Ged
Ged has struggled with pain in his hips, knees, and back. He thinks there were stages of “ticking boxes” that he had to go through before getting an appointment with a surgeon to discuss his right knee. At his appointment, he was told that he would need a total knee replacement on his right side. Ged had his joint replacement at a private hospital, paid for by the NHS. Ged feels his operation went “very well” and is currently waiting for an appointment to have his left knee done.
Ged is separated and has four children. He is a retired operations manager for a commercial airline. His ethnicity is White British.
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Ged says he is “desperately trying not to let the old man in” but that his health has changed as he’s got older: “going from [age] 60 to 70, things sort of diminished a bit, and then between 70 and 80, they really diminished”. Ged takes statins, medication for high blood pressure, and has wet macular degeneration in his right eye. He was diagnosed with a genetic condition called mineralocorticoid excess, for which he takes a diuretic (water tablet); however, the medication exacerbates him needing to go to the toilet a lot. Ged previously had a surgery called transurethral resection of the prostate (TURP) to treat urinary problems caused by an enlarged prostate.
Ged has had problems with both of his knees, and. his right hip was replaced a couple of years ago. He has cervical and lumber spondylitis but was told that it would be risky to operate. It can be difficult for him to pinpoint the cause and effect of pain in his body, between his hips, knees, and back. Ged has taken paracetamol as other types of painkillers have upset his stomach. He has used different types of knee supports, but one was too tight and caused swelling.
Ged’s right knee had been painful for a while, and then he had an injury whilst on holiday in 2020: “suddenly my knee cracked”. This caused pain and swelling, and he was unable to bend his leg. Since then, he had some falls when his knee gives way. He had to stop activities that he enjoyed, including jive and salsa dancing. The knee pain also put him off walking, and his back pain worsened on his exercise bike. Nevertheless, Ged was determined to keep the mobility that he had by staying active and putting off using a walking stick. He previously had physiotherapy but didn’t find there was enough structure or strictness involved, and he saw no improvement. Ged saw an osteopath who tried to help with his knee before suggesting he should “see your doctor and go down that line”. Ged’s GP put in a referral and gave him some steroid injections. In a later appointment, the GP explained that he was “on the list for a new knee”; the surgery had not been explicitly stated before but he was pleased about this, having had a good experience with his hip replacement before. After a phone call to discuss his medical history and a follow-up letter, Ged heard nothing more about his knee referral for many months. He thinks there were stages of “ticking boxes” that he had to go through before getting the appointment.
Before his appointment, Ged had wondered “what do I do?” if surgery was not an option. He worried that he would gradually be able to do “less and less […] I won’t be going out, [will have to have] an afternoon nap, and all that sort of thing, that you associate with older people”, which he did not want. He hoped that he would be offered knee surgery because he couldn’t “see any other way out of relieving” the problem. He knew “any surgery carries a risk”, including blood clots and ultimately death, but he didn’t “want to think about those sort of things”. He felt it was important to be “more positive […] [that the surgeons] know what they’re doing and I’ll be alright”.
At Ged’s consultation, he was told that he needed a total joint replacement on his right knee. His decision to accept the operation was “almost instant” and he had had surgery “in mind since day one”. After the appointment, Ged had a phone call offering him to have the operation at a private hospital funded through the NHS. He had an appointment at the private hospital and took along paperwork from his previous appointments and scans. Ged had “certain reservations” about going to a private hospital; he had heard that he may not be given full time to recover and would need to pay for medication and mobility aides, but noted that this was “hearsay”.
Whilst waiting for the surgery to go ahead, Ged’s knees, hip and back continued to make things difficult. He found that he increasingly needed to “put my brain in gear before I move” and that managing pain was “easier said than done”. He also highlighted further deteriorations with his eyesight and ongoing prostate problems with frequent urination. Ged saw his GP about the pain and its impact on his mental state, and was prescribed pain relief patches. Ged found that the patches worked well for his back pain. Ged’s GP also made changes to his hypertension medication to keep his blood pressure at a lower level.
Ged hoped that his knee surgery would reduce his pain levels and allow him to enjoy his retirement more. He had “quite an easy time with my hip” in terms of recovery, but expected the knee to be more difficult based on what his sister said about her own experience and the fact that he’s a few years older now. Before surgery, Ged had two appointments with the consultant which included a pre-operative assessment and a Covid-19 test. Ged found the travel to and from the private hospital difficult, as it was an 80-mile roundtrip. Ged received a booklet from his consultant with the details of the surgery, and the potential benefits and risks involved. Ged was also put on a waiting list for hydrotherapy (a programme of exercise in a swimming pool), but the date of his surgery came around before he was given a place to attend.
Ged feels his surgery went “very well”. He was put under with a general anaesthetic for the operation, and his wound was closed with glue instead of stitches. He spent two nights in hospital, during which time a physiotherapist visited him a few times to see how he was doing and teach him exercises. Ged had swelling and bruising from his knee to his ankle in the first days after surgery, but was able to walk with crutches within three days of his operation. The hospital prescribed painkillers and instructed Ged to complete the course, and Ged was not allowed to use his pain patches in the weeks right after his surgery. Ged had a two-week post-op check-up at his local surgery, then returned to the private hospital for a consultant visit six weeks after the operation.
Ged feels his knee has healed “absolutely brilliantly”. Despite his worry that the knee surgery would be more difficult than his hip replacement, he says his recovery “wasn’t as bad as I was expecting it to be”. He felt he knew what to expect with physiotherapy because of his previous hip surgery. Ged found his mobility improved quickly after his operation, and was back driving six weeks after surgery. He has not resumed use of his exercise bike, but this is because it is too cold to ride the bike in his garage at the moment. Ged no longer has pain in his right knee, and he can bend and move up and down stairs with no problems. Unfortunately, Ged feels that his knee surgery has revealed that the majority of his pain is a result of his back problems. Because surgery is not an option for his back, Ged hopes to manage this with painkillers and the pain patches.
Ged is currently waiting for a surgery appointment for his left knee, which he says is “not far behind” his right. This surgery will be done at a different private hospital even further away, but will also be paid for by the NHS. Ged will be having a partial replacement. Because Ged has split up from his wife in the time since his right knee surgery, he worries about who will be able to help him during his recovery now, as his other family do not live nearby. He does not feel he will do anything differently with this next surgery, but wishes he could have had more say in which private hospital was doing the operation.
Overall, Ged feels the replacement of his right knee has exceeded his expectations. When asked to give advice for others considering an operation, he said: “Just be prepared for the pain, but it does get better […] Persevere [with the exercises] and it’ll be fine”.
Ged had back, hip and knee pain. The surgeon told Ged that it was his hip that was causing the pain he was feeling in his knees.
Ged had back, hip and knee pain. The surgeon told Ged that it was his hip that was causing the pain he was feeling in his knees.
The pain in the back goes up and down. Well, it even went down my arm as well. But I presume, you know, things have related with the hip, back and the knee. So, anyway you have to, you know your limitations particularly ‘cos I used to walk. I used to like walking. But I can only walk on level ground now. I find different gradients really demanding, up or down. And I can walk say 50 yards and I can feel the pain across my back, lower back. And obviously the knee. I don’t know whether the knee’s causing problems up into my hip or whether the back is causing problems down into the knee. But the only thing I have noticed is my, this my right knee, my left knee is not far behind. I’m beginning to feel things in my left knee now.
The hip got far worse than the knee and that’s how it sort of started. Funnily enough, when I went to see the consultant about my hip, I was in the room and I was laying on the couch thing there. And he went down the end of the bed to where my feet are. And he looked at me and he said, “Oh, that’s your hip.”
Oh, interesting.
And I said, “How d’you know that?” He said, “I can tell by your knee.”
And I thought ‘amazing.’ [laughs].
Yeah, that is incredible.
Yes, so he did the hip and it was pretty good. But of course, now the knee’s caught up and unfortunately looks like the other knees catching the other knee up, so here we go.
Ged put his ‘brain in gear’ and thought about the way he was moving, especially going up and down stairs. If he didn’t, he would have pain.
Ged put his ‘brain in gear’ and thought about the way he was moving, especially going up and down stairs. If he didn’t, he would have pain.
The problem with the knees, because I’ve had them so long, the issues that I’ve got with knees, is you- I tend to say, I put my brain in gear before I move—and if I do that, then I know I’m going to be all right. Like I- if I go to come up the stairs, if I walk through the hall and go straight up the stairs: no, I have to stop and say ‘okay, I’m going upstairs now’, and, you know, I’m okay with my knees.
And the same with going down, I just can’t get to the top of the stairs and walk straight down, I have to stop and say, ‘okay, I’m going downstairs now’, and take it step-by-step.
You know, it’s one of those things that I still know that if I do something out of kilter, or something like that, I’m going to get a pain, like sometimes laying in bed and I turnover and say my foot gets caught in the sheet or the duvet—and doesn't go with me, the pain is excruciating.
So, over the period of time you get to learn to- how to manage so you don’t get that situation. I mean anything-, I can’t move out of the way quickly, like, you know, if my wife says, “Oh, excuse me, I just want to get to the cupboard,” I can’t do it instantly, I have to say, “Okay, I’m going to move now,” and do it.
Yeah.
And the pain what- where the pain is- wash hand basin in the morning when I shave, if I’m standing up and the pain across my back is quite bad so I have to sit down now and again and then carry on sort of thing.
Before knee surgery, Ged could hear ‘clicking’ in his knee all the time when going about his day.
Before knee surgery, Ged could hear ‘clicking’ in his knee all the time when going about his day.
I recognise now that I know my muscles are not where they were. ‘Cos the other thing I was able to do was I’ve got an exercise bike and that was good and I have that, I’ve had that a long time. But then, of course, sitting on the saddle causes pain in my back, despite the fact I’ve got a gel saddle and all that sort of thing, you know. It’s not in my legs. The pain is in my back. And then, what with the knee going on that started paining me when I was cycling. And I could hear it, you know, it’s clicking away, clicking away [laughs].
It’s talking to you all the time. And you know, I just feel my left knee is gonna be like that soon. But my right knee now is, it, I can hear it all the time. You know, you’re getting it, especially if you get in a delicate position and crikey does it crunch. It’s like you can-, putting your trousers on. You know, you stand on one leg, put down one leg, because if I stand any time on my right leg, it’s graunching away [laughs].
Gosh.
It’s a horrible feeling really. It’s graunching away while I’m staggering to put the other leg in there. So yeah. Minor things like that, a bit irritating.
Ged’s prostate problem worried him a lot, and the pain from his spine was more impactful than his knee pain.
Ged’s prostate problem worried him a lot, and the pain from his spine was more impactful than his knee pain.
Well, I suppose the top one at the moment is the prostate. I hope that settles down [laugh], that’s-. I suppose the thing about, the one that I have in my mind is my back, my spine because the consultant there said to me, he’s very, very reluctant to do anything with my back. Because I was able to manage with the pain, they didn’t want to do anything, ‘cos he said the risks are too high. He said, “If you’re in actually excruciating pain-,” then they would do something. And he said, “Even in your case, I don’t think injection into your back would be any good.” So, he said, you know, “Just leave it as you’re managing it” he said. “But if it does flare up or get any worse then-,” I’d go through the GP and he would see me again. So, I suppose the spine is the major one, the pain sort of thing.
But, you know, [laughs] you know, you know, I’m 80 in a month or so’s time and I think ‘god, you know, 70 to 80 is bad, I wonder what 80 to 90 is gonna be’. But okay, you know, that’s life, that’s the way it is. I can’t afford to do anything private to get it done quicker. But no, we are where we are. And I just get on and deal with it. I try as best I can. As I said to you just now, you know, the old man is getting in I’m afraid, desperately trying not to.
Ged’s concerns over his health were at the back of his mind all the time. He tried “not to let the old man in.” He says it’s important to talk to your doctor if your mental health is suffering.
Ged’s concerns over his health were at the back of his mind all the time. He tried “not to let the old man in.” He says it’s important to talk to your doctor if your mental health is suffering.
Well, I was, what shall I say, fairly fit. Able to do most things since I retired at 60. But going from 60 to 70 things sort of diminished a bit, and then between 70 and 80 they really diminished. So, it’s been a long 20 years in some ways. ‘Cos I was able to dance, jive and salsa and that’s how I met my now wife.
And when the hip started that impeded me somewhat, especially the salsa dancing. And then I get the pain with the knee and that really finished me off completely.
Well, I think with me, I know it’s a very individual thing, mental health, but I began over the period of - sorry, I began, you know, with all the- a bit blasé about it all, but then I realised that, you know, in the back of my mind all the time was ‘oh my God, my eye’s going to go, I’m going to get blind in one eye and what happens then?’ you know?
And like the prostate issue, ‘oh my God, I’m going to have to wear the bloody things all the time’ and you know, on top of the main issue which was my knee and my back.
And so, it does play then, and you know, I’m- I mean I retired when I was 60. 60 to 70 was absolutely perfect, I didn’t- you know, have a lot of issues at all. Between 70 and 80, my God, I went downhill pretty quick [laughs].
I- and I’m thinking ‘what on earth’s going to happen between 80 and 90?’
You know, and there’s- that’s the mental side, it’s in the back of your mind all the time—but it- you don’t- I don’t want it- I want it to stay there, I don’t want it to come to the front of my mind.
But I suppose what I’m basically saying is, you know, all those things combined, do play on your mind a bit, you know, and so there’s some things that I’m not able to do with my wife now, you know? I used to love walking the dog, which I can’t do now.
And she likes to be active herself and she’s actually gone back to ballet classes, would you believe?
Oh, that’s lovely.
Yes, I know, it’s brilliant, and then if you've seen a 70-year-old ballerina then—I’ve got one.
[chuckles]
So [chuckles] yeah, and she’d gone back to playing badminton—and she does those sort of things, I think because we can’t do what we used to do, you know, we used to dance and all that together, etc, etc.
So yeah, that’s- you know, that doesn't- it doesn't worry me, but it is a concern, you know, that I’m getting older than what she is quicker.
I think you need to try and get to see your GP because that conversation I had with him per- face-to-face this—this past week, last week, was so important to me and I think it was to him, so, you know, if you’ve got to a stage where you're not thinking things are happening or things are not going your way, or you’re not able to do things, or you have things at the back of your mind, you need to talk to somebody—and that’s not over the telephone.
Ged’s private osteopath advised him to see his GP when treatment for his knee did not work.
Ged’s private osteopath advised him to see his GP when treatment for his knee did not work.
Anyway, the last night, we thought ‘Okay, we’ll give it a go’. We hadn’t jived for a year or more. So, we were going great guns. Absolutely great guns. Then suddenly my knee cracked and went, “Oh my god, what was that?” And that was it. That started me off on the path of going to the doctors initially. And then I had a couple of bad falls. It just gave way, it wasn’t there, and finished up with an x-ray and got a referral. And that was in the August 2020 and yes, I’ve been sort of waiting since for the knee.
And so, it was quite soon after you came back from holiday that you went to see your GP about the knee problems?
[Inhales] Yes. It was, I remember, ‘cos I started going to see an osteopath for my back and I must admit he was very good. And he told me, more or less where the problems were in my spine before I had the MRI scan.
Oh right, wow.
And I was, you know, when I gave him the MRI scan and [name of osteopath], I think he said, “My God,” he said, “I’ve never seen such a detailed report in all my life.” He said it was brilliant. ‘Cos it itemised the whole of the spine down, which was good. However, I went back to him with my knee, told him about my knee and all that. Anyway, I had a couple of sessions with him and he said, “Look, it’s not responding to anything.” He went, “You have to go and see your doctor, and go down that line.” And that’s how I, what happened.
Ged “spent quite a bit of money” on knee and back supports but had given up on them.
Ged “spent quite a bit of money” on knee and back supports but had given up on them.
I’ve spent quite a bit of money on supports and things for my back, you know, across the shoulders and down there, and I spent, oh, thirty-odd quid on one of them and it- all it did was swelled my ankles up.
So- and, you know, he- like the doctor said, well, the one you've got it’s probably the best one that it’s not overly tight, but it does allow movement, but he said, “No, stop using it,” so I’ve given up on all that sort of stuff.
Previously steroid injections worked for Ged but more recently he had three injections which “haven’t done anything at all” and his knee had worsened.
Previously steroid injections worked for Ged but more recently he had three injections which “haven’t done anything at all” and his knee had worsened.
Yes, I had one in in that knee years ago when I was, lived in [town]. And I went in there and had the injection, came out and I thought ‘this is good. I can’t feel a thing’, you know. It was absolutely fine. It was brilliant. On this occasion now, with my right knee, the first one the doctor gave me it didn’t do anything, it didn’t do anything at all. I think I’ve had; I think I’ve had three altogether. And no, they haven’t done anything at all. Steroid injections in my leg. But it did initially, years back because I suppose years ago, my knee wasn’t in such a bad state that it is now. And the steroid injection helped. As your knee gets worse, it degenerates and what have you, so on and so forth, steroid injections don’t work.
Ged has back, hip and knee pain. He did not find physiotherapy helpful before surgery. He had exercises from a private osteopath which he found beneficial and “easy to do.”
Ged has back, hip and knee pain. He did not find physiotherapy helpful before surgery. He had exercises from a private osteopath which he found beneficial and “easy to do.”
Well, physiotherapy yes, they gave me a few exercises, which yeah, I can do and I did. But I didn’t find, find them too beneficial in as much as that it wasn’t rigid enough for me. And that’s why I went to the osteopath. And he gave me-, well apart from how he manipulates your back and everything else, I found it was quite, quite a relief. I know it’s £40 odd quid a time, but I found that very beneficial when he gave me three specific exercises to do.
Okay.
Which I found very, very beneficial and easily to do, easy to do. Didn’t need any equipment for it or anything. It’s good.
Ged had an X-ray and a telephone conversation with an Extended Scope Practitioner at the hospital and received a letter afterwards advising referral to the knee team.
Ged had an X-ray and a telephone conversation with an Extended Scope Practitioner at the hospital and received a letter afterwards advising referral to the knee team.
I went and had an x-ray and then got the referral. So, I had a telephone conversation with [hospital], I think it was about the August 2020. And I got the letter back, it just said “Refer to the knee team,” like an opinion you see and I thought ‘yeah, fine, okay, that’s fine’.
“He’s 78-year-old man and a worsening right knee, despite conservative measures, is now at the point where he feels he would consider surgery. His x-rays are not too severe, but his pain and functional limitations are”. I mean we’re a year on from this.
“We have had a frank discussion regarding the risk versus benefits of knee surgery, and that knee surgery will not solve his spinal issues.” I’m aware of that. “I’ve advised him to continue his own exercise programme and exercise bike, and he can have a look at ESCAPE-pain Online,” which I did, “For further exercise education. He is aware of the long waiting times. I would appreciate your opinion”.
Okay
And that’s it. And then all it is at the top of the letter, it says, “Oxford score 14 over 48”.
So, was that a letter that was produced after you’d had that phone call, or that letter-?
Yes, it was.
Oh, it was, yeah.
From the consultant, yeah. It’s from the Extended Scope Practitioner.
Anyway, I had a couple of instances with my knee since and I went back to the doctors again and I’ve had two or three steroid injections and it hasn’t basically done had, had any effect at all. And then it was still giving out, the knee gives out and, you know, you’re very conscious of going down stairs and steps and what have you that you hang on tight. And he then said to me, the doctor when I went to see him one day, he said, “Oh, well you’re on the list.” I said, “What list?” He said, “You’re on the list for a new knee.” And I said, “Oh, am I?” He said, “Yeah, it’s in the letter.” I said, “Well, it just says ‘refer’.” “Yeah, yeah,” he said. “But you’re referred”. But he said, “At the top it’s a scale.” And he called it the ‘Oxford Scale’ believe it or not. And it was 14-, I think it was 14 over 58 if I remember rightly. I said, “Well, that’s not very high, is it,” you know.” He said, “No, no, it works the other way”.
The lower the score, the more critical you are. He said, “So, you’re on the critical list,” he said, “Between one and 14, it’s critical”. I thought, ‘Oh’ so that’s basically it. And I, you know, I’ve been with that mode ever since.
Ged took part in a clinical trial about robotic-assisted knee alignment for his total knee replacement surgery.
Ged took part in a clinical trial about robotic-assisted knee alignment for his total knee replacement surgery.
Okay, well, I got call from the hospital to say would I be willing to go for- into trials for a CT scan on your knee prior to having an operation.
I said, “Oh, that sounds interesting,” she said, “Yes,” I said, “What’s that all about?” she said, “Well, we’re finding that people with- have a knee op and they get a lot of pain,” and they say that during the operation is when they’re doing the operation, they get your knee and they line it all up straight, basically.
But they’re saying that the- because of that, because over the years, you know, you're walking around waiting for an operation, your knee goes out of a different alignment.
So, they want to check the alignments, so it could be a thing of the future, they actually don’t put it back straight, they leave it where it did sort of grown into.
So I don’t know what’ll happen to that now I’m at this [private hospital network] hospital, I don’t know where that’s going to be done or not.
Oh, that’s interesting, it sounds like an interesting study.
Ah, yes, it- yes, and, you know, well you, because they have to ask you because if there’s additional radioactive measurements taken or something.
So, they ask you if you're willing to do it, and I said, “Yes, of course I am”.
Ged's mobility improved quickly after his total knee replacement surgery. His pre-existing back pain still affects how long he can walk or stand for but surgery has exceeded his expectation.
Ged's mobility improved quickly after his total knee replacement surgery. His pre-existing back pain still affects how long he can walk or stand for but surgery has exceeded his expectation.
Well, I was able to walk from, you know, about three days after, four days after the op I could walk with crutches, and that just gradually improved quite quickly really. I think by end of June, beginning of July, I was walking quite unaided.
In fact, the six weeks after the op, you know, I was back driving again.
I'm able now to walk up and down the stairs normally, whereas previous to it all, I had to go down the stairs one at a time and hang onto the rail, but now I can go up and down stairs without holding on at all, so, it’s improved greatly.
Well, it’s as I expected it to be.
I haven’t fully got full use as I-, you know, I can bend my knee and both upright, but with my right knee it’s not a pain at all, it’s like the skin of my knee feels tight,—that’s all, you know, and I shall have to-, yeah, I can get down and put my shoes on, and all right now, and bend down and do that, and get up again without, you know, struggling.
So, I suppose it could say that it’s exceeded my expectations at the moment.
Ged’s pre-existing back pain still affects standing and walking after his knee replacement surgery.
Ged’s pre-existing back pain still affects standing and walking after his knee replacement surgery.
Well, it was the back before that was always the issue, where I got the pain, between my hips, so no that’s more or less the same.
But obviously the patches do obviously take some of the pain away, but it’s primarily taken the pain off my back, but that is what I have to stop now, I can't-, I find it very difficult standing, like you stand at the kitchen sink, or I stand do any ironing, I can't stand there too long because the pain comes through and I have to, you know, sit down, and then stand up and carry on again. And it’s like that walking, and I still sort of walk okay, well I walk quite normally, but then I get this pain in my back so bad, I just stop for a while, and it goes off and then I carry on again.
Ged explains that his healthcare professionals could not access tests from other hospital trusts which led to more X-rays being done.
Ged explains that his healthcare professionals could not access tests from other hospital trusts which led to more X-rays being done.
I think once I’d seen a consultant at the [hospital], I'll stay there because the thing is about the things now, is the fact that I thought everybody could see everything about your-, like I'm talking about X-rays now, but the guy at [hospital], when I went first time, he couldn’t access the X-rays I’d had, and there was a lot of confusion because he said, “You're at [town],” and I said, “Well no, but I had the X-rays at [town],” “Oh,” he said, “I can't find them at all on the system,” so I don't think their systems talk to one another like they're allegedly supposed to do.
Because when I go on-, next time, I've had had the X-ray from when he did it, and they're I'm going to-, well, the first thing I do when I go for the appointment in January, is he’s going to X-ray it again, but he could have used an X-ray that I had done at [town], but he couldn’t find it, or couldn’t get it.