Help us raise awareness of rheumatoid arthritis by contacting your local politician today!

[Jamie-NRAS]

To coincide with the launch of the first national Rheumatoid Arthritis Awareness Week, NRAS has today published a major new report on public awareness of the disease called ‘Breaking Down Barriers’, which includes a ComRes survey of over 2000 members of the British public. The report looks at public understanding of the symptoms, impacts and risk factors associated with the disease and we believe it is the first time a detailed analysis of this kind has been conducted.

What have we learnt? Well, as you’d expect, it’s complex. Low awareness of the disease (only 10 per cent have seen public information about the symptoms of RA), a lack of satisfaction with the Government’s efforts to increase awareness (only 10 per cent were satisfied with existing approaches) and confusion between RA and osteoarthritis all come towards the top of the list. There are also sizeable differences in levels of understanding across different demographics such as age, ethnicities and social background.

Frustratingly, the report also uncovers proof of patients continuing to delay seeing their GP when symptoms first occur. This matters because the evidence for targeting early diagnosis and treatment of RA is compelling. Hospital specialists talk about a ‘window of opportunity’ to optimise the effectiveness of treatment. This is a 12-week period, beginning at the point where symptoms are first presented, in which those diagnosed and started on appropriate treatment of stand a much better chance of achieving remission or a low disease activity. In layman’s terms it means people can retain a much better of quality of life and vastly improve chance of staying in work.

However, it transpires with some irony that the average RA patient will delay going to see their GP after the symptoms first appear for about 12 weeks, or sometimes quite a bit longer. This means ‘window of opportunity’ in most cases, goes straight out the window at the first step.

This is bad for patients, it’s bad for the NHS and bad for society as a whole. As my Chief Executive, who has RA, frequently likes to say: “we are expensive beasties”. This is undeniably backed-up by The National Audit Office who published a report on RA services back in 2009. It concluded that the NHS in England spends about £560 million a year in direct healthcare costs and a further £1.8 billion a year on sickness benefits. Not only this, the NHS could actually save about £31 million over a 5 year period if it is able to double the rates of early diagnosis from the current level of 10 per cent to 20 per cent.

So what is the price of a co-ordinated, properly resourced national health campaign? My guess is it’s less than £31 million over five years.

The coalition agreement acknowledged the need to take action to promote public health, encourage behaviour change to prevent ill-health and create innovative techniques to help people take responsibility for their own health. A well-directed campaign to raise public awareness of the symptoms of major groups of long term conditions like inflammatory arthritis (this includes RA) would certainly be a logical step to fulfill many of these objectives.

With Labour also having started to renew its thinking around health policy for the 2015 election manifesto through conducting the ‘21st Century NHS and social care: Delivering integration’ consultation, now is also an opportune moment for the shadow health team to show leadership around this issue.

Don’t get me wrong. This is not about a future government spending endless amounts of money to raise public awareness. Some funding for a national campaign would of course be welcome, but we believe the solution lies in a much more nuanced approach that is applicable across a wider range of long term conditions, as the challenges that rheumatoid arthritis faces are not unique.

The Government could do a lot worse than starting off by facilitating a dialogue with interested parties and begin to develop an action plan focusing on the key groups of long-term conditions that require action to promote early diagnosis, such as inflammatory arthritis.

From this, messages could be co-designed to meet the needs of the various audiences and the Government could then help to introduce a mechanism to create more joined up working across GP practices, community pharmacies and other healthcare settings and even secondary schools and colleges.

If you are as frustrated as we are by the findings of the report concerning the lack of understanding about RA and the need for further action, then please contact your local politician now using the e-campaigning actions we have set up at act.nras.org.uk – and help us to make a difference.

Breaking Down Barriers: Rheumatoid Arthritis and Public Awareness is available to download from the National Rheumatoid Arthritis Society at: nras.org.uk/breakingdownbar...

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Hi Jamie - I have done as you suggest and contacted my MSP and MP with the NRAS RA Awareness campaigning email. I did want to point out that there is a post about this on the Living With Arthritis Forum on Arthritis Care and people are asking for more information about NRAS and this coming week's events too.

Regarding your point about delays in diagnosis - it has been my observation that there are many who get referrals pretty early on but are then stuck in long queues to see a consultant rheumatologist. And I won't even get started on the subject of follow up care for many of us.

Do the events taking place this week include a recruitment campaign to encourage junior doctors who want to specialise, to think about going into rheumatology I wonder? To my mind there is an urgent need for a recruitment campaign in the UK and I feel GPs must often feel very frustrated by watching their patients get steadily worse in the often very long run up to a diagnosis of inflammatory arthritis. Tilda

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Ps I just received an email saying "I have just signed a parliamentary motion in support" from my MSP!