Sue

Age at interview: 48

Brief Outline: Sue had aches and pains in her shoulder for eighteen months and at first, she went for private physiotherapy to help her cope with it. Physiotherapy only helped her regain partial movement so she went to see her GP, who referred her to a specialist. The consultant recommended a steroid injection, but when that failed to work, she was told that surgery was her best option. Sue used the Technology Enhanced Patient Information (TEPI) website several times before her surgery. The information she found on the site made her feel well prepared and relaxed about her upcoming surgery. Her surgery went well and she has regained full movement of her shoulder. She is back at work.

Background: Sue is single with two adult children. She works full-time as a school manager. Ethnic background: White British.

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Sue started noticing aches and pains in her shoulder for about eighteen months. When lying down, she couldn’t lower her shoulder and noticed that it was curved forward. These aches and pains became difficult to live with. She was in constant pain and had restricted movement that started to drain her emotionally. 

Sue was seeing a private physiotherapist once a week and although some exercises to loosen her shoulder worked for a bit, it got to a point where it was no longer improving. She went to see a GP who initially recommended painkillers, but eventually referred her to a consultant.

She had to wait about 6-8 weeks for a phone consultation from her hospital. The hospital sent the date for the call consultation, but they didn’t call her. Meanwhile, her GP sent her to get an X-ray of her shoulder. She had another phone consultation set up, but again they failed to call her back. Sue rang herself and was told she already had an appointment to see the consultant.

The consultant suggested she should get a steroid injection; however, it only helped for about three hours. She then was given a follow-up appointment and was told that the best way forward was surgery because she had a bone spur that was restricting her movement. She was given a leaflet and was told about a 3D online website she could refer back to about this surgery. Sue agreed to have the surgery and was booked in quite quickly, as she agreed to take any cancelation. 

When Sue had her pre-op meeting, she felt very relaxed because earlier she had had a chance to dip in and out of the Technology Enhanced Patient Information (TEPI) information site and to find out about her surgery. Her doctor encouraged her to ask questions, but she felt she had already got the information she needed and felt well prepared. She found the TEPI site very helpful and easy to navigate. 

Sue stayed in hospital for one day and was told her surgery went well. She is currently back at work and has been coping well. Overall, she thinks the healthcare she received was brilliant and she could not fault it.

Sue found the videos brilliant. She dipped in and out and watched them whenever she’d forgotten something. She felt calm, relaxed and ‘equipped’ for surgery.

I watched it [TEPI videos] very quickly, briefly there and when I came home from that appointment I watched it again because I thought you know, when you’re sort of like, you’re sort of in a different environment, you don’t settle and watch it and take it all in the first time so it was really, and that’s what I found really good about it that you could look at it again. 

So I looked at it again at home, the study, the pictures, the 3D pictures and got it in my head what was going to happen next at the pre-op and then the surgery itself and then afterwards which was very, very helpful. But, and the, just before I went to pre-op I looked at it again to make sure I had it in my mind what was going to happen there. Which was great, it was great to be able to dip into it when you needed it, when you’d forgotten something and that’s what I found was brilliant. And then after surgery too although I’d got it in my head more by that point I still looked again after surgery to help me with the exercises and make sure I was doing them correctly.

Okay so you dipped in and out?

Yes.

According to what you needed at that time.

At that time yes and what, every time I did it I watched, I looked at all of it but I took from it what I needed at that point. And then I went back later and did it again because I needed something else from it, then so it was really good, very good for that.

Did it answer your questions or was there something missing in the information as presented on the 3D images?

No, I felt everything was there. I felt it was the most, I have to say when I went into surgery at that time, I’ve had a few surgeries in the past, and when I went into surgery at that time I felt more equipped for it. I knew what was going to happen. I didn’t have to ask questions, I knew it. Although the doctor still asked you did you want to know this and no because I’d been looking at this and its fine, I know what’s going to happen, I know. 
And I did feel more calm and relaxed than I’ve ever felt in surgery, yes going into surgery as calm as you can be, you know what I mean, so it was very good, very good, very helpful. I personally found it very helpful.

The videos had practical rather than gory information, which Sue found good and helpful. She knew what was coming and didn’t feel so nervous.

I’ve never been quite so relaxed actually. It was very, very good, yes, because I’m not a big needle fan and that’s the bit that scares me the most, the needles and things. 
And I just, I've got to say, because I think whether it was because I was armed with more information, I knew exactly what they were going to do. I don’t like gory details myself but there wasn’t any. It’s done in a way that it’s more practical information rather than gory information, if you had real people on there with open wounds I wouldn’t like it so much, so that for me is good.

So you like the 3D pictures?

Yes, I do, I prefer that than I couldn’t, I wouldn’t like it if it was sort of actually a shoulder being operated on, it doesn’t appeal to me as much.

But seeing the information made you relax?

Yes, I think so. I felt, because I felt I knew exactly what was coming and I just knew, knew exactly what was coming. I know doctors in the past have said that, you know, they tell you what’s happening, it doesn’t quite, it’s not quite the same as seeing little pictures about it and I felt that helped a lot. Something helped me because I didn’t feel quite so nervous.

So you saw it the day before surgery or?

No, on the day, oh I looked at that, yes I looked at it again, yes before I went into.

Into surgery.

Into the pre-op sorry, into the actual day surgery, I looked at it the day before just to get it to refresh my mind again.

Okay so the next day you felt well prepared?

Yes, absolutely well prepared, went in absolutely fine so yes, no problem at all.

The TEPI exercises are good for the early stages of recovery. Five weeks after surgery Sue would have liked to know about exercises to do after 6 weeks.

So you don’t think nothing should be added or taken away?

No, no, absolutely brilliant. The only thing you could do is possibly put a third set of exercises but for later use, not in that first bit, because obviously you can't do, you wouldn’t be able to do it when you first come out of surgery. But maybe sort of like now, I’m a month, five weeks probably after surgery now, it would be quite good to have something that I could extend it, further strengthen you know, just a few more physio bits which I’m sure the consultant will give me when I go in. And maybe that’s the reason they don’t put it on there because they don’t want to overdo things.

Sue describes having a steroid injection. It only eased the pain for a few hours. X-rays showed a build-up of calcium which was causing the pain.

Basically they do it [cortisone injection] with a scan so they can see where they’re injecting it into. They give you some, a little bit of anaesthetic in there and then the steroid goes in. And they tell you it’s going to hurt, probably for two weeks it will, you’ll feel discomfort. It was a little bit, initially it’s quite painful after the anaesthetic will wear away and then it should settle down. 

They say the maximum I think it was a couple of days, I think they said it would be pretty painful and actually that was right. After the anaesthetic wore off it was more painful than normal but not excessive pain. And then it settled down after that. But no difference, no change as far as I was concerned. Other people, that may help other people but it didn’t have any knock on, didn’t have the desired effect for me.

You say that they did it with a scan; can you explain a little bit more?

Yes, you know like an ultrasound scan that you see babies with? So a little bit of gel there and a little machine, a gadget to run across it to see if they could see, what they could see with that was the inflammation of the tendon I think or ligament. I can’t remember which, I’m getting a bit confused. They could see the inflammation in there, which was what was giving me the pain, so they could inject, because of the guided thing with the scan they could inject into the right place for me. So yep.

I had my next appointment come through for probably five weeks after that roughly. It might have been less than that but it’s just roughly. And that’s to see the consultant again to see if it had worked and how it was and everything like that. 

And by me explaining, as I said, it worked initially for about three hours because of the anaesthetic, they, he felt then that he knew what exactly the problem was in there because on the x-ray it wasn’t very clear. You could see sort of like a shadowing, like a little bit of calcium build up in there but it wasn’t definite. 

Sue was disappointed when her phone consultation failed to take place twice. She felt that she wasn’t getting any further with finding help.

They said that the GP, no I think it was the Nuffield [NHS hospital] send you an appointment for the consultation. I think that was the right way round and then you just phone them, well you phone to arrange the consultation basically. I think the GP refers you to the Nuffield [NHS hospital]. The [NHS hospital] then sent me a form to do a phone consultation or to arrange an appointment. 

When I phoned the Nuffield [NHS hospital] to arrange that, they said I need a phone consultation. They set you a time and a date for that to happen and that didn’t happen because they decided, they wrote back to the GP saying I needed an x-ray first. So the first time it was because the x-ray wasn’t there. 

And then the second time was because, when they looked at the x-ray, they thought I probably needed to see somebody rather than have a phone consultation because it wouldn’t have been, it wouldn’t have given, it wouldn’t have done anything more than talking to the GP or anything so.

Okay and did you know who you were going to talk to on the phone?

No, we didn’t. I just knew that somebody would phone me on that day at the time but they didn’t obviously because it didn’t happen.

Okay yes.

Sorry is that confusing?

No, it is now clear because, so that kind of information that I think is important for people to have.

Yes, yeah.

So you took the initiative and you phoned them?

Phoned them straight.

Okay, were you anxious or concerned why they haven’t phoned, or disappointed?

I was disappointed in some ways because I thought I’m not going any further forward than this and it still wasn’t getting any better. And I think probably in hindsight, if they could do anything differently, that phone consultation, either if it wasn’t going to happen then perhaps they could have let me know it wasn't going to happen and why. And that way I wouldn’t have had to make my own appointment to go back to the GP. And then just start, and then I had to start the whole process again because they then had to re-refer me after the x-ray was sent in basically. 

Sue describes what happens at the pre-op assessment. She had lots of tests and saw different professionals. It was well thought out and thorough.

You see a nurse and you have your bloods taken. You have your blood pressure taken, you have a little discussion with another nurse and then have an ECG just to make sure that I was fit for surgery before going, whereas on previous pre-ops I’ve literally just, you just do a few forms and bits and pieces. It wasn’t quite so in depth of all the bits they needed to know. 

But it was very, very well thought out. You arrive and you sit there and somebody calls you and you have a tick sheet to where you’ve been. And you go in and you see one person and they do your blood pressure. And then you go to the next person who is ready for you, and you might wait a bit in between but I was out of their very quickly, I would say I was there for about an hour and a half. And they said allow five hours, so it was very quick.

Okay. So you had all these tests done?

Yes, and you see a consultant. You can see the consultant you saw before and also saw somebody to do with the anaesthetic side of things as well. And they talk to you a bit about, because you have a nerve blocking which that explains as well, the 3D thing [TEPI videos] explains as well. And that was very good, I’d recommend that.

So you have seen the pre-op information on the 3D video?

Yes, yes, and it ties in with what I was, what happened in that 3D.

Okay, did you have any questions; did you ask any questions at the pre-op?

I didn’t because I didn’t need to. I felt it was all answered for me with that and with what people told you as you went through.