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People talk about arthritis being an invisible condition, says Liam OToole, chief executive of Arthritis Research UK. If you cant see the pain, you cant understand the impact. A study for the charity backs him up: it found eight out of 10 people with arthritis felt society didnt understand their condition because it doesnt look serious.

Yet the scale of the problem is huge. Lives, not just of individuals but of families too, are devastated by the pain, isolation and fatigue wrought by arthritis. Meanwhile, the cost to the NHS and the economy, via lost working days, runs to billions of pounds. Arthritis affects everybody, either directly or indirectly, and yet nobody talks about it, OToole says. While other hidden health problems are frequently discussed, arthritis lags behind in the public consciousness.

Arthritis Research UK wants to change that lifting the lid on arthritis is a crucial part of its overall mission: to create a world free from the impact of the condition. The charity believes that once society understands the true impact of arthritis, people will start working together to find solutions. And with its heritage and expertise, its in a strong position to lead the way.

Each strand of Arthritis Research UKs work plays a key role in its overarching objective. As one of the top five medical research charities in the UK in terms of spending, its currently funding more than 300 active projects up and down the country to develop new treatments, so people with arthritis dont have to live in pain. Its working with politicians, doctors, designers and employers, to ensure the NHS, public services, public spaces and workplaces are better equipped to support those struggling with the condition. And with its constantly evolving information and advice services, it works to assist and reassure them and their loved ones.

Last year alone, the charity spent 21.62m on research. Its focus is threefold: finding a cure for arthritis; prevention of the condition in the first place; and transforming the daily existence of those living with the pain of it. Its renowned for its groundbreaking discoveries, including anti-tumour necrosis factor (TNF) therapy a whole new class of drugs that have changed the lives of people with inflammatory arthritis over the past 15 years, since Arthritis Research UK funded research into the activities of TNF in the 1990s.

Pain itself is a key area for research. We think there is a significant subgroup probably 4 million people who are really struggling, OToole says. This is not the sort of pain most of us experience for a couple of weeks. This is chronic, long-term pain for months, years, decades.

But the problem has been neglected, he believes, because the health service is organised around diseases and disciplines: There isnt much research into pain because it doesnt fit into that [structure], and there wasnt enough funding. We want to be strategic: we need to get clever scientists together to get them interested in pain.

In recent years, the 81-year-old organisation has sought the views of 10,000 people living with arthritis to help shape its work and ensure their voices are heard by the people with the power to make change. Everything we do is informed by people with arthritis, OToole says.

Arthritis Research UK works closely with healthcare professionals and provides them with advice and support on caring for people with arthritis. For example, together with the Royal College of General Practitioners, the charity has developed a free online programme that teaches GPs core skills in arthritis care.

Its also working with the design community to give people with arthritis more opportunities to live independently, creating the inclusively designed products and public spaces that are so desperately needed. A funding and support programme to help budding designers turn their ideas into commercial products, delivered with the Design Council, has already discovered Handy-Fasteners magnetic fasteners to replace fiddly buttons, which can be added to peoples existing clothes. And with the Helen Hamlyn Centre for Design, it has developed kitchen products such as a kitchen anchor to support peeling, grating and chopping, and a cook book that encourages hand exercise through recipes involving techniques like kneading.

Arthritis Research UK wants people with arthritis and their families to feel supported to live well with arthritis, which is why it provides a huge range of free information on its website tailored to the needs of those living with arthritis.

Theres an enormous unmet need for advice and support, OToole says. Arthritis Research UK is now using cognitive computing and the input of 500 people with arthritis to develop an online virtual assistant that will learn to answer hundreds of questions people living with arthritis might have.

The virtual assistant is available 24 hours a day which is important, given that pain often keeps people awake at night, says OToole. So is the fact they may have personal questions theyd be embarrassed to ask a doctor. Sometimes people are in so much pain they cant hold their partners hand, he says. You can imagine what that does to a healthy love life.

For OToole, the way arthritis is overlooked has been brought home most starkly by the interviews the charity has carried out. In all the conversations, weve almost needed to take the lid off and give people permission to talk about it and say: Its not OK, he says. The emotional outpouring you then get is enormous.

To find out how arthritis affects us all, please visit: arthritisresearchuk.org/jointproblem

Read more:
The UK's 'hidden' disease: 'Arthritis affects everybody, yet nobody talks about it' - The Guardian

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