Submitted by James Cantwell on Fri, 14/08/2026 - 14:27
The Long-Term Conditions Group held an in-person research event in Cambridge on 29th June 2026 with 50 attendees including patients, charity partners, clinicians and researchers.
It was a great opportunity to firstly share our latest research, and to also plan priorities for future projects based upon the experiences and insights from our patient community.
The day was split into three sections:
1. Sharing latest research findings
Including our latest published papers which you can read here:
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Two-year follow-up of neuropsychiatric symptoms in patients with systemic autoimmune rheumatic diseases: longitudinal insights on depression, anxiety, memory and adaptation in the INSPIRE cohort – full text link.
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Fibromyalgia in systemic autoimmune rheumatic diseases: a mixed-methods study of patient and clinician perspectives – full text link.
2. Discussion groups
We split into small groups to plan future research projects. Topics included:
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How best to discuss mental health in clinical appointments.
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How to improve patient and clinician trust
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Describing the impact of fatigue on daily life. People used words and phrases like "debilitating", "hitting a brick wall", "everything is heavy", and "every movement is exhausting" encapsulating the burden patients carry.
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How to help people adapt to living with chronic conditions – what support should be made available?
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Hormones and menopause.
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Choosing the most appropriate survey measures to use for future studies, especially to best reflect patient experiences and outcome priorities.
3. In patients’ own words
To better understand common experiences, themes and difficulties, we asked attendees to describe life with their disease in one word:
We asked attendees: what symptom would you most want improved?
We asked: what can doctors do to help you open up to them? Here is what people said!
We asked attended to rate satisfaction with life and medical care, and how supported they feel for mental health and adapting to life with their disease. See the results below! We can see there is a real need for better support.
Feedback from attendees
Some feedback we received from attendees about the event:
“The surveys and research that you have done over the last few years has given me so much more confidence to advocate for myself and to deal with everything these conditions bring. It also makes me feel less alone with it all.”
“I really felt heard, and it was lovely to be surrounded by people with similar experiences.”
Thank you!
Lastly, we would like to say a big thank you to everyone for attending our research day! We truly could not do our research without patient partners and charities generously giving up their time.