More than just a label: The importance of a timely and personalised Arthritis diagnosis

Over 10 million people in the UK are living with arthritis. Depending on the intensity of symptoms, arthritis can have a significant impact on someone’s life as it can affect everyday activities. Due to this impact, arthritis is one of the leading forms of disability in the UK.

Despite arthritis affecting so many lives, people face barriers to accessing the care and support they need right from the start, with many experiencing delays to a diagnosis.

As part of Arthritis Awareness Month, Arthritis UK has launched, The Silent Treatment: Why an Arthritis Diagnosis Matters. The report brings together insights from people with arthritis and health professionals to highlight the barriers faced throughout the diagnosis pathway.

People with arthritis should not have to struggle alone

The report includes powerful testimonies that people shared as part of lived-experience workshops and case studies. What came through in these stories, was that 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.

There was a sense of validation in eventually getting diagnosed because I’d suspected I had arthritis but was dismissed for 20 years which left me angry, frustrated and feeling like I was banging my head against a brick wall – Ken, Scotland

Delays throughout the pathway 

Despite the importance of a diagnosis, there are delays throughout the 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. 

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.

It has been an incredibly difficult process receiving a diagnosis and treatment, even following a private route. There are many hurdles to overcome at a time when you feel unwell and very vulnerable – Val, Wales

Personalised information and holistic care

Previously, National Voices published Our vision for improving patient experience of diagnosis, which highlighted the importance of better communication around diagnosis and ensuring that people have a plan. This is reflected in the stories that people with arthritis shared. A diagnosis should be clearly communicated and explained. Importantly, the diagnosis conversation should be more than just providing a diagnostic label. It should provide people with an opportunity to ask questions or address any concerns, discuss a plan or what the future might look like.

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. 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.

Additionally, a diagnosis can be the gateway to wider support through signposting. For example, signposting to the voluntary sector can provide people with a range of support, from health information, peer support and information on financial and employment support.

While life with a newly diagnosed long-term condition can be daunting, a personalised diagnosis conversation can 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.

The report urges urgent action from UK governments and National health bodies 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 whilst they wait for a diagnosis.

You can read the full report here. For any questions, please reach out to Aisha (Aisha.mazhar@arthritis-uk.org)