Some three months have passed since I was in Lisbon with my wonderful friends and colleagues to celebrate the 20th Annual European Conference of People with Arthritis/Rheumatism in Europe (PARE). While in the delightful Portuguese fishing town of Cascais – 30 kilometres West of Lisbon, we also recognised the 70th anniversary of the European League Against Rheumatism (EULAR), reflecting on how far we have come, and just how much further we have to go until rheumatic and musculoskeletal diseases (RMDs) are well and truly under our control.
In 1998, the first dedicated conference for organisations of PARE was held
in Amsterdam, which has since been hosted by a different country each year. This year’s 20th anniversary conference was held in Lisbon, Portugal, hosted by the Liga Portuguesa Contra as Doenças Reumáticas (LPCDR) – the national organisation for people with RMDs in Portugal.
Don’t Delay, Connect Today!
For the first time, all three pillars of EULAR (People with RMDs, health professionals and medical doctors/scientists) united under a new campaign, ‘Don’t Delay, Connect Today!’, working together towards prevention, early diagnosis and access to care in RMDs. The campaign was introduced at the conference by Professor Gerd-Rüdiger Burmester, President of EULAR, before its official launch at the EULAR Congress in Madrid in June, allowing organisations of PARE time to prepare for their World Arthritis Day (WAD) events on the 12th October 2017.
Raising the profile of RMDs
A highlight of the conference was the attendance of Manuel Delgado, Secretary of State of Health in the opening session. On Thursday 24th February 2017, LPCDR had hosted a political event at the Portuguese Parliament, which was attended by EULAR representatives. The gala dinner was attended by Dr Ricardo Baptista Leite, a member of the Portuguese Parliament, who also gave a speech in support of people with RMDs in Portugal. This high level of political engagement helped to raise awareness of RMDs in Portugal and to highlight the importance of early referral, so that the approved National Network of Specialised Rheumatology Services and Referral to Rheumatology Criteria in Portugal can be implemented by 2019. Raising awareness of the importance of early referral to rheumatology services was one of the LPCDR conference objectives, along with promoting the importance of the patient’s perspective in Portugal.
Developing skills, learning together
Following presentations in the opening session, the conference programme focused on seven interactive workshops, five of which were repeated, allowing delegates the opportunity to attend three different workshops. The workshops covered a range of hot topics, including campaigning for the prevention of RMDs and a European Union perspective on access to work; engaging national organisations with the ‘Don’t Delay, Connect Today!’ campaign; strategies to engage in the social media revolution; exploring how organisations can help increase rheumatology services and media interview skills training. There were also two Young PARE workshops – strategies to empower young people with RMDs, and enhancing self-management using innovative and accessible technologies.
I was absolutely delighted to lead the planning and delivery of two workshops, reflecting on the growing importance of social media. One workshop was aimed at beginners and one for those more experienced. It was an honour to co-facilitate these workshops with Dr Elena Nikiphorou, a consultant rheumatologist at the Whittington Hospital and Chair-Elect for the Emerging EULAR Network (EMEUNET), and Nina Unesi, Press Secretary for the Swedish Rheumatism Association. Both Elena and Nina delivered fantastic case studies, focusing on how healthcare professionals and patient organisations, respectively, can use social media effectively for a range of purposes.
As a team, we delivered two tailored workshops, the first focusing on enabling delegates to feel comfortable using social media and confident to develop an effective digital content strategy. The second workshop placed more emphasis on managing conflict and utilising social media analytics. In both workshops, the delegates were split into three sub-groups to undertake their practical challenges. In the beginner workshop, this was either setting up an account and learning the basics of Twitter; designing graphics using Canva and other software; or making social media efficient using online tools. In the advanced workshop, the three sub-groups focused on strategy and branding; managing conflict; or using analytical tools.
On Friday afternoon, we had the opportunity to participate in the Best Practice Fair, an exhibition for posters and videos focused on presenting and sharing organisations’ best practice campaigns and activities. The posters and videos were displayed in three rooms, each grouped by different audiences: health professionals, people with RMDs or the general public. There were 16 posters and 10 videos presented, all of which were inspiring and informative. We were encouraged to read the posters, watch the videos and ask the presenters about their campaigns, before voting for the campaign from each category that we would most like to hear more about. I was delighted to talk about the toolkit that we have developed as part of the paediatric rheumatology clinical studies group in the UK, to help people get the most out of their involvement activities in research.
After an enjoyable and productive few days, Marios Kouloumas and Dieter Wiek presented the conference closing remarks, with Nele Caeyers, who will be taking over as Chair of the Standing Committee of PARE in June 2017. They thanked all delegates for their important contribution to the workshops and the overall conference, finishing with aspirations for the 21st EULAR Annual European Conference of PARE, which will be held in Brussels in February 2018. After all the hard work, we attended a lovely gala dinner on the Saturday evening and were treated to an uplifting performance of Portuguese dancing!
For a more in-depth review of the conference, a full copy of the official report can be found here.
Take nothing for granted
It was fabulous to meet with my colleagues at the EULAR Annual European Conference of PARE, all of whom have become genuine friends. Everyone, and I mean everyone, is so welcoming. It is truly a magical experience, and certainly a conference like no other. It was particularly special, as I was able to meet with my dear friends from EULAR Young PARE (including Jeanette via Skype), as we reflected on the work so far of our working group since 2015, and our plans for the next two years. As we departed for home on the Sunday afternoon, obligatory hugs and well wishes were exchanged. The last person I said goodbye to was my good friend, Dora Papastavrou, as we wished each other a safe journey home. Dora’s smile alone would brighten the darkest of rooms, and we talked about my upcoming trip to Athens in September, with her already making plans for us to meet up while at the PReS Conference. I was never expecting for this conversation to be our last. On the 13th March 2017, Dora sadly passed away, leaving a void in the lives of everyone who had the privilege of meeting and knowing her. Dora will always be remembered and greatly missed by us all, and I hope that we make her proud by working together, stronger than ever, to help people living with RMDs.