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.
08.10.2025 15:36 — 👍 0 🔁 0 💬 0 📌 0
It's so frustrating, I ran out last year and ended up in a flare, because of the exact same problem albeit a different hospital. Replying so you know you are not alone in this crazy system.
08.10.2025 15:31 — 👍 2 🔁 0 💬 1 📌 0
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
01.08.2025 08:15 — 👍 0 🔁 0 💬 0 📌 0
Flyer for OPTIMISE workshop - developing recommendations for inclusive consent processes for trials - 8th July in Cardiff. Contact Dr Victoria Shepherd via email sheoherdvl1@cardiff.ac.uk
📢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:
21.05.2025 16:33 — 👍 4 🔁 4 💬 1 📌 0
We are recruiting.
Programme Co-ordinator.
To ensure the next Equal Power Equal Voice programme cycle is efficient and effective, and provides the best possible experience to mentees and mentors.
Closing date: 9am on Tuesday 22nd April.
18 hours a week. Remote working with office base at Spark, Cardiff.
The EPEV and DW logos are in the top right corner.
📢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...
11.04.2025 10:34 — 👍 1 🔁 5 💬 1 📌 1
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
30.03.2025 09:11 — 👍 2 🔁 1 💬 0 📌 0
This image depicts a yellow piece of paper with letters cut out of it, reading "join us". The paper is on a green background.
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
25.03.2025 16:33 — 👍 6 🔁 7 💬 0 📌 2
On a coffee shop wooden table there is an iPad with a blank page open, a teal blue diary with light blue pen on top and a latte with a heart in the milk.
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.
24.02.2025 11:04 — 👍 3 🔁 0 💬 1 📌 0
Purple graphic for Lleswyl 2025 event on February 21. Includes colorful bursts, the tagline "Making Space to Talk," and website link: www.daringtodream.wales.
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...
06.02.2025 14:44 — 👍 2 🔁 3 💬 0 📌 0
It's really tough to see the constant headlines on this topic.
You are not alone, my inbox is always open.
05.02.2025 13:24 — 👍 0 🔁 0 💬 0 📌 0
A Yorkshire terrier cross lies across a pile of blankets with their head resting on a pillow looking up at the camera.
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
05.02.2025 12:00 — 👍 7 🔁 1 💬 1 📌 0
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.
05.02.2025 09:19 — 👍 1 🔁 0 💬 1 📌 0
Today, fab line up! #PxP #PatientEngagement
05.02.2025 09:11 — 👍 3 🔁 0 💬 0 📌 0
Lleswyl 2025
Daring to Dream's free, fantastic, fun and for everyone wellbeing festival! Livestreamed from 7pm 21st February 2025 from You Tube
🌟 #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...
03.02.2025 08:41 — 👍 3 🔁 2 💬 0 📌 0
Kate says emotional skills a priority for healthier society
The Princess of Wales launches a project calling for more emphasis on social and emotional skills.
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...
02.02.2025 13:56 — 👍 2 🔁 2 💬 0 📌 0
Sorry you had to wait longer, that is a ridiculous excuse from the first consultant 😡 Glad to hear the second took you seriously!
01.02.2025 16:46 — 👍 1 🔁 0 💬 0 📌 0
A Yorkshire terrier cross is sat on a human bed looking at the camera, one ear up and one ear down. The duvet is white with blue geometric patterns. There are grey wardrobes in the distance.
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
31.01.2025 09:54 — 👍 11 🔁 0 💬 1 📌 0
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.
24.01.2025 09:50 — 👍 4 🔁 2 💬 0 📌 1
#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
26.01.2025 19:32 — 👍 3 🔁 2 💬 0 📌 1
A Yorkshire terrier cross is asleep, laying stretched out on a collection of blankets.
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
27.01.2025 15:30 — 👍 1 🔁 0 💬 0 📌 0
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.
26.01.2025 15:39 — 👍 10 🔁 3 💬 0 📌 0
Looking forward to #Lleswyl2025 next month. Tickets are FREE! #emotionalhealth #raisingawareness #chronicillness #maketimetotalk
26.01.2025 10:21 — 👍 3 🔁 0 💬 0 📌 0
Please can you share link to recording when it becomes available? Sadly I can't make it to Bristol that evening.
26.01.2025 02:27 — 👍 0 🔁 0 💬 0 📌 0
Healthcare in the digital age: A new era of inequality?
We are delighted to welcome Professor Trish Greenhalgh to give the eleventh annual Elizabeth Blackwell lecture, Bristol on 3 February 2025.
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
22.01.2025 14:39 — 👍 7 🔁 8 💬 0 📌 5
Hope you manage to get some decent sleep in 💤
26.01.2025 02:09 — 👍 1 🔁 0 💬 0 📌 0
You're not the only one #painsomnia
26.01.2025 01:37 — 👍 1 🔁 0 💬 1 📌 0
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 ❤️
26.01.2025 01:35 — 👍 1 🔁 0 💬 0 📌 0
Sounds really interesting, be good to hear about it if you have the time to share your thoughts on it afterwards.
26.01.2025 01:23 — 👍 1 🔁 0 💬 1 📌 0
Ramping Up Rights | Hurst Publishers
A vivid history of the 100-year battle for British disability rights, spotlighting enraging injustices and inspiring campaigns, past and present: this fight isn’t over.
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...
25.01.2025 18:45 — 👍 59 🔁 27 💬 4 📌 0
We design and deliver original health and social care research. Our rigorous experience surveys advance thinking and policy around #PersonCentredCare, with the end goal of improving #PatientExperience.
The microbial worlds in, on and around us • Health, disease, infection, hygiene, antibiotics, vaccines • Education, engagement, events, pop-up shops • Games, stories, info, activities, fun • English, Cymraeg, Gàidhlig, Gaeilge
www.superbugs.online
We are the Society for Obesity and Bariatric Anaesthesia. We promote excellence in the perioperative management of patients living with obesity.
www.sobauk.co.uk
2nd year PhD student at Cardiff University | Social care & neurodegeneration | Health & Care Research Wales-funded | Passionate about community, inclusion & lived experience |
GP and Health and Care Research Wales NIHR Doctoral Fellow
Division of Population Medicine in the School of Medicine at Cardiff University.
Our aim is to improve the health of individuals through research, innovation, and teaching focused on patient population and health systems affecting their care.
Principal Research Fellow, Centre for Trials Research, Cardiff University | Exploring inclusivity in trials, including research involving adults with impaired capacity to consent | PI of CONSULT https://www.capacityconsentresearch.com #InclusiveResearch
Co-production | NHS | Lived experience | Shared decision making | Mental health | Long term conditions | 🎧📚
I work for NICE, volunteer @shh-uk.bsky.social & relax with 📚 🎧 📺 in #Lancashire
Reposts are not necessarily endorsements. Views are my own.
Chief Executive: Disability Wales www.disabilitywales.org
Trustee: Wales Council for Voluntary Action
Member: Disability Rights Taskforce
Tea drinker, nature lover, big reader. Enjoys walking, cooking, music. Works in HE in Wales. Vol sector background. Interested in engagement, research, reflective practice & wellbeing. Views my own! 🏴 🏳️🌈 https://linktr.ee/mairerigby
Public Engagement trainer & consultant | #SciComm writer/presenter | @rspb.bsky.social & STFC advisor |🏳️🌈🏴
Geek: Star Trek | Doctor Who
I make nerdy rainbow pin badges that have raised £35k for homeless LGBTQ+ people
https://linktr.ee/Jamiebgall
📚 Author of Outrage: Why LGBTQ+ Equality Is Not Yet Won And What We Can Do About It
💜 Award-winning strategist & speaker
🏳️🌈 Autistic lesbian
🐶 Probably petting a dog
Evidence synthesis methodologist
We partner with Pharmaceutical companies, biotech companies, patient organisations, patient advocates, families and scientists to co-create solutions and deliver measurable results.
Patient and people involvement is integrated into everything we do
Public Involvement Manager @arcnwc
#Research #coproduction #health @LivUni
#doula #ADHD #ASD #inequality #cce #csa #dv #atheist #memoir All views personal
#Hospital, #MD, #Rheumatology, UK based.
A chemistry PhD & pharma bg, came to medicine late
Scrolling is a distraction from taking action. Pick some concrete way to help & get to it.
@twofishnocat.bsky.social for the likes/hobbies stuff
Professor of Patient and Public Involvement and Experiences of Care, Warwick Medical School. Co-producing knowledge. Global PPI! Views are my own.
Italian Greyhound in Melbourne, Australia. I love eating, sleeping and Liverpool FC. YNWA
1 of the Unpaid Director for Together All Are Able and one of the leads for self advocacy in Wirral a member of NCAG and life time member of LDE and a member of the Liverpool City Region disability Panel views are my own
Academic Development Consultant at University of Leeds
| Supporting researcher development | #ResearchCulture #ResponsibleResearch #OpenResearch
Research Culture Uncovered Podcast host