I’m fed up of fighting
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Cplife
Community member Posts: 56 Courageous
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
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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'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
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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 -
Yes, I would agree with you. Covid does seem to have changed the medical landscapeScope
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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