We caught up with Peter Boyd, our Services Support Officer in Arthritis Ireland and recently elected Chair of the EULAR PARE Committee, the network of national organisations of People with Arthritis/Rheumatism across Europe. The goal of PARE is to ensure that the voice of people with rheumatic and musculoskeletal diseases (RMDs) is heard and has influence among decision makers within Europe, and to create powerful alliances that will make a difference to their lives. 

Peter, who himself lives with rheumatoid arthritis (RA) and fibromyalgia, was previously the Chair-Elect of PARE. He will now serve as Chair for two years (2023-2025), focusing on employment for people with RMDs and young people living with the condition. While chairing the PARE Committee, he will also oversee its various activities throughout the year.  

We asked Peter to share a little bit about his experience at the EULAR congress 2023 in Milan, some updated news on his new voluntary role, as well as some background to the clinic referral programme which is being rolled out nationwide.

Peter, can you please introduce yourself and your role in Arthritis Ireland? 

I’m the Services Support Officer with Arthritis Ireland. My main role is to manage our national helpline and online support services. Our national helpline is now a fully cloud-based system with volunteers all over the country. 

Can you share a little about of background on the Clinic Referral Program, the new initiative that you’re leading?   

The Clinic Referral Programme came from my own experience of being diagnosed with arthritis and talking to the newly diagnosed via our helpline service. It is very common for people to feel lost, upset and anxious about the future. 

Our clinic referral programme provides a direct route from the clinic making the diagnosis, to the support of Arthritis Ireland and the support services we have to offer. Rather than handing our contact details to people as they are diagnosed, with their consent, their details are sent directly to Arthritis Ireland, and it is our responsibility to contact them.  

While the rheumatology clinics focus on diagnosis, treatment and medication, we can discuss lifestyle issues, employment, relationships and any concerns they may have. Our initial focus has been on the newly diagnosed, however anyone living with arthritis who is need of support can be referred to Arthritis Ireland. 

How is the rollout going?  

After a successful pilot between October 2021 and January 2022, the programme was initially rolled out to public rheumatology clinics around the country in 2022. Across summer and autumn 2023, I will be visiting the public clinics in person, as well as private clinics, to promote this innovative new service. 

It’s a fantastic opportunity to meet multiple members of the rheumatology teams in the various clinics. We can take referrals from any members of the team – CNS, ANP, specialist physiotherapists and/or rheumatologists – so it is important that everyone understands how the programme works and their role in it.  

We have public clinics feeding patients into our referral programme and reducing the isolation and loss experienced by those living with a potentially devastating chronic condition. 

 You were also at EULAR Congress recently. For anyone who might not know, can you share more? 

EULAR (European Alliance of Associations for Rheumatology) represents the people with arthritis (PARE), health professionals in rheumatology (HPR) and scientific societies of rheumatology in Europe. Congress gathers all pillars together to share clinical innovations and basic science, with sessions and insights from the PARE, HPR and industry partners.  

I have been involved as a volunteer with PARE for many years. It is an honour to represent the thousands of people living with all types of arthritis across Ireland and Europe and I’m delighted to be officially taking up the reins as Chair. While it’s a voluntary position, it does afford me access to many key stakeholders across Europe to further the cause of the millions of people living with RMDs. I will continue to represent Irish patients and Arthritis Ireland at the highest levels. 

That is fantastic Peter! And, from this year’s conference, what would you say were the key insights or learnings?  

I attended all of the PARE sessions at Congress and was able to learn from all the other national organisations that shared their best practice programmes and projects. All these ideas can then be evaluated to see what will be helpful and feasible in an Irish context.  

A study from the Netherlands on sexual health and family planning was particularly interesting. It considered what drugs were safe to take during pregnancy and the situation for men with RMDs wishing to start a family. 

The prevalence of anxiety and depression for those living with arthritis was also startling. Regardless of previous disposition to difficult emotions, an arthritis diagnosis meant patients were one and a half times more likely to develop anxiety and/or depression. 

Watch Peter’s vison for PARE here: 

https://youtu.be/TY8fyKZRXOc 

Thanks so much for sharing Peter, we’re excited to see really excited to the Clinic Referral Program evolve and where your new position in Eular takes you! 

To Contact Peter: 01 647 0202; [email protected]