Table 4 Delivering information: access is assurance

Delivering Information: Access is Assurance Example Quotations

“I don’t know much about the statistics. That is gibberish to me.” Alice, 40F with AIH

“The consistency of seeing the same people as well when whenever you go see a consultant, you see somebody different every time. Even though it’s the same consultant, the people that you see are different each time. And some of them will actually talk and answer questions and others, you are in and out in 2 min, and they don’t look up from the computer. Jenny, 58F with NAFLD

“It’s my body and I’m doing whatever I do to it—so I want to be a partner. Whatever you know, I want to know as well” Jamie, 58F with Unknown Condition

“It’s very difficult actually—because you have to request them all the time. And now our surgery has started charging… 47p a sheet… so every time you go and have a blood you have to pay 5 or 6 quid.” Christopher, 69M with AIH

"The first time you will need someone to go through it with you very clearly. To spend time, and let you ask questions so that the first time it is contextualised and you learn how to read it and then from then on you know what to do. It’s almost like you need a little bit of training.” Alex, 51M with PSC

“What was bad was the consultant who I saw, who seemed to have zero emotional intelligence. He was a clever idiot is how I put it.” Matt, 62M with Hepatitis C

“They don’t show you nothing. Normally when they do it, you don’t get to see the screen. Today, I saw the screen and when they do it in the hospital, it’s normally turned away from you. So you can’t see anything” Shirley, 63F with NAFLD

“I love it and wonder why we don’t have them. I mean our GPs don’t even get an image of it either. My spinal MRI’s, instead of getting an image of it, they get a letter explaining what the MRI does.” Alex, 51M with PSC

“I think the image is good, I think it’s reassuring, it’s nice to have, but if you have much more detail than that, then there is more scope to worry and some patients I know would grasp on to every tiny piece of information and one amazing detail about all the… and I’m not like that, but some might be.” Sarah, 48F with PBC

“I just feel slightly better if I have the chance to get as much information as possible” Sophia, 68F with Unknown condition

“I think the problem is when you have things wrong with your internal organs, you can’t bloody see anything… You don’t know what is happening. To see an image of your insides, even if it was awful, you feel at least you have the knowledge and have some power. It’s empowering.” Alex, 51M with PSC

“There’s more in there than I could explain to you, because since the transplant, I’ve had lots of thoughts from time to time. I used to in the old days, couldn’t afford a good car, so I had a scrap car and I always had to keep going to the scrapyard to get spare parts, and some of them were alright, and some of them—you would change the engine and two months later, you did again. I had no idea personally of what condition the liver was in except obviously it was good enough, but, a question I’ve asked and never had a reply was what age the person who owned this liver. You know, was it somebody 35 or was it somebody 75? Because then you think, how long is that liver going to last? You know, but seeing that now tells me it’s a healthy liver, so that has gone into insignificance. That question has gone from my mind now, because it doesn’t matter. That is what matters.” Derek, 63M with previous Liver Transplant (NAFLD)