PM challenged to take action on the overlooked condition that affects 1 in 6 people
11 October 2024
Versus Arthritis campaigners have knocked on Number 10 to ask Prime Minister Keir Starmer to recognise the 10 million people living with a common condition that is often wrongly regarded as an older person’s disease.
“It’s not just something that happens to you when you get old. It often involves breath-taking pain and incredible fatigue, and it’s lonely,” says 11-year-old Sfiyah Khan who is one of 10,000 children in the UK with juvenile idiopathic arthritis (JIA).
Our Open Letter to the Prime Minister
Sfiyah accompanied Versus Arthritis chief executive Deborah Alsina to Downing Street, ahead of World Arthritis Day on Saturday, to hand over a letter with more than 85,000 signatures calling for the government to take arthritis seriously.
The letter held a personal message to the Prime Minister, whose mother had a similar condition to Sfiyah.
“I wanted to get involved because having a condition like JIA has made me realise exactly how difficult it can be to get the right support. I wanted to make my little voice heard by raising awareness and to give back to the JIA community, and also to Versus Arthritis who have helped me so much."
“My parents always say that anyone can make a difference, so I wanted to try and help, so that children like me can have the right support with their care, education and wellbeing.”
Challenging misconceptions about arthritis and MSK conditions
Versus Arthritis Chief Executive Deborah Alsina MBE said it was important to challenge misconceptions around arthritis and highlight the number of people affected who are navigating education, working life and raising families. She said:
“Like the Prime Minister, many of us know someone living with arthritis, the resilience it requires and the knock-on impact it has on their quality of life and mental health. This is particularly acute for those affected earlier in life; one study has shown nearly 60% of children and young people with JIA had or required mental health support. Current polices and services do not adequately reflect the burden on both the individual, family and society which is why we’re pressing this new government to make this a new era for millions of people with arthritis who have been overlooked and ignored for too long.”
Arthritis affects more than 10 million people in the UK, of all ages. It is an umbrella term for a range of conditions which cause painful and restricted joints.
"The most common is osteoarthritis which is sometimes treated through joint replacements, and other types like juvenile idiopathic arthritis (JIA) and rheumatoid arthritis which target the immune system and require longer-term medication and therapies.
"Both are linked to higher rates of mental health conditions such as anxiety and depression, declines in physical health, increased risk of other diseases and reduced quality of life."
The NHS 10 Year Plan
Among the opportunities the charity believe Mr Starmer must immediately seize is the upcoming 10 Year Plan for the NHS in England, which is due for publication in Spring.
Ms Alsina explains the importance of the timing of the charity’s campaign adding:
“We’re at a pivotal moment where action on the future of healthcare in the UK is high on the agenda and being shaped by how it can deliver for the economy too.
“We’ve come here today to show the breadth of people it affects and the impact it has on lives – living in pain, wanting but struggling to learn, to work and live full lives.
“If our new Government is committed to tackling health to help prosperity, musculoskeletal conditions like arthritis must be placed on equal footing with other major conditions.”
“In England, the NHS 10 Year Plan is being written by the government as we speak. To see real change, MSK and arthritis must be included and prioritised for action. We hope they’re listening.”
Musculoskeletal conditions – those that affect our bones, joints and muscles - like arthritis, are on the rise. They account for one in seven GP appointments in the UK and are the second most recorded reason for being off or out of work, after mental health.
Meet our campaigners
Helping put faces to those who make up these statistics, were four other campaigners joining Sfiyah and Ms Alsina in Westminster to share their stories of struggling to access basic NHS treatment, paying for surgery overseas to stay in work, and the daily impact of the condition.
John’s story
These include John Winnik, 72, from Harrogate who had hip replacement surgery in Lithuania after his osteoarthritis worsened and he feared he’d need to give up his job as a glazing industry consultant. John said:
“It took seven years of GP and hospital visits to get me on the list for an NHS hip replacement, by which time my quality of life had diminished greatly. Then to be told it may be another 18 months forced my hand to go abroad and pay for the procedure myself.”
“During my search to find the right clinic I was shocked to talk to people through a WhatsApp group about waiting times for hip and knee replacements of up to five years, depending on where you lived in the UK.”
“All of us had the same complaint; I’ve paid into the NHS all my life and shouldn't have to spend my hard-earned savings to get the treatment I need.”
Pippa’s story
Pippa shared why campaigning with Versus Arthritis is so important:
“I signed the Open Letter to the Government because people suffering with arthritis need timely diagnoses and effective treatments to manage their pain and maintain their quality of life. The campaign is crucial as it highlights the urgent need for better healthcare support and resources for the millions affected by arthritis.
“Personally, I believe that raising awareness and advocating for these changes can significantly improve the lives of those living with this debilitating condition.”
Mary’s story
Mary shared her experience with arthritis and why signing the Open Letter is so important:
“I think the Open Letter is important because anyone can get arthritis, the young and the old. It changes your life; everything you do is centred around arthritis and pain.
“The pain can be awful, especially if you push yourself too hard and have a flare-up. You feel so bad that you can't even get out of bed on your own. I can’t walk anywhere. It’s just agony. I try not to let it affect me, but I can only stand for about 10 minutes, then the pain in my back has me bending over.”
“It’s nearly a year now since they put me on the list and I’ve no idea what is happening. There’s been no updates. It’s devastating every time I don’t hear anything. We need better transparency - we want to know what’s going on.”
“Arthritis is not taken seriously enough by the government. The waiting list is just the tip of the iceberg. I was struggling for five years before this, with my knee and my ankle. It’s a long time of your life.”
Ken’s story
Ken shared why campaigning with Versus Arthritis is so important:
“Why is it important for me to have signed the Open Letter? To show support for a cause that is often overlooked and neglected. All members of society, including those with disabilities, are valuable contributors and deserve to have their voices heard.
“Along with others who endure painful and debilitating conditions, I deserve to be heard. Campaigning provides a sense of value as we strive to manage chronic pain.
"Without the support of organisations like Versus Arthritis, our effective communication would falter, leaving our voices and struggles largely unnoticed.
“Chronic pain is a common struggle for many, accompanied by a myriad of challenges. Beyond charitable organisations, there seems to be a lack of substantial support.
“A significant workforce exists that, if given proper support and attention in the workplace, has the potential to contribute far more than the government recognises. We deserve to be heard in today's society of equal opportunities and diversity.”
Read more about Kens story
Tackling waiting times
The case load for trauma and orthopaedic treatment and surgery, such as joint replacements, has topped one million in the UK - the largest single cohort of those waiting for treatment.
At the Labour Party conference last month, Secretary of State for Health Wes Streeting announced plans to bring down waiting times to get people back into work.
Ms Alsina welcomed the recent announcement on targeted action on waiting times, but flags caution, adding:
“Announcing targeted extra support to hospitals in the areas with the highest levels of people out of work is recognition by Mr Streeting of the huge impact of long waiting lists on both the health and wealth of individuals and the economy.”
“But everyone living with arthritis or musculoskeletal conditions should be able to access the treatment they need, no matter where they live or their economic return. Failing to do so risks creating a two-tier health system, something the government has promised to end.”
Care and treatment for arthritis is not just joint surgery, which is only appropriate for some conditions and a small percentage of people. For the majority, a good diagnosis, medication, and timely access to support therapies are essential to help manage symptoms given there is currently no cure.
How Versus Arthritis work with you to improve quality of life for all people with arthritis
Versus Arthritis has worked with its community of those living with arthritis to prioritise what needs to be done. In addition to prioritisation of arthritis in healthcare plans and policy, we want to see immediate action to deliver swifter appointments and simpler paths to see the right healthcare professional at the right time.
To enable people to thrive and remain financially independent, we are calling for greater roll-out of schemes to help people with arthritis to stay in, or return to, work.
And, for the thousands of young people navigating childhood and schooling, we want to see delivery of the right tools in school, at home, and in the community, so that they can thrive.
Read the Open Letter to the Prime Minister