BSR Conference 2019

I am looking forward to attending the British Society for Rheumatology (BSR) Annual Conference, taking place between April 30th May 2nd, 2019, in Birmingham, attracting over 2000 delegates from across the country.

The programme can be viewed on the conference website – including the latest research in rheumatology across the life course, including paediatric and adolescent rheumatology. Below, I’ll touch on some of the sessions which I am involved in!

Social media in rheumatology

During lunch on Tuesday 30 April, I will be speaking in the Tweet Up: Social media in rheumatology session, where we will be providing an overview of the use of social media in rheumatology, including how to start on social media, its role in rheumatology, the role of social media for rheumatology research and broadening networks, and how social media influences interaction between patients and healthcare professionals.

We’ve also prepared a short ’10 Steps to Twitter’ guide to help those completely new to social media with getting started. Click here to download your own copy!

Patient and public involvement in rheumatology

In the afternoon on Tuesday 30 April, I’m excited to co-chair a session on patient and public involvement (PPI), alongside alongside Mwidimi Ndosi. Speakers include Adewale Adebajo, Elspeth Mathie and Savia de Souza. The aim of the session will be to enable delegates to learn how best to involve patients and the public in health research and service improvement. Delegates will be informed of the new National Standards for Public Involvement and how to give feedback to PPI contributors and why it is important. Delegates will also hear case studies of patient involvement in rheumatology research and service improvement.

Unfortunately, not everybody ‘gets’ why involving people living with health conditions, as well as their families, carers and advocates, in research and service improvement is no longer ‘just a nice thing to do‘ – it’s the right thing to do… and it has to happen! There’s also strong evidence behind why it’s the right thing to do as well. We do need to move beyond historical silos and hierarchies whereby professionals are seen as the providers of care, and patients, carers and families seen as the mere recipients of care. It’s not acceptable, nor relevant in 2019. By working together, healthcare professionals (including societies and other consortiums), patients, carers/family, voluntary organisations and other key stakeholders can pool their expertise and experience, to address common challenges that we all want to address. After all, aren’t we all working in rheumatology for the same reasons? At least, I hope so. Healthcare professionals commit their working lives to helping people with rheumatic and musculoskeletal diseases – but so do people like myself, and so many other parents, carers and patients who have experienced the pain that rheumatic and musculoskeletal diseases have on every aspect of life. So many people with lived experience dedicate their lives to making sure that others don’t go through the same heartache. These are the reasons why we must value, respect and use our shared knowledge to truly make a difference.

Self- and shared-management of juvenile idiopathic arthritis

On Wednesday 1st May, I’ll be showcasing my latest poster highlighting my experience with my PhD project, iSMART. Here’s a sneak peak – but if you’re attending, please come along during lunch on Wednesday to take a look and have a chat!

Meeting Fibromyalgia Action UK

For the first time in a few years, Fibromyalgia Action UK (a charity of which I am a trustee of), will be exhibiting at the BSR Annual Conference. Des Quinn, Chair of Trustees, and Reece Henderson, Communications Office, will also be in attendance. If you’re attending, please stop by and speak to the team!

Keep engaged on social media

Follow the conversation during the conference on Twitter using the hashtag #BSR19 – I’ll be posting plenty of photos and comments throughout the conference!

Written by simonrstones

Simon R. Stones BSc (Hons) is a multi-award winning patient advocate, consultant and researcher from Bolton in the United Kingdom. He was recognised in 2019 as one of the top 100 most influential people with disabilities in the UK, and was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with chronic conditions and invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood, as well as a carer for his mother. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, board member of the European Network for Children with Arthritis (ENCA) and President of the European Network of Fibromyalgia Associations (ENFA).

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