Lesley

Age at interview: 58

Brief Outline: Lesley has ankylosing spondylitis (a type of arthritis that affects part of the spine). Despite treatment for this, she continued having pain in her right knee. She had a partial knee replacement in 2014 and is now more active than before surgery.

Background: Lesley is a dental nurse. She is married and has two adult children. Ethnic background / nationality: White British.

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Around 2012 Lesley developed pain in most of her joints, including her knees, arms, legs, neck and back. She was misdiagnosed with polymyalgia rheumatica (a condition that causes severe stiffness and pain) and was given steroids for two years. However, following a referral to a specialist, she was diagnosed with ankylosing spondylitis (a type of arthritis that affects part of the spine). She was then prescribed medication and had an injection every two weeks, but continued having problems with her right knee. She also tried a steroid injection but the pain continued to increase and her knee became more swollen. She recalls finding it difficult to cross the road because her knee would give way, being uncomfortable at night, being unable to bend down, and being unable to do activities with her grandchildren. This began to impact her quality of life and she eventually said ‘I can’t carry on like this’ and went back to her GP for help. 

Following an x-ray, Lesley was diagnosed with osteoarthritis and referred for a partial knee replacement at a specialist hospital. During her pre-op assessment in February 2014 she remembers having blood tests, urine tests, an x-ray and an ECG. She also remembers the physiotherapist showing her some information videos and was told how to access them on the Internet. Lesley found it very helpful to watch these videos with her family and said that they answered all of their questions. She found them very reassuring because she felt like she knew what to take with her to the hospital and what to expect on the day of the operation. However, she thought it would have been more helpful to see the video about the pre-op assessment before the actual appointment. 

In April 2014 Lesley went into hospital to have the operation. She remembers feeling anxious the night before but said that having to wash with hibiscrub (an antiseptic wash) was a good distraction. Before her operation she was seen by the anesthetist who was concerned about her ECG results and asked whether she would consider having a local anesthetic instead of a general anesthetic. She decided that she would prefer a general anesthetic, and later saw her GP who confirmed that her heart was fine. She remembers waking up in the recovery room feeling a bit tired and groggy, and seeing a nurse who told her that her husband had rung to make sure everything was okay. Lesley was given an injection to numb her leg but doesn’t remember being told about this beforehand. She didn’t expect her leg to be numb when she woke up but said the nurses explained more about this when she asked. She also had a drip in her knee. Later that day she was moved to a ward with four other women. 

The following day Lesley was seen by the physiotherapist who gave her some crutches and showed her the exercises that she needed to do. She remained in hospital for three nights because her medication made her feel dizzy. Before she was discharged, the nurse showed her how to change the dressing and how to give herself a daily injection (to thin her blood and prevent a blood clot). She was sent home with her medication and information about the daily exercises that she should do. 

One month after the operation Lesley fell in the bathroom, falling on her knee. She believes this delayed her recovery because it increased the level of pain and swelling, and reduced movement. Despite the pain, she continued to do exercises and the swelling eventually went down. Although Lesley wasn’t back at work at the time of interview because she found it hard to bend her knee, she believes that she is more active than she has been for a long time. She recommends that patients eligible for a partial knee replacement should have it because ‘it opens a new window and improves your quality of life’. She also said that the health professionals were ‘tremendous, friendly and reassuring’.

Lesley watched the TEPI videos at home with family. They were simple, straightforward and it was interesting to see the implants that would be going inside her knee.

When I saw the physiotherapist and she explained that there was a website that I could go on and it would explain the procedure. She showed me how to get on it and she gave me information about how to do it.

When I came home, I went on and had a look with the family. And, yes, it was really helpful and really good. All the questions that I might have had was on the tape. The assessment was on the video, but obviously I didn’t have information before then. But that was good. Each procedure, it showed me about the operation, what to expect. It showed me the part knee replacement as well as the full knee. Because he did, the doctor did explain that although it was only the left-hand side of my knee, I would have to sign for full consent for the full knee. So that was absolutely fine. I was reassured. I knew exactly what to take. I had all the literature telling me how long it would take. One or two days in hospital.

So did you look at the website on that very day then, after you came back, with your family?

Yes, yes. It, and it just looked so simple, so straightforward. Reassured you. You knew exactly what to expect. Even the, saying the doctor would be there, the nurse, the anaesthetist and the sequence of events was really helpful. Because you wasn’t anticipating what’s going to happen next. You knew what was going to happen. You knew what order it was going to happen in as well. So therefore you wasn’t just saying, “Why is nobody talking to me?”

So that was helpful. This is quite new, this, you know, using videos like this that the Nuffield [NHS hospital] are doing. Would you say then that it would be a good idea for every operation that people went in for?

I think so. I suppose people that don’t like to see something cut, and the open wound might not please some people. But in my case I found it, it was interesting to know what was going to be placed inside me, how it was going to be fitted, how it was going to work, the mechanics of it. So now I, instead of just looking at the outside of my knee I know actually what’s inside. Which is good, yes, really good.

Lesley wishes she’d taken someone with her to the pre-op assessment. She was given a list of professionals she’d see but would have liked to watch the video beforehand.

As soon as you went in, you had a sheet telling you who you would be seeing. And then they’d tick it, sign it, just to say that you’d been. So you knew that you’d got like several people to see. Didn’t know how long you would be before you went in. So if you wanted to go to the toilet or anything, I thought that I would go to the receptionist and just say, “I’m popping to the loo” or, “I’m doing this, doing that.” It would have been nice if somebody had been there so that you’ve got someone to chat to. They could have gone and got you a drink while you were waiting. They was there so that you wouldn’t, I felt as though I’d miss a time slot if I didn’t go. So it would have been nice to have someone there. So if I did pop to the loo or just, you know, just out to check the car or whatever or a phone call, there’d be somebody there. That would have been, would have just been helpful.

And you mentioned at that appointment you were told about the video. That you, you know, you could go online and on a certain website and then you would see a little video about the pre-assessment, about the operation and recovery?

Yes.

You were told at that appointment? But you didn’t look at it at the hospital? You came home and looked at it? Is that right?

When I saw the physio she put it on the screen for me. She showed me how to get it and she showed me the procedure. So I did watch. But I didn’t, obviously didn’t know about that before I went for the assessment. So she did show me it. Which I thought was good. And then when I came home, that’s when I went and I looked at the second video, which was about the operation.

Would it have been helpful to see the video about the pre-op assessment appointment? Would it have been helpful to see that beforehand?

It was nice to see. And, yes, if you were able to, it probably would have been.

So if you’d been sent a letter with the appointment for the pre-op assessment --

Yes.

-- and then the web address?

Yes, yes, because people that are on the computer would find that easier than reading what to expect. But I did have a sheet with it all on. I read it all, understood it all. But, yes, it probably would have been nice to see it.

Beforehand?

Yes.

Lesley, who had a nerve block, was worried why she couldn’t feel her legs when she came round. When the anaesthetic wore off, she could move her toes and felt fine.

Then you came round. When you came round, how did you feel in terms of your knee? Any pain? Or could you feel your leg?

No, I can’t remember feeling any pain or anything. It was just the effects of the anaesthetic. So you’re sort of tired and groggy. Wasn’t, didn’t feel too bad. When I went up to the ward and they check things. Because I wasn’t aware that, it’s common sense that they would probably numb you, but I didn’t realise. And when they felt the bottom of my feet and the top of my feet and said, “Can you feel that?” And I’m thinking, “Oh, its like pins and needles” and, “Oh, I’m not sure about that.” And they prodded the rest of my leg and I couldn’t feel anything. And then I realised that I’d had an injection and then that was the reason why it was numb, yes.

Quite a few people actually haven’t been aware of that.

Yes.

So they might have told you but it wasn’t in, it wasn’t in the video, was it? This information about the anaesthetic and how your leg would be for a few hours, a bit numb.

Yes, I can’t remember reading anything like that.

Would that have been helpful?

Yes.

To have had that written down?

Yes, I think --

Sometimes you can’t remember everything on --

That’s true.

the day.

Because you did, ‘was I was told’, was I told and I’ve forgotten? I don’t know. But, yes, I think that would be helpful if you knew. You’d expect it to be numb and you know that it’s going to come back. I mean I still have numbness now round the knee, which is taking its time to come back. If ever it does, I don’t know. 

So then that was on the ward where it was numb? Did it start easing off then? Could you, you know, feel your toes and everything after a few hours?

Yes, yes. They make, they ask you to move your toes. I could move my toes. I could do everything that they asked me to do. Yes, that was fine.

Lesley did the exercises in the booklet 4 or 5 times a day. A video would have been reassuring. She couldn’t bend her knee flat and is now doing exercises to improve this.

The exercises, I tried to do the exercises at least four or five times a day. Because they did say, “Do small amounts often rather than a huge amount.” And you do get a leaflet telling you what to expect two we-, after two weeks, and then four weeks up to six weeks. So I did follow the book and I did do the exercises because I wanted it to get right as quickly as possible.

I think having the assessment in six weeks would have been better than having it in eight weeks. But I’m sure there’s a reason for that. Just to know that I’m doing the right things. Because having the book and speaking to someone on the phone, it would be easier perhaps if it was on the video, showing you the exercises, or seeing someone. Just for that reassurance that, “I’ve been doing these exercises for four weeks. Am I doing them correctly?” When I went for the assessment, sorry, when I went for the last appointment, for the eight-week assessment, I couldn’t bend my knee. I was still 5 degrees off what it should be. And I couldn’t bend my knee flat. So she did give me some exercises that I’m doing now. Which I could have known earlier as I’ve gone two weeks not knowing that.

After the staples and dressing were removed, Lesley had dry skin. She massaged her knee and the top of the thigh with body lotion.

You mentioned that you used a cream on the actual wound?

Yes, when the clips were out and the dressing was removed, I’d got like dead, dry skin on my knee. So I used some body lotion and just massaged. And I massaged the scar as well because I didn’t want any tightness or anything. And then at the top of the thigh I’ve got like a little knobbly bit. And it’s stretch, the, I don’t know, it’s a bit, it looks a bit tight. So I just massage some hand cream or moisturiser cream in there and just keep it moist and just keep massaging it.

The health professionals were ‘tremendous’ and the hospital felt like a hotel. Lesley shared a room with 4 other people and they supported each other.

Is there any message that you’d like to give to the health professionals at all?

Well, I think they’re tremendous, I really do, at the Nuffield [NHS hospital]. From start to finish really I’ve not been that worried. I’ve been reassured. Everybody’s been friendly. The hospital, the three days, nights that I had in hospital, it were like being in a hotel [laughs]. Having meals, and being attentive. And being in a room with four people was very helpful. Because four of us had different things. One had a back problem. I had my knee. And the other had hip replacements. And that was good because everybody was supporting each other. 

And the staff were marvellous. They were friendly, sociable, attentive, did whatever you asked them to do. They, nothing were too much trouble for them, yes. I couldn’t praise them enough. And the doctor’s marvellous. Coming checking, making sure. Come several times just to make sure that everything were okay and there were no problems. And any questions. And you didn’t really have many because, you know, it was all planned out for you. So a success, yes.