Janet

Age at interview: 74

Brief Outline:

Since having her right hip replaced, Janet has had pain on her left side, including her knee. At the consultation with a surgeon, she was told that she would not need knee replacement surgery. Janet’s disrupted sleep and knee discomfort improved after a steroid injection in her hip.

Background:

Janet is a retired university tutor. She is married and has two adult children. Her ethnicity is White British.

More about me...

Janet has arthritis which affects her hips, left knee, and back. She was diagnosed with Grave’s Disease and had two flare-ups in her 50’s, both of which were treated with long courses of medication. Following her first flare up of Grave’s disease, Janet began taking vitamin D supplements and has continued to do so ever since; as a result, she has “absolutely superb” bone density. Janet arranges for regular blood tests, as she was told that at some point her thyroid will become underactive. She also has high blood pressure. Janet had a hip replacement on her right side in 2019. Since then, she “started getting pain on the left-hand side and much more worryingly in the knee as well as the hip”.

Janet tries to keep active, and takes a keep fit class or goes for a walk or swim every day if she can. She has discomfort and difficulties walking, especially with steep stairs, and struggles to get up after kneeling down. However, for Janet, the main problem is being unable to sleep at night, “rather than pain or immobility”. It’s difficult to work out the cause and effect between her hip, knee and anxiety, but she “can never get comfortable” and it becomes a vicious cycle. Janet bought a new mattress but “it didn’t make any difference, in fact, I think it was worse”, and she took either paracetamol or codeine at night. Sleep deprivation then had a knock-on effect on the rest of her life and she wondered “maybe if I could sleep better, I wouldn’t have such trouble with my joints”.

Janet had an appointment with a knee specialist cancelled at the end of 2020. She was offered physiotherapy in the meantime, but it took several months to set up. The appointment was rescheduled for six months later. Janet knows there have been major disruptions because of the pandemic, but also has “doubts about the administrative liaison between different NHS Trusts” and the healthcare system in general.

Before Janet’s appointment with a specialist, knee replacement hadn’t been explicitly mentioned but she was aware of it as an option. She had hoped to get some answers about “what the relationship is between the [left] knee and the hip, and which to do first” in terms of treatment. Janet feels it is important to look at the “whole person” and the relationship between their health concerns, but finds that NHS healthcare isn’t really set up for this. She had also wanted to know more about timings and the risk that she could “have [knee replacement] done now and then need it redone when I’m 95”. Although Janet felt “quite blasé about a hip operation”, she was “not at all confident about a knee operation”, as there had been “enormous deleterious effects” for two people she knew who had the surgery.

Janet had an appointment with an orthopaedic consultant in June 2021. It was recommended that she have some more tests and a steroid injection in her hip. Janet was given a steroid injection in the left hip in August 2021, and spent the summer “virtually pain free”. Her spasms went away, and she began to fall asleep more easily at night. In the autumn, her pain started up again, but was not as bad as it had been before. Now that her knee issues and sleep problems have settled down quite a lot, Janet is “not anxious about the knee, just fed up with it”.

Janet had a second appointment with a consultant in November 2021 and was told that “neither the knee nor the hip were bad enough to go for an operation”. In contrast to her earlier scan results, she was told that her knee condition was ‘moderate’, rather than ‘moderate to severe’. Janet wonders if she would have been operated on if she went private. She doesn’t like not knowing “whether it was a question of finances or waiting lists, or whether it was a medical decision”. Janet is considering having a heath check abroad and, if they recommend knee surgery, she will “perhaps pay up and do it”. The consultant recommended that Janet have another steroid injection in her hip and a scan of her spine. Janet has since had her spine scanned, but hasn’t received the results which is a source of annoyance, as she knows the consultant’s notes were written up months ago. She has also not had the second steroid injection in her hip as prescribed.

Janet recently saw her GP again about pain in her right hip. She was sent for an ultrasound scan, which showed an ovarian cyst. Janet is now waiting for an operation in the next few months to remove both ovaries and the cyst. The decision to go forward with the surgery was made “fairly easily”. She was struck by how quickly her treatment progressed in comparison to her joint issues where “I wait so long between different steps that I’ve forgotten where I am”.

Janet’s biggest problem was being unable to sleep well at night from discomfort in her spine and knee. Lack of sleep affected her mental health and wellbeing.

Well, the arthritis means that I have difficulties walking down my rather steep stairs. And you know, putting my socks on, [laughs] cutting my toenails, that sort of thing.

I do try to follow a regime of either doing my oldies' keep fit class or exercises or a walk or swim every day of the year. Haven’t been very good just lately.

And, you know I can walk fine, it’s just when I go to bed, I don’t sleep. Because I can never get comfortable. The problem is not sleeping at night. That’s the main problem rather than pain or immobility.

Janet didn’t sleep well at night. She was unsure if this was because of pain from her hip, knee or spine.

But at night I can’t tell if it’s the hip or the knee or, or, or my mattress. I spent £1,300 on a new mattress and it didn’t make any difference, in fact, I think it was worse [laughs] and of course, again in the middle of the night when I’m tossing and turning and I cannot sleep and it hurts and sometimes it’s spasms from the spinal area around my waist right down to my foot.

How much of that is to do with the arthritis and how much that’s to do with just tension? ‘Cause I can’t get to sleep and I’m getting so anxious [laughs] who knows? Nobody’s ever talked to me about it.

Yeah, that's one of my questions - whether any of the conditions or the different parts of your body affect one another? Whether that’s making it worse or the treatments affect the conditions at all?

Well, yes, obviously. Keeping me awake affects my general abilities. And you know, I’m an anxious person. And I’m not an anxious person in the daytime at all. But the minute I go to bed I start thinking about things and worrying about things. So, so, yes, it affects, it provokes anxiety.

I think I might put a little more stress on the difficulty of sleeping. And whether or not, you know, again, if it was more holistic, somebody would say, “Oh well, there’s this or this we can try about sleep deprivation” [laughs]. You know, maybe if I could sleep better, I wouldn’t have such trouble with my joints? I don't know.

Janet wished the NHS healthcare system could look at the whole person and share information better when patients are seen in different NHS trusts.

I think my major doubts and my hopes are about how joined up things are going to be. How do they know what I’ve done before and so on and so forth. Who are they going to tell and so on?

You see, I should explain my impatience with the system is, ‘cause I have lived abroad for a long time where [sighs] the normal GP consultation is half an hour, not ten minutes. And where you can see a consultant any time. And where you keep your records. So, you know what the hell’s going on.

And coming back to England ten years ago, I found it really quite distressing that there wasn’t. Well, things like, my then GP absolutely refused to take anything that I gave her from Belgium [laughs] which was ridiculous. You know, I had x-rays and reports and things that could’ve been relevant, but she didn’t wanna know.

For instance, I lived in London when we first came back and I did have a scan on my spine for back problems at that point. Now whether or not anybody knows that now, I haven’t a clue because I have my doubts about the administrative liaison [laughs] between different NHS Trusts.

Could you reflect a bit on what’s the impact of having, as you say, shorter consultations and longer waits to to see people?

Oh, the impact is that, you know, the poor GP - and I have many friends who’re in the medical profession and I do sympathise - they, they can only talk about one thing at once. And you know, you’re not going to book [sigh] day after day after day different consultations, so they never get the full picture.

Janet’s hip was the cause of her knee pain and she was referred for a steroid injection in her hip.

In November I went and saw another person in the same consultant’s team at the knee clinic. He had looked at - I can’t remember - the order of things. Basically, I’d had the injection, I’d also had… no, he said that neither the knee nor the hip were bad enough to go for an operation, and he recommended two things, which was another injection in the hip, which hasn’t happened, and a scan of the spine, which has happened but there are no results yet through. Which is not surprising since the letter dictated in November only came in January.

So, since that time, you know, I carry on with the knee pain, not as bad as right at the beginning, not that bad at all, there’s still the problems remain the same, I can’t walk down my steep stairs at home, I have to do it one step at a time. I can’t ride a bicycle, but I’m sleeping on the whole better.

At the beginning I was told that the knee showed bone on bone, which is why I was referred to the knee clinic, and it was moderate to severe, and then the last knee specialist I saw said it was only moderate, so yeah.

I came away with a question in my mind - would I have been told something different if I was paying to deal with this privately?

And that’s what I don’t know. I don’t know whether or not the decisions and the advice is given within the very real constraints - that I do understand, that the poor NHS has to deal with - or whether the advice is that the straightforward medical advice. That’s the issue.

Janet says the NHS is fantastic at dealing with emergency care but under resourced and under staffed for “maintenance problems“.

It ties in with one’s general conception of the NHS - that they’re fantastic about dealing with emergencies, and under-resourced and under-staffed for maintenance problems.

Well, if the great British public would be willing to pay more taxes and the great British government would be willing to raise them for the NHS life would be different. But obviously it is not satisfactory when a letter dictated in November is posted in January. It’s ridiculous.