Shared Decision Making
We know that attending hospital appointments can be stressful and some patients with vasculitis may have waited a long time before getting a diagnosis. For some the diagnosis comes suddenly and they might be very unwell. For others, there may have been many medical appointments and tests.
Shared decision making is where you and your healthcare professional work together to understand what tests, treatments and support are best for you. We have created a short video and a guide to making the most of your time with the healthcare professionals you meet.
You can view or download by clicking this link Scottish Systemic Vasculitis Network guide to making the most of your consultation.
More information on shared decision making is available on realisticmedicine.scot
Experiences of systemic vasculitis and UK healthcare
In this web resource on healthtalk.org [Systemic Vasculitis – Overview (healthtalk.org)] you can find out about the experience of having systemic vasculitis by seeing and hearing people share their personal stories.
It features 32 people from across the UK talking about their experiences of systemic vasculitis and healthcare. People were aged between 22 and 81 at the time of interview. Some had symptoms many years before they were diagnosed while, for others, symptoms had come on more suddenly. We spoke to people with different types of systemic vasculitis – including ANCA associated vasculitis (AAV), giant cell arteritis (GCA), Takayasu arteritis and Behçet’s syndrome. Due to the COVID-19 pandemic, all interviews were done online.
This study is part of a programme of research funded by Versus Arthritis to understand Vasculitis Outcomes In relation to Care ExperienceS (VOICES).
More information on shared decision making is available on realisticmedicine.scot
Supporting conversations about healthcare improvement
This short film is from our interviews with people across the UK who live with systemic vasculitis. As a multi-system condition, outcomes for people with systemic vasculitis depend on timely, coordinated intervention from a range of healthcare professionals and departments.
We hope that you will use the film in imaginative ways as a ‘catalyst’ to get local patients, families and NHS staff talking together about your services and how you can jointly improve people’s experiences.