Arthritis UK report calls for improved arthritis diagnosis
Arthritis UK's UK Advocacy and Health Intelligence
As part of Arthritis Awareness Month, we’ve launched a report, 'The Silent Treatment: Why an Arthritis Diagnosis Matters', to bring together insights from people with arthritis and health professionals to highlight the barriers faced in achieving a timely and personalised diagnosis for arthritis conditions.
Without a diagnosis, people are without vital treatment and support that can have a long-term impact on their condition. Crucially, for people with arthritis, a diagnosis provides validation and the relief of finally being seen.
The report urges UK governments and the NHS to act upon its recommendations to improve the rate and experience of arthritis diagnosis.
"A diagnosis helped me feel that I wasn’t going mad"
People with arthritis should not have to struggle alone
It’s clear that many people are waiting longer than they should have to for their arthritis diagnosis. This was also a theme of Arthritis UK’s Left Waiting, Left Behind: The Reality of Living with Arthritis report, where people reported experiencing delays across all arthritis conditions. Of those with a diagnosis, nearly 4 in 10 (38%) respondents felt the process of getting a diagnosis took too long. More than 5 in 10 (54%) reported unreasonable waits or delays in getting an appointment with the relevant specialist and more than 4 in 10 reported unreasonable waits or delays in accessing tests or test results (44%).
"It just makes me sad that everyone goes through that length of journey to get the diagnosis"
The cost of a delayed diagnosis
Without a diagnosis, people with arthritis are too often left in the dark, searching for answers as their physical and mental health deteriorates, potentially taking a toll on all aspects of their lives. The longer it takes for people to get a diagnosis and accompanying care, the greater their risk of requiring more intensive treatment and engagement with the health service. A delayed diagnosis can cost the NHS and the wider economy in the long term.
Delays throughout the pathway
Despite the importance of a diagnosis, there are delays throughout the arthritis 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.
Once people do enter the health system, they may face additional delays. Despite the best efforts and dedication of health 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.
Diagnosis is more than just a label
While life with a newly diagnosed long-term condition can be daunting, a diagnosis should be a key step in setting people up to feel that they are not alone. That with the right support, they can live a life of their choosing.
A diagnosis is more than just a label; it can be gateway to the information, care and support that can be life-changing A diagnosis conversation should provide people with an opportunity to ask questions or address any concerns, discuss a plan or what the future might look like.
It is also a crucial step to unlocking the right information and support. Having a formal diagnosis can provide people with the confidence to discuss workplace adjustments and support as being able to name the condition has allowed them to better understand their condition and their needs, allowing them to advocate for themselves. A diagnosis can signpost people to financial support that can help to alleviate some of the financial pressures people often face when manging a long-term condition. Furthermore, during a diagnosis conversation signposting to the voluntary sector can provide people with a range of support, from health information and services to peer support.
The importance of a timely and personalised arthritis diagnosis is clear and can make all the difference. We urge UK governments and national health bodies to take action in the following areas to make this a reality:
- Improve public awareness of arthritis symptoms to help reduce delays in people seeking medical advice.
- Strengthen musculoskeletal content as part of the medical curriculum and encourage training that improves health professionals’ ability to diagnose and care for people with arthritis.
- Improve the collection and quality of data on musculoskeletal conditions in primary and community care.
- Prioritise the timely diagnosis of early inflammatory arthritis so everyone can access treatment and slow the progression of the condition.
- Ensure that NICE guidance for osteoarthritis is being implemented and equivalent guidance is developed in Scotland.
- Ensure people with arthritis are receiving personalised information, signposting and support to manage their condition as part of the diagnosis pathway.
- Embed third sector support into diagnosis pathways to help people live well.
- UK governments should consider conducting in-depth economic analysis on the total cost of delayed diagnosis for both osteoarthritis and inflammatory arthritis.
We're here for you
We’re here for you, no matter what part of your arthritis journey you’re at:
If you are newly diagnosed, you can visit our Guide to diagnosis hub, to access information and support to help you learn more about arthritis and the support available.