For Tom Esterine, "remission" has never quite meant what doctors say it should.

The 64-year-old from Brixton has lived with rheumatoid arthritis for 14 years. Even when tests suggest his inflammation has settled, the pain finds a way to stay. "Remission shouldn't still hurt," he says — and a new £3m research programme is taking him at his word.

Tom is a patient partner on TOPPIA — Targeting of Peripheral Pain in Inflammatory Arthritis — a UK-wide consortium funded by Arthritis UK that begins in autumn 2026. The five-year study, announced by the University of Glasgow, puts the lived experience of arthritis sufferers at the heart of the research agenda. Patients are not just being asked how the condition feels; they are helping to shape what scientists look for and how the results are judged.

A pain that often gets missed

Inflammatory arthritis affects more than 1 in 100 people in the UK. It occurs when the immune system attacks the joints by mistake, causing swelling, stiffness and pain that can ebb and flow over years.

Most treatments today aim at the inflammation itself. But for many people, calming the swelling does not calm the pain. Arthritis UK's own lived-experience survey found that 6 in 10 people with arthritis are in pain most or all of the time.

That mismatch matters. When scans and blood tests show inflammation easing, patients are sometimes told they are in remission, even as daily life remains a struggle. Some stop mentioning their pain, fearing they will not be believed.

TOPPIA researchers think they know part of the reason. Early work suggests that for around 1 in 4 patients, the pain is not driven by the classic immune attack at all — it comes instead from other cells that linger in the joint long after the inflammation has settled. The team calls this "nonclassical inflammation".

Glasgow's role in the consortium

The consortium is led by King's College London but stretches across ten institutions, including Cardiff, Oxford, Birmingham, University College London, NHS partners in the capital, and The Rockefeller University in New York. The University of Glasgow is among the core scientific partners.

Professor Carl Goodyear, Professor of Translational Immunology and Assistant Vice-Principal at the University of Glasgow, said the city was "delighted" to be part of the work. "Managing the pain associated with inflammatory arthritis largely remains an unmet need for patients," he said. "The TOPPIA consortium is the first research collaboration of its kind to prioritise finding new and effective therapies focused on pain reduction in inflammatory arthritis, as well as championing the voices of patients and prioritising their needs."

A four-stage plan

The £3m grant will fund a four-stage programme: testing new treatment targets for pain, building a biobank of joint samples to link tissue to real-world experience, improving tailored diagnosis, and pushing for pain to be treated as a core priority in clinical care and research.

Lead researchers Professor Leonie Taams and Dr Franziska Denk, both of King's College London, said the project would "deepen our understanding of the drivers of pain, identify new therapeutic targets, improve treatment strategies, and champion the inclusion of pain as a core priority".

Professor Lucy Donaldson, Arthritis UK's Director of Research, said the charity was "delighted" to back the study. "By placing patient voices at the heart of the study, this research embodies all values that Arthritis UK stands for," she said.

For Tom Esterine, the breakthrough is in the framing. "This research is exciting because it treats pain as real," he said, "digging deeper into the joints to understand why we still experience it, and will finally find treatments to ease it."

No one is promising a cure. But for the millions for whom a "good" test result still ends in a bad night's sleep, being heard is a start.