Written by Dr Louise Bennett | Rheumatosphere, University of Glasgow, Glasgow, UK
Building on last year’s launch, the EULAR ‘Don’t Delay, Connect Today’ campaign was a highlight of this year’s EULAR Congress. As part of EMJ’s independent review of the event, Dr Louise Bennett, a member of Rheumatosphere based at the University of Glasgow, Glasgow, UK, has kindly provided the following insights into how she and her colleagues took the campaign to some of Scotland’s most remote areas.
Don’t Delay, Connect Today: Scotland
Last year, the European League Against Rheumatism (EULAR) encouraged groups to apply for funding in order to implement their public engagement campaign ‘Don’t Delay, Connect Today’ (DDCT) in their home country. The DDCT campaign aims to raise awareness about the importance of early diagnosis in the treatment of musculoskeletal (MSK) conditions, such as rheumatoid arthritis. By treating early in the well-established ‘window of opportunity’, patients have been shown to display better clinical outcomes in response to therapy. To this end, the campaign’s focus is on equipping the general public with the information required to recognise the early warning signs of MSK conditions and, upon recognition, encourage them to connect with their local general practitioners (GP). In order to ensure that practitioners escalate these cases appropriately, campaigners will work with them to ensure that they recognise characteristic early warning signs and understand the importance of referring individuals to rheumatology specialists as quickly as possible.
Rheumatosphere, based at the University of Glasgow, Glasgow, UK, was awarded funding from EULAR to implement the DDCT campaign in Scotland, and we decided to take our work to some of the country’s most remote areas: the Outer Hebridean islands. These islands currently have limited access to MSK disease specialists; hence, the campaign is aimed at providing the residents with the information they need to recognise early indicators of disease and raise their concerns with their GP. This will result in them receiving treatment earlier. In order to raise awareness, our team set out to hold six public engagement events across the islands, thereby interacting with as many individuals as possible to have the greatest impact with the campaign. Events were held in North Uist, Leverburgh, Tarbert, Callanish, and Stornoway, with the largest event taking place at the Callanish Standing Stones visitor centre and the local Co-operative supermarket. At the visitor centre, we were able to engage with both locals from the islands and the tourists who come to visit, often on bus tours, hence increasing the amount of interaction we had. Engagement at the Co-operative supermarket was also very productive due to footfall; here, we engaged with hundreds of local residents, giving out flyers about the campaign and also talking to those who had already received a MSK disease diagnosis.
Throughout the campaign, we have endeavoured to raise awareness through social media; Rheumatosphere has a presence on Twitter, Instagram, and Facebook to reach as wide a demographic as possible. Twitter analytics showed that during the month of our cycle event, we had 1,188 Twitter page visits, 29 new followers, and an astonishing 20,300 Twitter impressions. Further to this, a Facebook video was posted on the Callanish Standing Stones centre page, informing the public of who we were and what we were doing at the visitor centre. This video managed to gain an impressive 638 views. Through social media, we were able to extend the impact of our events, greatly increasing the number of individuals who saw the essential messages of the DDCT campaign.
“These islands currently have limited access to MSK disease specialists; hence, the campaign is aimed at providing the residents with the information they need to recognise early indicators of disease and raise their concerns with their GP.”
As previously stated, there is limited access to rheumatology and MSK services on the Outer Hebridean islands; rheumatology education for primary healthcare professionals (HCP), including GP, nurses, and physiotherapists, is therefore an essential tool. Capitalising on this, we ran an event for all primary HCP through which we were able to reinforce the early warning signs of MSK conditions and highlight when individuals should be referred to rheumatology services. Since there is only one visiting rheumatologist and one permanent rheumatology nurse in this area, we also wanted to avoid overloading their system with unnecessary referrals, making this training and guidance for primary HCP all the more impactful and essential on the islands. Our HCP event was well attended and we were able to inform the attendees about the campaign and discuss at length ways in which the HCP on the islands could work together to improve care and treatment of MSK patients.
One of Rheumatosphere’s aims, along with its partner organisation for the DDCT campaign, the National Rheumatoid Arthritis Society (NRAS), was to engage with those on the islands already living with MSK conditions. NRAS provided excellent marketing support for the event, along with educational materials for those patients on the islands already living with disease. With an NRAS ambassador who accompanied the Rheumatosphere team to the islands, we were able to hold two patient meetings: one on the Isle of Harris and another on the Isle of Lewis.
“This expedition was exciting and often challenging for the team; it involved cycling through wind and rain (and on occasion sunshine), riding against the clock to make connecting ferries, and ascending >600 foot to conquer the Clisham in Harris before reaching the final destination.”
Further to the engagement work carried out on the islands, seven members of the Rheumatosphere team also cycled the Hebridean Way from Vatersay to the Butt of Lewis, raising money for NRAS. Our challenge was endorsed by Mark Beaumont, who launched the Hebridean cycle in 2016, cycling the 185 miles in under 24 hours. Mark stated: “I am delighted to add my support to a team of clinicians and scientists from my alma mater, the University of Glasgow, who are taking on the beautiful Hebridean Way cycle challenge. Setting out on 13th May, this 185-mile route traverses the length of the Outer Hebrides and is in support for EULAR and a campaign called ‘Don’t Delay, Connect Today’.”
The team completed the 185-mile cycle in 4 stages: the first was 65 miles from Vatersay to North Uist, the second was 50 miles from North Uist to Tarbert, the third was 40 miles from Tarbert to Gearrannan, and the fourth was 30 miles from Gearrannan to the Butt of Lewis lighthouse. This expedition was exciting and often challenging for the team; it involved cycling through wind and rain (and on occasion sunshine), riding against the clock to make connecting ferries, and ascending >600 foot to conquer the Clisham in Harris before reaching the final destination. Having been successful in completing our cycle, we were able to raise >£3,000 for NRAS.
“The Rheumatosphere team, along with NRAS, has taken on the challenge of delivering the DDCT campaign and enjoyed every minute of it…”
The Rheumatosphere team, along with NRAS, has taken on the challenge of delivering the DDCT campaign and enjoyed every minute of it; we are now planning to extend the campaign’s reach through more of the Scottish islands. I would encourage anyone interested to get involved in this worthwhile cause; take a look at the EULAR website for more details of the campaign:
https://www.eular.org/what_we_do_dont_delay_connect_today_2018.cfm?fromSearch=don%27t%20delay
