A round up of our RA Awareness Week

[TraceyH]

Our first RA Awareness Week, which ran from 24-30 June, has been a great success and we wanted to share with you some of the key events and achievements from the week. As the first week ever to have been held focussing specifically on raising awareness of what RA is and that it can strike at any age, we have been delighted with how many of our NRAS groups, volunteers and supporters got behind the message of the week and helped us to reach as many people as possible and educate them as to what the disease is, how it differs from ‘arthritis’ in general and make people aware of the huge impact it has on all those affected by the disease.

Getting the Message Out:

A series of new infographics were released during RA Week via Facebook, Twitter and on the NRAS website - a statistics graphic, a mythbuster graphic, a storyboard and a symptoms graphic. These were really well received and widely shared on Facebook. The infographics were a new, visually stimulating way of getting vital information out to the general public and we will continue to use them to communicate our important key messages in what we hope you agree is a simple, eye-catching way.

They are all easily emailed as PDFs so do let us know if you would like any sent to you.

Helpline:

We launched a short video clip of one of our Members, Katy, talking about her experience of being diagnosed and then coming to terms with living with RA. This received over 9,000 views during the week. Katy’s story has a positive outlook as despite taking a year to be diagnosed at the age of 28, her disease is now well controlled and she has recently run a marathon! We know this is not the case for everyone but Katy is a great example of what can be achieved with aggressive treatment.

youtube.com/watch?v=ZATcaMy...(Not working as expected?)

During RA Week we saw a 33% increase in calls to the Helpline so we hope we have managed to help many more people who have concerns or queries about managing their RA.

Breaking Down Barriers - Public Awareness of RA:

We launched the week with the release of the results of a survey commissioned with ComRes to find out what the public understanding is of Rheumatoid Arthritis. The results were not surprising - despite its prevalence there is still a limited understanding among the public as to what RA is with only 41% of people understanding what the symptoms of RA are and only 33% of people understanding the difference between osteoarthritis and RA. Just 16% of people surveyed knew that RA can affect the internal organs and almost half of those surveyed didn’t know that RA affects a person’s life expectancy.

The call to action was for people to lobby their local MP to emphasise the importance of early diagnosis to ensure successful treatment of the disease and alert the Government to the low awareness of RA and for this to be addressed. People were asked to pledge their support online and 399 people took this action, which was a great result. Three parliamentary motions were also put down in England, Scotland and Wales supporting RA Week.

The report findings as part of the launch of RA Week were featured in a number of local newspapers and covered in the Daily Express.

Social Media and Website:

We placed a lot of emphasis on social media interaction during the week and found that people responded well to this.

The NRAS Facebook page received 366 new ‘likes’ and had 1,441 page views during the week compared to 231 views on average at other times. The week’s total reach was 92,555 people. Daily tweets were sent out and we recruited 81 new Twitter followers and had hundreds of retweets during the week including Dr Hilary Jones and Dr Mark Porter. We also asked people to join a Thunderclap, where we asked people to all send out a set message about RA Week at the same time. 361 people joined in and we reached 80,000 people over Facebook and Twitter.

Our website had 12,967 views (of which 65% were new visitors) and the RA Week section had 932 page views. In an average week we would expect to see around 11,800 views so an increase of over 1,000 views during the week.

NRAS Volunteers:

34 information stands or awareness events were organised during the week across the country and NRAS held an information evening in Maidenhead to encourage local people to learn more about RA. Stands were manned in hospitals, GP surgeries, local supermarkets and in Newcastle a Routemaster London bus was parked in the city centre encouraging people aboard to learn more about RA! How original is that?! We also had a number of display boards in local pharmacies. Our group coordinators and group attendees did a fantastic job of raising awareness with the general public and many raised funds as well. Just imagine, if each information stand reached and educated 100 people during the week, which is a conservative number, that’s another 3,400 people we have made aware of RA and its impact.

The call to action was to recruit more peer to peer telephone support volunteers and 23 people completed application forms to join the team. This service is highly valued by people who call our Helpline and funds raised during the week will help to train these new volunteers to support people who need a friendly, understanding ear to help them cope with problems they may be facing.

Media Coverage:

23 separate pieces of media coverage were obtained during the week, including national coverage in the Daily Express. In addition to this was local coverage in our area highlighting the week and activities taking place in the Maidenhead area. We have also been asked to write an article to appear in the August issue of Primary Care on raising awareness and the use of patient reported experience measures (PREMs). On the first day of the week Ailsa, our CEO, was interviewed on a number of radio stations talking about the misconceptions that surround RA, the importance of early diagnosis and treatment and encouraging people to enter into dialogue with their healthcare professionals to ensure they can self manage their disease.

Membership:

During the week we offered membership to NRAS at a 50% discount of £10 pa for the first year. This proved popular with 29 new Members being recruited and one new healthcare professional member. Members do a hugely valuable job of not just supporting NRAS by being part of the Society but also making our voice louder, a very important role during an Awareness Week!

And we didn’t forget our fundraisers…!

RA Week was an awareness raising exercise and this was our focus, however, as always, many of you chose to not just raise awareness but funds for our work too.

We asked for people to hold a tea party during the week and a large number of you did with some amazing looking cakes from the photographs you have been sending us with many of the NRAS groups holding tea parties too. There was also bag packing at supermarkets, plant sales, book sales and people took part in a variety of events including a triathlon, a bike ride, a 10K run, a marathon and a half marathon during the week.

We held a bowling evening in Slough at the beginning of the week and ended the week with an NRAS tea party in the centre of Maidenhead which was attended by our founding patron, The Rt Hon Theresa May.

We also attended Lunch and Learn sessions at two of the pharmaceutical companies which we work with, with one of them raising a staggering £1,559 from a cake sale and auction held for staff.

The total raised from activity during the week was £8,747 - wow, thank you! Funds raised from events such as these will enable us to reach out to an ever increasing number of people seeking support to help them live a better life with RA.

A massive thank you to everyone who got involved and watch for announcements about next year’s week which will once again take place in the latter half of June.