I’m fed up of fighting — Scope | Disability forum
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I’m fed up of fighting

Cplife
Cplife Community member Posts: 55 Courageous
edited September 2021 in Cerebral palsy
Hi my name is cplife I’m fed up of fighting for everything I feel forgotten about  more so since Covid i also suffer with health anxiety I’ve had since childhood I was born in the 70s hospital visits where horrible back then these visits took me up till I was sixteen and then all care stopped  I’ve received a letter to ask me to do my blood pressure over a week I phoned my gp and told them I couldn’t do it myself they said we hire them out then I said there’s no point in hiring me one as I physically can’t do it for myself and then there response was we are sorry about that we will take you off the list 

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    edited August 2021
    Hi @Cplife
    You aren't on your own feeling like this during the pandemic. I speak with dozens of adults and parents of children with CP a week who have seen everything come to a virtual standstill because of Covid.

    I can relate to what you are saying. I was born in the '70s too and had regular appointments regarding my CP until the age of 16. Now we have the Adult CP Care Pathway which you can ask your G.P. to use to refer you to UCLH for multi-disciplinary team assessments

    In terms of your blood pressure tests, do you have family or a PA that could help you with that?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Cplife
    Cplife Community member Posts: 55 Courageous
    Thanks Richard I didn’t know about the pathway I’ll look into it 
    and as for blood pressure no I don’t have anyone at the moment who would feel comfortable doing it isn’t that what the processionals in the nhs for they understand what you’re blood pressure meant to be 
    Regards cplife
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Yes, I would agree with you. Covid does seem to have changed the medical landscape
    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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