Rare AutoImmune SElf-management programme development (RAISE)

Research summary

The overarching aim of the RAISE project is to provide self-management and psychological support for people with rare autoimmune rheumatic diseases; these include systemic lupus erythematosus, vasculitis, scleroderma, myositis and Sjogren’s syndrome. These diseases can affect people of any age and have a negative impact on peoples’ quality of life (social, work and family life). More than 80% of NHS Rheumatology departments do not provide any support to help patients deal with the impact of living with one of these diseases. Within this project, our first aim is to ensure that the support provided is relevant for all people, through reaching people who may not have been involved in research before. The second aim is to get agreement for the content and structure of this support from people with these diseases and healthcare teams across the UK. In Work package 1, we will arrange six patient focus groups: 2 each in Bristol, Weston-Super-Mare and Leeds. These will be organised with the help of community groups. These focus groups will help gather a range of views regarding support needs. In Work package 2, we will perform a UK-wide patient survey of support needs, translated into common languages in the UK. Paper versions will be available in NHS rheumatology departments, and an online version through patient charities and social media. In Work package 3, survey results and group responses will be used to build a picture of the type of support needed and how to achieve this in practice. The research team will present the results to the patient partners involved, charities, NHS management and healthcare professionals in stakeholder meetings asking the question: How can we achieve this support for patients with rare rheumatic diseases within the current NHS? The team will then make changes to the draft support programme based on the feedback received.

Principal Investigator

Dr Shirish Dubey

Contact us

Email: gail.lang@ndorms.ox.ac.uk

IRAS number

336948