It’s been a stormy couple of weeks in UK parliament with the controversy around the suppressed Care Quality Commission report on the poor performance at Furness Hospital. Anyone following this parliamentary scrutiny on patients might also have spotted an Early Day Motion drawing MPs attention to the need for better awareness in Rheumatoid Arthritis. This was coordinated by our very own partner the National Rheumatoid Arthritis Society (NRAS) and we’re delighted to have a blog post from Ailsa Bosworth, the CEO of NRAS, to conclude this week.
– Matt Jameson Evans, Co-Founder & Chief Medical Officer at HealthUnlocked
Ailsa Bosworth is Chief Executive of NRAS, the only patient led charity in to the UK to deal specifically with rheumatoid arthritis, a disease that affects an estimated 690,000 people across the UK. Ailsa was diagnosed with rheumatoid arthritis over thirty years ago and the experiences she went through inspired her to set up NRAS back in 2001.
We are approaching the end of Rheumatoid Arthritis Awareness Week, the first of its kind in the UK, and a week that we decided was necessary to help focus NRAS’ efforts on raising awareness of a disease that so many people know little about. As people who live with RA will know, the disease is extremely misunderstood and more often than not when people talk of rheumatoid arthritis, all that is heard is ‘arthritis’ leading to assumptions being made about old age wear and tear.
This was identified in the report we launched this week – Breaking Down Barriers. In this report the true extent of this lack of public awareness was exposed and showing why it is important to have awareness campaigns such as this one. The report was the result of a ComRes survey of over 2,000 people and showed that many people simply do not understand the disease, don’t realise what the symptoms are and, most frustrating of all for RA patients, confuse it with osteoarthritis – a very different disease.
Only 10% of people surveyed thought the government was doing a good job raising awareness of long term conditions, including RA, and this is perhaps why it is left to patient groups such as NRAS to raise the profile of such conditions but with very limited resources have limited impact
The theme for RA Awareness Week has been that rheumatoid arthritis can strike at any age and was designed to try and dispel some of the many myths that exist about the autoimmune disease. With people not fully understanding what RA is, they do not realise that young people can get it too. RA is a disease that needs to be treated with urgency otherwise the risk of irreversible damage increases, however this cannot happen if people aren’t being diagnosed because of lack of awareness of the key symptoms to look out for.
So what could we, as a small charity, do to get the message across? NRAS doesn’t have the resource to fund an advertising campaign, however we do have a very valuable resource – PEOPLE. It is people power – our members, volunteers and health care professionals – who this week have done an amazing job at RAISING the RA flag! Digital media has been a fantastic asset with so far 80,000 people taking part in a social media ‘Thunder Clap,’ e-campaign, just imagine what that will be next year!
Over the course of the week we were publishing infographics and video content that shows in an eye catching way what rheumatoid arthritis is, the full impact it can have on the patient and those around them, the lack of awareness that exists. We have also been signposting where people can get to know more about the disease. The results were really encouraging as people were sharing them on Facebook, Twitter and Health Unlocked – thousands of people have been talking about RA this week which is exactly what we set out to achieve. It’s not too late for you do your bit.
Please take a look at these links and share them with those you know.
What is Rheumatoid Arthritis Infographic
Rheumatoid Arthritis, Symptoms
Rheumatoid Arthritis, Mythbuster
Rheumatoid Arthritis, Storyboard
While it may feel like we live in a virtual world, we don’t. Many NRAS supporters have been getting enthusiastically involved in the actual world – holding tea parties all over the country and, along with many rheumatology units, hosting information stands to help spread the message. Local and national newspapers, radio and healthcare professional news outlets have all featured RA Awareness Week.
Lessons have been learnt from the very first RA awareness week and we are already thinking how to grow the event for next year but overall we are incredibly pleased with how it went and very proud of the NRAS team and NRAS members for all the work they have done to make it a success.
– Ailsa Bosworth, Chief Executive Officer of NRAS