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Systemic Vasculitis

Thoughts on missed opportunities for a systemic vasculitis diagnosis

This page covers:
  • The consequences of opportunities taken, and opportunities missed, to diagnose systemic vasculitis
  • Opportunities to influence an earlier systemic vasculitis diagnosis
  • Types of missed opportunities to diagnose systemic vasculitis
  • Anger at missed opportunities to diagnose systemic vasculitis

The consequences of opportunities taken, and opportunities missed to diagnose systemic vasculitis

A few of the people we spoke to were grateful that their vasculitis was spotted at an early stage after they sought help. 
 

Nicola is grateful to her GP who, by acting fast, “saved so many aspects of my life” with vasculitis.

Nicola is grateful to her GP who, by acting fast, “saved so many aspects of my life” with vasculitis.

Age at interview: 46
Sex: Female
Age at diagnosis: 44
AAV (MPA)
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So right now, in life, I feel fortunate, feel fortunate to have had such really great care. I know it’s still there so that gives me lots of reassurance, I’ve been so lucky to be diagnosed really early. So I didn’t touch on that but I was, you know, well, I did, I suppose, I was diagnosed exactly in less than a week from being admitted on the Friday to being diagnosed on the Wednesday, I think is just unbelievable.

I would challenge anyone to have had from doctor’s appointment to diagnosis so quickly, and I honestly, honestly count my blessings all the time that I had such an incredibly intuitive GP who did the bloods that day, and such an amazing team at the [acute teaching hospital], to be able to quickly read those results and to quickly fast-track that treatment for me. Because I do know that they saved my kidneys.

Had they not acted so quickly, and I mean, like, it could have been just a couple of weeks from my GP saying, “Well see how you feel in a couple of weeks,” I could be on dialysis or be needing a transplant, and like, my goodness, what a different life I would have been living in terms of, you know, even just would I have been able to look after my mum? Those important things. So, I think that’s what illness does, isn’t it, it’s, you know, it can be life-altering for so many different reasons, but there was fast decision-making and there were skilled doctors and what they do, it, I means it’s lifesaving. I don’t like to think that they saved my life because it’s not as dramatic as that, but they saved so many aspects of my life. And I feel – yeah, I do, I feel really, I feel really blessed to be where I am just now, and so well.

 
It was, however, more usual for people to tell us that opportunities were missed, with serious consequences. Although he doesn’t blame anyone for what happened, Graham lost the sight in one eye following a series of missed opportunities to diagnose a type of vasculitis called giant cell arteritis (GCA). 
 
 

Neither Graham nor his doctors realised that vasculitis was threatening his eyesight.

Neither Graham nor his doctors realised that vasculitis was threatening his eyesight.

Age at interview: 81
Sex: Male
Age at diagnosis: 71
GCA
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So, he said, “I can refer you to NHS rheumatologist but there’s a 14-week wait,” so he said, “What would you like to do?” Didn’t press me. But he didn’t offer to get me, at any time, an emergency appointment, which he could have done but he didn’t. Anyway, that was fairly early on.

So anyway, I said, “Well, I’d like to go and see a rheumatologist privately in the interim, but I would still like to see the NHS rheumatologist in the 14-weeks thing.” So, I went to see a rheumatologist, of course, going privately, within days I’d got the appointment, went to see him. He did a, quite a thorough test, and he concluded that the condition was called polyarthritis, which I’d not heard of before. And he said, “That’s because it’s affecting not only the top part of your body, but also your legs and feet.”

So, he then put me on to medication called sulfasalazine. Sulfasalazine. And I started off taking this and after a while, the aching did seem, it seemed to ease a bit, the aching in the bones. However, I got a lot of side-effects from it: headache, skin irritation – terrible skin irritation, dry eye, stomach pains. So, I called the GP and he said, “Well, look, just halve, halve the dose. Because, you know, we are, we will, you will see the NHS rheumatology in due course.”

I did that but still the headaches were bad, really bad. So, I assumed it was all to do with side-effects from the sulfasalazine, so then I called the private rheumatologist again and he said, “I’m sorry, I can’t see you again. You’re only weeks away now from seeing the NHS rheumatologist. Just drop off the sulfasalazine and wait.” So, I did this - and I was only a few weeks away then, you see.

Anyway, this took me up to within two weeks of seeing the NHS rheumatologist, and then on the 8th of April 2012, I lost, I started to lose the vision in my right eye. And this can only be described as like a large doughnut in the middle of the eye.

I’d taken the grandchildren to see a film and had headaches. And we were driving home, and I said to my wife, “I’ve got to see a GP.” What I should have done in retrospect was to go straight round to A&E, but I didn’t.

 
Dean wonders whether, if his vasculitis had been diagnosed when he first brought up blood, “would the effects from me lungs that I’m suffering not been as severe as they are now?” Charlie and Gail also thought earlier diagnosis would have stopped them getting such severe organ damage, and Nicky would have been saved “30 years of on and off misery.” Isabella also regrets that her vasculitis diagnosis came too late to prevent the long-term side effects of treatment given when doctors thought that her various symptoms were caused by other conditions. 

Opportunities to influence an earlier systemic vasculitis diagnosis

Like Graham, people sometimes wondered if they should have been more proactive themselves. Isabella said her family always encouraged her to go to the GP sooner than she did. And, while Gail had a lot going on in her life, she wished she had been “brave” enough to ask for a second opinion. Lynn and Richard were frustrated that they had to do things which they feel should have been done by the NHS.
 
 

Before her vasculitis diagnosis, Lynn – an intensive care nurse - “led myself up the garden path” trying to find out what was wrong because “no one else was doing it.”

Before her vasculitis diagnosis, Lynn – an intensive care nurse - “led myself up the garden path” trying to find out what was wrong because “no one else was doing it.”

Age at interview: 54
Sex: Female
Age at diagnosis: 50
Behçet’s syndrome (atypical)
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This was one of the hardest things I had ever done in my life, to continue the search. And at times it got overwhelming, and I had to draw back from it and I had to not - because it felt that all I was, that the illness and my symptoms had almost become a bit of an obsession, that all I was doing was spending my time researching, looking up things. And I was also aware that I was – that although I was a nurse and so could read research and could understand a lot of the terminology and whatever and had access to resources that I could travel all over the UK and that I could see - I saw quite a few people privately.

It was, so I had lots of, there was lots of positive things enabling me to do that, but I led myself up the garden path so many times because I was doing this with symptoms and thinking, “Is it this or is it that or is it the next thing?” because I shouldn’t have been the person that was doing it, because I didn’t have the type of knowledge to try - it was like, going to see people and various test results that came in and whatever, it was like collecting pieces of a jigsaw that were eventually put together, and then my diagnosis was revealed. And it would have been quicker, it would have been cheaper for both myself and the NHS, I mean, every single part of me was scanned numerous times.

And it was just, it was so wasteful, the fact that I was a highly-trained – you know, in intensive care, where there’s real shortages in appropriately-trained, you know, I was at home on sick leave when I could have been in ITU, caring for people. It was just such a waste, I wasn’t, I wasn’t the right person to do this, but the responsibility had fallen on me because no one else was, was doing it, and I was the person that was asking the questions, that was saying, “Could it be this? Could it be that?” that was trying to think of the next person to see.

 

Richard wasn’t prepared to wait nine days for blood tests when vasculitis could affect his eyesight.

Richard wasn’t prepared to wait nine days for blood tests when vasculitis could affect his eyesight.

Age at interview: 64
Sex: Male
Age at diagnosis: 64
GCA (with PMR)
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So, I thought, [sighs] “I’m not going to waste time going to the GP.” So, I phoned, tried to the phone the rheumatologist, the consultant. Spoke to her secretary, explained the symptoms, backing it up, you know, “I’m a PMR patient, I know the symptoms, I’ve got this, this, this, this, this, you know, I’m worried.” And so, the secretary went and spoke to the rheumatologist. I got a phone call back from the secretary in the afternoon to say, “Right, the doctor says, if you arrange to get bloods at your surgery and then we’ll be able to assess whether you’ve got it or not.”

[sighs] “Oh, okay,” I was a bit disappointed, and I phoned my surgery and the first appointment I could get for bloods was nine days away. And I thought, “No, this isn’t on.”

With hindsight, I’m a wee bit disappointed I waited overnight thinking about it, “What should I do?”, and it was the next day that I just decided, “No, this is ridiculous.” I’d made the appointment for the bloods, but I kind of thought, “No, this is ridiculous, if the GP can’t help, if the consultant can’t help, I’ll go to accident and emergency.”

 
However, when people were proactive, they didn’t always find this was welcome. Melissa’s dental hospital consultant had suggested she might have a type of vasculitis called Behçet’s syndrome, but said her rheumatologist “told me that it’s far too rare, and that it generally affects people of Middle Eastern origin, that as a young white woman the chances of me having it were virtually none.” Some people had identified vasculitis as a possibility when searching their symptoms on the internet. Charlie’s wife, for example, thought he had GPA (a type of vasculitis) but although she “kept saying at different appointments…it was completely put aside every single time.” 

Types of missed opportunities to diagnose systemic vasculitis

People gave a number of examples of how they felt opportunities to diagnose their vasculitis were missed. Karen thought that her private ear, nose and throat consultant should have made a link between her symptoms, and Marie that her doctor should have documented the details of her headache. Several people had asked for copies of their medical notes and, from reading these, felt there were many occasions where test results could have raised the vasculitis alarm. 
 
 

Sharon’s GP thought her rash was an allergy. She will “never know” if her kidneys could have been saved if they had recognised it as vasculitis.

Sharon’s GP thought her rash was an allergy. She will “never know” if her kidneys could have been saved if they had recognised it as vasculitis.

Age at interview: 49
Sex: Female
Age at diagnosis: 43
AAV (MPA)
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Yeah. I think [sighs] the one, the one GP visit that sticks in my head was when I developed a vasculitis rash, which was really quite extreme. That was in the October, I wasn’t diagnosed until the April. And this rash was like nothing I’ve never, ever experienced, from the tips of my toes up to about my midriff, and so fiery, so hot, so raised. And try as you might, you couldn’t not scratch it, so I had, you know, the scratch marks everywhere. And the GP that I saw that day thought, possibly, allergic to the washing machine powder, you know? “And if it doesn’t settle, come, come back and see me.” Which, which I obviously accepted, because I came away and waited a week to see if it, if it did settle. It took longer than the week but I mean, it did settle eventually, but I just wonder with that flare-up was the first extreme flare, that there was anything, everything else was so vague, whereas the rash I thought, “Hmm,” again, with hindsight, now I know exactly what it looks like and if only the GP knew exactly what it looked like, would that six months have made a huge difference? Would that have been a point where my kidneys were saveable? It’s something that we’ll never know, so in that respect, there’s no point in dwelling on it because it’s been, and it’s gone. But again, that’s why raising the awareness is so important.

 

On seeing her medical notes, Angharad realised signs of vasculitis had been there “but no one was putting the pieces together.”

On seeing her medical notes, Angharad realised signs of vasculitis had been there “but no one was putting the pieces together.”

Age at interview: 29
Sex: Female
Age at diagnosis: 24
Takayasu arteritis
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What did getting the diagnosis, what did that give you that you hadn’t had before?

A sense of relief because I’d been back and forth to doctors for so long, been referred to different consultants, no-one would tell me what was wrong, it felt like no-one was interested in finding out what was wrong, and it was like, “Well finally there, there’s proof, there’s evidence and I’m not going mad, it’s not inside my head you know, I was right about everything.”

And I think as well like when I looked at my hospital notes and things and before, I remember before one of my appointments in [the major teaching hospital in England] I’d asked one of my, the respiratory registrar to go over all the blood tests with me so I could sort of obviously have a more informed conversation with the rheumatologist and he was able to go, to like my first lot of blood tests in 2008, and there was a lot of signs that things weren’t right, but they were never followed up.

The consultant at the time, like I said, like he didn’t really seem bothered, but things like my ESR blood test, which is a test of inflammation, was really high and I think they did try doing another test, but I don’t know if they took enough blood or there was something wrong with the sample, but then they never tried again, so there’s no, sort of no record of that.

My CRP, which again, is another level of blood test to sort of test inflammation and can be a sign of infection as well has sort of always sort of been consistently high? And above normal.

And when I was sort of misdiagnosed for the first time they done things like rheumatology screening to make sure there was nothing like that because I’ve, there’s rheumatoid arthritis in my family? So, they checked things like that. But then the generic sort of tests like ANA, which is sort of a generic rheumatology type sort of you know, not specific to rheumatology I don’t think, but is a sign of you know, things aren’t right - that was positive?

So again, there were lots of different signs that things weren’t right but no-one was putting the pieces together? It was just always as if everything was very separate. And then because of obviously I’d had this diagnosis of a blood clot, it was all centred around that.

 
Brenda, Graham and Gail said that NHS waiting lists had contributed to delays in their diagnosis, leaving them with more severe organ damage than would otherwise have been the case.

Anger at missed opportunities to diagnose systemic vasculitis

Some people we spoke to told us they felt angry that opportunities to diagnose vasculitis had been missed. For Lynn, the experience meant she had to “learn to trust again.” 
 
 

Melissa had symptoms as a teenager for five years before vasculitis was diagnosed and felt she wasn’t listened to. Looking back, “it’s mostly anger I feel towards that time in my life.”

Melissa had symptoms as a teenager for five years before vasculitis was diagnosed and felt she wasn’t listened to. Looking back, “it’s mostly anger I feel towards that time in my life.”

Age at interview: 22
Sex: Female
Age at diagnosis: 18
Behçet’s syndrome
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I know hindsight’s a wonderful thing, but how does that make you feel looking back on all that?

I feel like there’s some days that things have been challenging and that perhaps I’m not such, in such a good place mentally. I look back on it and I feel like sort of those days when I was young, people say that school days are meant to be the best days of your life, and I was so, so unhappy, and no-one really saw that outside of my family.

And I feel like sort of, that sort of part of my childhood was sort of taken away from me, and it’s, it’s upsetting sometimes but a lot of the time I look back on it and I’m angry. I’m angry that maybe if my GP had listened to me sooner, if the first rheumatologist had listened to me. It shouldn’t have had to get to the point that I was experiencing mental health problems because my physical health was in such a bad way, to actually get to see the consultants that I needed to see. And yeah, it’s mostly anger I feel towards that time in my life, and that’s shared throughout a lot of my family.

 
Karen, Lynn, Charlie and Marie had, at times, used complaints processes to try to get improvements in their care. Mo and Gail came to different decisions about whether to talk directly to the consultants they felt had misdiagnosed them.
 
 

Mo is angry that her vasculitis was “misdiagnosed.” She feels doctors who talk to each other are more likely to spot it.

Mo is angry that her vasculitis was “misdiagnosed.” She feels doctors who talk to each other are more likely to spot it.

Age at interview: 60
Sex: Female
Age at diagnosis: 43
AAV (GPA)
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And I was angry. I was very angry, and to this day, it was one of the chest physicians and he came into my workplace one day and I really was about to walk up and say, “You misdiagnosed me.” I was so angry with him. I didn’t, and I thought, “No, just don’t, don’t go down there.” But I was angry with the ones that just misdiagnosed, they were so much into their own, specialities? [smiles] That they wouldn’t think about looking outside their own box. You know, the chest hardly talked to eye, eye never talked to the ENT. You know? It was, it was – and then I thought, “we’re all sitting in the same hospital.” But I do think that’s a flaw within – I hope it’s changed with the younger generation, but I sometimes think that, maybe just living in their own speciality, not looking outside it. And I think that’s sometimes just medicine at times, they don’t see past their own box.

 

Gail went to talk to the consultant that she felt had missed opportunities to diagnose her vasculitis (“Churg-Strauss”).

Gail went to talk to the consultant that she felt had missed opportunities to diagnose her vasculitis (“Churg-Strauss”).

Age at interview: 52
Sex: Female
Age at diagnosis: 50
AAV (EGPA)
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So, I then, I received, it was months later I received an appointment, probably my yearly appointment to go back to see my consultant, my ENT consultant, that’s what I’m trying to say, my ENT consultant, and I wasn’t going to go because at this point I was under [my vasculitis consultant] and there was no reason for me to go but I thought, “I’m going,” you know. I went in to see him, it wasn’t to get any treatment, but I just wanted to say to him you know, “You missed this.”

So I went in and, he didn’t look at me, he had his head down, he was actually very shrunken shoulders, almost like a wee boy, really, he really was, and he, he kind of looked up and said, “Hi Gail, how, how can we, you know, how have you been?” and I said, “I haven’t come here for any treatment or to discuss anything,” I says, “I just want you to know that you missed this.” I said, “Obviously you know I’ve got Churg-Strauss,” he said, “Yeah, I heard you had,” and I said, “And I’ve been told that you missed this, because one of the symptoms is severe sinus, problems, polyps et cetera,” I says, “And I had, I’ve seen you for two years and never, it’s never been any different, you just kept giving me antibiotics or ‘Oh, well we need another surgery’, even although the second surgery,” I said to him, “You said to me ‘I can’t believe these polyps are back and worse than ever’ then,” because I was so blocked, I just, the congestion was horrific.

And he said, and I said that to him, I said, “At that point, okay, the first time, and okay, you know, antibiotics et cetera because you know I’ve got asthma and you know I’ve got respiratory,” but I said, “At that point where you said to me, ‘I can’t understand, I don’t know why’,” and he says, “Polyps can grow back, but so quickly,”, and he said, “You’re going to have to have another surgery,” and I said, “That’s the point I think where you should’ve went, ‘Hang on a minute, what’s going on? Is there anything else going on?’” and I told him that. And he said to me, “I’ve never heard of this.” And I said to him, “Well I understand that and it’s extremely rare and, you know, maybe you haven’t heard of it but there’s got to come a point where you’re seeing a service user or a patient where you think, you’re looking at the bigger picture thinking, ‘What’s going on here? Why is she coming back? Why is he coming back with these symptoms?’”

 
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