PReS Congress 2023: Our highlights
PReS is a European scientific society for healthcare professionals in the field of paediatric rheumatology. The PReS Congress is an annual event which took place at the end of September in Rotterdam. In recent years, PReS has been running as an online congress (such as in 2021) or hybrid as it was last year and this year. You can find some of the ENCA talks from the last couple of years on our YouTube channel. If you are reading this and you represent a patient organisation anywhere in the world that focusses on Juvenile Idiopathic Arthritis (JIA) or other paediatric rheumatic diseases, patient organisations can join ENCA here which will enable your organisation to apply for a free ticket to next year's congress.
It is conferences and congresses such as this that enables researchers, clinicians and patient organisations to come together, learn from each other and hear about the latest research developments in the field of JIA and other paediatric rheumatic conditions. Several of the research projects that we are currently involved in have begun from conversations at congresses such as PReS and EULAR.
Here are some of our highlights from PReS 2023:
ENCA board meeting
Our time at PReS began earlier than the start of the actual conference as the ENCA board meeting - the first in-person board meeting for many years - happened on the evening before congress began. The ENCA board is made up of volunteers from patient organisations around the globe. ENCA forms that vital link with patients at PReS Congress enabling researchers and clinicians to ensure that patients remain at the heart of all they do.
Health Professionals Launch meeting
Day one of PReS began with the Health Professionals Launch meeting where we had been invited to speak about developing patient information and education resources. We were able to showcase some of the best resources from around the globe as well as talking through the process of how we have developed our own resources to support children and families affected by JIA. Ronald van Houwelingen spoke from a physiotherapist's perspective showcasing some of the tools used within his practice in the Netherlands.
It was a great opportunity to connect with Health Professionals - connections that have already been followed up with new projects commencing as a result. It was also the very first year that PReS Congress had invited patients from the host country to attend the congress so it was an absolute delight to meet a young person with JIA and her mother who we were able to speak to, encourage and provide hope to as they heard from us about the advances that we have seen in the medical field in recent years and how a diagnosis of JIA these days doesn't mean having to give up on everything you love and enjoy doing. With the right medication and support, young people with JIA can follow their dreams and aspirations.
Opening Plenary Session
Next the Opening Plenary session included the announcement of the new PReS president elect and treasurer elect, highlights of the year gone by. ENCA's chairperson, Christophe Normand also gave an emotive talk on how the medical profession and researchers are the heroes for our families and children as they seek a cure for rheumatic diseases in the work they do.
The Opening Plenary ended with an incredibly poignant and powerful patient story by Marlies Allewijn. The story told so beautifully coupled with the mesmerising talent of local sand artist Gert van der Vijver, left not a dry eye in the auditorium.
We met up with friends old and new including the inspirational young people who are part of Youth-R-Well in the Netherlands and Dutch patient organisation Jeugdreuma Vereniging Nederlands.
The next day began with some excellent talks by Lynette, an inspirational person with Lupus, sharing her experiences and Dr Janet McDonaugh reminding us of the importance of remembering that young people are young people first and foremost.
We caught up with the WORD day committee in preparation for WORD day 2024 which will happen on 18th March 2024. The WORD day video was also launched at PReS Congress and we are so proud of the young people from around the world who took part in the video including several of the children and young people linked in with Juvenile Arthritis Research from the UK. You can find out more about WORD day on our WORD day hub and keep an eye on the global WORD day website for details of WORDday2024. Remember, raising awareness of paediatric rheumatic conditions such as JIA is the single most important thing that we can all do to make a difference.
Our founder, Richard, presented his research with the University of Manchester on the topic of ethnicity in JIA.
In the afternoon, we heard an excellent talk from Catherine Tranter about a project looking at methotrexate adherence and side-effects, and the important role that Clinical Nurse Specialists play in supporting children, young people and families as they navigate life with JIA and taking medications.
We also heard about initiatives from other countries that have helped children and young people such as EMDR therapy and the use of touchpoint technology to reduce nausea associated with medication. And the use of "medical clowns" in Israel when giving joint injections as a way of distracting from the pain and reducing the anxiety and distress that some children may experience when having such procedures.
That evening we were invited to the speaker's dinner which was a great opportunity to meet and get to know some of the other speakers at this year's congress.
"Asking for help is not being weak - it is being strong!" Jasper Oprins.
The next day, the ENCA sessions covered the topic of fatigue and as a result of meeting with contacts from Norway, we are now able to share this fantastic video about fatigue on our website. We heard the experiences of two inspirational young people who gave their perspectives on living with fatigue. Jasper is a young person who was diagnosed with JIA. He spoke last year at PReS Congress and you can watch his excellent previous talk here. Together with Youth-R-Well's CEO Tim Van Helmond, who was diagnosed as a teenager, they discussed the challenges of living with a rheumatic condition and shared some of their tips for living life to the full.
"When you ask how I am, do it 1:1 not within a group." Tim Van Helmond.
The second of our research posters was presented as part of a poster tour. This is a study looking at levels of awareness of childhood arthritis in the community. It is the first study of it's kind and gives us data and insight to know what current levels of awareness are. This is an important measure as we have always known anecdotally that awareness is low. Almost everyone with JIA will have examples of the surprised reaction they receive from others when they tell them that they have arthritis. Many parents/carers are shocked by their child's diagnosis as they were not previously aware that children and young people can get arthritis. This important benchmark shows just how necessary our #ThinkJIA campaign is and how we need to get more people to hear about it as well as showing the need for initiatives such as WORD day.
We know the difference that awareness makes. It leads to faster diagnosis and earlier treatment. That leads to better outcomes for children with JIA. Awareness truly changes lives.
The ENCA round table was a chance for all ENCA member-organisations to get together and think about topics for future congress sessions, sharing best-practice examples from within their organisations and sharing opportunities to connect and collaborate.
Our session theme that afternoon was the impact of rheumatic diseases (RMDs) in education where we had three superb speakers. Libby Newsome, a teacher with experience of working with children with JIA, gave an insightful talk of how teachers and schools can get things right and get the balance right when supporting a child with JIA. Libby was also a panel member of the WORD day education webinar this year.
Rebecca, who is one of our core volunteer team, spoke about her experiences as a young person with JIA in school some 30 years ago and how sadly, in some schools, things haven't changed in terms of understanding and support. We've developed a great number of resources aimed at schools to help them as they support children with JIA in their settings.
And 17 year old Luc shared what life is like for him living with an incredibly rare autoinflammatory condition which impacts on his life with many 'sick days' off school and how he is now planning ahead for university as he continues to navigate life with a rheumatic disease through all the stages of his education.
"Growing up is a process... they have to find solutions and strategies on their way to adulthood." Gabi Erbis sharing about the transition process of transferring from children's to adult clinic.
There was another early start on the final day of PReS Congress as we heard Dr Polly Livermore speak about mental health and JIA, followed by Richard Beesley sharing the patient perspective and a call to action for more to be done to support the mental health of children, young people and families affected by rheumatic condititions, particularly those who have reached crisis point where services are lacking or don't have the expertise in supporting mental health in relation to some of the condition-specific issues that we see. Gabi Erbis gave an insightful presentation showing a best-practice example of supporting young people holistically as they go through the process of moving from children's care, through adolescent care and into adult care. It is known that chronic illness is a risk factor for mental health issues. At her clinic, mental health is part of the conversation throughout making it easier to identify issues promptly and provide support effectively.
"It's hard being a young person...it's even harder for those with JIA." Richard Beesley talking about mental health in JIA and how we can support families.
And then PReS Congress was over for another year. We were humbled to have so many of our international friends seek us out to tell us how helpful they have found our resources and how inspired they are by what we are doing to support children, young people and their families in the UK. It was also a huge privilege to meet with those living with JIA in the Netherlands who cared enough about what is happening in the field of paediatric rheumatology to give up their weekend to come and hear more at the congress. It is a welcome step forward for those living with paediatric rheumatic conditions to be able to attend and meet with the scientific, clinical and patient organisations leading in this field. It is together as a community of committed teams and individuals that we are taking steps to get closer to one day seeing a world where no child has to suffer from arthritis.
Kicking off our time at PReS Congress 2023 with our ENCA board meeting.
Meeting with colleagues from the ENCA board - L-R: Richard, Jeanne, Anita and Christophe.
University of Manchester dream team: Daniela Ghio, Rebecca Lee, Stevie Shoop-Worrall, Richard Beesley, Janet McDonagh
WORD day 2024 planning meeting: Dr Eve Smith, Richard Beesley, Sammy Ainsworth and Yona Egert (joined in remotely)
Libby Newsome offering a teacher's perspective to supporting students with JIA effectively.
Rebecca Beesley brings a unique perspective as both an adult with JIA, the parent of a child with JIA and through her involvement as a volunteer with Juvenile Arthritis Research.
Gabi Erbis presenting on the integrated approach to transition to adult care and normalising the visits to the psychosocial team. When there are issues to discuss, it makes it easier.
"It's hard being a young person. It's harder if you have JIA." Richard Beesley speaking in the mental health session.
Highlighting some of the excellent resources available via the mental health hub at www.jarproject.org/hope/wellbeing
"53% unaware if mental health services available in their child's hospital." Dr Polly Livermore.
Jasper Oprins and Tim Van Helmond speaking about fatigue.
"My son will never admit to being tired." Rashmi from the sJIA foundation sharing an example of why it is important for parents and caregivers to look out for signs of fatigue in younger children.
They have a right not to answer, but it's important to them for you to ask because then they can come back to you at a later date if they want to. Dr Janet McDonagh speaking on effective adolescent care in rheumatic conditions.
We were able to share some of our resources along with other leading patient organisations from around the globe.
Ronald van Houwelingen spoke in the Health Professional's session from a physiotherapist's perspective showcasing some of the tools used within his practice in the Netherlands.
Richard Beesley presenting the results from the work he has done with the University of Manchester on the incidence and prevalence of JIA differing by ethnic group.
The incredible sand art created live by sand artist Gert van der Vijver accompanying the story of Marlies Allewijn, an adult with JIA, speaking at the opening plenary.