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.”

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

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.”

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.”

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

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.”

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.

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

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.”

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.

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

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.”

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

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.”