Jill
Jill’s knee problems have had a big impact on her life. She felt that if her knees were better, it would be easier to cope with her other health conditions such as an enlarged heart which makes her breathless, sciatica, and type 2 diabetes. At her appointment to discuss knee replacement, Jill was told that the surgeon would go ahead with replacing both knees. Jill had a total joint replacement of her right knee but, due to a slow recovery, she is yet to have her left knee surgery.
Jill is a retired machinist, and is actively involved in a number of community roles including as governor. She lives with her sister. Her ethnicity is White British.
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Jill has been having problems with her knees for five years. Although her right knee was worse than the left, both were painful and she was unable to walk without being in “absolute agony”. Jill tried to keep moving so that her knees didn’t “stiffen up altogether”, but went from “hobbling to a four-wheeled walker”. In addition, Jill has an enlarged heart which causes breathing difficulties, sciatica, and type 2 diabetes. She takes a number of medications, including three different types of pain-killers for her knees: “I rattle with all these tablets. There’s load of them”. In terms of past surgeries, Jill previously had a hysterectomy and had problems waking up after the general anaesthetic. Before knee surgery, Jill felt that if her knees were better and she could walk, then it would be easier to cope with her other health conditions. She had been given advice by healthcare professionals about diet and exercise but found it unhelpful: “they keep telling me I’ve got to lose about two stone”, but “it’s no good telling me to go swimming ‘cos I can’t walk from the changing room to the side of the pool”.
Jill was an elected District Councillor for 36 years, and a member of the Cabinet for a number of years, until she lost her seat. She is founder and still chairman of a charity providing community transport to those who are unable to use a public bus service due to being too far to walk to a nearest bus stop, with limited buses in rural areas. Jill has been a Governor of two schools and, during her working life, trained as a residential social worker for children and young people. She had to leave due to her father having cancer and passing away when her sister was only 15 years old. She worked as a machinist on a production line for 25 years until closures when she was aged 50. Jill drove a taxi for three years.
Jill is very active in a number of community roles, but her knee problems became so bad that they “completely restricted my lifestyle to what I consider zero”. She worried about returning to in-person meetings and having to walk even short distances. Jill’s knees felt very unstable and she worried about falls; she had a fall a while ago and was unable to get up without assistance.
Every few years, Jill has had X-rays taken of her knees. Her GP gave her a steroid injection in each knee, but she was not told whether she should come back, which left her feeling “stranded”. Jill saw a physiotherapist, but had a bad experience which left her in a lot of pain. She was given booklets of exercises, but didn’t feel they were helping. She had a phone conversation with a physiotherapist during the pandemic and it was agreed she should be considered for knee replacement surgery. Jill felt stuck waiting for the appointment with a knee specialist: “you’re just sitting on a list. There I am waiting. Don’t go any further”.
Jill thought that both knees would need replacing eventually, and this was confirmed at her appointment with a surgeon. The surgeon planned to operate on her right knee first, followed by the left eight weeks later. She had been worried that her other health conditions might mean she couldn’t have the operation, as she had not been able to have a diabetes review for a long time because of the pandemic. Jill was also waiting on a cardiac appointment, but neither this nor her diabetes were flagged as issues by the surgeon in her pre-operative assessment. Jill expected that the replaced joints wouldn’t work exactly like her knees used to, but she hoped surgery would allow her to walk and do more of the things she values in life. After the appointment where she agreed to have knee surgery, Jill waited to hear more. She was aware that her local hospital has staff shortages because of the pandemic, which would likely delay her operation, and that there was a long waiting list. She continued to take painkillers, but tried to be sparing with these because of their side effects.
Jill received a total replacement of her right knee. She was kept awake for the operation, and described the care in hospital as “brilliant”. She spent five nights in the hospital where she had her surgery before being moved to a community hospital for two weeks of rehab. Jill was in “agony” at this time, and felt she was making slow progress. Once Jill was able to bathe herself independently, she was sent home from the community hospital. Jill’s sister, who she lives with, had changed her house around to make accommodations for recovery. After being discharged from hospital, however, Jill felt “abandoned” by the NHS. It was a further three weeks before a physiotherapist visited Jill, and she was disappointed by this gap in care between the hospital and home. Jill was given Longtec and Shortec oxycodone tablets for her pain, but discovered she had been taking them at the wrong doses after a change conversation with a nurse.
Since then, Jill has been seen by a physiotherapist and rehab professional around fortnightly, who have installed ramps, taught her exercises, and taken her on walks outside the house. Jill has struggled with her recovery; she requires the use of a wheelie frame to walk and relies on Longtec and Shortec oxycodone tablets for pain relief. Her legs are still swollen and ache six months after the operation, which has caused restless legs and bouts of anxiety. Jill tried to speak to her GP about this anxiety, but was only given a website to refer to. Jill has also been frustrated at a lack of consistency in her GP practice, as she is seen by a new doctor almost every visit. At a follow-up appointment with her surgeon, they said they were happy with her progress and ready to schedule the procedure for the left knee, but Jill does not feel ready yet. Jill has also struggled after being prescribed water tablets, to help with the swelling, but these cause her to need to urinate frequently. She has to plan her days around being able to reach the bathroom for fear of wetting herself and has had to place a commode in her sitting room, which has meant not inviting visitors over.
Jill’s main concern post-surgery is a lack of independence. She does not feel comfortable driving due to her medications, so relies upon her sister for transport. Jill is also unable to stand for prolonged periods of time to cook for herself and her sister. Jill worries that she is “putting too much” on her sister, who also works full time. She is grateful that her sister’s employer has been understanding. Because Jill cannot walk for prolonged distances, she has had to give up one of her governorships. She worries about “siting around all the time” and being unable to exercise. She has tried adapting her diet to lighter meals, but has found it difficult to lose weight with her limited mobility. She has also found herself more breathless and recently started on a program designed to help with this.
In February 2023, Jilly had severe sciatica which was a further set back to her knee recovery. This led to an increase in pain killers and, though she spoke to several GPs over the phone, she wasn’t seen face-to-face. She developed breathlessness and was rushed into hospital by her sister. A cardiac consultant was very concerned that she had been advised to drink more water by a GP at her practice – advice that she now feels was wrong because she had very low blood pressure. Jill is frustrated that she is still unable to walk independently nine months after the knee replacement surgery.
Jill says that she is taking “each day as it comes” and she is unsure when or if she will have her left knee surgery. Thinking back on her experiences with her right knee replacement, Jill would have liked more better communication and support arrangements made between the GP, surgeon, physiotherapist, and herself as the patient: “The patient needs to know what recovery looks like and how to go about it in the best way possible”.
Jill could no longer do the weekly food shop and needed to sit on a pedestal when cooking.
Jill could no longer do the weekly food shop and needed to sit on a pedestal when cooking.
So therefore, she’s [sister who lives with her] had to do a lot more - so she’s had to pick up doing the shopping and, you know, making sure everything’s within my distance to do, so I haven’t got to carry stuff. So, I just feel as if I’m burdening her with more and more. 'Cause I can’t do it myself.
That’s difficult. Yeah.
Well, she has to go to work every day. So, I’m here on my own during the day but well, she comes home for lunch. So, I generally do the cooking for lunch and so on. But I’ve got to, I’ve got a pedestal to sit on, but it’s just, all of it is inconvenient, if you see what I mean?
It’s, it just makes my lifestyle zero. Because if I want to go out and see somebody, I probably can’t walk up the drive.
It’s just limiting in all ways which way.
Because, whereas I used to do the shopping every week, I’d go and get stuff every week or go and get things, I have to plan what we’re going to do, and I have to get my sister to get it, 'cause I can’t stand in a queue. I mean I was in the bank a little while ago 'cause I wanted to pay some money in, and I had to give up because the queue was so long, I couldn’t stand any longer.
Jill’s knee problems have stopped her being involved in community and volunteer roles. She finds it dreadful sitting at home all day.
Jill’s knee problems have stopped her being involved in community and volunteer roles. She finds it dreadful sitting at home all day.
Because I know I can’t do this, that and the other so I have to make sure I keep occupied.
During the day and I know I have to keep my mind working, and keep working at it, because I don’t wish to get into that position again.
Are there examples or strategies that you do use to kind of keep yourself, keep your mental health well that you could share with me?
Well, my sister works full time so she normally comes home for lunch except when she has to work at the hospice one day a week so Imake sure that I - because there’s quite a lot of reading matter with governorships - so I make sure I do that, I’m applying for grants for my buses to try and get money. I always read the newspapers and do crosswords because I’d been brought up with a mother who always had a newspaper and I always have a newspaper - I have three newspapers actually.
[Laughs]. And I read those and I do all the crosswords and so on, because I wanna keep my brain occupied, otherwise you seize up altogether. And you know, do what I can to keep occupied; I’ve got some knitting going on, I’m gonna get a new table and do some craft stuff that I used to do years ago.
Jill is in “sheer agony” when walking with her four-wheel walker. She can only go places where she can drive to with a short distance to walk from the car.
Jill is in “sheer agony” when walking with her four-wheel walker. She can only go places where she can drive to with a short distance to walk from the car.
But you see the problem now is the knees are so bad I’ve now got a four-wheel walker because I just can’t walk much more than the length of a car.
And they’re absolute agony depending on how far I’ve got to walk.
Gosh.
So, while they had meetings on Zoom, virtual during the pandemic, in a way that was easier for me.
But now they’re gonna go back to meeting, so the community college moved their meetings downstairs, which is good. Deaf academy is a modern, new modern building so that’s fine. But it’s the distance I’ve got to walk before I sit down. So, I’ve got a four-wheel walker because the problem is I fall over. And when I fall over, I can’t get up.
Jill tried to book in advance with the same GP as it helped to have continuity of care.
Jill tried to book in advance with the same GP as it helped to have continuity of care.
But the one I do see, which I do accept-, I make sure I see her on, she’s an old-fashioned GP so it suits me. So I try and make sure that, and then they said to me, “Well why have you chosen her?” And I said, “Well I’ve chosen her 'cause,” I said, “I’ve had two appointments with her, that’s good going.” So, I said, “If I can go, keep going to the same one, would help.”
I don’t know why they can’t see it doesn’t help.
But, you know, there are some GPs are very good but I still think you should have the same GP all the time, if possible.
I know that, you know, they fall ill, they have holidays and so on, and I recognise that if you want a GP that day, 'cause you’re concerned that day, then you have to, you have to just have who’s available. 'Cause they now have a rota of who’s on a day-to-day one.
But as I said, if you’re having a sort of appointment every six weeks or whatever, can you please see the same person?
Jill has managed to lose weight while waiting for surgery by eating lighter and smaller meals.
Jill has managed to lose weight while waiting for surgery by eating lighter and smaller meals.
Well, we’ve - there’s only two of us so we’re actually eating lighter meals because of sitting around. I was very worried if I was sitting around all the time, I’m not using any energy at all so a bit worried.
So anyway we just, we were eating, we are eating lighter meals and smaller meals. And yeah, that seems to have worked I’ve lost a stone and a half so far.
So, it’s a question of, as long as it’s slow it will, you know, I don’t wanna take it off with one of these diet sheets because if you take it off, your diet is very often about as much as I eat anyway.
I’ve been saying that for months before when I used to go for the diabetic review, and I said, "Well I’m not eating any different than someone on a diet."
Because I’m not, so there you go. But the problem is it’s no exercise because I’m not going anywhere.
As part of pre-op health checks and assessment, Jill had an extra scan on her heart because the x-ray hadn’t shown up her enlarged heart condition.
As part of pre-op health checks and assessment, Jill had an extra scan on her heart because the x-ray hadn’t shown up her enlarged heart condition.
The anaesthetist did ring me up - I think I told you, the anaesthetist rang me up before I went for surgery because what was interesting was they told me I had an enlarged heart, and getting cardiac appointments at the [hospital] here, you can be 12 months waiting for an appointment.
But they’re so busy, and the anaesthetist rang me up and said, “It said on your notes you had an enlarged heart.” I said, “Yes,” so she said, “Well, I can’t see it on the X-ray.” I said, “Oh well, I don't know, I don’t even know what I’d be looking at,” so, I don’t know what’s going on.
So, they sent me to the fast triage thing at one of the Nightingale [temporary hospital set up in pandemic] things, and I had a scan done on my heart there.
After her total knee replacement surgery Jill was transferred to a community hospital where she began to walk with an elbow frame. She was in "sheer agony" and it was a struggle.
After her total knee replacement surgery Jill was transferred to a community hospital where she began to walk with an elbow frame. She was in "sheer agony" and it was a struggle.
I had my surgery on the 1st of August. That went okay. I was-, after five days in the [hospital] I was transferred to the community hospital where I was supposed to have rehab.
I didn’t think [it] was very satisfactory because they gave me a-, I was there for about, oh, nearly a week, and then I couldn’t walk only for about as far as half a length of the bed. And they came out with an elbow frame, which is awkward, and told me to walk across the room to the toilet, which must have been about, 30 feet. I had to walk, though I’d never walked before.
I was in absolute sheer agony. I was going along saying, “Well, no pain, no gain I suppose.” And that was it. And then I just did that every couple of times; I couldn’t walk both ways, as they wanted me to.
I never went to the physiotherapy bit. I never walked along between parallel bars or anything like that. I never had any massage, nothing like that. And then they said, well, after two weeks of battling on, I did manage to wash myself and so on with help, but then I was a bit better at it, as long as they wheeled me there, because it was too far for me to walk without being in agony.
A few of the doctors came round about once or twice a week and they changed my medication, or altered it, whatever, and then after two weeks, on the Friday, I left, and I said, “Oh, I can get my sister to pick me up,” and they says, “Oh, she can’t pick you up because we haven’t shown you how to get in a car.”
Anyway, so I came home by ambulance.
Jill's recovery is much slower than she expected from her total knee replacement surgery. She feels she takes two steps forward and about six steps back.
Jill's recovery is much slower than she expected from her total knee replacement surgery. She feels she takes two steps forward and about six steps back.
Yeah, well it’s seven months and I ain’t got anywhere yet, as I say, I’m not even walking on my own.
I can waddle like a duck, in the lounge, for about, I don't know, the length of a settee, but that’s about as far it goes.
So, I’ve had ramps. I mean they’ve been round-, I mean the physiotherapist got ramps for me to go through my conservatory, out the conservatory. And then I’ve got a path anyway that goes round to go out - because I’ve got three steps at the front and two steps at the back - so that means I can’t go out the front door, or the back door, so I have to go out the conservatory, which is further back and round.
And the rehab physio person comes-, well, she’s been coming about once a week, not always, but roughly once a week, and said, “Oh, we’ll go out in the sunshine and go and walk from there to there.” But that’s all at the moment, and nothing else, and I’ve got the exercises. So, I can’t do any more but be patient.
Had anyone said how long it might take to recover or has everybody just said it will take as long as it takes?
No, because I when I had the operation, I really felt good, I really was good and I got through that well, and I thought because other people were-, you know, I know other people, and, you know, they’d been sort of driving a car after four weeks or eight weeks, they were walking on their own two pins for-, after eight weeks, and I was just querying what the hell’s going on with mine?
But I-, it says on there, ‘try something,’ so I presume that mine-, according to the physiotherapist I had a full knee replacement, not part – full, so therefore, he said, “It’s going to take you longer anyway”.
So that’s why they’re saying, “Well, don’t worry about how long it takes.” Well, it’s all very well but I’m going potty.
Jill had other health conditions to cope with during her recovery from total knee replacement. Her slow recovery has triggered her anxiety and she feels unsupported by the healthcare team.
Jill had other health conditions to cope with during her recovery from total knee replacement. Her slow recovery has triggered her anxiety and she feels unsupported by the healthcare team.
The physiotherapist came out and that was-, after three weeks, that was the first time I’d seen any exercises to do.
So, I was doing the exercises and then various things happened. Then they had the rehab and they walked me out the house and round to there, but with my heart condition I was getting a bit out of breath, but no one’s doing anything about that, anyway, but I was taking furosemide for a while.
Anyway, then I had-, my legs killed me, so they changed the medication. So, I had a Longtec for 12 hours and I had-, I could have up to four five milligrams of Shortec in between if and when the pain reared its head.
So, I had agony from the knee down on one-, both knees, from your knees down once, and then I got over that, and then - the knees-, at the back of my legs were killing me and I didn’t know where to put myself.
Anyway the physiotherapist came and the GP told me I should walk up and down and do more exercises. The physiotherapist came and said because you had 30% weight on your knees and 60% on your frame, and you moved over to 30% on the frame and 60% on your knee, you’ve actually done too much on your knees, it was too much, so you’ve got to rest your knees and just go slowly at it, so that improved.
And then my anxiety state came back and I can’t get anything out the GP for that, and then I had-, as I said I had low-, very low blood pressure. They told me to drink loads of water, and when I went to the hospital to the acute triage on Wednesday of last week, they told me that was utterly wrong and because that’s why I’ve got such a-, out of breath, it’s because I had too much liquid, too much water.
So, I might have to take water tablets at a higher strength, or more often. And water tablets, I can only explain to you that if you take the water tablet in the morning, I can’t even get as far as the front door without wanting to go loo, so it’s terrible. And when I came back from triage on Wednesday, they made me take one in triage and I had to stop four times in the 11 miles back from the hospital to my house, so, it was a nightmare to say the least.
I’ve now got legs that ache because of course they’re swollen, and so we’re trying to get it down so I’m under the acute triage and I go back there on Thursday.
I am walking better and I am-, I can walk out to the front of my house, but I haven’t started to drive because I don’t want to drive while I’ve got these particular-, what they called, you know, these particular drugs, these opiates?
So, my sister, if I’ve got to go anywhere, she takes me. Her employer has been brilliant, and for the first few weeks I was home, she was home altogether, she’s been going back to work mornings only and she works from home in the afternoons, and she’s doing that and she’s going to do that-, she’s put in for her retirement, which will be [in] April.
But she’s been absolutely marvellous, because there are nights when I don’t sleep, I can’t get comfortable, my legs are like-, oh, they’re fidgety, they just won’t calm down and every now and again I get so anxiety status I just can’t lay down and sleep, whatever. Because it’s just-, I just-, oh, my brain does overtime.
When I think I’m getting better, something else comes along and throws me off beam.
I think it’s slower because I anticipated being in and out of this in eight weeks, and it didn’t happen, and if I’d have known that it was going to be triple whatever they call it, then I would have known I would have been longer.
The physiotherapist tells me, “Well, everybody’s different,” and, you know, so on? Yeah, accepted, but I think that people ought to have been a bit more realistic. I just felt that I was abandoned by the NHS because the physiotherapist didn’t come, the so-called urgent community response when you come home didn’t exist, it weren’t there.
I know they’re in difficulties, and I know they’re under pressure, but if you come out of hospital-, you know, my sister, if she hadn’t been working for [a hospice] - what about those other people?
I mean she works for [a hospice] so the nurses helped her move the lounge around and get the bed ready and put everything in place.
Jill’s mobility limited what she could do outdoors. She actively did things at home to benefit her mental health while waiting for knee surgery.
Jill’s mobility limited what she could do outdoors. She actively did things at home to benefit her mental health while waiting for knee surgery.
Because I know I can’t do this, that and the other, so I have to make sure I keep occupied during the day. And I know I have to keep my mind working, and keep working at it because I don’t wish to get into that position again.
Are there examples or strategies that you do use to kind of keep yourself, keep your mental health well that you could share with me?
Well, my sister works full time so she normally comes home for lunch except when she has to work at the hospice one day a week so I make sure that I - because there’s quite a lot of reading matter with governorships - so I make sure I do that.
I’m applying for grants for my buses to try and get money, I always read the newspapers and do crosswords because I’d been brought up with a mother who always had a newspaper and I always have a newspaper, I have three newspapers actually.
[Laughs]. And I read those and I do all the crosswords and so on because I wanna keep my brain occupied, otherwise you seize up altogether. And, you know, do what I can to keep occupied, I’ve got some knitting going on, I’m gonna get a new table and do some craft stuff that I used to do years ago.