Joel Nelson

The Patient Voice

February 2024

🎙️The Patient Voice Newsletter: What a Reception!

Hi folks,

Wow! What a response we had to the first newsletter that unbelievably went out a month ago. In typical 'Joel' style, I was worried that it was a naff idea and nobody would be interested in a summary of what we are working on, but how wrong I was!

Thank you to everyone who sent messages, emails, kind words, and suggestions for what we should do with this. I was blown away by your positivity, words of encouragement and suggestions. Between the talk shows, podcasts, speaking stuff, streaming, community meetups and projects, I struggle to keep everyone (and thing, in a world of 101 social media platforms!) updated - so this, perhaps selfishly, helps me keep you all informed as much as it (hopefully) helps you one day.

Settle in, we have a LOT of updates to give you...

Latest Content

Rare Disease Day 2024

Thursday, 29th February this year, is Rare Disease Day, and we recently had a special conversation with a small UK Charity, RACC UK, in preparation for this. Check it out below.

Watch on our YouTube Channel or Listen here (or wherever you get your podcasts)

People-Centered Healthcare: Treating the Person, as well as the Disease

We were incredibly fortunate to be joined by Ass. Prof. Dr. Rachel Sommer, Head of People-Centered Health Care Research and Psychodermatology at University Medical Center Hamburg-Eppendorf, and leading Dermatologist Prof. Dr. Matthias Augustin, Director of the Institute for Health Services Research in Dermatology and Nursing of the same institution who discuss the vitally important work they both do in people-centered healthcare.

Watch here →

Featured Episode

Painting my Antiphospholipid Syndrome Story with Tracy Jallow

Sticking with the Rare Disease Day theme, we look back to a hugely popular interview with Tracy Jallow as she discusses living with Antiphospholipid Syndrome and how she uses art to cope.

Listen here → (or wherever you get your podcasts)

Advocacy Headlines

Anglia Ruskin University's Vice Chancellor's Outstanding Alumni Awards - Shortlisted for Alumni Public Service Award

Quite remarkable, and thanks to our Facebook community's unexpected nominations, I have been shortlisted for the Alumni Public Service Award category at my old university's Outstanding Alumni Awards. I may have cried when I was informed! 🙈

My wife and I will attend the awards ceremony in Chelmsford in April, but I think this nomination says more about our incredible Facebook following than anything I have done, given we won the WEGO Award in 2021 in the category of Best in Show: Facebook. I share so much more there than I could ever get away with on other platforms, and I have so many people from around the world I now consider friends. You can join them here: https://www.facebook.com/joelvsarthritis/

Peer Support Minecraft Server Reaches Three Months Playtime

The latest version of our free-to-play Minecraft server, which I (painfully) learned to build from scratch to provide gamers living with long-term health conditions a place of distraction and community with others who understand, just went past the three-month total playtime mark!

Players have spent, on average, two and a half days forgetting about the realities of their IRL in our little world of virtual escapism!

These numbers and the conversations we see happen in our voice chat on Discord around this activity make everything I do worthwhile. You can learn more about our Minecraft project and play with us here.

The Joel Nelson Podcast Makes the Top 10 UK Disease Podcast List

I wanted to say a BIG thank you to anyone who has supported/listened to/been a guest on our little podcast, which now finds itself in the Top 10 Best UK Disease Podcasts on FeedSpot here ahead of some huge productions with far greater social media followings and deeper pockets than I. 🥹💜

We have some really exciting things planned for 2024, including invitations to several European conferences to record live from the event floor, so stay tuned for more details on that soon and get in touch if you'd like to be a guest at these.

Incredibly, we have been listened to in 75 countries over the last two years, so we plan to take this show on the road beyond Europe, as we did in Singapore last year. If you can help with that or would like us to record and/or interview at your event, please do get in touch. The same goes for sponsorship, which I have never asked for, but I am now starting to get bold enough to suggest the idea. 😅

Another Successful Community Meetup 💜

This week saw our 3rd in-person community meetup, arranged rather impromptu after I mentioned on a Twitch stream that my wife and I were going to a gig in Norwich, which then saw several regular viewers immediately buy tickets to join us (lesson learned! 😂). We enjoyed drinks, a meal, good conversation and as much dancing as our joints could handle - without the fear of explaining if we needed a break, to sit down, or leave early - the exact reasons we started a peer support community!

Our next meetups are planned for Brighton, UK, in May and Stockholm, Sweden, in June. If you want to know more about these or get involved, join our Discord.

Upcoming Events

3rd March (YouTube Livestream)

Being a Disabled Nurse in the UK with Chloë Hammond

Join us for an inspiring conversation with Chloë Hammond, a trailblazing clinical nurse who is breaking down barriers in the healthcare industry and her amazing assistance dog, Ocho.

Despite being a wheelchair user and an assistance dog owner after being diagnosed with a rare disease at the age of 15, Chloë thrives in her role as one of the few disabled nurses in the UK.

Watch and Set a Reminder Here →

24th March (YouTube Livestream)

Patient and Public Involvement in Research and the QUICK and iPREPARE Studies

We're incredibly excited to be joined by Martin Stevens, Research Fellow at the Aberdeen Centre for Arthritis and Musculoskeletal Health, University of Aberdeen.

We will discuss his focus on patient and public involvement in research, why this is important, and what he is currently working on to improve patient outcomes.

Watch and Set a Reminder Here →

Other Events

10th March - Professor Yeliz Prior, Professor of Clinical Rehabilitation at the University of Salford (The Chronic Pain Club Talk Show - YouTube Livestream)
18th March - WORD Day 8hr Gaming Livestream in aid of CCAA. For more info and to donate: https://www.justgiving.com/page/joel-ccaa. (Twitch Livestream)
20th March - Exhibiting at Naidex with Enabled2Parent (In-person, Stand F114 - come and say hi!)
7th April - Fez Awan, Chair of RPLAN and Patient Advocate (The Chronic Pain Club Talk Show - YouTube Livestream)
21st April - Craig Young, Psoriatic Arthritis Advocate (The Chronic Pain Club Talk Show - YouTube Livestream)

Resources & Get Involved

In future newsletters, we would like to include two regular features:

Resources - help us signpost to the best resources, reliable information, and latest news 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

Be A Guest - if you have a lived experience story to tell, are a medical professional, represent a patient organisation or would like to share your work regarding patient involvement, co-production, or improved patient outcomes on our talk show/podcast, get in touch.

Support Our Work - want to go even further? We have set up the following ways in which you can support us at the request of the community:

Become a YouTube Channel Member
Become a Twitch Subscriber
Donate/Tip
Shop The Pain Company Clothing Store
Podcast or Livestream Sponsorship - email me

But please know that simply participating in this community and viewing the livestreams, etc., is more than enough.

And finally...

The last month has been surreal, what with award nominations, numerous filming projects (many of which I never get to share with you as they are for 'internal use' only and funded by industry), invitations to conferences, and such things. Still, two things really stand out to me and remind me that we are fulfilling a genuine need.

Firstly, seeing all the people supporting each other and socialising on both the Discord and our Live stream chats, people who are now close friends despite the distance, turning up to talk to others in the audience as much as listen to the topic we are discussing. It's no longer about what I am doing or who I am talking to, but now the community that is there and the support and reassurance they offer - and that is a magical place that, at times, I wasn't sure if we ever would arrive at.

Secondly, the wave of medical professionals and researchers coming to us(!) to ask to be on the shows. We fought so long and hard to get representation from all sides of the conversation, the problem, and the solution. Yes, we started by sharing lived experiences, which will always be our primary goal. Still, it was important to me to try and act as a conduit between all parties, to bring people together to help them understand that we all want the same thing. That effort wasted pushing against each other is effort not being spent on finding better patient outcomes. To have patients, dermatologists, researchers, psychologists, and soon, pain management specialists and rheumatologists all in the same place, sharing the challenges, realities, pain points, and what they are doing to try and improve our tomorrow feels really special. And with that, I will leave you for this edition.

If you enjoyed this newsletter, forward it to someone else and ask them to sign up here: https://joelnelson.ck.page/newsletter

Your story matters,
Joel.x