Lesley

Age at interview: 72

Brief Outline:

Lesley has had surgery on her back, hip, and two partial knee replacements. She was told at her orthopaedic appointment that the problems in her knee were related to her back, and so a revision knee surgery would not help.

Background:

Lesley is a retired bank worker. She is widowed. Her ethnicity is White British.

More about me...

Lesley has had previous surgeries, including on her spine, a hip replacement, partial joint replacements to both her right and left knees, and the removal of bone spurs in her elbow. After recovering from the partial replacement surgery on her left knee, Lesley realised that the outcome for her right knee was not as good and she could not bend it, for example. Her right knee became “progressively worse” and more painful over time. Lesley says that as she’s become more sedentary, she’s also had weight gain. When she had an episode of sciatica, this caused hip pain and affected her mobility further, adding to her knee problems.

Lesley expects she will need another spinal operation eventually, but the consultant who did her previous back surgery advised her to “get on, live your life” whilst the back problems are manageable. She was happy with this approach until the knee problem worsened and stopped her from being able to do some of the things she enjoys. Lesley would like to travel more, and she’s very involved in her local Women’s Institute group, runs a sewing class, and attends quilting and painting clubs. She explains that it’s frustrating when “you get to this stage of life and I’m fortunate enough to afford to enjoy myself, and I can’t do it” because of the knee problem. She purchased a mobility scooter to make her a “little less limited”.

Lesley has been to the GPs about her knee problems many times. She first went in her late 50s, but was told by the doctor that she was “far too young” for knee replacement. She sought out private physiotherapy but was advised to go back to her GP, by which time she was closer to the expected age of 65. She’s also had steroid injections a number of times. Lesley found herself “going round in circles” as knee, hip, and back specialists each suggested a different body part was the source of her pain and mobility problems. She thinks the different problems have “knock-on” effects for one another, causing more pain and problems with mobility. She thought the specialists within the same hospital would coordinate, but nothing happened and eventually she went back to her GP for another referral. Lesley is frustrated that care and communication isn’t more joined up in the hospital: “Why are they not talking to each other?”

Lesley says there’s a “tick list” of stages that she had to go through before seeing a surgeon about her right knee with a partial replacement, and each step involved extra delays because of Covid-19. For example, she had telephone appointments with a physiotherapist and then was told that she couldn’t be referred to the next stage. Lesley called back again a few months later, hoping the situation had improved, but was again told “we can’t do that”. She had another phone call to go over her knee situation in detail and, a few months later, she was given a date for an appointment to meet with a surgeon to discuss treatment options.

Before the appointment, Lesley felt that if surgery is “my only way out, I don’t see I’ve got any choice”. Her previous operations had gone relatively well but “you don’t wanna push your luck really”. She previously had a complication during her back operation but only realised afterwards “the enormity of it”, which left her with some loss of some feeling in her toes and ball of foot. Lesley was open to the idea of another knee surgery, so she could “take care of myself and get on with my life”.

At Lesley’s appointment, she was told that a total knee replacement would be unlikely to help. Although she found her doctor to be “very pleasant”, Lesley was a “bit annoyed” that he seemed more concerned with her left leg being crooked – even when she tried to move the conversation “back to the one that is worrying me”. Based on the X-ray, the surgeon suggested that the knee pain was related to her back. Lesley felt “relief” that surgery wouldn’t be needed, but she also had some concerns that surgery wasn’t being offered because of waiting list pressures. She would also have liked some more information about the bone spurs visible on the X-ray, which she thinks is why her right knee has less mobility. Lesley was pleased that the surgeon scheduled a follow-up appointment for the following year.

Since her appointment, Lesley has been trying to stay active and carry on with the activities she enjoys. She is having less pain in her knees than she did before, but her pain has increased in her back. She continues taking some pain relief to “take the edge off”, but doesn’t want to increase it any more than this. As her back pain has worsened, she’s become more reliant on a walking stick. Lesley worries that she may need a wheeled walker in the future, but feels “I’m not ready for that; my ego won’t take it”. Recently, Lesley had a bad fall, but fortunately came out of it only slightly sore. She continues to find it difficult to know the source of her pain, as her hip, back, and knee problems seem interconnected. Lesley was recently told a bone spur in her shoulder may require surgery, but she plans on delaying that for now.

Lesley’s knee problems started with swelling, pain and inability to bend her knee.

It was, it was swelling, swelling and lack of movement like a lack of bending. Trouble with stairs. Then it kept me awake at night. And finding a way to sleep comfortably was bad. And just, just the ability to do things, you know? To not break into a run. And you know, crazy things like that.

Obviously getting in and out of low chairs, that was a no no.

Since having a partial non replacement in her 60’s, Lesley’s non-replaced part of her knee has deteriorated.

I think it’s natural progression because I think that I’ve had a partial knee and I was told by the hip chap who does knees and hips when he examined me that it’s - he took an X-ray of the knee just for interest and said that arthritis was coming in the other half that, you know, the outer part of the knee has deteriorated with the arthritis. And that’s probably what’s causing the problem.

The knee was never a great success at the beginning, but I didn't know until six months later when I had the second one done - which was brilliant - just how bad the first one was.

But they said that it’d been left a long time before anything was done. And it was touch and go as to whether they should’ve done the partial or the whole knee.

But they decided to go ahead with the partial because it was done under a trial.

Lesley took co-codamol for many years for her knee pain but it stopped working. She started prescribed painkillers for her back alongside daily paracetamol and ibuprofen.

I’ve got prescribed painkillers from the doctor for the back. But other, along with those, they’re more of a nerve pain relief because obviously that’s what is usually affected. And I take paracetamol through the day.

And at the moment, I’m [also] taking three ibuprofen the doctors told me to take, which of course, then doesn't agree with me, so I have to take an omeprazole.

So, when I get my pills out in the morning, I’m quite horrified by the amount I’m swallowing.

How long have you been taking ibuprofen from the doctor’s suggestion?

Only since the sciatica started in August. But then I stopped. I sort of as it eased off, I stopped it. But when I did this the doctor told me to start using it again.

It’s not something that I don’t take any aspirin-based drugs or anything like ibuprofen for my stomach reasons. There’s nothing wrong with my stomach. I think it’s hereditary.

I know it was the pain mostly and of which I took co-codamol for so many years. It just had no effects really in the end.

It just seemed to be about what they offer to me now and I have to refuse it because it upsets my bowels. But apart from anything else it doesn't work anymore. I think I’ve just become immune to it.

I took a really heavy dose as well. Yeah, and just years and years on painkillers. I think it was in my late 50s that I flagged it up and the doctor said, “That probably needs replacing, your knee, but you’re far too young.”

And of course, I don’t think I went back until I was, can’t remember whether it was 64, 65 to have it actually done. That was already a long time to be on those and I went on for a further, gosh, I don’t know, years, years and years on it.

Lesley has back and knee problems and used a few mobility aids to help. Her electric fold up scooter gave her the ability to go on day trips which she would not otherwise attempt.

I’ve got a walking stick. I’ve got a pair of; my friends describe them as designer crutches [laughs] cause I don’t like the NHS ones. They’re heavy, they’re grey and heavy. When I went for my X-ray for my hip, the chappie in there was lovely and his first comment was, “Oh my gosh. Everything colour coordinated down to the crutches.”

Aw.

[Laughs] He just, he laughed at them. Yes, so I use that. But, you know, it makes me feel like 90, you know, wandering out. I think people think, people have sort of stopped me and said, “Oh, have you had your other hip done?” And I go, “No.” [laughs]. This one playing up at the moment.

And I'm much of the opinion and luckily, we’ve got very active WI with some brilliant ladies. But, you know, we, we live life and go to the theatre. We visit all sorts of places and we do, you know, loads of things. There’s a lot I can’t do lately. That’s sad. And that’s why I’ve bought the scooter so that I’m a little less limited.

With this scooter that I bought and the problems I’ve got, I now have the ability to sort of go along to things that I would never attempt to. Because I think my WI are off to the Tower of London and to see the flowers for the Queen’s Jubilee.

Well, I wouldn't even remotely consider going on that trip, but of course with this gadget, I can. And- and the beauty of it is I’m sure that if I were up there and I needed- I wanted to walk around and I needed it to be safe, I’m sure there are people up there who would look after it for me. I don’t think I’m going to attempt to go into the White Tower, that might be a bit too far, but I’ve been in there a few times anyway but... 

So it’s nice to think that I can do that, but it would be even nicer if I was doing it under my own steam, but hey, my bones aren’t going to repair themselves and there’s only so much surgery can do for them.

I don’t use it other than sightseeing and trips, longer- you know. I walk on a day- you know, it’s-, whatever I need to do during- you know, during the week is- you know, I manage. But the scooter doesn't live in the car all the time, it does live in the garage. But it’s one of these electric foldup jobs, so you just- it just wheels out, folds up, and the electric winch in my car comes out and picks it up and puts it in.

That’s clever; that’s really clever.

It’s brilliant actually. It’s absolutely brilliant. People stop and watch [chuckles]. And then when I press the button on the key and the scooter just opens up, [smiley voice] they’re just quite impressed by it.

During an X-ray on her knee, hip and back, the radiographer made Lesley feel comfortable and relaxed.

I think the welcome, the introducing himself and the person that’s doing the X-ray, they always do that. But he did it just so nicely. Then it helped that [laughs] it helped that he commented, as I said before, I might’ve said before that you know, I was colour coordinated everywhere even down to the very fancy crutches. He was quite impressed.

But then recognised the [city] accent and talked to me and just made you comfortable. I had to lay on the bed rather than have the X-ray stood up. And I did worry whether that would be really uncomfortable. But you can grit your teeth and sort of do it.

But he was chatting to me most of the time and talking and then he’d put the X-ray in place and said, and went round to sort of check and then he came back and he said, “You’ve got an amazing amount of steelwork in your back.”

[Laughs] I have that. So, so he spotted that. He said, “Let’s look at this hip now.” And he was just very pleasant.

Even to when you left, said goodbye, people are friendly, but they don’t normally have the time to do that. It didn't, it only took virtually two, two to three minutes at tops to have this done. So, it was very quick. You weren’t holding anybody up. But it’s just nice when people are friendly.

Most of ‘em are like that. It’s not many especially at the [hospital], they’re very, they’re very friendly.

Lesley usually has an X-ray before going in to see the orthopaedic specialist so they can talk about the results at the appointment.

So, normally, the X-rays are done at the hospital before you go into your interview, and so when you get into your interview, you know, they do go through it. They explain it.

They turn the screen towards you. They show you and point out and talk about it. Let you ask questions. That’s excellent. That’s excellent and [they] show you what the last X-ray was like and then show what, you know, how it’s deteriorated or whatever.

When Lesley spoke to the physiotherapist at the hospital, they decided she needed to be referred to the consultant surgeon as her knee problems were badly affecting her mobility.

The last time I spoke to the physiotherapist and I think that must’ve been in July, June or July. She said, “Right, well we’ll have to refer you this time.”

This was somebody from the [hospital] in that department talked to me, very good in-depth, not just a five minute, you know, thing. They said, “I think something’s got to be done because you’re now caught in this vicious circle. We can’t leave you too long because you’re worried about what your weight and, and movement. You’re becoming so sedentary with this all. We need to see you to, to move forward with something. We can’t go on delaying it any longer because it affects, seriously affecting, you know, how you manage."

Because I said to him, “I live alone. I have to manage. I don’t have, don’t have anybody here, or help, at the moment.”

So, you were quite pleased that they were making that happen then? That they were sending on the referral at that point, after a long wait?

We can’t delay. We can’t delay seeing you any longer. We, we’ve got - the decision has got to be made and try to get you back on your feet. But, but at the time we were talking about that, although my back’s an ongoing thing, it, it was my knee that was limiting for walking and standing for any distance and going anywhere. That was the most worrying part.

Lesley’s GP referred her to the physiotherapist to discuss knee replacement surgery. But she was not put on the waiting list because of the Covid-19 pandemic.

I’ve seen the GP about that knee quite a few times. But what happened was, I got to the stage of having speaking to a physiotherapist, which is the first step through the procedure leading up to an operation that you have. There’s a tick list  that the GPs have to do.

But you go through the list of and ticking off what stage you’re at. And it was decided before lockdown that the knee did seriously need looking at. And I needed a referral. But I needed to see a physiotherapist.

But before I managed to even do that, I waited for the appointment because there is a delay - Covid started.

So, they didn't want to see me. They said, we’ll do it by telephone.

Didn't see how that was going to do anything. But it did, actually because the phone call went quite well and she understood exactly what was going on, and said that, yes, you do need to be referred, but we can’t do that for you because of Covid.

So, she said, “I, I’m gonna give you my name and number. Phone me back when it’s died down. When it’s over. When it’s passed.” I hoped. Because when I phoned after six months because obviously it was dragging on and I knew there was no point in phoning her until you got sort of towards the following summer when hopefully things were improving.

Of course, they, they weren’t, hadn’t improved enough. So, I had the same phone call with her and she still said, “Well, we need to refer you, but we can’t do that now.”

So, I think it’s two years now.

Gosh.

That I’ve been going on waiting for this referral. But they’ve decided I do need to see at least the consultant and have it looked at, X-rayed again and looked at to decide whether they are prepared to do anything to it - but I’ve waited two years already. I expect [other] people have done the same.

After seeing the hip and knee team about her knee pain, Lesley went back to her GP to be referred to the back specialist.

Obviously with all the problems of needing a hip. What happened was that I went to query my knee again after it was operated on when I realised that the first one - the second one - was so much better. I went back and queried the state of this. I think way back, you know?

I saw my own doctor and then I was referred. And each one of them would say that he didn't think that it was my hip; the knee person said he thought it was my hip. The hip person thought it was my back. And I was going round in circles for ages, pillar to post it was.

Until, in the end, you know, one of them said to me, “Well- has your doctor not referred you to a back person?” And I said, “Well, it’s all in the same hospital.” I thought possibly that if you thought it was that bad that you would do it within, in this hospital, that you would refer me to another department.

I had no idea - stupidly, because I don’t have much to do with doctors before that - that I should go back to the doctor to get a referral again. So, but I finally got there and had that done.

I think that’s an important point though because we don’t, as patients, know how the systems work often do we? Or what goes on within them?

Why are they not talking to each other?

Why do they keep sending me in for appointments - hip and knee and hip and knee - and they mention back, and back was really then a major thing?  And it wasn’t until a real collapse of, of this disc [which] then trapped all the nerves down both legs and then that was indescribable. And that went on for quite a few months [clears throat] That pain. So, it was such a, a relief when it was done.

It just seemed odd that you-, but I understand it’s the financial part. You go back to the doctor to be referred because they have to weigh up who has to be seen, who’s more important, you know? Who needs it more importantly than anyone else. You know, they have to put it in, trying to think of the words really. Well on the scale of, of one to ten of those that need it most or those that don’t.

So, it’s the doctor that has the say, or the GP that has the say whether you are referred, and whether you’re put forward for treatment. But once you’re handed over into the hospital’s care for that treatment the doctors really are never involved.

I don’t think I’ve ever involved the doctor after that

Thinking about when you went back to the GP last about your knee, did you know you were having that discussion and the GP was deciding whether to refer you? Did you sort of feel that you were able to get across that it was important for you to be referred?

Yeah. She did, she very much understood that, that this was impeding on me coping with life and that it needed to be referred.

But, you know, I had to go through. Although I’d had physiotherapy, she said, “I’m still gonna have to refer you to the physio ‘cos it’s the route you go through."

I can’t remember the name of the procedure that decides whether you get an operation or not. There’s a tick list that goes down. I know that much by now. And she said, “Well, you’re already at the bottom because you know, we would refer you to a physiotherapist, but you’ve already paid for one of those. So, there doesn't seem a lot of point.”  And especially as, you know, the waiting list for that is abysmal.

Because it would’ve been a wait to see the physio and then a wait again for you?

It would be months. A few months ago. In which case it didn't matter because it’s now been two years anyway.

Lesley’s surgeon advised that her back was the cause of her knee pain, so further knee surgery was unnecessary.

After my appointment at the [hospital] and said that [they] weren’t going to go forward with anything at that stage.

He didn’t feel that I would be of any benefit having a full knee replacement rather than the partial that I’ve got.

But he was very pleasant and I thought ‘well, he’s going to see me again and we’ll see how it goes.' But he said if there was any real major problem between then, that I could go back to him. However, he felt that a lot of my problems come from my back. And I’m sure that is the case.

Weight loss was challenging for Lesley when her mobility was limited. At first she had been able to use a treadmill at home to get more exercise but it became too painful.

I think my biggest dread [is] he’ll say, 'you've put on so much weight, we’re not operating, go away.'

When you’ve lost two and a half stone or something and then I’ll think well, this immobile, I don’t see how long that’s gonna take.

I’ve done, I’ve lost a stone just for my own just ‘cause I wanted to do an extra stone off before I went in for my back operation.

And I did it in the five weeks between seeing the consultant and - no, between my pre op and actually going in for the operation. But that was going down to sort of six, seven hundred, eight hundred calories top in the day, which is pretty hard going.

I dread the thought of doing that again. But I suppose if you have to that’s what it’ll be.

But I really don’t- but I was more active then and so I don’t know what it’d be like with how I am at the moment.

I bought a treadmill in the garage to get exercise and I was using that. I was half an hour a day on that. But I haven't been on that since beginning of August. So, it’s just sitting out there. Which is frustrating.

So I don’t need to walk down the road. I can just go out and get on my gadget, which I’m far more comfortable with. I don’t have to use the crutches, which aren’t, which don’t do your shoulders any good.

On the treadmill it’s much nicer. There’s no pressure on your arms.

I’m finding it more and more difficult to use my walker, you know, the treadmill in the garage; I have to say.