Stuart

Age at interview: 79

Brief Outline:

Stuart began getting pain in his legs two years ago. There were delays with his referral to see a specialist and the problems worsened. Stuart was recommended a partial knee replacement surgery with the potential for a total joint if needed. Stuart went ahead with partial replacement surgery on his right knee, which he feels was successful.

Background:

Stuart volunteers for a local hospice, and is also a retired maintenance worker and car mechanic. He is widowed and has children. His ethnicity is White British.

More about me...

Stuart began getting pain in his right leg about two years ago. He thought the problem was related to decades of being on his feet as a maintenance worker and car mechanic. The pain was not only in his knee, but also his whole leg and ankle. He had a constant sharp pain at the sides of and inside his knee, and the leg was “permanently swollen from the ankle to the top”. He thought having more pain was “one of those things” of “getting older”, but it continued to get worse: “When I first saw the doctor [about my leg], I didn't expect to be in the state I am now”. The pain also made it difficult for Stuart to sleep at night. He had some prescribed painkillers but preferred not to take them unless he absolutely had to. Stuart currently takes statins, aspirin, lansoprazole and ramipril, and has blood tests every six months. Since his wife died three years ago, Stuart feels he has been “not in top form”. He lives alone, and does all his own shopping, cooking, cleaning, and gardening.

Stuart says that at first his right leg was painful but manageable, so he and his doctor decided to “see how you go”. As the pain became worse, he tried a cream and corticosteroid injections, but neither helped. He had some x-rays taken and had a telephone call with a physiotherapist. He also had some exercises to do, but Stuart found these made “no difference whatsoever”. Nothing more came of a follow-up appointment and so Stuart returned to his GP who looked into it. Stuart was then contacted by a physiotherapist and went through the same discussions. Once again, Stuart heard nothing more and he mentioned it to his GP at a routine appointment who chased it up: “by the time I got home [from the GP appointment], I had a new appointment with a physio”. It was during the phone call with the third physiotherapist that Stuart was told there had been an error and that the previous person he had spoken to had forgotten to refer him on to specialist joint services.

Going into his appointment with an orthopaedic specialist, Stuart was unsure what to expect. He didn’t know if they would offer any treatments, or might say to “keep taking the [pain relief] pills the next couple of years”. Stuart wanted to know whether the specialist thought the issue was with his knee or with his overall leg. He had been hoping that a knee replacement wouldn’t be necessary and Stuart would have preferred not to have to spend any time in hospital, as it reminds him of upsetting times when his wife was having treatment before end-of-life care. Although Stuart was disheartened that it took such a long time for him to be seen by a specialist about his leg problems, he recognised that many people have also had delays with their healthcare because of the pandemic.

The surgeon recommended Stuart have a partial knee replacement with the potential for a total joint instead if required during the operation. Stuart discussed with the surgeon his concerns about living alone and falling. The surgeon told him that the wait would be around nine months, though Stuart suspected this would be pushed back because of Covid-19 and lockdowns.

Whilst waiting for a surgery date, Stuart had issues with vertigo and his blood pressure. When the vertigo started, Stuart called 111 and was prescribed tablets which were helpful. He was also in touch with his GP, who requested some follow up tests regarding his blood pressure medication. As time passed, Stuart also noticed that his right knee became less stable. He was disappointed that his knee was holding him back from social activities like playing golf. He also became more dependent on his daughters for help, as he was struggling with driving and needed a stick when walking. He tried to keep active as he felt strongly that “you can’t just lay down and say ‘I’m not going to do anything’”. He hoped that having his knee joint replaced would also improve his mental wellbeing.

For Stuart, it was an “obvious” decision to have knee replacement surgery as he couldn’t “carry on the way I’m going”. Stuart suspected that the delays in receiving a surgery date were partly to do with NHS bureaucracy, and he was frustrated given the money he has paid into the NHS over his lifetime. He felt that receiving an occasional update call from the hospital would be appreciated by patients in similar situations too, as a reminder and reassurance that “we haven’t forgot you”.

After an 18-month wait since his initial referral, Stuart received a date for surgery. On the day of the operation, Stuart was extremely frustrated that he was kept waiting for seven hours with no updates after his procedure was delayed twice. Later that day, he had a partial right knee replacement and the operation was filmed for future training purposes. Stuart was put under general anaesthetic, and the cut was closed with glue instead of stiches. Stuart was happy to be allowed to go home on the same day on crutches.

The first few days after surgery were very painful, but Stuart thinks he should have taken more of his prescribed pain medication as directed. Stuart also had to give himself injections in his stomach. His daughters stayed with him for the first week to aid his recovery. When he was discharged from hospital, Stuart was given a pamphlet of exercises to do for his knee. After a fortnight, Stuart was able to walk up the road with two sticks. Gradually, this decreased to just one stick, but Stuart does not like using it because it makes him feel older. Stuart was able to get back to driving after a month and no longer takes any painkillers for his knee.

A month after the operation, Stuart had a check-up with a physiotherapist in hospital and he was given the all-clear. At six weeks, Stuart saw the consultant for a follow-up who confirmed that his knee was healing nicely. Four or five months after the operation, Stuart began having pain in the centre of his knee, but fortunately this resolved itself. Stuart was “a bit disappointed” as he expected recovery to be a bit quicker and he finds that he still does not have as much flexibility in his knee and upper leg.

Recently, Stuart has been having problems with his left leg. This is disappointing because he feels his right knee has mostly recovered from the surgery, yet he is still left with problems walking. Stuart finds it embarrassing because he thinks he looks “drunk” when walking along the street. After his GP noticed that his left leg was “flipping out[wards]”, Stuart was referred to a geratology service who ran some tests to rule out a Transient Ischaemic Attack or TIA (sometimes called a mini stroke). Stuart is waiting for the outcomes of these tests.

Overall, Stuart thinks that his right knee replacement surgery was “definitely” worth it because he can now drive and walk without pain. He is looking forward to getting back to playing golf when the weather improves. When asked if he has any advice for other people considering knee replacement, Stuart felt that recovery might be easier in the summer months and he encouraged people to do their exercises, because “the more exercises you can do, the quicker you’re going to get better”.

Stuart’s pain and swelling in his leg had worsened and become more constant.

And now, I’ve got to the stage where my knee, my leg now is permanently swollen from the ankle to the top.

When I took early retirement I was 57 and then four of us started playing golf.

Not very good at all – useless. But it’s fresh air and exercise. Since the knee problem it’s not been too bad. I can live with it. But then we had the lockdown, of course, so you couldn't do, play golf or do anything, so sat on me backside.

I put nearly half a stone on, which is not good ‘cos you’re in a Catch-22 situation there whereas if you got bad leg yeah, bad, but you sit down on your backside doing nothing, you got chance of diabetes coming in or other illnesses because overweight. Certainly, we started going back to golf. I lost a bit of the weight. We used to play twice a week, 18 holes.

But in the last four months, I cannot do 18 holes now because if I do, I can hardly drive my car home because my leg is so painful and on top of that I, I can’t bend it. I can’t bend it and put shoes on.

In that, maybe like that then for two or three days then rest and then it goes off. The last time I played golf was last Tuesday. I only played eight, nine holes. I got in the car to drive home. I can drive, don’t get me wrong, but the pain was there all the time.

And it’s now got to the stage that some nights I go to bed I can’t hardly sleep because the pain’s there all the time. And the pain is not my knee. It’s there in my leg. It goes onto the back of my knee and it goes into my ankles.

Stuart went back to see his GP when his knee symptoms had worsened.

I’ve had two X-rays. I mean one was about, I don't know, a year, 18 months ago. It said a slight arthritis.

I had another X-ray ‘cos I said to my doctor, “Well, we'll get another X-ray on your knee.” So, I had another about a month ago, three weeks ago. And he turned round and said that, “Yes, it’s still arthritis, but not, you know.”

And he seems to think it’s not that bad. I said, “Well, see the prob-, I live on my own now, which is obvious. And I’m scared I’m gonna fall over in the shower. I live in a small house and the shower you couldn't get two people in in my bathroom- then I’m gonna be left there because no one’ll know I’m there."

I mean I’ve been with the same surgery since 1942. Mind you, it’s changed with a lot of different doctors as well. But I’ve always, I mean, like I say, I’ve been lucky with my health because I haven't used the doctors hardly at all till the last say the last ten years sort of thing. So, again, getting old. But, yes, he’s been very good with me.

My GP, I would say is one of the best I’ve ever had. I mean like I said, I’ve been there since I was born, so that’s nearly 80 years ago.

He’s caring. He tries to look after me.

Stuart thinks you can become reliant on strong painkillers. He only took painkillers when he had to.

The doctor’s given me some painkillers which I don’t- I’ve only taken a couple of times; I don’t like taking them because [they] can be addictive and I’m trying to stop- I take paracetamols and I take Ibuprofen.

And do you take that regularly or is it only if your knees really play?

Only if I need it—I mean I’m not-  I take- over the period when I told you I had this- my giddiness and all that, I was taking—paracetamols nearly every four hours because I was just- well, I was like a zombie.

But like Saturday afternoon, I took two Ibuprofen tablets because, you know, the pain was too bad.

And that’s it, I don’t like, you know- I take heart pills, and I take stuff for my stomach, and I take Aspro, that sort of thing, so I don’t like taking too many pills unless I have to take them.

Stuart was referred from his GP to the physiotherapist. He was not referred to specialist joint services for nearly three months because of delays.

My doctor triaged me last October to, well not your department, the [intermediary referral service]. That was nearly a year ago.

I had a meeting-, no I didn't. I had a phone call - over a year, just after that year. That year from the lady who turned round and said, “Can you do all these exerc-?” I said, “Look, I’ve got no problem doing all these exercises, as you’re saying I can do all that.” “Well, we’ll have to try and see you.”

That went on until after this-, into the new year. I went and saw the doctor again and he said, “Well, I, I have triaged you. I will send an email and get my surgery to send an email to see what’s going on.” So, they did, which was brilliant. I had a message come through, yes, I got an appointment to go to [town] to see a lady there.

I went to [town] and she looked at it, she said-, as the GP said.  I said, “I can do all that.” I explained all the situation again. And she said, “Well, better refer you to hospital.” So, I said, “Well, you’re supposed to have done that when I spoke to you.” She said, “Well, I haven't seen you before. Now I’ve seen you I can see how it is, so I will refer you.” That was two months ago.

I went to the doctor again on this six-monthly trip, what I always do, which is brilliant. Told him what was going on and said, “I’ll email them.” So, he emailed them again. By the time I got home, I had a new appointment with a physio I think it was from [hospital].  He spoke to me, a nice gentleman. I said exactly the same and he said, “Well, I can’t understand that. Why didn’t my work colleague do it to you? Hold on, I’ll find out.” And he come back and said, “She forgot to do it.”

Oh no.

She said she forgot to refer me. So, he did and within a week, I got this appointment for 22nd of October.

It’s a pity that people over at [town] didn’t put my name forward otherwise I’d have had it done quicker than what I did because that was nearly three months before I saw someone again to push me through, one from [hospital] pushed me through to have it done.

Everyone’s got a job to do, and if people don’t do it other people suffer.

Had you wanted to be referred to see a knee specialist sooner or was it about right for you?

[sighs] How can I say? I don’t- I’m not a medical man, am I? So, I can’t really say.

To be fair he tried the ointment first: didn’t work. He tried the injection: that didn’t work. I suppose he give it time and then it went from the other way, so —in- since last, what’re we talking, over a year ago, he’s deferred me.

So, I mean I’ve been waiting over a year to see if I- like I say, I keep coming back to that [town] one again, but if she’d have done her job properly, I’d most probably- well, I might have been in by now.

Stuart feels he should not have to pay for his knee operation to be done privately as he has paid his national insurance for 65 years and had little need for healthcare up until now.

And I don’t see why I should have to do that when -  like I go back to what I just said to you again: I paid since, what, that’s 65 years I paid into the National Health in some form or another.

And I don’t see why I should have to pay another seventeen thousand, or whatever it is, to go private.

And there’s not many people when you think a working-class person could find £16,000 - £17,000 to have a knee operation, or any operation, and the person what’s doing it would be the same person what would [have] done it if it was on the National Health.

After looking at his X-ray and his knees, the surgeon told Stuart that he needed knee replacement surgery.

And so, when I saw-  as soon as I sat down - he looked at my knee and he said, “Oh, yeah,” looked at the X-rays and straightaway he said, “Yeah, it looks like you’ll have to half a knee.”

Said- no, I mean there [was] no, ‘we’ll try this, we’ll try that,’ it was just- 

And he just asked me "where do I live, do I live on my own?" Blah-blah-blah. I said, “Yeah, I live on my own, but my daughter-”  So if it comes to it, they’ll come and stay the night so I didn’t have to stay in hospital.

Now I told you - I said to him, “Well, what’s the waiting list?” And he said, “Well, it was a year, but it’s now down to nine months.”

He told me if- if you have an operation what it involves, you know, you might- this might happen, that might happen, “Do you agree to it?” I said, “Yeah, I agree to it, It's obvious, I don’t want to go- I’ve got no option, I’ve got to have the leg, it’s got to be done, hasn’t it? I can’t carry on the way I’m going."

And he just said, “Okay, we’ll put you on the list and we’ll get in touch.”

And that was now nearly, well, it will be nine months next month, wouldn't it?

Not knowing when he would get a surgery date was worrying for Stuart. He lived alone and had new health problems on top of his knee issues.

I knew I’d had to have a knee; I mean because the way my leg was it’s obvious that I mean there was something wrong with the knee: it’s permanently swollen from the ankle up to the waist near enough.

And the knee, you can tell there’s something wrong with the knee because of the way it is.

So, I knew that was the case; I didn’t think I’d have to wait that long. Like I said to you before, if it was half a knee, it got to be cheaper the full knee, but the longer it goes on, the worse my knee’s going to get.

So instead- he said it’s bone to bone at the moment, it’s going to be a full knee, which perhaps is more expensive, it’s a bigger operation, I don’t know.

So, I mean to me I get- well, look, we all know enough in the papers about the waiting lists and so forth. But again, you see people who had it done and you- "oh, it hasn’t worked, I’m going to go back and have it done again." And you see people- a friend of mine he’s going to have a hip replacement, he’s been waiting about two years, and he went to [city] or somewhere and went private, but on the National Health.

But some people seem to get-, [sighs] oh, I don’t know, I mean, I’ve just got to carry on the way I’m going, I presume.

But as I said, I do worry living on my own and having this giddiness and then having trouble with the knee as well.

Stuart has developed blood pressure problems and vertigo while waiting for knee surgery. He is worried about managing the side effects from medication alongside his knee problems.

On top of that I’ve now got blood pressure problems. My doctor’s- which is fantastic a doctor, I never knock my doctor at all - has given me some pills which I don’t know if they suit me or not.

And on top of that, three weeks ago I woke up Saturday morning and I couldn't get out of bed because the head- my- the whole room was spinning and every time I got up, I just felt uncomfortable, so I stayed in bed.

The following day I dialled 111. I spoke to the doctor, he phoned up and he said, “Looks like you've got vertigo, I’ll give you some pills,” but in the meantime I was sick all day on the Saturday and stayed in bed.

The pills come, they stopped the giddiness and, okay, I felt lazy for about four or five days, on top of that the doctor said to me- I told [him] I was on new blood pressure pills. “Can you do a blood- a heart-" oh, Christ, “a blood pressure test?”  Because I’ve got a machine at home.

Yes, I [told her I] done three tests and they were way, way up.

So, she said, “If I was you, if the giddiness doesn’t go off, phone me back and I’ll get you into hospital,” and I said, “I don’t want to go into hospital if I can help it.”

Anyhow, the pills sorted it, but she said, “Phone your doctor on Monday morning.”

I phoned my doctor on Monday morning and explained the situation and he said, “Well look, Stu, double up on your heart pills, we’ll wait a couple of weeks and we’ll give you a blood test to see if - what harm it’s doing to the rest of your body.” So I think it’s supposed to do something to the kidneys or livers this pill. So, I’ve done that.

But with that and this giddiness, it’s about- you know, getting me really down now because I’m scared to go anywhere near enough, because if I have this spell of giddiness again... And it’s bad enough just being giddy but worse still when you've got a leg what’s playing up as well.

I do worry living on my own and having this giddiness, and then having trouble with the knee as well. I mean it-, when you've been used to doing things and then all of a sudden you can’t do it, you know, it’s frustrating in a lot of ways.

Stuart had his pre-operative assessment the same time as seeing the consultant surgeon. He also returned to the hospital on another day to see a specialist diabetes nurse.

Because I had to go then for a medical into the [hospital], and then I had to go to all through like blood pressure, ECG and so forth and asking me different questions.

Then I went to see the consultant and he said, “Oh yeah, we’ll give you; we’d better give you half a knee,” and he said that “Oh beginning of September.” And I said, “Great.”

Anyhow the beginning of September come and I had to go back up again, and it wasn’t for the operation it was to see another nurse to ask me questions about the operation.

No, no, they were okay. I mean it seems a lot of palaver when you’re thinking about  - well if the consultant said, “Yeah I’ll put you in,”

And then, before that date comes, I’ve got to go and see a special nurse about diabetes and so forth.

But still that’s the way it went and that’s the way it happened.

Stuart returned home late in the evening of his partial knee replacement surgery. He describes the first six weeks of pain management, mobility and follow up appointments.

And I must admit it’s very painful. Not now, but it, that that first two or three days very painful.

Can you tell me a bit more about that? So, the first couple of days, what

Well, they give me two crutches, I had sticks to walk on, fair enough, well I did, and I walked on those, and they give me painkiller in a jar. And I had to inject myself for ten days with something, I dunno, I suppose to stop infections.

So, I mean that was, yeah, they give me when I left the hospital  - injections and all of that. Which, no problem I just, you have to inject yourself in the stomach - which was okay I mean, to be fair I had to do it with my missus when she got ill, so I done that alright.

My two daughters stayed for a week, over a week. It was painful. They give me a pamphlet all about knee replacement and so forth, and the exercises to do, which I started doing, well I suppose, the day afterwards.

I was stupid - I should have had the painkiller. I had the medicine and all that, I didn’t take enough of. My own fault because I thought, ‘No, I can do without it.’  But you couldn’t do without it, put it that way.

But then I, dunno, [after] a week, a fortnight doing the exercises I then started walking up the road with the two sticks.  And then in the end I left the sticks alone and just had one walking stick and I walked up the road and done that, and walked round, a bit of fresh air and exercise.

Stuart said it was painful doing the physiotherapy exercises after knee replacement surgery but it made a lot of difference.

One thing I would say a hundred percent - do the exercises.

Because they - it’s bad enough but - I mean it is painful to start doing the exercises, I must admit, but you must do.

I mean I was doing them two or three times a day. And it does make a helluva of a lot of difference, but everyone I talked to said exactly the same thing. You’ve got to do your exercises. And if you’re not happy, let someone know.

Because, you know, it is a big operation, I didn’t realise how big the operation it was, and I mean well, I think the main thing is if you’re in a lot of pain you’ve got to have the operation. You will be in a lot of pain for perhaps a week, after - a big pain, I mean when you’ve got to take painkillers.  But if you go back along with what to do, it’s gonna help you a helluva lot.

You know I mean it’s - and as I say everyone I talk to has had the same thing - they said, “Well you must do the exercises.”

Because remember - if you don’t you ain’t going to get, your knee is gonna get locked up, isn’t it?

At Stuart’s follow-up appointment the consultant checked how his recovery was progressing including the movement of his knee.

After a month I had to go back to the [hospital] for them to check it. The physio looked at it and she said, “Oh yeah, not too bad at all. I don’t even want to see you again.”

Then after that it was, God when was it now? Perhaps it was six weeks I had to go back to the consultant.  I went in there on this one stick and she put me in a room, put me on a bed.

She said, "can you bend your knee?" And I bent my knee. And she said, “Oh that’s very good.”

And you know she put, measured the knee bend to see if everything was okay. Checked it, looked at the scars and she said, “Yeah, you’ve done, we don’t want to see you again.”

But when I got the pamphlet with all the stuff in it, she did say to me, “You’ll be under us for six months.”

Stuart was concerned about his aching thigh. The surgeon reassured him that the pain in his muscles would improve with time.

 I would say yes, the pain has gone and I can walk, but the leg doesn’t seem, - that pamphlet that I had it said it could take over a year to get your knee back to normal.

Which I’ve accepted that’s my-  But the knee, okay I can bend it, I can do what I want with it but it doesn’t seem like my leg. It’s hard to explain but like it feels hard, the muscles and all that feel hard.

And when I went back to the consultant, no the after a month of the operation, I had - my thighs ached, they really, really were painful.

And when I said to the consultant she said, “Well what they do, they put a tournet over the top of your leg” on an air,  to stop the blood from flowing.

Now they put that [on] tight and that’s what stops - so they can do the operation - and of course she said, “All your muscles now are back as they should do, so they’ve got to get used to the other way of doing it.”

Stuart has no pain now after his knee replacement surgery but his leg feels heavy and different to his other leg. He didn’t expect his muscles to take so long to recover.

You know but I said, “No I didn’t think that it - I didn’t honestly believe it was going to take a year.” But the way things are going I think it will take a year. I’ve got no pain at all now.

That’s good yeah.

But the leg feels heavy, I know it might sound stupid, but when you have a shower, I mean the water goes all the way, when you touch it, it’s not the same as you touching the other leg. Do you understand what I mean by that?

No, I just - if I touch my left leg, the top of the thigh, I can bend it and there’s muscles there, it’s flexible. On my, this one-  it’s solid. The muscles are solid.

And does it feel sort of swollen at all or sort of sensitive?

It - no, well they reckoned that it could be swollen for over a year.

And it is swollen, yes. But that’s, I never thought about that, first I’ve done that. But if I showed, I’m sat on a chair now - if I put my arm, my hand in the front of the thigh, I can move the muscles and the muscles move and it’s quite flexible, if I go on the other side, I can move the muscles but it’s not a patch flexible like the other one is.

So that, that’s what I mean about it’s different.

And the same as if I go down below, up below the knee it’s the same. But the thigh there it’s strange, it’s a strange sensation.

But I suppose you just have to wait, it’s going to take time for the muscles to go back.

Stuart feels disappointed that it has taken nearly a year for the muscles in his leg to recover from partial knee replacement surgery.

I think, yeah, I’m a bit disappointed. I thought I’d be - especially when it’s only half a knee, not a full knee.

You know I’d have thought perhaps - but then again when we talk to people the knee, I mean if you have a hip replacement, they reckon it’s easy, no problem at all. You can, you’re up and walking and it’s okay.

With the knee I suppose it’s doing two different, all the weight's on it, and you’re bending backwards and forwards and twisting and so forth. So, I should think a lot of muscles in there. 

Especially like I said I’d been waiting nearly, well, it had been over 18 months, waiting to have it done so like I said my right leg the muscles have been working the wrong way.

But before the operation no, I didn’t think it would take that long.

I mean a friend of mine he went and had his knee hip replacement and he went to the [hospital] the same as me, and he was up and about walking about and you know he’s still walking about now. Whereas I’m walking with a stick, I don’t think that’s to do with my right leg, I think that’s to do with my left leg.

But I mean I can walk without a stick but I feel embarrassed - that’s why I use a stick.

And it’s difficult to tell, isn’t it? You know whether your left leg would’ve been a problem in the same way if it had been,

I’ve, yeah, I’ve, I’ll never know, will I? I mean I, it’s hard I mean going back now, just looking at different things, you know. [For the] last say five or six years I have been tripping on this left leg, I mean I’ve done it twice today. I went to Marks and Spencer’s shopping this morning and as soon as I walked through the door I nearly fell over because my left foot kind of wouldn’t go where it should go. But the right one’s good.

So, as I say, except for the muscles, they’re really still tight.

Stuart felt there should be more contact with patients while on the knee pathway waiting lists.

If the surgeon said, ‘it’s going to be nine months, we’ll get in touch with you,’ it would have been nice if after, say, two or three months someone gets in touch with me, either emails me or sent something that, ‘we haven't forgot you, and you're still on the list,’ and stuff like that. I’ve heard nothing from the surgeon since October.

The doctor, I told you, over this triage thing, I’ve heard nothing from them. I phoned up in January, “You're on the list,” I’ve heard nothing from them.

And, you know, it’s- I think it’s wrong in some respects. Well, I know it’s wrong - they could get in touch with people saying, ‘yeah, you're still on the list,’ or ‘we won’t-' or ‘we haven't forgotten you.’

Like that woman did in [town] forgot to put me through to have a knee replacement.