This project aims to provide self-management and psychological support for people with
rare autoimmune rheumatic diseases. The 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.
The rare autoimmune rheumatic diseases include systemic lupus erythematosus, vasculitis,
scleroderma, myositis and Sjogren's syndrome. They can affect people of any age and can
be fatal. They often have a negative impact on peoples' quality of life (social, work and
family life).
Information was gathered from six online meetings with groups of people who have these
conditions. People wanted to know the truth about their disease and treatment, alongside
help adapting to living with a rare and serious disease. A survey of NHS rheumatology
departments shows that the majority (80%) do not provide support to help patients deal
with the impact of living with one of these diseases.
Firstly, six groups of patients in total (2 each in Bristol, Weston-Super-Mare and Leeds)
will be organised with the help of community groups. Focus groups will help gather a
range of views regarding support needs.
Secondly, a UK-wide patient survey of support needs will be conducted, translated into
the ten most spoken languages in the UK. Paper versions will be available in NHS
rheumatology departments, and an online version will be shared through patient charities.
Lastly, 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 asking the question: How can support be achieved for patients with rare
rheumatic diseases within the current NHS? The research team will then make changes to
the support programme based on the feedback received.
The researcher leading the patient and public involvement will work closely with
community groups. The three patient partners, who have lived experience (one vasculitis
and two lupus patients) will work within the research team throughout the life of the
project and will take part in all decision making. A group will be formed from patient
participants and patient research partners to help design the next steps of the support
programme together.
Patient research partners will help design how the outcome of this research will be
shared with healthcare professionals and patients. This will include publications, lay
summaries shared by patient organisations and presentations at conferences and community
events.