Who made this systemic vasculitis resource?

Avril Nicoll

Avril is a qualitative researcher at the Health Services Research Unit, University of Aberdeen. She also has a background in speech and language therapy, experience as a user representative in maternity services, and a personal interest in rare autoimmune disease.

Louise Locock

Louise is a qualitative researcher and professor in health services research at the University of Aberdeen. Before joining Aberdeen in 2017, she was Director of Applied Research at the Health Experiences Research Group, University of Oxford, and has led numerous studies disseminated on this site.

Rosemary Hollick

Rosemary is a Clinical Senior Lecturer and Honorary Consultant Rheumatologist at the University of Aberdeen. She leads the VOICES (Vasculitis Outcomes In relation to Care ExperienceS) study, funded by Versus Arthritis, and supported by the Scottish Systemic Vasculitis Managed Clinical Network (SSVN) and UK and Ireland Vasculitis Society (UKIVAS). This aims to gather information to improve the design of services and equitable access to effective, coordinated care and support for people with systemic vasculitis. This website was created from interviews conducted as part of the VOICES study.

Zoë Skea

Zoë is a qualitative researcher at the Health Services Research Unit, University of Aberdeen. Her research interests are in patients’ experience of their care and treatment, and also clinician-patient relations.

Acknowledgements

We would like to thank all our participants for giving their time and sharing their experience so that this website can be available to anyone affected by systemic vasculitis. We are also grateful to the clinicians and patient support groups who helped with recruitment: PMR GCA Scotland, The Lauren Currie Twilight Foundation, Vasculitis Ireland Awareness, and Vasculitis UK. In addition, we would like to thank Adrienne Currie, Lynn Laidlaw and John Mills for helping Avril understand the systemic vasculitis landscape, the many people who provided Patient and Public Involvement feedback at different stages to shape this website, and Laura Moir and Stuart Anderson for administrative support.

Advisory Panel

Neil Basu
Professor of Musculoskeletal Medicine & Vasculitis, University of Glasgow, Co-chair UKIVAS and VOICES co-applicant

Corri Black
Professor and Co-director Aberdeen Centre for Health Data Science, University of Aberdeen and VOICES co-applicant

Steve Chinn
VOICES Patient Partner

Adrienne Currie
The Lauren Currie Twilight Foundation

Nick Fluck
Honorary Professor, University of Aberdeen, Medical Director/Responsible Officer/Caldicott Guardian, NHS Grampian and Lead Clinician, Scottish Systemic Vasculitis Network

Rosemary Hollick
Senior Clinical Lecturer and Honorary Consultant Rheumatologist, University of Aberdeen, and VOICES Chief Investigator

Maira Karabayas
CSO Clinical Research Fellow and Rheumatology Registrar, University of Aberdeen

Lynn Laidlaw
VOICES Patient Partner

Peter Lanyon
Consultant Rheumatologist, Nottingham University Hospitals NHS Trust

Mark Little
Professor of Nephrology and Consultant Nephrologist, Trinity College Dublin / Tallaght University and Beaumont Hospitals, Co-chair UKIVAS and VOICES co-applicant

Louise Locock
Professor in Health Services Research, University of Aberdeen and VOICES co-applicant

Mo McBain
VOICES Patient Partner

John Mills
Vasculitis UK

Laura Moir
VOICES Study Coordinator, University of Aberdeen

Avril Nicoll
VOICES Research Fellow, University of Aberdeen

Fiona Pearce
Clinical Associate Professor, University of Nottingham

Shifa Sarica
Healthcare Scientist Principal, Public Health Scotland

Sue Ziebland
Professor, Health Experiences Research Group, University of Oxford and VOICES co-applicant

Funding

This study is part of a programme of research funded by Versus Arthritis to understand Vasculitis Outcomes In relation to Care ExperienceS (VOICES). (Grant Reference Number: 22088, Chief Investigator Rosemary Hollick).

Systemic vasculitis resources

The following national organisations provide support and information for people with specific or all types of vasculitis across the UK: Behçet’s UK behcetsuk.org PMR-GCA Scotland...