Big ideas and little changes – Arthritis Research UK CEO shares renewed ambition to change lives today and tomorrow

Published by Arthritis Research UK | 25 November 2016

A future free from arthritis and the impact of arthritis has been the driving force behind Arthritis Research UK since we first began 80 years ago.

In 2016 we remain focussed on the future, continuing our multi-million-pound investment in exceptional science, but we’re also evolving to ensure we meet the needs of people with arthritis right now and transform lives today.

We asked our Chief Executive Officer Dr Liam O’Toole to share with you how we’re broadening our scope and ambitions and, most importantly, how these little changes to our approach will help everybody live fuller lives with arthritis today and without it tomorrow.

Can you tell us what’s new at Arthritis Research UK?

"Over the last two years we’ve talked to thousands of people with arthritis, listened carefully to what you’re telling us and used your experiences to inform our plans and determine where we invest our energy and resources. Our new approach is for you and it’s also down to you.

"The valuable insight you’ve given us demanded we broaden our scope. It’s driving everything we do and making us the organisation we need to be.

"We’re still investing in the big ideas. In the last year alone we’ve made £21 million of new research grant commitments, funding the groundbreaking research needed to unearth new and effective treatments, early diagnosis and a cure. But we’re also working hard to find solutions to the challenges that limit everyday lives.

"We’re putting people with arthritis at the very heart of what we do, a shift that’s the catalyst for the new focus you’ll see over the coming years. We’re already extending into different areas of research, those with the potential to make the biggest difference to your quality of life, and crucially we’re involving people with arthritis in funding decisions.

"We’re also developing new and better sources of information, advice and support to tackle poor understanding of arthritis and empowering people to take control of their lives.

"Finally, we’re beginning a concerted push to raise awareness of arthritis and campaign to give you a stronger voice."

Why is improving the quality of life of people with arthritis so important?

"I’ve always been passionate about what we do. My mum had lupus, so I have seen first-hand how arthritis can limit your whole life. It’s not just living with aches and pains, it affects everything – your relationships, working life, interests and mental health.

"Listening to your stories over the last two years has inspired me, reaffirming how vital it is that we do everything we can to make that everyday struggle easier for millions of people. I feel a massive sense of urgency as I realise how many people are out there in need of our help."

Why is there such poor public understanding of arthritis and what are you doing to change it?

"Everyday freedom from the limits of arthritis is impossible unless we get people talking about arthritis. It’s about making the invisible visible.

"We want people with arthritis to talk to us, but we also want them to be open with their loved ones, healthcare professionals and their employers. We want the health service, policy makers and those in power to be talking about arthritis."Everyday freedom from the limits of arthritis is impossible unless we get people talking about arthritis. It’s about making the invisible visible."

"Despite the scale and impact of arthritis on people and on wider society, arthritis remains misunderstood and not fully recognised by employers, the health service or decision-makers. It’s a paradox which can perhaps be explained by the fact that the two main symptoms of arthritis are pain and fatigue, both devastating and both invisible.

"People have concerns about whether they’ll be believed, fearing their symptoms will be dismissed if they share them with employers, family and friends and even healthcare professionals. Time and again we hear of people suffering in silence and, as one woman I spoke to explained it, ‘putting on a glad face’ around other people. This anecdotal evidence is borne out by academic research which found people with arthritis tend to under-report their pain to healthcare professionals. Making this hidden burden visible will change lives.

"Starting this conversation about arthritis through our annual Share Your Everyday campaign has led to us calling for the research community’s best ideas on tacking pain and fatigue. The first tranche of projects from this focussed funding call are now underway, aiming to improve our understanding of pain and develop new and effective treatments.

"But we must carry on talking and raise awareness of the reality of life with arthritis. In fact, you may have noticed we look and feel a little bit different. Our new brand was designed to reflect your experiences and to boost our profile and visibility, so we can reach out and help even more people with arthritis."

As Chief Executive Officer, what elements of the charity’s work are you most excited about?

"Everything we’re doing is exciting as it has the potential to transform lives. However, the research into the microbiome, aiming to unlock the link between gut bacteria and the development of inflammatory arthritis, is exciting because it’s exceptional science in action. Creating a vaccine for inflammatory arthritis would be life-changing for millions, so we have a responsibility to invest in innovative, high stakes research like this.

"I also love the ideas springing out of our research call with the Design Council, encouraging designers to develop new products and living aids for people with arthritis. If an everyday task that we all need to perform, for example plugging in an appliance, is painful and takes 10 minutes rather than 10 seconds, the implications of product innovation in this area are huge.

"It’s exciting that we’re broadening our horizons to work with anyone that can help us change the everyday lives of people with arthritis by finding ingenious solutions to everyday problems.

"Finally, we’re making real progress with our renewed commitment to give a strong and influential voice to everyone with arthritis. We have 158 active Arthritis Champions in Parliament, we were mentioned in the recent Green paper on Work, Health and Disability and this autumn our Share Your Everyday campaign was the catalyst for the first parliamentary debate on arthritis for more than five years."I’m proud that we’re speaking out to make sure the limits of arthritis are being recognised by those who are in power."

"I’m proud that we’re speaking out to make sure the limits of arthritis are being recognised by those who are in power and lobbying for decision makers to make positive changes that will transform the lives of people with arthritis.

"As we move forwards as an organisation I’d urge you to keep talking to us, particularly by telling us about your lives through the Share Your Everyday campaign. You can play a vital role in helping us to push back the limits of arthritis; it’s only by working together that we will achieve the future free from arthritis and the impact of arthritis that we are striving for."

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