🎙️The Patient Voice Newsletter: Hello to all our early adopters!

Hi folks,

Welcome to the first-ever Patient Voice newsletter, a new resource from me that aims to bring all our advocacy and awareness efforts and updates into one place to reward and recognise those who support our work the most! I can't wait to see where this takes us and hope it can be another medium to build a peer support community around.

Those receiving this are either super keen and have responded to my social media posts about this virtually instantly (amazing! 💜) or have been brought over from our previous (and much-neglected) podcast mailing list from a few years back. Please know that if this is the case and this no longer appeals to you, you can find the unsubscribe button at the bottom of this email. 🙂

Some of you know that this wild journey of mine started with a sadly now-retired Blog. Although I am fortunate enough to write for Healthline, Health Union and medical journals these days, I miss the community and conversation we had around my 2am ramblings. So, I guess I am trying to replicate that with this new newsletter.

For now, it's about my work and updates, but in time, I would love for it to be a newsletter for an entire community. So if you have an idea or want to get involved, see a Discord server or forum, etc., off the back of this - anything, get in touch. Nothing is off the table!

Latest Content

Autoimmune Disease in Families This month saw the release of our special three-part podcast mini-series, spotlighting three family members living with three different autoimmune diseases and their impact. Watch on our YouTube Channel or Listen here (or wherever you get your podcasts) ​

Featured Video The Mental Health Impact of Living with a Chronic Skin Condition Watch the brilliant Dr Eleanor Chatburn, Clinical Psychologist, Lecturer, and Ambassador for The British Skin Foundation, join me on World Psoriasis Day to talk about the mental health impact of living with skin conditions ​Watch here →​

Featured Episode Living with Relapsing-Remitting Multiple Sclerosis The wonderfully spoken Kevin Gibbons shares their relapsing-remitting multiple sclerosis journey. ​Listen here → (or wherever you get your podcasts)

Advocacy Headlines

​ Filming wraps up on WebMD Film about my life and gaming Over the last few months, I've been filming for an exciting project for WebMD - it will talk about growing up with Juvenile Idiopathic Arthritis (JIA), advocacy and how I use gaming as a way of managing my disease. A considerable amount of resources have been put into this, and it has been quite an experience. I can't wait to show you the final result in March. The 'Joel Nelson Podcast' heads to Europe! Quite unbelievably, I have been invited to take the podcast out on the road this summer, starting at HLTH Europe, where we will arrive in Amsterdam to interview patients and healthcare leaders from our very own booth! This is just the first leg of a conference tour - keep an eye on my socials for more. Are you going to Naidex? Naidex, the UK's leading event dedicated to empowering and supporting disabled individuals, takes place in March at the NEC, Birmingham. This year, I will be attending for the first time as part of my role as Trustee and Treasurer for Enabled2Parent - a vital small charity supporting parents with disabilities and additional needs. If you are attending, get in touch so we can meet in person.

Upcoming Events

4th February (livestream) In Conversation with RACC-UK! Tune in for an informative and powerful conversation about the hidden struggles of rare autoinflammatory conditions in the UK. ​Watch and Set a Reminder Here →​

18th February (livestream) From Patient to Practitioner: An Occupational Therapist's Journey with Type 1 Diabetes and Lupus Join us for an inspiring conversation with Melissa Chieza, an occupational therapist and mental health practitioner who has been living with Type 1 Diabetes and Lupus since she was a child. ​Watch and Set a Reminder Here →​

Resources & Get Involved I feel grossly uncomfortable with the amount of 'me' in this first edition of The Patient Voice Newsletter; that's why we need your help! In future newsletters, we want to include two regular features: Resources - help us signpost to the best resources, reliable information, and latest news for all things related to patient involvement and lived experience. Get Involved - help us promote important studies, patient involvement opportunities or projects looking for lived experience input - maybe even write a guest post for this newsletter! Email your suggestions and submissions to: joel@joelnelson.uk​

And finally...

That brings our first-ever Patient Voice Newsletter to a close. I hope there weren't too many typos or technical glitches for our first attempt! 🙈 Thank you all for being the first to read it, and please tell your friends to sign up here.

Please let me have your feedback. What works, what doesn't, what would you like to see more of, or what should I be abreast of in my advocacy? I may not be able to reply to every social media comment and email, but I read every single one, and your shared experiences fuel my advocacy message.

Your story matters,
​Joel.

Joel Nelson Patient Advocate ​​​​​​

Joel vs Arthritis LTD, 4a Church Street, Harleston, Norfolk IP20 9BB
​Unsubscribe · Preferences​