Toolkit

Key Service Components

Assess and Prioritise Change

Cost Calculator

Adapt to your Service

Resources

Vasculitis Service Improvement Toolkit

Outcomes for people with systemic vasculitis are better when services include certain key components.

This toolkit uses evidence from the VOICES study to help vasculitis services review current provision, identify priorities for change, and adapt these components to their local context.

It is designed to support practical, locally relevant service improvement, recognising that services vary in their configuration, workforce and resources.

01

Key Service Components

Explore key service components associated with better patient outcomes.
02

Assess and Prioritise Change

Review your current vasculitis service against the key service components and identify which changes are most relevant, feasible and important for your local context.
03

Cost Calculator

Use the cost calculator to estimate the costs and potential savings associated with implementing prioritised changes.
04

Adapt to your Service

Explore practical ways to implement key service components within different service models, workforce structures and resource constraints.
05

Resources

Find tools, templates and practical materials to help you implement local service improvements.

Key service components associated with better patient outcomes

The content of this toolkit is based on the VOICES study -Vasculitis Outcomes In relation to Care ExperienceS - which examined how vasculitis services are organised and delivered across the UK and Ireland, and how different service components relate to patient outcomes.

VOICES brought together evidence from a survey of vasculitis services, interviews with patients, organisational case studies and linked routine health data. The study identified key components of vasculitis care associated with better outcomes, including fewer serious infections, fewer emergency hospital admissions and, in some contexts, reduced mortality.

Across the study, effective vasculitis care was characterised by timely access to specialist expertise, integrated working across teams, continuity of care, and services that helped patients feel safe. These components provide the basis for the toolkit and are intended to help services consider how best to organise care locally.

Recognising that some service components are interdependent and often co-exist together within care delivery systems, this guidance should be considered as a holistic package to improve the whole care pathway.

Find out more about the VOICES study.

Timely access to care

  • Timely diagnosis is essential in preventing mortality and morbidity
  • “Streamlining” the whole diagnostic pathway is important, not just waiting times once the referral has been made. This includes awareness of vasculitis, knowing which tests to do, where to send them and who to contact.

Hollick et al. (2024). The Lancet Rheumatology, Volume 6, Issue 6, e361 – e373

Evidence from VOICES study

Patients looked after in services who were able to see new patients with suspected vasculitis within 7 days had 30% fewer serious infections, 22% fewer emergency admissions to hospital and a 41% reduction in mortality.

What does this look like for patients?

“I had such an incredibly intuitive [general practitioner] who did the bloods that day, and…an amazing team at the [hospital], to quickly read those results and to fast-track that treatment for me. Because I do know that they saved my kidneys.”

  • Timely access to intravenous immunosuppressant therapy is essential to effectively manage ANCA-associated vasculitis.
  • Organisations should ensure access to urgent IV treatment for AAV within 7 days and provision of appropriately trained staff to do so.
  • Where treatment is delivered via other units, greater awareness of AAV would help provision of information and support for patients.
graphic graphic

Warren James, Avril Nicoll, Louise Locock, Lorraine Harper, Mark Little, Neil Basu, Rosemary J Hollick, P184 Geographical variations in delivery of intravenous treatments for ANCA-associated vasculitis, Rheumatology, Volume 63, Issue Supplement_1, April 2024, keae163.223, https://doi.org/10.1093/rheumatology/keae163.223

Evidence from VOICES study

Services faced significant challenges in prescribing and delivering high-cost drugs to manage systemic vasculitis: balancing accountability versus bureaucracy, and tensions between different specialties looking after vasculitis patients when implementing access to high-cost drugs via multi-disciplinary networks. There was significant variation in how services delivered intravenous treatments: 10% used inpatient beds; 35% accessed another specialty unit or shared a daycase facility; 65% used their own specialty daycase unit. Average wait time for urgent IV treatment was 2.67 days (range 1-10 days). 18% of services had waiting times >7 days, and of those 67% accessed intravenous treatments via another daycase facility.

What does this look like for patients?

“they couldn’t get me booked in right away because there just wasn’t space in the ward. You have to get your slot. So I had to have three methylprednisolone infusions, and this is where they just put a massive dose of steroids straight in your bloodstream. … that little episode cost me two vertebrae in my spine.”

Integrated care

  • With cohorted clinics patients with systemic vasculitis are grouped together and seen in a dedicated clinic.
  • Cohorted clinics enable clinicians to: ‘get into vasculitis mode’; protocolise management and proactively plan care; support continuity of care and build therapeutic relationships; audit outcomes; recruit to clinical trials; and develop local vasculitis networks.
  • Provision of cohorted clinics is a proxy for visible and accessible vasculitis expertise.
  • Timely access to intravenous immunosuppressant therapy is essential to effectively manage ANCA-associated vasculitis.

Hollick et al. (2024). The Lancet Rheumatology, Volume 6, Issue 6, e361 – e373

Evidence from VOICES study

Patients looked after in services with cohorted clinics had 25% fewer serious infections and 19% fewer emergency admissions to hospital.

What does this look like for patients?

“what I do like about the way they go about their business … every time I go in, they take a urine sample, a blood sample … and … they reach out to the [ear, nose, and throat] department, or to maybe the chest department, or speech [and language therapy]…”

  • Vasculitis specialist nurses play a key role in coordinating care, supporting medication management and patient education, and providing a more holistic approach to care.
  • They also help build trusting therapeutic relationships, enabling patients to raise concerns more openly, while increasing service capacity for timely review.

Hollick et al. (2024). The Lancet Rheumatology, Volume 6, Issue 6, e361 – e373

Evidence from VOICES study

Patients looked after in services with nurse-led clinics had 35% fewer serious infections and 25% fewer emergency admissions to hospital.

What does this look like for patients?

“Because I’m their ‘go to’, the nurse that they see the most … they’ll talk to me about everything, so sometimes it’s relationship and sex advice … A lot of it is managing the side effects of their medication and flares.”

Access to expertise

Nurse-led advice lines provide a single point of contact into the vasculitis service for patients and should be supported by clear escalation pathways.

Hollick et al. (2024). The Lancet Rheumatology, Volume 6, Issue 6, e361 – e373

Evidence from VOICES study

Patients looked after in services with access to a nurse advice line had 24% fewer serious infections and 15% fewer emergency admissions to hospital.

What does this look like for patients?

“If I'm not sure on anything I ring her and I've got a direct number… so if I'm thinking, 'Hang on, that doesn't look right…’ Or there was a doctor looked at my bloods and he says, 'Oh, I think you should stop this [medication].’…and then the vasculitis nurse rang me and said, 'No, that figure's good.’”

  • Regular specialist vasculitis MDT meetings support multi-specialty discussion and coordinated decision-making - “getting the right people together in a room talking”.
  • Professional tensions (between specialties, professionals, and localities) that impact on care are more likely to be acknowledged and addressed.

Hollick et al. (2024). The Lancet Rheumatology, Volume 6, Issue 6, e361 – e373

Evidence from VOICES study

Patients looked after in services with vasculitis specialist MDT meetings had 28% fewer serious infections and 14% fewer emergency admissions to hospital.

What does this look like for patients?

“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”

Assess and Prioritise Change

Use this section to review how vasculitis care is currently organised in your local setting and to identify which key components to prioritise for improvement.

Mapping your current service against the key service components can help you see what is already established, what is developing, and where there may be gaps. This can support practical decision-making, recognising that it may not be feasible to implement or strengthen all five components at once.

You can also use the catalyst film alongside the mapping exercise to include patients, families and NHS staff in identifying and planning local service improvements.

Mapping Local Vasculitis Services

To support this process, we have provided an online mapping table. This is designed to help you reflect on your current service, identify what is already in place, and consider what you may be able to build on.

The table allows you to:

  • Generate a simple heat map of your service, using the response options: established, developing, not in place and don’t know.
  • Map vasculitis care across other relevant specialties in your health board or trust, including where key components are present, absent or delivered through joint arrangements.

An example of Vasculitis care delivery across an organisation

Key Component Rheumatology Nephrology Respiratory Ear, Nose & Throat Neurology Dermatology Other
Wait times new <7 days
Serious infections ⬇30%
Emergency hospital
admissions ⬇22%
Mortality ⬇41%
Access IV therapy <7 days
Care via cohorted clinics
Serious infections ⬇25%
Emergency hospital
admissions ⬇19%
Nurse-led clinics
Serious infections ⬇35%
Emergency hospital
admissions ⬇25%
Nurse advice line
Serious infections ⬇24%
Emergency hospital
admissions ⬇15%
Access to MDT meeting
Serious infections ↓28%
Emergency hospital admissions ↓14%
status:
Established
Developing
Not in place
Unknown

Consider your own service

Which of the key components are established, developing, or not in place in your service? It’s okay if you don’t know – now is a great time to look into it and find out. This is an opportunity to discuss with other specialties and learn more about vasculitis care in your setting.

The heat map you generate will be available to reference on the Cost Calculator page in the next step of this toolkit.

Edit this table:
Key Component
Wait times new <7 days
Serious infections ⬇30%
Emergency hospital
admissions ⬇22%
Mortality ⬇41%
Access IV therapy <7 days
Care via cohorted clinics
Serious infections ⬇25%
Emergency hospital
admissions ⬇19%
Nurse-led clinics
Serious infections ⬇35%
Emergency hospital
admissions ⬇25%
Nurse advice line
Serious infections ⬇24%
Emergency hospital
admissions ⬇15%
Access to vasculitis MDT meeting
Serious infections ↓28%
Emergency hospital admissions ↓14%
CSV (.csv)
PDF (.pdf)

Including patients, families and staff in Vasculitis service improvement

Developed as part of the VOICES study, this catalyst film is based on interviews with 32 people across the UK about their experiences of living with systemic vasculitis and using healthcare services.

Participants also shared their ideas for service improvement. The examples included in the film highlight the importance of good communication, coordinated care and feeling safe within services.

Please use the film as a catalyst for local conversations between patients, families and NHS staff about how vasculitis services currently work, what matters most to people using them, and how experiences of care can be improved.

Health Experiences Insight
Learn more

Cost Calculator

Use the cost calculator to estimate the potential financial impact of implementing selected key service components in your local vasculitis service.

This calculator allows you to enter the approximate number of patients with ANCA-associated vasculitis in your service. It then uses data from the VOICES study to estimate the potential cost savings associated with introducing specific service components.

Recognising that some service components are interdependent and often co-exist within care delivery systems, they should be considered as a holistic package to improve the whole care pathway.

Consider the key components and the heat map you generated in the previous step of this toolkit when you use the cost calculator (if you have not completed this step you can do so now below). You can model the cost savings of introducing several service components and download a PDF summary to support local discussions, service planning and business cases for change.

Edit this table:
Key Component
Wait times new <7 days
Serious infections ⬇30%
Emergency hospital
admissions ⬇22%
Mortality ⬇41%
Access IV therapy <7 days
Care via cohorted clinics
Serious infections ⬇25%
Emergency hospital
admissions ⬇19%
Nurse-led clinics
Serious infections ⬇35%
Emergency hospital
admissions ⬇25%
Nurse advice line
Serious infections ⬇24%
Emergency hospital
admissions ⬇15%
Access to vasculitis MDT meeting
Serious infections ↓28%
Emergency hospital admissions ↓14%
CSV (.csv)
PDF (.pdf)

There are two calculators available – the univariable calculator and the multivariable calculator. These look at the costs associated with the presence or absence of key service components, adjusted for age at index date, sex, local area measure of deprivation (quintiles), the Scottish Government urban rural classification, and all two-way interactions.

How this is calculated

The calculator works by assuming the ‘average patient’. Age was median centred and scaled such that one unit of change corresponded to a decade, and sex was deviation coded so the intercept term represented the average for males and females. Please see the published paper for further information on methodology.

The healthcare costs were obtained from Public Health Scotland, Scottish Health Service Costs (Hospital Cost Breakdown, R040: Specialty costs and activity), available in the 2023 to 2024 files listing. We used the Scottish average cost of an inpatient hospital admission (average stay 4.6 days): £4,851 (gross). Costs may differ depending on case mix and region.

Calculator:

Population & cost

Expected events per year

Baseline (no component)—
With selected component—
Change in event rate—

Cost impact

Baseline cost—
Cost with component—
Difference (− = saving)—

Univariable

This calculator uses the univariate model, comparing services with the selected component present (exp(absent + present)) against those without it (exp(absent)). Each expected event of interest rate is multiplied by the number of patients seen within your service on an annual basis, to estimate yearly events, and by the unit cost of a non-elective hospital admission to get the annual cost.

Each service component is estimated in isolation, so values for different components should not be combined. The difference between the with-component and baseline values is the projected annual change in cost: negative numbers (in green) are savings.

Adapt to your Service

This section focuses on how the key service components can be adapted to different vasculitis services, workforce models and care pathways.

The case studies and examples illustrate how prioritised components may be implemented in practice, recognising that services vary in how they are organised, commissioned and resourced. They are intended to support local, regional and national planning, depending on where change is needed.

The key service components are closely linked and should be considered as a set of interdependent components that can support improvement across the whole vasculitis care pathway.

Case studies

To preserve anonymity, the case studies are not named. Instead, the table describes key features of each service model, including country, site arrangements, leadership, specialist nursing provision and service focus.

The case studies illustrate different ways in which vasculitis services deliver key components in practice. They are intended to help you consider what is similar to your own service, what might be adaptable, and which elements could support local service development.

Select a region

Scotland

Map © 2024 Pareto Softare, LLC DBASimplemaps.com

Adapting key service components

Service Setting Adaptations:

Consider...

  • Management (including senior management) support for service improvement, and what might motivate them to provide this
  • What the current local pathway for appropriate urgent access looks like, where there are gaps, and where there are opportunities to streamline processes (with and without additional resources)

Target Audience Adaptations:

Consider...

  • The main audience initially may be Trust/medical director level (rather than heads of specialties) to get AAV recognised as a priority for expert review at speed on par with acute conditions such as stroke
  • Visibility and penetration of the vasculitis service across secondary care
  • Visibility of the vasculitis service to primary care

Mode of Delivery Adaptations:

Consider...

  • Who can order relevant tests and review the results
  • How index of clinical suspicion is demonstrated and linked to turnaround speed of results
  • How the result in the context of the clinical picture allows the patient to get into the urgent pathway quickly
  • What safety netting is provided for patients where there is a high index of clinical suspicion, but results are inconclusive, or their significance is unclear

Professional Culture Adaptations:

Consider...

  • Who the key local players in vasculitis are currently and in future, and how your service model will support these specialties to sustain their involvement
  • Identifying people across multiple specialties who are willing to be key contacts for vasculitis, and whether/how this could be formalised

How do some healthcare providers reduce the time to diagnosis?

“The ANCA test was such a gamechanger for improving vasculitis care but the test on its own isn’t enough – you’ve got to know when to use it, have a good relationship with the labs, and be in a position to act urgently when there’s a positive result. I’ve managed to get it so that every positive ANCA locally is copied to me. I can then get in touch proactively with the doctor who made the request and offer my input”

Service Setting Adaptations:

Consider...

  • Two separate processes need planned for, so that both can be delivered urgently
    • The decision to treat with IV therapy (which may need MDT meeting discussion)
    • The process for accessing IV therapy
  • Day case or ambulatory care units incorporating IV therapy may be
    • Run by an individual specialty (renal or rheumatology)
    • Serve a number of hospital specialties (e.g. general medicine)
    • Run by oncology and haematology (which may be the only specialties offering IV cyclophosphamide)
  • Aseptic pharmacy and trained nursing staff are key to a streamlined IV therapy service, and both are susceptible to workforce challenges

Target Audience Adaptations:

Consider...

  • The main audience may be Trust/medical director level (rather than heads of specialties) to get AAV recognised as a priority on par with cancer for urgent IV therapy

Mode of Delivery Adaptations:

Consider...

  • Extent to which specialty knowledge and relationship with patient can be maintained while achieving urgent access to IV therapy
  • Extent to which IV therapy service will be nurse-led and how dependent it will be on doctor input (e.g. to consent or at initiation)

Professional Culture Adaptations:

Consider...

  • Understand that getting urgent access to IV therapy is often experienced by staff as a highly competitive and stressful process, and that a sustainable adaptation is likely to depend on finding a more collaborative approach

How do some healthcare providers facilitate access to IV therapy?

“We discussed with the haematology/oncology day unit how to facilitate them giving IV cyclophosphamide, and what they need or want from us. They have agreed that they will give it, but only on a set morning a week. What they wanted was just to administer it. So, I said, ‘Well, what if we come along,’ — and this may change with time and perhaps with better relationships — ‘If we come along, answer any questions, make sure they’re fine to get it, check their bloods and prescribe,’ and they said yes. And they’re happy enough with that because they give it all the time to their patients. I have changed my clinic so that I can be available if needs be on a Monday to go and say hello to the patient.”

Service Setting Adaptations:

Consider...

  • Whether an informal, gradual approach to cohorting is possible or desirable, or whether a formal business case is needed or desirable
  • Whether it is most appropriate to cohort as a single specialty (renal or rheumatology), or jointly (see also Professional Culture Adaptations)
  • How a cohorted clinic can support patients who do not attend it in person

Target Audience Adaptations:

Consider...

  • Consider the scope of the cohorted clinic, e.g. patients with
    • Systematic vasculitis and complex inflammatory disease
    • All systemic vasculitis
    • Small vessel vasculitis
    • CTD including systematic vasculitis

Mode of Delivery Adaptations:

Consider...

  • What alternative modes of delivery might make a cohorted clinic possible and sustainable (e.g. where, how, and by whom people are seen)
  • Consider if what requires to be done face-to-face (e.g. routine observations/tests) could be done elsewhere to facilitate remote access (if applicable)
  • Note that this is less about use of telephone and video appointments than issues such as whether patient contact is direct or supported by a local clinician, and whether review is scheduled by the service and/or triggered by the patient

Professional Culture Adaptations:

Consider...

  • If this should be a single specialty or a joint clinic
  • What multidisciplinary input is needed to support the cohorted clinic (e.g. respiratory, ENT), and how this might work
  • How patients will understand they are part of a cohorted clinic for people with systemic vasculitis

How can the need for cohorted clinics look for healthcare providers?

”We’re a well-known centre of excellence for vasculitis, which is great, but it’s not right that patients travel for hours to see us, or that they get so dependent on emailing us with their queries. I worry that they miss out of developing he local relationships that will help keep them safe when they need things we can’t provide, like unscheduled care. To be frank, it’s also getting unsustainable for us because we’re not properly funded for it. A model that’s driven by individual patients advocating for themselves is not ideal. We need to find better ways for services to draw on the expertise of specialist centres while delivering more care locally”

Service Setting Adaptations:

Consider...

  • What would make this post viable locally (e.g. single service (renal / rheumatology), joint, across Trusts/Boards)
  • What knowledge the nurse in this role needs
  • Options for financing the role (e.g. part research or combined with another specialist role; third sector or project pump priming; subspecialisation / role expansion of existing rheumatology or renal specialist nurses)

Target Audience Adaptations:

Consider...

  • Relative advantages and disadvantages of ‘insider’ recruitment
  • Where the nurses could most add value for patients (e.g. care coordination, signposting, psychological and emotional support, medication counselling, public health)
  • Type of patients included/excluded for manageable caseload

Mode of Delivery Adaptations:

Consider...

  • What will build in sustainability of the nursing arrangement
  • The best physical location
  • Arrangements for line management and clinical supervision structures (which may not be the same)

Professional Culture Adaptations:

Consider...

  • Professional isolation, conflicting identities, and the need for peer support, mentorship and professional development opportunities
  • Time needed to grow and embed the role

From a vasculitis specialist nurse...

”There’s so much that specialist nurses could be doing to improve vasculitis patients’ experiences of care and outcomes, but there’s no blueprint for the role. How it develops in a service seems to depend as much on the vision of consultants and nurse managers as the nurse themselves, and it takes time to integrate your role and figure out what it means. I don’t have many hours but I do have a lot of autonomy. I’m developing my skills in holistic approaches, like talking therapies for mental wellbeing, and lifestyle counselling so patients can have better underlying health to cope with vasculitis and its treatments.”

All services looking after patients should have access to regular vasculitis specialist multi-disciplinary team (MDT) meetings. There should be protected time and administrative support for leadership and attendance at MDT meetings and recording of outcomes

Service Setting Adaptations:

Consider...

  • What would make a specialist MDT meeting viable locally (e.g. single service (renal-led/rheumatology-led), joint, across Trusts/Boards)
  • Who is best placed to lead the specialist MDT meeting
  • Whether there are formal functions required of MDT meetings in your area (e.g. access to high tariff drugs)
  • Administrative support

Target Audience Adaptations:

Consider...

  • Scope of specialist MDT meeting in type(s) of systemic vasculitis +/- other inflammatory diseases included
  • The best composition of the specialist MDT for what you are trying to achieve (e.g. consultants, nurses, other healthcare professionals)
  • What the primary functions of the MDT meeting need to be locally
  • Relationship between local and regional MDT meetings

Mode of Delivery Adaptations:

Consider...

  • How to ensure governance, terms of reference, and patient safety
  • Whether senior and some specialty clinicians’ input to patient management would be as effective and more efficient via an MDT meeting rather than direct contact
  • How technology could make MDT meetings possible

Professional Culture Adaptations:

Consider...

  • Fit of specialist MDT meeting with history of service (e.g. is vasculitis mainly dealt with by renal or rheumatology, or is it more equitable)
  • Existing relationships (e.g. is there a willingness to collaborate in new ways across specialties and regions)

What does this look like for healthcare providers?

”What we’ve found is that meeting regularly as Team Vasculitis doctors, nurses and pharmacists allows us to troubleshoot practical issues around patient safety and focus on service improvement in response to patient feedback.”

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Resources

This section brings together tools, templates and practical materials to support local vasculitis service improvement. Current resources are grouped by topic and include materials on patient experience, primary care recognition and referral, and specialist vasculitis nurse roles. Further resources will be added as the toolkit develops.

About the VOICES study

VOICES (Vasculitis Outcomes In relation to Care ExperienceS) examined how the organisation and delivery of vasculitis services influence patients’ experiences, health outcomes and use of healthcare.

People with systemic vasculitis often receive care from several specialties and services. Before VOICES, there was limited evidence about which features of service organisation were most important for delivering effective, coordinated care.

The mixed-methods study brought together:

  • a survey of vasculitis services across the UK and Ireland;
  • interviews with 32 people living with systemic vasculitis;
  • six organisational case studies involving interviews with 67 healthcare professionals; and
  • linked national healthcare data from people with ANCA-associated vasculitis in Scotland.
Three-piece jigsaw showing timely access to services, integrated care and access to expertise.

The study found that good vasculitis care was characterised by timely access to services and treatment, integrated care, continuity and access to specialist expertise. Specific service components, including rapid review of new patients, nurse-led advice lines and clinics, cohorted vasculitis clinics (where patients with vasculitis are seen in the same clinic), and access to specialist vasculitis multidisciplinary team meetings, were associated with fewer serious infections and emergency hospital admissions. Timely access to specialist review for new patients with suspected vasculitis was also associated with lower mortality.

Patient and professional accounts helped explain how these components worked in practice. They supported communication and coordination across specialties, helped overcome professional boundaries, strengthened continuity of care and contributed to patients feeling safe.

The findings have informed the service specifications within the 2025 British Society for Rheumatology recommendations for the management of ANCA-associated vasculitis.

This toolkit translates the VOICES evidence into practical resources that services can use to review current provision, prioritise and make a business case for change, and adapt the key components to their local context.

Funding and Acknowledgements

This toolkit is based on findings from the VOICES study - Vasculitis Outcomes In relation to Care ExperienceS - a programme of research funded by Arthritis UK to understand how the organisation and delivery of vasculitis care relate to patient outcomes and experiences. The VOICES study was funded under grant reference 22088 (Chief Investigator, Dr Rosemary Hollick).

Development of the toolkit content was supported by the University of Aberdeen. Development of the toolkit website and cost calculator was funded by CSL Vifor. CSL Vifor had no input into the content of the toolkit.

We are very grateful to all patient contributors with lived experience of systemic vasculitis who have been involved in the VOICES study.

We also wish to acknowledge our collaborators, the UK and Ireland Vasculitis Society and the Scottish Systemic Vasculitis Managed Clinical Network, for their support in the conceptualisation and delivery of the study. This included development and distribution of the vasculitis provider survey, recruitment of case study sites, and hosting workshops to discuss study findings and inform recommendations.

We are also grateful to the European Reference Network for rare immune disorders for supporting the development and distribution of the survey to its members.

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