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Politics Home Article | Too many with arthritis given the silent treatment on a diagnosis
Too many of the UK’s 10 million people living with arthritis face delays to diagnosis, leaving them without vital treatment and support. Early diagnosis is crucial not only for managing their condition, but also for the relief and validation of finally being seen.
To mark May’s Arthritis Awareness month, our upcoming report, The Silent Treatment: Why an Arthritis Diagnosis Matters, highlights the key barriers to a timely and personalised arthritis diagnosis. The report brings together insights from people with arthritis and healthcare professionals to highlight the delays and issues faced at each stage of the diagnosis pathway.
The importance of a diagnosis for people with arthritis cannot be underestimated – in terms of the treatment and support it offers for proactive symptom management, the role it can play as part of secondary prevention, and the validation it can provide for those who have been struggling without answers. It’s critical to get things right.
Arthritis can affect every aspect of someone’s life, from their ability to work, care for family, move independently and live free of pain. Last year, Arthritis UK’s research report, Left Waiting, Left Behind: The Reality of Living with Arthritis, surveyed almost 8,000 people, with 32 per cent stating that arthritis severely or very severely impacted their life in the past year. 60 per cent reported living in pain most or all of the time due to their arthritis.1
Alongside the impact on the individual, a delayed diagnosis can also come at a cost to the NHS. For inflammatory arthritis, early diagnosis directly reduces the risk of permanent joint damage, persistent pain and disability in the long term. Therefore, delayed diagnosis can lead to higher costs overall for the health system, as patients may then need intensive treatment with high-cost medicines for longer periods.2
Delayed diagnosis also costs the economy. If people are left waiting without the right support, they may struggle to stay in or get back into work. One study cited in the report, which looks at a type of inflammatory arthritis called axial spondyloarthritis, has estimated the economic cost of a delayed diagnosis to be £193,512 per person. Based on estimated prevalence rates of axial spondyloarthritis ranging from 0.3 to 1.2 per cent of the UK population, the total annual economic cost of delayed diagnosis was estimated at between £3.1bn and £12.5bn.3
Delays can beset the entire diagnosis pathway, beginning when people first experience symptoms. The limited societal understanding of arthritis and its symptoms means that people may downplay symptoms and delay seeking medical advice. Commonly held misperceptions, for example, that only older people can get arthritis, mean that people may dismiss symptoms.
Heard of osteoarthritis and I associated it with being like an old person’s illness. So, I just brushed it off that I didn’t have that
(Lived experience workshop participant)
Once people do enter the health system, they may face additional delays. Despite the best efforts and dedication of healthcare professionals, they are working in a stretched system that has not historically prioritised musculoskeletal (MSK) health. It means people’s symptoms may be missed; there are delays to diagnostic tests, referrals and appointments; and limited availability of health professionals and services to deliver the multidisciplinary support people need.
When people receive their diagnosis, they may not just be presenting with physical deterioration. They may often be struggling with other aspects of their wellbeing, such as their mental health. The National Early Inflammatory Autoimmune Diseases Audit found that between 2023 and 2034, 60 per cent of patients had probable depression or anxiety at the time of diagnosis.4
This underlines the need for a holistic approach that factors in what people are struggling with at the point of diagnosis, including their mental health. Crucially, for people with arthritis, diagnosis is more than just a label. It can be the gateway to the information, care and support that can be life-changing.
People need a personalised conversation that factors in their needs and sets them up for the road ahead, as they process being diagnosed with a long-term condition. To deliver these effective diagnosis conversations, health professionals need the appropriate training to support them to do so and training that supports them to diagnose and care for people with arthritis more generally. Despite the increased prevalence of MSK conditions like arthritis, this has not translated into proportionate MSK content as part of the medical curriculum. Healthcare professionals could benefit from supplementary training and courses to boost confidence and fill in any knowledge gaps.
Think it was quite clear my mental health wasn’t great, but that was never really discussed. It was well, you know, we’ll get you on this treatment and these meds should do the thing that should help
(Lived experience workshop participant)
A formal diagnosis, with a name and clearly communicated information, equips people with the language and confidence they need to speak about their condition, explain how it affects them, and articulate their needs. Additionally, simple signposting, such as to the Arthritis UK website, can unlock a range of information and support, including on work and benefits. Access to these resources could make a big difference to someone’s ability to work or access information about financial support.
I think the validation is so important, [it provides] a huge sense of relief that [I] haven’t been imagining it… would have been really good to have it some years previously when I was still working, because I’ve been in so much pain at work
(Lived experience workshop participant)
The barriers around an arthritis diagnosis also demonstrate a broader issue. At a system level, MSK conditions lack the strategic prioritisation, national strategy, dedicated local or regional leadership, and sustained infrastructure.
Urgent action is needed now to improve the rate and experience of diagnosis for people with arthritis. People with arthritis should not be left in pain, in the dark, or given the silent treatment while they wait for a diagnosis. Getting it right from the outset will deliver benefits across the health and social care system and wider economy, allowing people with arthritis to get control of their lives back.
- Arthritis UK. (2025) Left Waiting, Left Behind: The Reality of Living with Arthritis. A lived experience survey [Online]. Available here: https://www.arthritis-uk.org/media/3tgj3rxh/ arthritisuk_leftwaitingleftbehind_report_digital.pdf
- Getting It Right First Time (2021) Rheumatology GIRFT Programme National Specialty Report. [Online]. Accessed here: https://gettingitrightfirsttime.co.uk/wp-content/uploads/2021/09/ Rheumatology-Jul21h-NEW.pdf
- Zanghelini, F., Xydopoulos, G., Howard Wilsher, S., Afolabi, O., Webb, D., Eddison, J., Ingram, T. A., Clark, C., Hamilton, J., Sengupta, R., Gaffney, K., Fordham, R. (2025) What is the economic burden of delayed axial spondyloarthritis diagnosis in the UK?, Rheumatology. 64(9):4913–4920. https://academic.oup.com/rheumatology/article/64/9/4913/8120097
- National Early Inflammatory Autoimmune Disease Audit (NEIAA) (revised 2025) State of the Nation Summary Report 2024. Accessed here: Ref.-428-NEIAA-SoN-Report-2024-revised-March-25.pdf
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