Barbara

Age at interview: 82

Brief Outline:

Barbara was diagnosed with osteoarthritis 15 years ago. She has been to the doctors about her knee problems a few times over the years, and seen surgeons before. A year ago, she had a fall which left her “slowed down completely”. At a recent surgery consultation, Barbara was advised to avoid surgery because she is not in much pain. She is happy to follow this advice, as she wasn’t sure whether she had wanted surgery in the first place and worries about the risk of bad outcome.

Background:

Barbara is widowed with two adult daughters and three grandchildren. She is a retired post office counter clerk. Her ethnicity is White English.

More about me...

Barbara was diagnosed with osteoarthritis 15 years ago. It affects her knees, thumbs, and ankles. She takes medication for atrial fibrillation, which has made it barely noticeable. She had two surgeries for her heart, and received an annual check-up for a leaky valve. Barbara has been taking medication for high blood pressure for 50 years. In addition, she takes water tablets for swelling in her legs. Barbara previously had surgery to treat uterine and breast cancer. After her mastectomy, she had internal bleeding and leaking from her lymph glands, and she says “the scar is awful”. She has also had skin lesions removed to reduce the risk of skin cancer.

Barbara has been to the doctors about her knee problems a few times over the years, and had seen a surgeon twice before. The first time she saw a surgeon was many years ago and she remembers being told that joint replacement was not necessary because she wasn’t in a lot of pain. She wonders if the fact she has a heart condition was also part of the reason, although nothing was said about this by the doctor. After seeing a surgeon for the second time, she had an operation which “cleaned out” one of her knee joints. Barbara found this helped and she had planned for her other knee to have the same treatment, but then she was diagnosed with breast cancer. She’s heard that this type of knee surgery is not done anymore.

Barbara considers herself to be “clumsy”, as she is prone to tripping and having falls. A year ago, she had a fall which left her “slowed down completely”. She expected things would improve but it is still a struggle to use stairs and walk downhill. Her knees sometimes hurt, although “no two days are alike”. She takes paracetamol for pain, but considers it a “waste of my time”. Barbara contacted her GP about six months after the fall. She then saw a physiotherapist who showed her how to do some exercises. These helped stop her knees collapsing inwards but it didn’t help with walking. She then spoke to a different physiotherapist over the phone and was told to choose between steroid injections in her knee or a referral to a surgeon. Barbara wasn’t given any information about the two options and the physiotherapist wouldn’t give any “advice”, so she decided to go for the surgery referral.

Barbara feels “very frustrated” about her mobility. She finds that she can move around only very slowly now. She is disappointed that she had to give up golfing, as she enjoyed being outdoors and socialising. Barbara says she does her best to “just get on with it”, and reminds herself that others are worse off. She considers herself “strong mentally”, and hasn’t felt that her mental health has declined much. She explains that “all I want is to be able to walk better” and to continue being “independent” as she gets older.

Before her latest appointment with a knee surgeon, Barbara had been unsure if she wanted knee replacement surgery. She had concerns that she could end up “in a worse state than I am now”. She was also worried about the impact of Covid-19 on waiting lists and delays, and thought that she may be “pushing up daisies before they do my knees”. As well as finding out whether surgery is a suitable option for her, Barbara had planned to ask for more information about steroid injections at her appointment with the surgeon.

At her most recent appointment with a knee surgeon, Barbara was advised to not have knee replacement. Instead, the surgeon recommended that she begin using a walker and try to get more exercise. She didn’t mind that surgery was not being recommended, as she wasn’t sure whether she wanted it in the first place. Barbara had heard that one in five knee replacements have no improvement or could make things worse. She suspects that she would have a bad outcome as: “my cup is always half empty”, and she worries that surgery puts her at risk of losing the mobility she has now.

Since several surgeons have recommended not operating on her knee because she isn’t in much pain, Barbara is happy to take their advice. She continues to wonder though whether her other health conditions or life expectancy have kept doctors from thinking the surgery is worth the risk. Additionally, she thinks they might be avoiding surgery because of the expense. After her appointment, Barbara began using a walker and taking aquafit classes. The walker has been helpful, though she has trouble with maneuvering on hills and getting the aide in and out of her car.

For now, Barbara plans to “put it all on hold and see how I go”. She thinks that she would be offered surgery if she really insisted. Friends and family have recommended that she should exaggerate how much pain she is in, in order to get surgery. Barbara doesn’t agree and thinks it’s “no good telling the doctors the wrong thing”. Her overall health has been good overall recently, with the exception of having some skin lesions removed to reduce cancer risk. At her current knee pain levels, Barbara feels content to “struggle along in my own sweet way”.

Barbara was diagnosed with osteoarthritis 15 years ago but she had a fall more recently and her mobility worsened.

Has that change in your knees, so the pain and the sort of mobility, has that been quite gradual or has it happened suddenly for you?

Oh no, it happened suddenly. I had a fall. A week, a year ago last Christmas, I had a fall a week before that.

And since then, my mobility has not been good. I mean the stairs are difficult, walking downhill is a nightmare, and I’m slow. I mean if the phone rings people have to ring me twice, because I don’t get to the phone quick enough, it goes onto the answer machine, you know. I’m just slowed down completely, and I get very, very frustrated.

It’s the ability to walk. I mean everybody overtakes me and I get so frustrated. Cos only slow, I’m not used to it. But I just, I think well at least you’re walking, just get on with it. Cos, I mean some people, my age, are in much worse state than I am.

Barbara’s knee problems affected her mobility. She had to “shuffle” until she got herself going after sitting or sleeping.

It happened suddenly. I had a fall. A week, a year, a year ago last Christmas, I had a fall a week before that.

And since then, my mobility has not been good. I mean the stairs are difficult, walking downhill is a nightmare, and I’m slow. I mean if the phone rings people have to ring me twice, because I don’t get to the phone quick enough, it goes onto the answer machine, you know. I’m just slowed down completely, and I get very, very frustrated.

My right knee clicks, and sometimes it hurts when I walk, sometimes it hurts every step that I walk. But no two days are alike. The next day I’ll walk and I walk, you know, I don’t have any pain at all. So, I, you know I can’t sort of categorically say it’s that, that or the other. Cos it just keeps changing. It’s either the, you know, I mean I was quite happy to carry on as I was until I had difficulty walking.

I mean if I sit down and I get up, I just can’t walk. I have to shuffle to, until I get myself going. If I want to go to the toilet during the night I have to shuffle to the toilet. And then I can walk back.

Barbara had atrial fibrillation and also had swollen legs which affected her knee problems.

My knees are, I mean I’ve got, my legs are huge, at least I think they’re huge. And I’ve been on diets and I’ll go down and I lost three stone last time I went on a diet, and I went down two dress sizes, but my legs just stayed like two big huge tree trunks, and they were, they never budged an inch. And, and I don’t know if it’s, whether this is relevant or not, but when I was young, I went on the contraceptive pill, and when I went on the contraceptive pill my legs swelled up. I thought, ‘Oh you’ve put weight on.’ But me legs have never gone down.

And I was only on the pill about 18 months. 'Cause after that I had the blood pressure, and I couldn’t be on it.

You know, and me legs, even if I lose weight I, I’d be two stone lighter if my legs were normal sized. Take a stone off each leg with ease, I think they’re huge. I mean I’ve no ankles. You know, but there you go. And my ankles sometimes swell up, and my knees are all sort of swollen up.

Barbara started using a walking stick outside because she was frightened of her knees collapsing.

Yes, I use a walking stick because I use the walking stick because my knees were collapsing. I was frightened. I don’t use it in the house at all, but I was frightened of going out and my knees collapsing and ending up on the floor. So, but now that my knees have stopped collapsing, I haven’t got the confidence to go out without my stick.

But I don’t use it in the house at all. And my knees don’t collapse at all at the moment.

Barbara’s doctor recommended a walker but she didn’t use it much outside as it was hard to get in and out the car.

Well, I'm not very mobile and I went to the doctor, I had a fall about 19 months ago and since then, now, it’s affected my mobility, and I have to walk with a stick, and so I went to see my doctor about a month ago and he said, “Oh,” he said, “we'll get you a walker,” and I'd never even thought about having a walker.

So I've got a walker now, but I live up a steep hill and I'm frightened to take it down the hill, so it’ll only go in my car, and mine’s-, it’s only a small car so it’s a bit of a carry on, you know, folding it up and putting it in and taking it out.

I haven't used it very much to be honest with you. You know, because if I go to the shops, I just take my stick and once I get a trolley, you know, at the shops, I can walk all right so I don't use it very much.

Barbara describes the exercises given to her by the physiotherapist. They have helped to improve the feeling of stability of her knee but haven’t helped with walking.

I mean I do these exercises, and one of the exercises is holding your legs out straight, I’ll do it on the bed, about two foot up. But my legs are so heavy that to hold them up for the count, a slow of ten, to hold them up for the slow count of ten is quite difficult because my legs are heavy. But I do it. I get through it.

And is that one of the exercises that you said you’ve found sort of has stabilised your knee a little bit?

Oh yes. The other one’s, I mean the other one is pressing your knee down for a slow count of ten twice. And then you have to lift your leg straight for the slow count of ten twice. And you do both legs five times, so you sort of, it, both for the count of ten, you know. You do one and then the other, so you’ve done it ten times. It only takes about six or seven minutes; it depends how quickly you count up to ten.

And are those exercises that the physio gave you in the summer?

Yes. And I say they stop my knees from collapsing, but they haven’t made my walking any better.

When Barbara spoke to the physiotherapist, she was given a choice of steroid injections or referral to the surgeon. She would have liked some advice about which to choose.

The last time I went to see me doctors was about my walking, and they said, “Oh we don’t deal with that, that, your problem now.” They put me onto a physiotherapist.

And then when the physiotherapist rang me up and said “did I want to have injections on my knees”, or not do it. I said, “Well can you give me some advice?” She said, “No I’m not allowed to.” I thought well this is ridiculous. 'Cause, I didn’t know what to go for.

You know with having, I said, “Well can I have injections, and if they don’t work, I’ll have my knees done?” And she said, “No, you’ve got to choose one or the other.” I thought, “Well this is ridiculous.” I said, “Oh well I’ll have my knees done then.”

When I go and see the man in about two weeks’ time, I’m going to ask him about injections. But I don’t know anything about injections.

When Barbara saw the surgeon, they advised her not to have knee replacement surgery as it might not be successful. She decided to take their advice.

You know, whether to do them or not, and in his opinion it would be best not to do them because of the success rate.

But I get around. And I'm frightened to have my knees done because they tell me that one in five [operations] isn't successful and I feel at the moment I can walk, even it’s not very well, if I have it done, I might not be able to walk at all.

Okay.

And I'm nervous about having it done because I don't have a lot of pain, I have aches and pains, but I don't have a lot of pain so, you know, I don't know if I'm doing right or wrong.

Because people I know have had their knees done and they're absolutely wonderful, but I'm a bit nervous about having it done.

And the doctors seem as if they don't want me to have it done because I'm not in a lot of pain, so I just take my advice from them really.

Oh well, no, they said to me, “If you don't have a lot of pain-” I mean I've seen several surgeons and they've all said the same thing. I don't know whether they're trying to save money on the National Health or whether they're being truthful.

They've all said to me that one in five of these operations doesn't work, they said they have a good record with hips, but knees are not so good you know, as hips, for being-, I can't think of the right word: for being correct, you know, for after the surgery?

He said the hips are good, but-, well, all of them have said the same thing, ‘knees are more difficult to deal with.’ You know? So it’s put me off.

And when the surgeon that you saw about two months ago, when they said that they didn't recommend knee surgery, how did you feel about that outcome?

It didn't bother me at all, because I'm not keen to have it so it suited me.

It suited me because I'm frightened to have it.

Barbara’s surgeon suggested exercising her knee more when knee replacement surgery was not an option. Her GP recommended she used a walker and went to aqua fit classes.

Well, at that one all he said was I needed to get out more and meet more people, because I'm on my own a lot, and do more exercise.

But really the way I'm walking, I couldn't do more exercise. As I say, eventually, a month ago, I went to the doctor, and I can walk much better with the walker, I really can, I can walk faster as well with the walker, but it was a-, getting it out-, out of my house and walking down the hill, I've never done it, I need to have my daughter or someone walk down the hill with me to give me confidence that I can do it, and then it’s not just walking down, you've got to push the thing back up again.

Oh no, I mean I started to go to aquafit for my knees, my doctor suggested it, you do exercises in a swimming pool and you have water up to your neck, up to your shoulders, you know, and I mean I went there on Thursday and when I got home on that Thursday afternoon I couldn't hardly walk, so whether the exercises were too much and I should have been doing something more gentle, or not, I don't know...

And was it your—

And the next day I wasn't walking very well either, and then by Saturday I was walking better again. So I don't know if the aquafit’s doing me any good either, but-

How long have you been doing the aquafit?

Oh, not very long, just about a month. When I went to the doctor’s he suggested it and he suggested the walker as well, so I've got the walker and I went to the aquafit.