Coordination and organisation of systemic vasculitis care

This page is about:
  • Coordinating systemic vasculitis care
  • Thoughts about systemic vasculitis teams
  • Bringing in systemic vasculitis specialists
For ideas to support service improvements for people with systemic vasculitis, see our ‘catalyst film’.

Coordinating systemic vasculitis care

People who had difficulty getting a vasculitis diagnosis noticed that care was more coordinated when they came under a service designed for people like them. Dawn, for example, now felt reassured that things “won’t get lost in the system.” However, even with a specialist vasculitis service, coordination of care was more complicated for people who, like Salma, had other health conditions too.

After being “round the houses,” Nicky’s vasculitis is dealt with “in one place with people who understand everything that’s going on with it.”

As I said, I did go round the houses, starting with dentistry and then dermatology and eventually to immunology. And it was, now that I’m under immunology, it’s all fallen completely into place, I don’t have to go anywhere else for anything else. Everything is dealt with, within immunology: the skin side of it, the ulcers, the rheumatism, or the arthritis rather, that is what it is, I've had that for a good many years. I don’t think my joint problems are caused by the Behçet’s, that’s just the rheumatoid arthritis. But everything else is dealt with very neatly within immunology. But yes, I did have to go round the houses before I got there but now I'm there, it’s all sorted out. So, I mean I don’t know, I don’t know much about other forms of vasculitis, because there are an awful lot, but for me, certainly, immunology is the go-to place and I would fly my flag up their pole any day of the week [smiles].

And it’s so much better that way, because you’re not sort of trailing around a hospital with an appointment in the dentistry clinic then an appointment in the dermatology clinic, it’s so much better to be treated in one place with people who understand everything that’s going on with it. So, they understand the ulcers and the skin problems and everything else, it’s so much better, and they’re very knowledgeable, you know, they do know their onions in there. I mean obviously the, with the ulcers, the dentist, the people in the dentist hospital were, knew a lot about ulcers, but couldn’t get to the root cause of it. Until I, it was, it wasn’t until I sat down with Dr [surname] in immunology and he put all the pieces of the jigsaw together and he did this pathergy test and he said, “Right, there’s your diagnosis,” and off we went towards treatment.

So, it needs somebody like him or the other consultants in the immunology clinics to be able to put all those pieces together, and that’s the difficult bit, because other specialties didn’t seem to be able to, I suppose because you can’t expect doctors to know everything about everything, obviously it’s absolutely impossible, but they just didn’t seem to have any idea of how to put the pieces together. And the immunology people just immediately [snaps fingers] bing, bing, bing and it all fitted, fitted fine.

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Salma’s vasculitis care is coordinated by a multidisciplinary team, but she needs to see other doctors too.

Yes, certainly with my renal consultant, we have a very good relationship, he’s, he is a fantastic doctor. His bedside manner is absolutely fantastic, I cannot complain about him at all.

[The renal consultants and the rheumatology consultants work as a multidisciplinary team for people with vasculitis. They talk to each other before they make a decision, such as whether I need another rituximab treatment. Sometimes they have joint clinics, so I can see them both on the same day. The vasculitis clinic also sometimes arranges for me to see the diabetologist as well. Once a month they have a team meeting where they discuss any vasculitis patient who needs a more rounded approach.]

Yes. Yeah, so my, going back to my renal consultant, I, because I was working at the hospital, I have his email address and he always says to me, he always talks to me and explains things to me and then says that “We can try and deal with this problem of yours with this, if we do these actions and are you happy to do that?” He always includes me in any decisions that we make together about my health.

The rheumatologist, she’s, although I haven’t seen her very much, she is very good and she will, you know, talk, ask me how I feel that things have gone, and how I feel about maybe increasing or decreasing some of the medication or whatever. So yeah, the rheumatologist, the diabetologist consultant, they are very good as well.

Actually the, one, the main consultant that I used to see in clinic, she, we would have a great, you know, chat, after my appointment’s done, she’ll spend five/ten minutes talking to me about this, that and the other. And she used to get, have students in clinic and she, we would play this little game with them, that she, “Salma’s going to tell you what her symptoms were – or are – and you have to guess what her ailment is basically.” So, you know I’d give them a little bit of information and then either they would pick it up or they wouldn’t pick it up. So, most of them did, so obviously they were doing quite well with their studies.

But, yeah, my diabetology consultant, she was very, very good and she would always spend a few minutes chatting with, not just me, with all her other patients as well because if she was in clinic that means that we had at least an hour’s wait, sometimes it’s like two hours because she was spending more time with her patients. But now I’m seen by, registrars I guess they are, who work with her, and I have to say they are okay, they are good, yeah.

So, the, oh, I also see an endocrinologist once a year. Initially, many years ago, I started seeing an endocrinologist and he then diagnosed me with Cushing’s syndrome and so since then, because of my various illnesses and all the medication I take, I was getting hirsutism, a lot of hair on my face basically. So, he has been keeping, he has been, they ask me once a year to go in and check that everything is fine because I’m taking finasteride, which, just to help with the re-growth of the facial hair. So yeah, I have one, an annual appointment just to check everything’s okay and see how I’m getting on with the tablets, whether I’m having any effects, side effects or whatever, so, yeah.

So that, and the neurologist I’ve only met once, so I wasn’t that impressed with her at the first meeting. I’m hoping things will improve from there. And I think that, that’s probably all of them, I think. Oh, the urology’s also a very new thing so I haven’t seen the consultant there at all yet, so there we go.

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We heard that both services and the person with vasculitis must coordinate care. Angharad and Claudia were among those tired of chasing appointments. Jane X thinks it’s “a ridiculous situation” that “the NHS leaves patients with the job of coordinating their own treatment, hence my notes.” It was common for people to compile their own notes or spreadsheets of appointments and letters.

Charlie finds his vasculitis healthcare “incredibly disjointed.” Poor communication in a “mad system” leaves him “almost a hundred per cent responsible for my own care.”

So, you have this absolutely kind of mad system, really, that does not work, where you have this group that you’d call rheumatology, that are essentially the generals and the ones commanding things, and then under them there would be specific specialists in different organs. For example, you’d have the renal units for the kidney, you’d have respiratory teams for the lungs, you’d have ENT for the ear, nose and throat, and you would, could then end up like me, a tracheostomy, having other specialist teams.

And, essentially, the way that it works is that it doesn’t work [smiles]. It doesn’t work at all, so you have rheumatology generally do the referrals and they ask you to see the other people, but the other people don’t have that much knowledge about vasculitis. But if they do, my experience is that none of them communicate at all, and not very well. And if it is, it’s done by a short letter that doesn’t provide any real detail or granularity. They never contact each other via telephone, they never contact each other face to face, they have no idea what the other person, has never read into what the other doctor’s decisions have been.

Rheumatology, when I ask them questions at all about specific organs, they often shrug it off or will say, “Oh, we, we’re not specialists in that, we don’t know,” but rheumatology need to be the commanders that are able to manage these other parts. And then when I go to specialists and we discuss things, they firstly don’t even call it rheumatology, they often get the words wrong and they say, “Oh, what’s your immunologist said?” or, “What’s this person said?” and they use funny language. They often have never read the notes on what the latest updates are from rheumatology about my activity in my vasculitis, and then they will do their procedure that they are familiar with, and then not really give that much feedback on the overall part of that, and then basically just send a letter back to rheumatology saying what has been done.

So, the system at the moment, where I live, is incredibly disjointed. And I would say that what that has led to is really just me being almost a hundred per cent responsible for my own care. I have to manage every doctor, I have to manage every specialty, I have had to find very – contact details that were definitely not in the private domain – in the public domain, sorry. For example, I now have access and had to get different ways to get access to private emails of PAs, for many different phone numbers for different parts of the departments, just to be able to contact the different people that are managing my care, and to be able to manage what’s needing to be done.

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Care that was shared between medical specialties, or between local and specialist centres, also brought coordination challenges.

With vasculitis, Diane had to see several medical specialties when she wanted to have a baby; she found this “wasn’t really joined up.”

So, I had to go to see cardiology to see whether he thought it was wise and he says, “Well, it’s going to be high-risk. It’s your own decision, I can’t tell you whether, whether not to or to get pregnant, but this is what you’d have to do.” So, I had to switch to the, to the Clexane, then I had to go and see the obstetrician, and she went through all the other medication I was on and what I would have to come off if I was to get pregnant or be pregnant.

And what else was there? There was somebody else that I never actually got to see, I can’t remember what type of “ologist” it was, [laughs] but when I went back to see the fertility specialist, he says, “Oh, well I’ve written to such and such and they haven’t come back to me.” It was one of the doctors I’d seen, actually, maybe it was the obstetrician, hadn’t sent her letter back to him. So it was, wasn’t really joined up, and the only reason, the only reason why I went to see all those people was because I had the fertility appointment prior to being so ill. I think everybody was kind of afraid to say yes or no or maybe. And we then, at that point, because I was on methotrexate, we decided to leave it until after I was off methotrexate, about six months or so, and feeling well again. And then I never really got to that point because I was off it for a few years, back on to it again.

So. And then, with fertility, you, the weight thing, so I’ve actually, from – when I went to see him, my BMI was too high – my BMI has probably shot up, actually, instead of going down. So, if I was to go back for fertility treatment, he wouldn’t do it because I would have to probably lose about five or six stone before, before that was even an option, if I wasn’t on methotrexate and if I was feeling healthy enough.

But, again, that was me sort of initiating that process, if you know what I mean? If I hadn’t have pushed for that, that wouldn’t have happened. The specialist in England said there’s no reason why I can’t, if the vasculitis is active, then that probably would have been the reason why I couldn’t before, but he says, “Obviously, we’d have to monitor you very carefully.” And he has had many successful pregnancies for people with Takayasu, so it’s just a matter of managing it.

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Dean keeps all his clinic letters to help coordinate care between local staff and vasculitis specialists.

So did you say that your lung specialist is also in [hospital in other region] or your lung specialist is in [local acute hospital]?

I’ve got both; I’ve got one in [local acute hospital] and one in [hospital in other region].

[Laughs] right.

Okay? I’ve got a vasculitis, [laughs] this one, vasculitis specialist in [hospital in other region] and because – and I don’t know whether it was due to the steroids or not – but I did get osteoporosis, so obviously I’ve got an osteoporosis doctor here, rheumatology specialist, the rheumatology, lung specialist here; lung, vasculitis at [hospital in other region]; and just one GP. I used to have more GPs that understood me illness at my surgery but I’m down to one, the other one retired, so.

I tend to have five, or six, port of calls because I also use the vasculitis nurse, if I’m not sure on anything I ring her and I’ve got a direct number to her, you know, so if I’m thinking, “Hang on, that doesn’t look right,” or there was a doctor looked at me bloods and he says, “Oh, I think you should stop this and I think you should stop that,” and I’m thinking, “I’m sure my bloods have been a lot lower than this,” so I said to him, “Look, can you ring [hospital in other region,” and [they] then, the vasculitis nurse rang me and said, “No, that figure’s good.”

You know, so if a doctor, another doctor who doesn’t know the illness interferes that’s when you get your problems, you know, or, even I’ve had the, the osteoporosis, not the main specialist that normally sees me, somebody else, she’s tried to interfere and I think then she’s gone back to him and he’s said, “No, just leave it. When I see him next, I’ll sort it.” So, it’s when other doctors interfere with the five or six that I tend to use, that’s when I get me problems.

Do you feel that you have to, I mean it must be difficult dealing with all these different people? Do you, how do you deal with that, how do you remember everything that people have said, and?

Do you know what, believe it or not I take every letter with me? I’ve got every single letter, even going back to, even when I was ill in Spain, that’s in me file, my folder here at home. And I just take every letter with me because you can’t remember everything. If you’re trying to sort something out, here, what a specialist has said, say in [hospital in other region], they’ll maybe say, “Well what date have,” you’ve got to have that letter in front of you, so I keep every, I don’t throw anything away, so I can go back seven years of letters, you know.

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People told us that poorly coordinated services could have serious consequences for their health, especially if investigations or treatment were delayed or not done. Blood tests or x-rays were sometimes done more times than was necessary, and it was common for people to have to tell the same story over and over. We also heard that poorly coordinated care left people unsure about who to contact when they needed advice.

Thoughts about systemic vasculitis teams

People often told us about the qualities of their vasculitis team and how this made them feel. We heard that a team is something more than the individual people in it. Grant, for example, used the word “they” when describing what his team do and talked about “the way they go about their business,” adding that, “I presume they do it for everyone.”

Sharon’s vasculitis team are “on the ball,” with “good leadership” and “such a desire to care for you.”

My renal team are fabulous. I cannot praise them highly enough, and their personal support just goes beyond belief. You know, their dedication to you as a person is absolutely wonderful, just, you are, you are treated as the whole person. Their patient list must be huge. You know, when you arrive at clinic, there are 20-odd people, every day, in their clinics, but they have such a retention and such an interest in you all. They remembered the smallest details. You know. “Oh, it can only be six wee- six months until your daughter’s wedding now, how are the preparations going along?” “How was your trip to Bucharest?” They have that knowledge of you, as well as the scrutiny over your medical facts, and they are just so on the ball, they are wonderful. Absolutely wonderful. From everywhere, from your consultant, through the nurses, the auxiliaries, the receptionists, the domestics. They make the best toast in the world, they’re all great. They’re all fabulous.

Where does that come from, do you think?

For the renal team?

How is it that they manage to do that?

That’s a great question. What is that ethos that manages to do that for them all? You would say it was leadership, but then it’s down to individual personalities as well. So, I do believe that they do have good leadership. But they also have such a desire to care for you. They also must be happy in their work because you get that vibe from them. I’m not saying that they don’t have their moments, because I’ve seen them all have a little, you know, hmm at each other. But that’s never the feeling that you leave with. I always feel supported, and I always feel that they have a plan. It changes regularly, [laughs] but they always have a plan. “We’re going to do this; this is the way it’s going to be.” It’s explained to you in whatever detail you want – I like detail, other people just maybe don’t want to know quite as much. But they do that, and they take the time, they explain it again to my husband when he comes in. When my daughters appear four or five hours later, they come back, and they explain it again. They include everybody.

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Many of the people we spoke to were clear that they are – or should be – part of the team. As Lynn said, “we talk about shared decision-making, and we talk about multidisciplinary teams, and I wanted to be part of that as well and have some input.” People who first met their vasculitis team while they were ill in hospital got to know them well. We heard this made a strong foundation for a long-term relationship.

Mo’s vasculitis team have known her for a long time. She “can’t fault” their communication and feels able to disagree with decisions.

And I literally, I have, you know, email addresses, it’s a generic email address that goes into the vasculitis specialist nurses there? And they, and also the whole team can see it. So, you know something that I would have sent it off to [name of vasculitis consultant], de-de-de “Has anybody replied to Mo? Do we know what we’re doing? Are we bringing her in?” You know? So, the communication – it’s always, I think, communication – is so good in this team. I really can’t, amongst that, I really can’t fault it. And that’s why – one of the reasons that I couldn’t move elsewhere because I just wouldn’t be sure I’d get the same care anywhere else if something goes wrong. Because they really do pick me up fairly quickly, but that’s because they’ve, they’ve known me for so long. And I’m – and I really am, Avril, I’m really fortunate that, that I have them there. Other people don’t.

But they also know I’ll kick up a rumpus if I’m not happy [laughs]. So, there was one time I had terrible – it was an ear infection, but I really couldn’t, I really couldn’t stand or sit, I had to lie flat, and it really was quite nasty. And they said, “Oh, we haven’t got a bed for you,” and I thought, “Sod this, I’m going up to A&E,” and I took myself up to A&E [laughs] and I said, “They will find somewhere for” and I will create a rumpus. And fair enough, they did, I said, “I really am feeling sick,” and the antibiotics in me, you know, it’s not working. So, I have kicked up the odd rumpus, every so often. Maybe just to keep them on their toes [laughs].

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Karen’s vasculitis team feels like a “friendship,” but she doesn’t need so many appointments now.

Yes, so what they do, at [the other large teaching hospital in major city] is in your department you have an overall consultant, and for me that’s the person that saw me in hospital, and he continues to see me or now maybe a telephone conversation every six months. We’re just looking at changing that to every year.

So, I would see him going forward once a year, or have a conversation with him once a year, and then in the six months in between I’d have a consultation with one of the specialist nurses. So, they have about three specialist nurses, and one of them’s called nurse [surname], and again, she was the first nurse I saw when I came out of hospital, and I continue to mostly speak with her.

And it’s, because [laughs] both the consultant and the nurse, we spoke at length [laughs] when I saw them about me losing weight, and they both started to do what I was doing about Fitbit, measuring your calories, de-de, and they both lost weight, and you could visibly keep going and seeing them and they’d, “Oh, yeah, yeah” and we would chat about the fact, that we’d all been losing weight the same way. And so, you know, the friendship I had with them, the fact that if I’ve, they know that if I’ve asked for an appointment there’s something wrong or I need to know something, they know I’m not, I haven’t just got a cold, or…

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People had sometimes experienced different teams through changing to a service in another area. This was usually so they could be seen by a specialist vasculitis service but could also be for convenience.

Katy has urticarial vasculitis. She experienced two dermatology services as “completely different.”

So, you said that you did switch from one area to another. What had led up to that happening?

I, because I was getting light treatment in a different area, like, that was closest – where I live is closer to another area. So, where the light treatment was, was two minutes away from me, whereas my – the hospital was 30 minutes but it’s in a different area. So I got transferred to another one. And that’s when I saw the new dermatologist. Because it was closer to my house.

And having – it’s always quite good when we can speak to people who’ve got experience of more than one service because they can often compare them and maybe spot things that other people wouldn’t spot. Would you say that there’s in anything that people do that’s been better than has been handled somewhere else?

One hundred per cent. I think it’s just so different from where I got the first few years to where I’ve got just now, is completely different. Way. Like, it’s so much faster down here. I got my diagnosis, I got treatment that obviously didn’t work but it could have, and now I’m on to my next treatment. And that’s all in the space of two years. Not even. So yeah. I definitely think there’s a difference.

And do you have any sense of why they’re able to do that and the previous place wasn’t?

No idea. No.

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Bringing in systemic vasculitis specialists

Not everyone we spoke to was under a vasculitis specialist or service. Charlie felt he was “an add-on” to the kind of patients his healthcare professionals usually saw, “with me trying to explain the condition, explain my needs, explain kind of how it looks for me, and then them trying to adapt their procedures for that.” We also heard that it could be difficult to get a specialist referral.

Isabella would prefer to talk about her symptoms and medication with a specialist in vasculitis.

I see a rheumatologist here, locally, it’s about every four months or so. I have been to the respiratory specialist in [large mainland city] last year, and I had an appointment for last month, I think. So, I’ve got a phone appointment with them next week, but when I was seeing them last time, it’s a, it’s the respiratory clinic of a certain doctor, but it’s not necessarily that doctor I see, it’s another doctor and I don’t know if they’re, you know. It might be different ones I see.

But when I mentioned that all about the Churg-Strauss, you know, and that’s maybe why I had the chest infections, you know, maybe it’s a symptom, and he said, “Oh, there’s no connection.” He said, “There’s no connection between them.” I had, think I had said, “There’s a connection with the, you know.” So anyway, he, they usually have a word with the specialist, so I think he had gone off to check on a couple of things and they were taking blood and stuff anyway, and he came back and he did say, “Oh, yeah, there does seem to be a connection between the two,” so [laughs] I think it’s not commonly, you know, known, obviously, that, how connected they are, how very connected they are.

So, I’m, yeah. I would quite like to see a vasculitis specialist, you know, this is something that I don’t know if there’s many of them around or. I see a rheumatologist who sees a lot – most people she sees, obviously, or he/she sees, are going to be, have rheumatoid arthritis or so, and they might have, you know, specialised a bit in the vasculitis, I’m not sure, but it would be, I think, very, very useful for people like me who have a rare disease. And, you know, that you could talk to and they, you know, know all about your symptoms and your, your side-effects of medications and, you know, just to talk more, more, more information from them about the disease. Or even what’s happening in research and that kind of thing as well. That would be very useful.

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Melissa’s referral to a specialist vasculitis centre involved “a lot of political stuff that I could have really done without.”

The other issue that I had in terms of getting to the Behcet’s Centre was funding. So, living in Wales, if you get referred to outside of Wales, things basically have to be approved by the health board, and the first time I was referred to Behcet’s Centre there was a whole lot of confusion, that the referral came from my oral medicine consultant in [city in Wales] and my rheumatologist in [town in Wales], when the address on my GP records was an English address. And there was this whole bureaucratic faff that “Why should this patient, who is resident in England and under that health board, why should the health board in Wales pay for that very expensive appointment in this centre?”

And there were letters sent back and forth explaining that, “Yes, she’s resident at that address in England some of the time, but her home address is in Wales with her parents and we’ve done her care for years.” And in the end of it was just this whole faff that I had to go to my GP in England to get it done and then they had to send me to a rheumatologist whose referral had more weight, even though a very well respected rheumatologist and oral medicine consultant had already referred me. And it’s just a lot of political stuff that I could have really done without at that point.

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Although it was obvious to some people that their doctors were talking to each other, others told us they thought doctors were reluctant to ask for a specialist opinion or to talk directly to each other.

Pete finds it “comforting” that the doctors responsible for his vasculitis care “all talk to each other.”

I have an annual appointment at rheumatology, I have six monthly appointments at the ophthalmology because it impacted on my eyes, so the consultant up there just keeps an eye on it, [laughs] ‘keeps an eye on it’, and then nephrology because I’ve, you know, I flared earlier in the year I will be back there next month, so that’ll be a six monthly appointment, and that’s the main players, yeah. Oh, sorry, ear, nose and throat as well, I’ve got a pending appointment at the ear, nose and throat.

So, it sounds a lot but it’s no really, it’s not really, and what’s comforting is that they all know each other, so they all talk to each other. So, the, and they don’t, you know, so, when you go to meet one, they’ll look at the, your last blood tests that were taken by say the rheumatologist. So, they’re, they’re actually, how can I put it, they’re extremely interested in looking at the condition and what it does. You know the, the eye hospital, the lady up there, she looks at my eyes and she then looks at the blood tests to see if that impacting on my eyes. You wouldn’t think as a layman that it, that your kidneys impact on your eyes but it does. So, it’s good that they then talk to the other consultants.

And how do they keep you in the loop, how do you know what they know about your health?

Well, when I see each of them, I then get a letter that describes how the appointment went, so that’s what they tell me. But, because I know them for the same people, particularly nephrologist and the ophthalmologist, because I’ve had them for so long I like to think that I know them, not just as a doctor/patient relationship and they’re always keen to find out how I’m getting on, not just purely in medical terms.

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Brenda hadn’t known that her neurologist was in touch with a specialist for advice about her vasculitis.

And see your team – so your rheumatologist, your neurologist, your GP – do you know that they talk to each other?

No, they don’t. The neurologist and the rheumatologist would have a good relationship and they would be in constant contact, not necessarily about me, but about, you know, the disease. Now, I know the neurologist, when I went to him first, I think [the support group funder] went to [place in England] to try and get hers identified because she couldn’t get any satisfaction here initially. And I spoke to my neurologist, and I said, you know, when he was struggling with my disease, I said, “Look, could I go and get a second opinion in [place in England]?” and he said, “But I’ve been in touch with [place in England].” He said, “I talk to [place in England] a lot, I’ve brought your case to [place in England].” And he said, “They agree with me, what they think is wrong with you.” So, there is that connection. The, he had this connection with, obviously, somewhere in [place in England] that, you know, that deals with this. So, he had gone for advice too.

But isn’t that interesting that he hadn’t told you?

No. And then but my GPs don’t. It’s almost like as if the GPs are in awe of the specialists and wouldn’t dream of contacting them. My specialist said, “It’s very important that you have the one GP who knows your case.” Because we have a practice of about six GPs. So, I said, “Okay,” I asked in the practice, and I said, “Can I have one GP who would know my case?” and they said, “Okay.” And I’ve only seen that GP once in six years. Because when you ring to speak to them, they’re either off, away, not working today, you know? So that didn’t work.

Okay.

And even at that GP, when I did see her, you know, she was young and she wasn’t, she wasn’t really tuned into my problem really. They’re also afraid to make any decision without the consultant, you know, so they wouldn’t, they wouldn’t change your medication or give you any advice or, you know, do anything. They’d just say, you know, “Wait until you see your consultant again.”

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Where people had contacted specialists themselves, it could feel awkward discussing this with their local doctor. As Angharad put it, after getting advice from a vasculitis specialist, “it was quite difficult like trying to tell the doctor that they’re doing everything wrong.”