustPete
    JustPete Community Volunteer Adviser, Scope Member Posts: 303 Pioneering
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    An update: The investigation into my complaint has concluded. All non-contentious issues (so 99% of them) were acknowledged in some way or another.  They will form part of the re-education & reflection that the specific nurse will now undertake. The contentious point, was very much glossed over.

    There comes a point where you have to focus on your own health rather than fighting the system.  I wrote back to that effect. However, I made it clear that this 'complaint' was an attempt to ensure that others do not get subjected to the treatment I received from the nurse.  I was categorically told it was not in my best interest to be tested due to my disability; but fortunately had the ability to question and overturn that medical opinion.
    I am a Scope Community Volunteer Adviser with knowledge of "life"!  Lived experience including employing personal assistants, being gay, sport & leisure inclusion & participation, mental health issues.  

    What is the bravest thing you've ever said? asked the boy. 'Help,' said the horse.  'Asking for help isn't giving up,' said the horse. 'It's refusing to give up.”
  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 20,090 Disability Gamechanger
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    I am sorry to hear your news @JustPete and hope you do not have to wait too long for your biopsies. It is totally unacceptable that you are treated differently to anyone else. You need the tests you should have them without a big fight. Good luck.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Thank you for updating us @JustPete

    I am again, so sorry you had to go through that. I am glad 99% of the issues were acknowledged. I hope that nurse is on a probation period too. 

    How have you been?  
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • JustPete
    JustPete Community Volunteer Adviser, Scope Member Posts: 303 Pioneering
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    Thanks for all the good wishes everyone.  I don't think I updated this thread and you guys with the results of the biopsies.  They found early stage cancer.

    Anybody I have told automatically responds with 'oh no, I'm so sorry, what happens next?"  These are genuine feelings toward me and I have been so grateful for the love & support.  My response is always "to live life".

    I started this thread because I was appalled that I was up against "it was not in my best interest to be tested for cancer due to my having CP".  This remains my point.  Maybe I will start a new thread.

    I won't be consumed by the diagnosis, but I really think something bigger needs to come from this.  @Scope may need to lend some weight behind this.
    I am a Scope Community Volunteer Adviser with knowledge of "life"!  Lived experience including employing personal assistants, being gay, sport & leisure inclusion & participation, mental health issues.  

    What is the bravest thing you've ever said? asked the boy. 'Help,' said the horse.  'Asking for help isn't giving up,' said the horse. 'It's refusing to give up.”
  • Albus_Scope
    Albus_Scope Posts: 4,081 Scope online community team
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    I'm sorry to hear about the diagnosis @JustPete but I'm glad you're planning to live life.  It can be very easy to get swept up in the negative emotions and people forget early diagnosis means a better chance of treatment. I'll pass on the info to the rest of the team regarding your main point. 

    Please let us know how you get on. We're all here for you if you ever want to talk things through. 
    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
    Want to give us feedback? Complete our feedback form now.
    Opinions expressed are solely my own.
    Neurodivergent.
  • Sandy_123
    Sandy_123 Scope Member Posts: 50,342 Disability Gamechanger
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    @JustPete thankyou for the update, I can't honestly see how any medical professional could say something so stupid. I really hope someone addressed it with her. Good luck in treatments.
  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 20,090 Disability Gamechanger
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    @JustPete Everyone deserves to be treated. I do wonder why a person with that attitude would even go into the medical profession. Good luck going forward.
  • JustPete
    JustPete Community Volunteer Adviser, Scope Member Posts: 303 Pioneering
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    Thanks all!
    I am a Scope Community Volunteer Adviser with knowledge of "life"!  Lived experience including employing personal assistants, being gay, sport & leisure inclusion & participation, mental health issues.  

    What is the bravest thing you've ever said? asked the boy. 'Help,' said the horse.  'Asking for help isn't giving up,' said the horse. 'It's refusing to give up.”

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