A charity is calling on the new Scottish government to bring forward a musculoskeletal action plan so the one in three people in Scotland living with arthritis and similar conditions can get the diagnosis, treatment and support they need – everywhere in Scotland.

Arthritis UK’s call for a musculoskeletal (MSK) plan – backed by clinical leadership and “a relentless focus on investment in orthopaedic waiting times” – comes as they publish a snapshot of the day to day experience of people affected.

The charity says some 1.7 million Scots are living with the pain, fatigue and financial strain arthritis and musculoskeletal conditions can cause.

Arthritis UK says these people remain ‘invisible’ in national health planning, leaving some waiting years for a diagnosis, struggling to access treatment, and facing barriers to independence.

The report, The Silent Treatment: Why an Arthritis diagnosis matters reveals that delays are often caused not by one single long wait, but by a series of barriers across the diagnosis pathway.

Respondents told the charity their symptoms might be dismissed as minor, mistaken for ageing or work-related strain, or not recognised as arthritis at all. After coming forward for help, some reported having to face further hurdles such as difficulty getting appointments, delays accessing tests, or long waits for specialist referrals.

Head of Scotland at Arthritis UK, Lauren Bennie (pictured) says people with arthritis waiting for a diagnosis are being left in pain, uncertainty and without vital support:

“Getting the right diagnosis quickly can be life changing. When diagnosis is delayed, people can be left in pain, uncertainty and without the support, treatment and information they need. In some cases, conditions may worsen while people wait, causing long-term damage and leaving people feeling isolated and alone.”

The charity warns that delays in diagnosis can have major consequences for people’s health, work and independence. Meanwhile, the report finds the uncertainty of not knowing what is wrong can also take a major toll on mental wellbeing, make conditions harder then to treat while creating wider costs for the NHS and the economy.

Drawing on lived experience workshops and focus groups, as well as input from health and care professionals, the report found that a diagnosis provides reassurance, recognition and a route to treatment, information and support after months or years of pain and uncertainty. People said the sense of finally knowing that their pain and symptoms were real and recognised could be ‘hugely comforting’.

One focus group participant said:

“A diagnosis helped me feel like I wasn’t going mad.”

Another said:

“The validation is so important. It gives you a huge sense of relief that you haven’t been imagining it. It would have been really good to have had that some years earlier, when I was still working and in so much pain.”

Lauren Bennie is appealing for Scotland’s new government and parliament to take steps to show people with MSK conditions that their pain is being taken seriously:

“With the First Minister’s cabinet appointments now made, MSPs and ministers have a real opportunity to finally give arthritis and musculoskeletal conditions the focus they deserve. Faster routes to diagnosis, earlier intervention and better support must now become part of a long-term MSK action plan to improve outcomes for the millions of Scots living with these conditions.”

Case Study: Kathy Morrison, 55, from Helensburgh shared her experience of delayed diagnosis and treatment.

Kathy suffered pain from childhood and was finally diagnosed with osteoarthritis at 50, although she had been living with pain since she was 13 years old. For all those years Kathy was looking for an explanation for the pain she was experiencing. She watched it take over her life without having any answers, in constant severe pain, not sleeping and suffering depression. She felt she was ‘existing’, not living. 

At 47 when the pain was at its worst and had spread to her knees and back, Kathy went to see a new doctor who was determined to get to the bottom of her pain. After tests and x-rays it was found she was living with arthritis in her spine and hips. Kathy says finally getting a diagnosis was a huge relief: 

“Life before diagnosis was a nightmare. I didn’t sleep because the pain was so bad and, at one point, I was on both morphine and fentanyl patches, really harsh medication. The pain affected my mental health so badly that I was diagnosed with severe depression which was compounded by grief after losing my husband 11 years ago. I closed myself away. I didn’t know how to deal with the pain, and nobody was helping me.

“That doctor knew what I needed, got tests done and referred me to a community link worker who took me to an Arthritis UK group three years ago, and my whole life changed. It really brought me out of my shell because I’d gotten to the point where I just locked myself away. I remember that first week at a group feeling like I daren’t talk, scared I’d burst into tears.  

“It is disappointing that diagnosis took so long because my life could have been different so many years ago. I could have been spared a lifetime of pain. I’ve also missed out on so many things; I loved badminton but had to give it up at 14 because it affected my back so badly and I’ve never been able to play since.”

 

Read more: Childhood adversity health impacts felt at 50 revealed; New gene study offers arthritis treatment insights; Depression linked to poorer physical health outcomes

Sign up to our bulletin for key health & social care updates straight to your inbox.