In depth: My experiences with a long term condition
"It's miscommunication. I could paper my house with hospital letters that say utter jibberish. And when I see letters that have been sent to my GP about things I'm supposed to have said or been diagnosed with, or conversations that we had. Honestly, it's quite scary because then the next time you go to see anybody, they're...read more
"The consultant who said to me, 'I don't know', I actually thanked him for that. I think we need to empower consultants… [to feel] it's okay not to know.They'd get a lot more respect and much better co-operation with patients. "
"He said to me, 'We will have you out of theatre with a patient controlled analgesia, because we don't think that, in no uncertain terms, will we be able to manage your pain. You need to have control of your post op pain.' And I could have hooked, kissed and held on for so long...read more
"If you can't advocate for yourself, you don't get adequate health care. And that's as brief as I can put it."
"Often what gets communicated within GP land never filters through or vice versa. So I am definitely between departments as well. Because you seem to waste a lot of your appointment having been referred to somebody else explaining why you're there. "
"Mainly, you know, I've struggled with my mental health. And so a lot of the pain I was experiencing, I was told was... to do with me. I was hysterical, I was anxious about things."
"When I asked for help, there's not the help there. Because it feels like because you're not there, when you need emergency surgery. Or because you're not on the doorstep...I just think when somebody says there's nothing more that they can do for you... what are you going to still...read more
"It took me months and months to get my appointment. And when I got to my appointment, it was only then that they told me they hadn't been able to get the results. Because they should have taken a blood test from me at the time, which they didn't do....read more
"I lost loads of faith of even being listened to about my own body.With regards to my bladder, even though I had interstitial cystitis, the consultant told me that I wasn't aware of what was happening in my body. [That] I I wasn't, in fact, incontinent. I'd mistaken my own...read more
"My general experience is of seeing people locally, who tell me I can't possibly have the condition I think I've got. And then fighting over several years. Eventually getting to see a specialist, usually in London, [saying I've] got what I've known for years. But can you put it on...read more
"He said, 'It's you just tension headaches because you have a mental health condition.' And I thought, 'This is ridiculous.' [So] I suggested that I came off a new medication that he put me on because one of the side effects was migraines. And he said, 'Oh no, it doesn't work.You're...read more