Adrenal crisis 10 days ago, I was worried I would not be able to be at the #CUMEDICPPIE showcase today. Looking forward to a day focused on public involvement and engagement. Do say hello if you see me, I'll be on the Evidence Centre stand.

Having a rough time with my health recently. Infection-virus-flare-another infection. Today my "bad" eye has a weird sore patch developing, another "thing" to sort out. It's exhausting! Very grateful to Nurse Dog Luna keeping me company while I rest up.

It was refreshing to meet with an anaesthetist yesterday at pre-op clinic who introduced me to the @sobauk.co.uk guidelines. I'd not come across them until now. Thank you for making this difficult time that little bit easier 🙏 #SharedDecisionMaking #PatientVoice #Thankyou

📢Developing recommendations for inclusive consent processes for trials OPTIMISE is developing recommendations for designing consent processes for trials involving people with communication &/or capacity needs. We are inviting researchers to a workshop to agree key domains to include. Info below:

📢We are recruiting! We're looking for a disabled person to join us as Programme Co-ordinator. This is an exciting opportunity to work alongside partner organisations to deliver the Equal Power Equal Voice programme. Closing date: 9am on 22 April. www.disabilitywales.org/vacancy-prog...

A reminder on one of the hardest days of the year for me. It is never ok to ask someone when they are starting a family, never. Thinking of everyone struggling today. #ChildlessNotByChoice

Co-Production Collective is looking for someone to manage our projects with partners. If you are interested in co-production in research, policy and service development, we would like to hear from you! Find out more about the role and how to apply in our blog: shorturl.at/AAPln #coproduction

Inspired by a talk given by @drmattmorgan.bsky.social a few weeks ago, I'm finally off the mark with my writing plan. Wishing you all a great week ahead.

Have you heard of #Lleswyl? It’s the only inclusive virtual festival organised by @daringtodream.bsky.social. Many miss out on events and festivals due to illness, and that’s exactly why Lleswyl exists. Get your free tickets now! www.eventbrite.co.uk/e/lleswyl-20...

It's really tough to see the constant headlines on this topic. You are not alone, my inbox is always open.

Grateful to have Nurse Dog Luna keeping me company in my little home office this morning 🐾 She has no idea how important she is to my emotional health, join Luna and I at #Lleswyl2025 later this month to hear more on this. @daringtodream.bsky.social #DogSky #RescueDog

I struggled to know who I was at the end of last year. With a few tweaks and working hard to hone down on what is really important to me, I am now much happier and more motivated than ever. Sometimes you have to take a step back to realise what it is you want.

Today, fab line up! #PxP #PatientEngagement

🌟 #Lleswyl2025 🎉 The only #inclusive virtual festival by @daringtodream.bsky.social, shining a light on adults with illness in #Wales. Many miss out on events & festivals due to illness! Lleswyl comes to them! Get your FREE tickets now! 👉 Register on Eventbrite! www.eventbrite.co.uk/e/lleswyl-20...

Well said @hrhcatherinepow.bsky.social - this is exactly what we are saying @daringtodream.bsky.social. Emotional health and skills are being overlooked - we must get better at talking about feelings constructively #emotionalhealth and #emotionalskills matter. www.bbc.co.uk/news/article...

#Lleswyl2025 - how about booking your tickets for a #WatchParty at #WalesMillenniumCentre? Book to go along with a few friends? have a great night! www.wmc.org.uk/en/whats-on/...

Happy Friday! I'm having a "rest day". I have to be really careful that I don't burn out. It's so tempting to carry on, I'm motivated, my brain is willing but my body needs to rest. If I don't listen to my body then I'll be out of action for weeks. Nurse dog Luna with me, as always. #mecfs #dogsky

Good Morning! Have you heard of #Lleswyl2025? Lleswyl means 'Wellbeing Festival' in Welsh. We provide a great, free fun evening on 21 February 2025 from 7pm! Get your FREE tickets from www.eventbrite.co.uk/e/lleswyl-20... Join us for a great night! YouTube channel: Lleswyl 2025.

#Lleswyl2025 #inclusive #talented #diverse #LineUp. FREE tickets www.eventbrite.co.uk/e/lleswyl-20... In Wales 1.2 million live with at least one #longstanding #illness. #Lleswyl #festival brings #joyousevening to their home @dawnbowden.bsky.social @dalilatm.bsky.social @libbyhumphris.bsky.social

Nurse Dog Luna is never far from where I am, today she is snoozing under my desk. This afternoon I've been busy working on a few upcoming presentations. I was dreading another week of January, but an inspiring talk from @drmattmorgan.bsky.social has started this week off perfectly 💪 #PatientVoice

Lotta new folks here so I guess it's a good time to plug this webinar! If you want to hear me talk about a bunch of light-hearted shit like temporal accessibility and hermeneutical (in)justice in patient engagement, sign up at the link.

Looking forward to #Lleswyl2025 next month. Tickets are FREE! #emotionalhealth #raisingawareness #chronicillness #maketimetotalk

Digital tools should make healthcare more efficient and accessible, but do they make everyone’s lives easier? Join @trishgreenhalgh.bsky.social for 'Healthcare in the digital age: A new era of inequality?' When: 3 Feb 2025, 18:30-20:00 Where: City Hall, Bristol Free tickets: tinyurl.com/2pyn8w4b

Thank you for writing this Lucy, it sums up perfectly how important the online community is when you are disabled. I'm so grateful to have social media bring us all together ❤️

Want to find out more about the history of disability activism in the UK and what we need to do now? Well I have a book for that! Ramping Up Rights is out July 3rd with @hurstpublishers.bsky.social Preorder here: www.hurstpublishers.com/book/ramping...

Nurse Dog Luna and I are signing off for the next two weeks. Wishing you all a merry Christmas 🎄 See you in 2025!

In the world of #research in #healthcare - #PatientPartners need to support each other. #PatientEngagement is hard enough - so let’s band together and support each others endeavours #kindness goes a long way

Hey research teams/orgs that engage #PatientPartners! Please build in a very large chunk of time at your 1st team or other type of mtg for intros. This is really key to starting to build your relationship and trust. #PatientEngagement #ConsumerInvolvement #PPI /1

I've spent nearly a quarter of the year at UHW. Here's hoping 2025 is kinder to me 🙏🏻 The rest of my #FullTimePatient statistics can be found on my Instagram. It was an interesting project collating all the data to create a health themed #2024wrapped

#ARCadvent day 9️⃣: @neuro-observant.bsky.social is a long-term public contributor at @arc-west.bsky.social. She’s the brains behind a wildly successful diagram outlining how patient and public involvement (#PPI) can be woven into every stage of the research cycle. arc-w.nihr.ac.uk/news/my-ppi-...

Happy to be back at my desk this morning. For a little while I wasn't sure I'd be back this quickly (or at all). What should my reward be for pacing myself this week? 🤔

You don't realize how poorly you've been until you start to feel human again. Very grateful to be feeling more myself again and looking forward to getting back to some normality - whatever that is. First though, an afternoon planning out the cushions for our nearly finished campervan build 👌🏻

When I asked for the weather to be kind, this was not the plan 🤦🏻‍♀️

Thank you @familiarstudy.bsky.social 😊 it's been a learning curve for us both, it feels very strange to be coming to the end of the project after so long. You've got this 🫶🏻🦜

Hoping the weather eases so we can collect Nurse Dog Luna today, my awesome in-laws have kindly looked after her while I've been in hospital the last couple of weeks. Looking forward to her being my little shadow again, the house is very quiet without her here.

Disappointed to miss the PRIME Centre Wales annual meeting today. My body decided I need some more lived experience, this time ticking off the neurology department at UHW. #morelivedexperience #ireallydontneedanymore #patientexperience

Great to see @pxphub.bsky.social here, I was happy to be your first follower yesterday ☺️

📣 For those new or not quite sure about patient engagement in research, this free, online How-To Guide to PE in research was developed by patient partners for anyone on a research team (supported by the CIHR Institute of Musculoskeletal Health and Arthritis). cihr-irsc.gc.ca/e/27297.html... /1

On International Day of Persons with Disability I am rather frustrated to be poorly yet again. Very grateful to have been looked after by a fab team at UHW over the last week. Seeing Neurology consultant tomorrow, hopefully a plan of how to get better 🤞🏻

Does anyone have any coping strategies for a very claustrophobic person needing an urgent MRI? Mindfulness gets me through nearly everything but not an MRI #Terrified

A great piece on improving shared decision making. #MedSky

"..grief remains because we care so deeply about ourselves, our health, and the future we imagined." ^ This! I'm very grateful to have found a way to turn that grief into something that can help not only me but many others too. A brilliant article by Linxi Mytkolli!

Hi everyone, aware I am late to the bluesky party. I am an honorary research associate @cardiffuni.bsky.social with a keen interest in shared decision making and women's health. Battling multiple chronic health issues. I love to crochet & have a rescue dog called Luna a.k.a Nurse Dog.