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Table 7 Quotes relating to the challenges in accessing appropriate treatment

From: Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

Quote (identifier)
“A lot of the people I know with porphyria don’t want to go to A&E every single time because it just feels like a battle with the staff […]” (Patient D)
“[When stating that the patient’s pain relief is morphine through an IV drip] they look at you like you are some kind of drug addict […] at the end of the day I’ve gone to the hospital for a reason and that reason is to control my pain and get better, so that I can go home. But I think they just don’t – there is no understanding of it.” (Patient H)
“Right at the beginning, when we went into hospital, we didn’t have a letter from [our doctor] explaining [that my wife had AHP], because it was very difficult to turn up at an A&E and go ‘by the way, my wife has got porphyria, and this is really painful’ […] We slowly learnt, first of all, not to go to our local hospital, but to drive a little bit further to [the specialist centre], which is where [our doctor] is based.” (Caregiver C)