Helene

Age at interview: 66

Brief Outline: Helene was originally referred to a specialist because of the pain she had in her right knee. She later started having pain in her left knee and had a partial knee replacement in 2014. Helene is recovering well and has been walking indoors without crutches whilst the right knee seems to have resolved in the past few months.

Background: Helene is a retired medical secretary and has 2 adult children. Ethnic background / nationality: White British.

More about me...

Helene was originally referred to a specialist because of the pain she had in her right knee. Later she started having pain in her left knee too, and her doctor referred her again to the specialist hospital. There, an MRI on both knees confirmed that she had arthritis in her left knee and was eligible for partial knee replacement surgery.

The operation went smoothly and Helene was able to go home the day after surgery. She was disappointed, though, that there was no physiotherapy within the first month after surgery to check that the exercises she was doing were correct and that the knee was healing well. Helene decided to go to her local surgery to ask for help with her dressings and there she was pleased to hear that all was progressing well. 

Helene was prescribed painkillers (paracetamol and codeine) after surgery and blood-thinning injections that she had to administer herself. She tried to avoid taking too many painkillers and is only taking them now whenever she is in pain. Unfortunately, at the time of interview, Helene was still having persistent pain in her right side. She contacted us after the interview and said that, since the interview, the pain in the right side has once again subsided. 

Helene is recovering well from knee surgery and has been walking around the house and doing the housework without crutches. Although she is wary of walking outside by herself without crutches, she does go out and is using a crutch for now. Helene was grateful for and praised the support she had from family and friends.

Helene and some relatives looked at the hospital website. It told her more about the pros and cons of surgery but she had already decided to have it because of the pain she was in.

So this link, was it to a website or was it to video clips?

It was to the Oxford Knee website – that’s what it's called – and it just tells you, or it told me sort of about the partial knee replacement. It actually shows you the devices that are going to be put in there. Such a long time since I looked at it now. And the options – you know you could…that they had said that when we do do the operation we will look and make sure that you don’t need to have a full, change to a full one. And there was the pros and cons from people, different people, because of course you could say no you don’t want it, that you'd wait. Why I wouldn’t want, I don’t know but obviously some people don’t like the idea of surgery and would wait.

So you looked at the website. Did you mention that family members also looked at it?

Did I mention to them?

Did you say earlier that family and people in America?

Yes, yeah.

Friends and family?

It's my sister-in-law – her partner is a GP, well he was a general practitioner, he's now over seventy so he's semi-retired. He looks after hospice patients and so of course it was of interest to them and they looked it up.

And when you saw that website, did it help you make a decision or was your decision made because you were in so much pain?

I think yeah, I think honestly, I would say that it… I needn’t have looked at the website, I would have already said, "I want something done that’s going to take away the pain."

Helene did some of the exercises wrong because they ‘weren’t explicit’. Knowing how long to do each one and having new ones to move onto would have been good.

So before you left were you given a booklet about the exercises to do?

I, a tiny… I think actually it's upstairs because it's … what I do is I take… if I do them downstairs, usually in the morning I do the ones upstairs, sort of in bed and, yeah I was sort of going through these and they weren't very explicit. Some of them said hold for a count of five or… the one I didn’t, which I completely got wrong was the standing one where it says step onto the, put your foot onto the first step. And I'm thinking, 'Why am I doing this, what's it doing for me?' And then realised I was supposed to lift my back, the other leg up, probably. It didn’t actually, you weren't, it didn’t say put your full weight. I may be wrong even now on saying that, that’s what I was supposed to do. 

So you were given the booklet but it wasn’t always clear how to do all of the exercises

No, no it wasn’t and it's not a booklet, it's loose sheets that have been photocopied and, as I say, it was sort of clearer the ones that I had when I'd gone to the hospital, to the physio here in [place name]. The instructions are much clearer but unfortunately I never kept that, I didn’t have it still and it was all on an A4 sheets, not lots of loose pages. But, as I said, I had so much information, I then found…sorry if I'm going away from you…I found this book a long time afterwards and is this the one that’s got the, and it had better pictures, more exercises to do and I'm thinking, 'Where did you hide that Helene?'

Where was this book from?

This was given to me by the, actually on the …I think this was given to me on pre-op assessment.

Oh right, right. So that was helpful but what would you have really liked in terms of, you know, doing the exercises?

I think actually it might have been a better… I didn’t see any videos of the exercises. Now that might, because you’ve got somebody, a physiotherapist actually talking saying, you know, sort of, "One Mississippi, two Mississippi…" these are my seconds, Mississippi, saying how long to hold it, exactly how to do it and, you know, sort of wrong and right. Even doing sort of wrong and right whilst they’ve got somebody, the model, and doing it for them. So yeah again it's just the aftercare, it's so kind of lacking.

If you'd been given a DVD would that…?

Yes, yeah that would have been good, the same yeah, yeah.

And maybe information, because you said that you weren't sure - 'Am I doing enough, am I doing it OK; after two weeks what should I be doing after two weeks?

Yes, yes, yeah this is it. Because the exercise which are six I think it is – three up lying, three standing – and I was thinking, 'How do you progress from this; OK just do it for more, you know, more times – make a note on each, on the bottom of the page,' sort of. This day I did five, six the next day and so on, but it becomes boring when you're still doing the same ones but much, much longer. How lovely it would have been to have had new ones to do.

Helene describes what happened at the pre-op assessment. She saw lots of different professionals and had lots of tests. It was ‘all very efficient’.

You have a letter that comes through and it does tell you, warns you, that you're going to be there for three/four hours and take a book or, you know, take something with you. I think most people would do that anyway but a friend drove me there so I didn’t have to go on public transport. And almost immediately the receptionist was really good, lovely. She said that obviously there were times when you'd be sitting still but ‘just let me know if you want to go away and have something to eat or drink and so I am aware that you’ve gone’. 
And there was almost…I was given a sample bottle to go and…to the loo. Take a plastic cup from the water dispenser with you; it's much easier ladies [laughs]. And then sort of handed it back and then almost immediately I had the nurse who was going to…introduced herself and said that, you know, I'm your main person today and went through for blood pressure, blood tests and then told me and went through sort of the other things I was seeing. Came back to the waiting area and somebody else was already asking for me. So everything was going really well. I saw a physio who talked about afterwards [after surgery]; gave me some more information - it was one after the other. Then I think we went off to have some lunch, came back and that’s when I saw the consultants and yeah…oh I forgot the nurse did the MRSA check as well. But everything sort of flowed really well.

Did you have an ECG as well?

Yes, somebody gave me, yes somewhere along the line. I don’t think it was that first nurse; it must have been another one, yeah putting all the leads on. So there was very, you do, you are seeing different, lots of different, seems to be lots of different people but it's all very efficient.

The hospital was ‘fabulous’ but there was a ‘black hole’ afterwards. Physio one month after surgery would have helped Helene know if she was healing well.

Did you feel you were given as much information as you needed?

Yeah, I think beforehand absolutely fabulous. You know, you’ve got all this information. You’ve got people that are actually talking to you that are interested and presumably. And then you have this really big fall, black hole, afterwards.

Were you told anything about what happens afterwards because you're told a bit about recovery aren't you in that video?

Yes, yeah.

But what were you…were you expecting to have more appointments and then it's a bit of a shock when you don’t?

I think it's because… yeah, there's… I asked the physio who came round on a Saturday morning and got me out of bed and, no didn’t get me out of bed, l leapt out of bed. I was so pleased that I could get up and she went through the exercises that you have to do and I'd seen they'd got a hydrotherapy pool and I said, "Is there any follow-up?" and was a smack in the face when she said no and not even locally, which happened before when I'd had the meniscectomy [surgery to remove all or part of a torn meniscus. A meniscus tear is a common knee joint injury], I'd had local follow-up on, you know, at physio. 
So yeah I didn’t realise that there was this full-stop that you came to. And friends and family would ring me or, you know, visit and say, "How are you doing?" "As far as I'm aware I'm doing OK, I don’t know. I don’t know whether I'm supposed to be doing any more than I am." 

You said that there was a big hole in terms of follow-up. So you came back home and did you go back after six weeks I suppose?

Yes.

But were you expecting at that point that maybe you might see a physio after a couple of weeks or something like that?

I think yeah, I thought that… I know when I sort of had problems with the knee that I was seeing a physio for three or four months you know, once a month. So I assumed that maybe that would happen afterwards because the physio you see, I saw was…basically it was just an examination to how, you know the sort of your angle of your knee bend and asking you questions about pain and are you doing the exercises.

That’s in the six week appointment?

That’s, yeah, the outpatients which I found out was the discharge clinic and that’s it.

Could you tell me what would be the ideal situation, what would happen if you leave the hospital, you come back home to recover; you mentioned district nurses coming if you're living on your own for the first couple of weeks because it is difficult. And what else would be good during that, you know, coming home phase?

I think actually to have like within the first month, the end of the first month, a physio appointment just so they can check on your progress and say, "OK you’ve mastered these ones; I would like you to do these ones as well, as much as you can." Obviously, you know, people have different sort of levels of pain and whether they can master the, master it. 

It was frightening getting into the bath to have a shower. Helene kept her phone nearby in case she fell. District nurse support would have been helpful and encouraging.

Going from sort of what my family have said and friends, you have the strength of character to do all the things that they’ve told you to do. It always worries me that there are people that aren't going to do that. I'm on my own. I live on my own and, if I was older and living on my own, I would be far more afraid than I had been. Because one of the things I have is an over the bath shower. It was frightening, it is frightening getting into that bath and showering when you're on your own. 

And I don’t know, I think it would have been good if they had had a ten minute/fifteen minute visit from district nurses if nothing else, nothing else… yeah in the first few weeks. As I say, I've got a good family and friends that were constantly in touch. I always make sure I was wearing clothes, or whatever clothes I had had pockets in so I could carry my mobile phone around with me and strategically place it when I was getting into the shower and things so that I could reach it if I fell. 

It was little things like that and it would have just been nice if… it's just encouraging as well; encouragement you are doing well, you are doing OK but I think you really now need to push yourself a little bit further in this direction.

The care before and in hospital was ‘fantastic’. Helene had her dressing changed at the GP surgery so a professional could give feedback on her progress.

The pre-op assessment I thought was fantastic. There was no, there was a bit of waiting but not very much. I thought it was going to last much, much longer. Everybody was helpful, lots of information. I came away sort of really happy and pleased about that and went in. I had the op; was determined to come out the next day and the physio said, "Yep, OK." They were very busy. I felt sorry for the nurses. There seemed to be not enough of them. I didn’t suffer because of that but, you know, I just didn’t want to be in hospital and came out the next day, which was great and family rallied round, sort of helped with everything. I was so pleased I could walk without the pain. I knew there was dull ache from, an ache from the operation, but it was great. 

But the one thing I don’t understand was no follow-up - you're left on your own. If you don’t have the backbone, the courage, the strength, to do the exercises and get doing it yourself – there was nothing, absolutely nothing and I was so surprised that this is what it was like. I just couldn’t get over it; I really couldn’t get over that. You know sort of…I had a new dressing to put on and I thought, 'I'm going to go and ask for the surgery to do it so at least somebody professional is looking at this,' and which is what I did. They were very good, very nice and so it looked OK and I thought, 'Well thank goodness for that, somebody's told me something, it looks OK.' And then I had to go back to the surgery with… I'd be given the clip removers at the hospital to go to the GP’s. But then you're on your own, completely lost. 

Helene stocked up on food and filled the freezer before surgery. She also recommends doing the exercises as often as possible and sticking with them.

Are there any tips you would give to somebody from your own experience?

I think you listen… you do listen to sort of what they tell you like making sure you don’t have to do shopping. I know one can shop online these days, it's so, it is easy, but that’s one of the things I do remember taking on board was to fill a freezer up, have packet soups and yeah that sort of thing. Can you repeat the question now sorry?

The message that you…and tips you would give to somebody.

Oh right. Recovering, as they're recovering – you just to have to have the courage to do all the exercises as much as you can, otherwise you're not going to recover. You just have to stick with it and know that it's you and that’s all there is.