Bev and Adam - Interview 26
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Bev said that she had been having regular cervical screening for about seventeen years because she’d had various gynaecological problems over the years, including endometriosis. She went for routine cervical screening in 2009, aged 33, though this was about two years later than usual because they had changed GP. Four weeks later, she received a letter from her GP and the hospital telling her that her results showed abnormal cells. She had a colposcopy appointment the following week.
Bev was extremely worried about what could be wrong and how serious it could be. When she went to the colposcopy clinic, the consultant wanted to treat her with LLETZ under a general anaesthetic in a following appointment. Bev was unhappy about this because she’d had problems with general anaesthetic in the past. She also felt that she was given very little information and was only told that she had CIN3 because she made a point of asking.
The consultant told Bev that he would need to order a special speculum before he could perform the LLETZ and she would be sent a letter with an appointment date. At this second appointment, the consultant tried to treat Bev under local anaesthetic but told her that he was unable to do so and that she would need a further appointment to have the treatment under general anaesthetic.
Bev was extremely upset at having to wait even longer to be treated and worried that, during this time, her CIN3 could be progressing. She and her husband, Adam, said they were given very little information and, concerned, they spoke to a relative who was a health professional. On their relative’s recommendation, they went to see their GP and were referred to another hospital and consultant. There, Bev was treated by LLETZ under local anaesthetic.
Comparing the two hospitals, Bev said that the consultant ‘constantly asked me if I was alright, if I was happy for her to continue. The nurses kept asking me if I was alright, and it was just a totally different experience. It was actually quite, it sounds strange, but we were actually all laughing and, you know, it was quite nice. We were laughing and joking, and it was just such a different experience.’ Bev said she was also happier having a female consultant.
At the time of interview, Bev was waiting for the results of her surgery. Both she and Adam felt that women should be given more information about CIN3 and how serious it. They also said they were happier with the empathy, care and information given by the second consultant than the first.
Bev changed to another doctor because she felt strongly about being treated under local...
Bev changed to another doctor because she felt strongly about being treated under local...
Bev' I was nervous because I didn’t really know what to expect. I didn’t really know, I knew a bit about what the LLETZ treatment, that it was a laser, but I didn’t know what it actually did. So again, you know, you’re feeling really nervous, feeling a bit sick. Getting yourself worked up. And he [doctor] was just like, “Oh you know, lets see what we can, lets have a go, let’s have a try at this.”
Did you think at this point you would be having a general anaesthetic?
No, at this point I knew, because I’d fought to have it done as a local, I just thought, you know, he’d be able to do it under the local. And he started to do it, and decided that sort of five minutes into it, he couldn’t do it under the local anaesthetic because again the speculums weren’t right. The needle that they used to anaesthetise, you know for the local anaesthetic, wasn’t long enough. And he just…
Husband' Gave up.
Bev' Gave up. He didn’t even try, and at that point he said, “You know, you’ve got, you have to have it done under a general.” And I was just sort of, “Well I can’t have a general, I don’t want a general anaesthetic.” And he again just then threw a leaflet in my hand and went, “We’ll write to you when you’ve got an appointment date.”
We basically went to Hospital 2. I got called in to the actual room by the nurse, and instead of just calling me into the little side room, I was actually called into the main room. The consultant number 2 was sat at the desk and obviously they had on the letters that I’d been to Hospital 1. And obviously asked me what had happened, so I explained everything to her with regards as to what had happened at Hospital 1. She went through my full medical history with myself, family history of anything like this, so I was able to tell her everything.
She explained everything to me. She explained the colposcopy, what CIN3 is, and she explained the whole lot to me. And actually asked me that if she could do the treatment there and then, would, you know, would I be happy for her to do it that day?
I was like, “Yeah please.” I got asked to sign a consent form to give my consent to having the treatment done. She went through, you know, all the possible complications, and things that you could get after having the treatment done, which nobody else had done with me.
I signed the consent form and then I was shown into another room to get changed, and came back out and admittedly, I was probably in there for a good 40, 45 minutes plus. And she did struggle to do it because my cervix apparently is a bit weird and where it’s located. But she sort of persevered with it. Every time she kept me updated with what she was doing.
Bev was given very little information before and during the colposcopy. There was no time to ask...
Bev was given very little information before and during the colposcopy. There was no time to ask...
I remember being called by one of the nurses, going into this little office, and they obviously told me, you know, you needed to get changed and put the lovely NHS gown on, as you do. And the consultant will be in to see me. He literally walked in, said hello, asked me when my last period was, and then that was it. I was then sort of sat in the chair having it done.
At that point I didn’t really know what to expect, you know he didn’t ask me any questions. He didn’t tell me what he was doing, so I just was very nervous, and just didn’t have a clue really as to what he was doing.
Was there a nurse as well?
I had two nurses. But even they didn’t really say a great deal. They were just really repeating what he was, you know, telling me to do. So at no point really did he say anything.
I think the problem is, when you’ve a leaflet, they do say that they tend, if they can, they will do the treatment as well there and then. So it’s over and done with. And he did the colposcopy, and then told me to go and get changed and he’d come and see me. He’d come in, and I literally sat down, and got changed and I just got a leaflet thrown in my hand telling me about the LLETZ treatment, and he went to walk off.
Did he say anything while he was doing the colposcopy, that what he can see?
No. He said nothing. He said absolutely nothing to me.
So you didn’t know at this appointment that you had CIN 3?
No, I knew nothing. It wasn’t until he went to walk off that I actually thought, “Well you know, hang on a minute. I’ve got a couple of questions. One, what is it?” He just went, “Oh it’s CIN3.” Then still went to walk off.
So you had no time to ask any…?
No, I had no time to ask any questions whatsoever.
Did you have any time to ask these questions to the nurses?
No, she just showed me the way back to the waiting room, and went off again.
Bev and her husband Adam would have liked more information about pregnancy before her LLETZ. They...
Bev and her husband Adam would have liked more information about pregnancy before her LLETZ. They...
Bev' I know from the leaflet that I signed for the consent form, the only real thing that they actually say is that is having a pre-term labour. But I know from some of the forum websites that I’ve read, a lot of people on there have said that they’ve had difficulty getting pregnant and it increases the risk of miscarriage, which is something I’ve not been told by the hospital and the doctors. So I don’t know where they’ve got that from, if that makes sense. Because nowhere have I actually been told that.
Husband' But again, though, this is one of those things that’s not in the information that you receive prior to the procedure. It’s information you receive as and after you have the procedure. And it’s difficult because, you know, how can a women make up her mind. Obviously yes granted the procedure has to be done. But if we’re talking about a woman of child bearing years, like my wife for example, you know is this now going to put added thought into the back of her mind of pregnancy, do we run the risk of this being early-term, this, that and the other?
Again there’s no percentage rates of this is how many women suffer premature births, or miscarriage, if miscarriage is a side effect of it. You know. Again this is only information that we’ve, that my wife got from the internet. You know, this hasn’t come from the doctors, so as far as I’m concerned this is just pure hearsay. This might have happened to one woman, and what’s happened is that this is now you know, blown out of all proportion.
Bev and Adam would have liked more information from healthcare professionals but felt they had to find much of it for themselves. At first they were unsure what to look up or how serious CIN was.
Bev and Adam would have liked more information from healthcare professionals but felt they had to find much of it for themselves. At first they were unsure what to look up or how serious CIN was.
From all accounts looking at other pieces of information, more and more women are being diagnosed with this [CIN3] and it doesn’t lead to future problems and potential health risks. It is potentially a one off and, you know, it takes a lot of delving around to try and find this information.
This information wasn’t something that was sent along with the letter. When Hospital 1 originally wrote to us, it was a case of right this is your appointment, you’re booked in for this, you know. That’s it.
So that first letter had booked you in for an appointment at the colposcopy clinic?
Yeah.
And then you had a standard leaflet?
Yeah.
Saying that this is what happens at the colposcopy clinic, and a little bit about CIN1, 2 and 3?
Yes.
Did you look for more information at that point or not really?
Yes, I did. I sort of searched the internet. Just to try and find out sort of more information. At the time, though, I didn’t know what I was actually looking for, so I could only sort of do my search then on colposcopy and abnormal smears. Because at that point you don’t know how bad it is or anything else.
And the lack of information that I found, it was information, a lot of the websites that do was sort of cancer websites. Which then starts alarms bells ringing as well when, you know, when you just type it into Google or Yahoo. They did a lot of the information on that. But other than that, until you’d actually had it done and you knew a bit more, could you then actually go away and do some more sort of searching about it.
Husband' I think based on as well though is, is in these leaflets there isn’t a significant difference in wording and paraphrasing between the CIN1 and CIN3. It is literally, as far as you’re concerned, CIN1, CIN3 are abnormal cells. It’s not paraphrasing in the sense of right this is a significant difference between one, the other and the other. It’s just generic.
Bev's new consultant took time to explain the procedure, though it took some time to do because...
Bev's new consultant took time to explain the procedure, though it took some time to do because...
Bev' We basically went to hospital 2. I got called into the actual room by the nurse, and instead of just calling me into the little side room, I was actually called into the main room. The consultant number 2 was sat at the desk and obviously they had on the letters that I’d been to hospital 1, and obviously asked me what had happened so I explained everything to her with regards to what had happened at hospital 1. She went through my full medical history with myself, family history of anything like this, so I was able to sort of tell her everything.
She explained everything to me. She explained the colposcopy, what CIN3 is, and she explained the whole lot to me. And actually asked me that if she could do the treatment there and then, would, you know would I be happy for her to do it that day?
I was like, “Yeah please.”
I got asked to sign a consent form to give my consent to having the treatment done. She went through, you know, all the possible complications, and things that you could get after having the treatment done, which nobody else had done with me.
I signed the consent form and then I was shown into another room to get changed, and came back out and obviously I was, I was probably in there for a good 40, 45 minutes plus, and she did struggle to do it because my cervix apparently is a bit weird and where it’s located, but she sort of persevered with it. Every time she kept me updated with what she was doing.
She constantly asked me if I was alright, if I was happy for her to continue. The nurses kept asking me if I was alright, and it was just a totally different experience. It was actually quite, it sounds strange, but we were actually all laughing and, you know, it was quite nice. We were laughing and joking, and it was just such a different experience.
Husband' More relaxed.
Bev' It was yeah, definitely more relaxed. Which I think is, you know, because again I’d gone in thinking, “Oh God you know, if they’re not going to be able to do it, are they going to tell me I need this.” And it didn’t, you know, it just didn’t happen like that. So it was, in a way it was a great relief to myself to have it done, I was told after I had it, after I’d had it all done, they kept me sat in there with a glass of water, because obviously my legs were a bit shaky and being like that for a good 40 minutes.
And sort of after it was all done and I was dressed, I then got a different nurse who came in, took me into a separate room with settees and everything, and she actually went through all the leaflets with me, what I’d just had done, all my do’s and don’ts for the next six weeks, and everything else. So it was just such a different response and
treatment I suppose.
Husband'' From my point of view it was almost the difference between like an NHS hospital to a private hospital. You know, Hospital Number 2 was so much better equipped.
Bev' And that’s the other thing, you know, when you think they’re both NHS hospitals, they’re both within the same area, one hospital has, you know I won’t lie, it wasn’t easy for her to do, she changed speculums two or three times whilst doing the procedure, but you know she got on there and she did it.
Husband' And also from my point of view as well it was, again it was a relief that because I knew when we got there, and again it was, it was a completely different environment when we got there. They requested the patient questionnaire. You know, ethnic background, this, that and the other. All the usual stuff you’d expect. They requested that on arrival. And again it was just a completely different atmosphere. You know and ho