Please share the advert and support the study Thank you 😊

A NHS Trust was ordered to pay compensation to a patient over use of Oxevision (LIO) - what does this mean for other Trusts? What does the guidance from NHS England and CQC say about its use? Plus, read our letter to NHSE asking them to take action stopoxevision.com/2026/04/29/t...

Are you a UK-based autistic adult who has been assigned the "challenging behaviour" label? I am. If you are too, do consider participating in my research. Please email [email protected] to express interest or ask any questions. Supervisor: @drstevenkapp.bsky.social

How do autistic adults make sense of being assigned the "challenging behaviour" label? *RECRUITING PARTICIPANTS* I am autistic & I have been assigned the "challenging behaviour" label Supervisor: @drstevenkapp.bsky.social Email [email protected] to express interest/for more information

2 weeks ago, I was discharged from the mental health crisis team after things became unmanageable. Today, I co-facilitated a @coprocollective.bsky.social / National Suicide Prevention Alliance (@rcpsych.bsky.social) workshop: the first of many as it's a 7 year programme! A full circle moment.

One of my students, @chloeapter.bsky.social, is recruiting autistic adults in the UK who have (like her) been assigned the “challenging behaviour” label for interviews (emails, text chat, video, or London) on their experiences & how they make sense of the term, for her @uoppald.bsky.social MSc. 🙏

One of our students, @chloeapter.bsky.social, is recruiting autistic adults in the UK who have (also) been assigned the “challenging behaviour” label for interviews (emails, text chat, video, or London) on their experiences and how they make sense of the term, for her @uoppald.bsky.social MSc. 🙏

I can vouch for Chloe's thoughtful, sensitive approach to research, and understanding issues of identity and stigma. I'm interested to see the results of this work.

How do autistic adults make sense of being assigned the "challenging behaviour" label? *RECRUITING PARTICIPANTS* I am autistic & I have been assigned the "challenging behaviour" label Supervisor: @drstevenkapp.bsky.social Email [email protected] to express interest/for more information

My mental health trust's website claims that DIALOG+ is a way of "co-producing" a care plan. Well, I guess this is it: the ultimate bastardisation of co-production. As someone who has filled it in more times than I care to remember, nothing about it is co-produced.

People with mental illness are endlessly frustrated by our experiences being distorted into generic, tickbox, template responses, so much so that they bear no resemblance to what we are actually going through. That's it, that's the post.

Last week, a mental health professional asked if I receive benefits & when I said "no", she asked me, "how do you have money then?". I told her that I have a job & she looked baffled. Some people with mental illness can work, others cannot. Let's not judge people for either or make assumptions.

It's upsetting when I think about what having trichotillomania (pulling my own hair out) has cost me financially. I have had to purchase countless wigs, hair toppers, sew-in extension systems, etc. which are usually extortionate & do not last for long. I didn't choose to have this condition.

On April 30 at 4 pm (UK time) @drstevenkapp.bsky.social will present a free webinar on his research on neurodiversity with implications for support, @uopcidd.bsky.social, and our online MSc course. Sign up to register and receive a recording even if you cannot attend. www.port.ac.uk/news-events-...

Our new paper on autism and hypermobility is out! Results indicate autistic people may experience more pronounced symptoms of hypermobility and more co-occurring health conditions. Full paper, open access, at the link 🔽 link.springer.com/article/10.1...

@luckyerica3.bsky.social Hi, hope you're surviving & doing as okay as possible! I wanted to get in touch with you about potentially signposting a specific group of people to @notthevoiduk.bsky.social but saw that you can't see DMs on here - what is the best way for me to contact you with more info?

How to create news for (and with) people with learning disabilities? A new project by William Kremer looks at a structural blind spot in journalism and an opportunity for public service media to be more inclusive, relevant and useful Click to read reutersinstitute.politics.ox.ac.uk/creating-new...

Amazing!

It was an absolute joy to co-produce (& do the voiceover for!) an animation for children & young people who are autistic &/or have a learning disability about the NHS England accessible ear checks programme that I worked on for a few years. Big thanks to the Seashell Trust & NHS Creative, too.

Great to see our first paper from this study out now! Hopefully more coming on this… “A Co‐production Evaluation Tool Informed by Co‐production Workshops for Use in Evidence Synthesis Contexts” onlinelibrary.wiley.com/doi/10.1002/...

Next week, I'm starting NHS therapy for Avoidant/Restrictive Food Intake Disorder (ARFID). The Counselling Psychologist who I'll be seen by has been proactive in understanding how she can reduce the likelihood of replicating iatrogenic harm I've experienced - how refreshing!

It's been a joy to deliver co-production & safeguarding training to PhD Mental Health Science students over the past few years. The latest (last!) cohort are looking for folks with relevant lived/living experience to join their thesis committees: www.coproductioncollective.co.uk/news/our-fin...

I've been working with Vocal Collective CIC to make sure that people with lived/living experience of suicidality & self-harm/self-injury get a genuine say in what research in this area is funded by the @medresfdn.bsky.social. Do check it out! www.vocalcollective.org.uk/new-project

It's #crohnsandcolitisawarenessweek. I have an ulcerative colitis diagnosis. I go to the hospital every 4 weeks for an infusion, but I have yet to find a treatment that has put my disease into remission. We need greater awareness of inflammatory bowel disease & its impact.

EXTENDED DEADLINE - 8th DECEMBER Apologies for being quieter online than planned over the past few days - I’m a full-time carer, and things have been particularly intensive recently. I’ve been incredibly moved by the support for the study and by the surge of last-minute responses. 1/2

My individual funding request for specialist therapy was rejected. As a commissioner myself, I am privileged to have the knowledge to navigate "the system". I will fight to get specialist therapy to set the precedent for other patients, even if it progresses to a legal battle.

We are recruiting a fully-funded 3.5yr PhD student to examine the potential genetic relationships between autism and hypermobility. Full details of the project and how to apply here ⬇️ usher.ed.ac.uk/precision-me... Deadline Jan 12th! Within the Precision Medicine DTC at Edinburgh.

I've had trichotillomania (pulling my own hair out) since I was 15. Today, I shaved my head for the 6th time in 7.5 years due to it. I've accepted that it's quite possible that I'll always have trichotillomania. I'm genuinely at the point of believing that "it's just hair".

Hi, I'm v new to bsky. I'm a PhD student focusing on harm in UK mental health services, & I would like to hear about your experiences of harm in services between 2010-2025. (Mental health services includes NHS, charities, companies, private therapists & other orgs) 1/7 tinyurl.com/yt2ydvxx

💡Job Opportunity!💡 We're looking for a Research Fellow to join the #DiscoveringLiveability team on a full-time and fixed-term basis for 30 months 🔎 For more information, follow the link below:

Hi! We are a part-time (can work alongside) online ("live" *options*; costs the same in/outside the UK, can study from everywhere) MSc course on learning/intellectual disability, autism, and neurodiversity. Students have own tutor. We are recruiting for this term: www.port.ac.uk/study/course...

I shared some thoughts over on LinkedIn for today's World Patient Safety Day 2025. www.linkedin.com/posts/chloea...

New blog post: Words that make me go hmmm: Professional #RewritingSocialCare rewritingsocialcare.blog/professional/

Professor Sara Ryan's new book 'Critical Health and Learning Disabilities: An Exploration of Erasure and Social Murder' is out today. There's a Plain English summary on our website: learningmet.mmu.ac.uk/resources/

This sheds light on a childhood experience I have had to make sense of as a later dx autistic adult: Aged ~5, I was told I was lip-reading so had a hearing test (my hearing was fine). I couldn't understand this "accusation" of lip-reading as I was just processing the only way I knew how.

As someone with a dissociative identity disorder diagnosis, I used to consume a lot of media related to this condition. In recent years, I haven't been able to. It's just too painful to bear witness to the consequences of trauma that is often perpetrated by other people. It hurts.

TW: suicide When I was assessed for PIP in 2022, I was asked why I hadn't "successfully" managed to kill myself. I received zero points. I was too distressed to go to mandatory reconsideration or tribunal. The assessment (& report) is utterly dehumanising. #TakingThePIP

I had to let occupational health send a copy of my report to my line manager. This is all well & good but it contained *a little too much* information for my liking, including specifying how many times a day I go to the loo. Oh, the indignity of chronic illness & disability.

I'm all for amplifying the importance of co-production. But does having a "Co-Production Week" encourage tokenistic attempts at it which inevitably fall short? Genuine co-production shouldn't just happen during a designated week, it should happen all year round.

Thanks for positive feedback, @chloeapter.bsky.social! The MSc in Psychology and Learning Disability is free, online and part-time, so you can complete it alongside work etc. anywhere. "Live" sessions are optional, in the UK early evening. Same cost in/outside the UK. www.port.ac.uk/study/course...

Am I proud of being autistic? Yes. Was I always proud of being autistic? No. Being proud of being autistic does not mean existing in an allistic world is easy, it just means that I am no longer ashamed of the associated struggles. #AutisticPrideDay

As someone with ARFID, the most stressful part of going from living alone to living with family is what I eat now being constantly scrutinised (& inevitably criticised) by others. I just want to be able to eat what I am able to eat in peace.

Medical professional: "Is your autism well controlled?". Me: ...

I have officially finished the first year of my MSc despite chronic illness flare-ups around *practically every deadline*. For anyone interested in learning disability, autism, & neurodivergence, @uoppald.bsky.social is utterly wonderful with the most supportive tutors - do check the course out!

My #dissociated friends in the UK. Please consider getting involved with this research at @mrccbu.bsky.social !! ♿ @didwewrite.bsky.social @chloeapter.bsky.social

It feels unjust that my healthcare has to dictate where I live. I would love to live back in Brighton again. But healthcare access & service quality was so abysmal & neglectful there that it just isn't feasible. My healthcare in London has been wonderful, fast, & compassionate.

Tomorrow will be medical appointment number 6 in just 7 days. The appointment fatigue that comes with having chronic physical & mental illness should not be underestimated - it is truly exhausting. I feel drained from self-advocating. I'm triggered from procedures. I can't sleep due to pain.

I have just been diagnosed with ARFID: Avoidant/Restrictive Food Intake Disorder. It is endlessly validating to be told I have a legitimate eating disorder rather than just being *wilfully fussy*. Now, a long wait for access to therapy & dietetics. But I am grateful for it.

Brilliant to see this finally out. Exploring conditions for co-production in all its complexity and evaluation in the context of co-production! Lots of amazing partners and 8 project teams involved!

We are excited to launch the Measuring Success in Co-Production: Learning by Doing programme's outputs. Read the programme’s Reports and the Reflective Learning Resource on our website: www.coproductioncollective.co.uk/news/launchi... #coproduction #measuringsucces