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

We are excited to launch our Impact Report 2024, showcasing our work over the last year and the impact that it has had. Find out more about and read the Impact Report 2024 in our blog: www.coproductioncollective.co.uk/news/launchi... #coproduction #livedexperience #impact

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

New @autisminadulthood.bsky.social paper: social and emotional impact of puberty and adolescence on autistic people assigned female at birth. Beth Fearon's @uoppald.bsky.social MSc thesis supervised by @drstevenkapp.bsky.social with @dramypearson.bsky.social. Free: www.liebertpub.com/doi/10.1089/...

📣After almost 3 years with wonderful colleagues at @coprocollective.bsky.social, I’m looking for opportunities for a different challenge – ‘change-making’ in a new role – from May 1st. (few things to finish off first!) More about me🧵👇 #coproduction #involvement #youngpeople #research #facilitation

Last chance to join the Health Protection Research Unit and help shape the evaluation of patient/public involvement in Blood Borne and Sexually Transmitted Infections research! You can find out more information and how to apply on our website: www.coproductioncollective.co.uk/get-involved...

During my undergraduate degree, my lecturers were so unwilling to support me that Student Support got the Legal Team to tell them they were breaching the Equality Act (to no avail). I was expecting similar at my postgraduate institution, but it could not be more different!

It's all well & good for services to do finite co-production projects e.g. designing what a new patient lounge looks like. But what services all too often fail to do is STRATEGIC co-production. As a patient, I want to shape long-term strategy. There's a difference.

I don't like the expression "diagnosed with autism". I was diagnosed as being autistic. Autism is not something I am "with", it is something that I "am". Autism is a meaningless concept if divorced from autistic people. We need support for autistic people, not "for autism".

Our student Sarah Harwood is recruiting autistic fathers of autistic child(ren) living anywhere for a short interview. Online (e-mail, video) and in-person (in SE England) options. If you think you meet criteria, please fill in the initial (5-min) questionnaire: research.sc/participant/ Thank you

I've had trichotillomania (pulling my hair out compulsively) for 12 years, caused by untreated PTSD & unrecognised autism & ADHD (unmet sensory needs & being chronically understimulated). I now have permanent damage to my hair follicles & will always "need" to wear hair pieces.

During a mental health crisis I was detained, forced into anti-ligature clothing, & denied period products. I was violently restrained & my period blood would go all over staff who would shout at me for it. Very rich! Very deep!

Ppl who haven’t experienced medical/healthcare related harm will never understand the terror involved in simply changing GP’s.

Stop calling people 'morons', 'idiots' and 'retards'. My new book (out in June from @Wildfirebks) tells how badly people with learning disabilities have been treated in the past, and the way that is embedded in everyday culture today.

I resent that some people with undiagnosed depersonalisation/derealisation make me feel like I should be grateful for having a dissociative identity disorder diagnosis. DID is *always* caused by severe, repeated, long-term trauma starting before aged 6. That is not enviable.

I am "lucky" to have an NHS dissociative identity disorder diagnosis. However: I did not choose to have symptoms that warrant individualised NHS funding. I did not choose to be excluded from conventional services. I did not choose to have such a stigmatised diagnosis.

TW: weight I gained vast amounts of weight due to medication. My metabolism has totally changed. I was never warned of this drug's known side effect. I blame my care coordinator more than my psychiatrist - she saw me fortnightly so saw my body drastically change & never once gently flagged it up.

I am diagnosed with DID. I have friends without a dissociative diagnosis who have implied that they feel me having what's classed as "severe, complex dissociation" (& being diagnosed multiple times by services individually funded by the NHS) devalidates *their* dissociation. It's hard to navigate.

I have known since I was a young child that I have hypermobile joints. I had Long COVID for a while as an adult & after my symptoms subsided, I was diagnosed with Ehlers-Danlos Syndrome. I believe COVID exacerbated my EDS symptomatology - & others have experienced this too.

I thought it was "normal", acceptable, & expected for me to be physically sick before psychiatry appointments. Those ten minutes once or twice a year of feeling like I wasn't understood had a profound impact on me. If anyone else has this reaction - it's on them, not you.

Uncritical glorification of healthcare professionals can facilitate & obscure abusive practices. The mantra of "no one goes into work to cause harm" is simply untrue. For example, many of us psychiatric patients have witnessed the sheer glee exhibited by some professionals when restraining us.

It can be hard working a system that has harmed you. Decisions made by commissioners derailed my life & exacerbated my suffering. I now work as a commissioner. If I hadn't met wonderful commissioners through doing lived experience work, I wouldn't have felt able to become one.

TW: self-injury Today is #SelfHarmAwarenessDay. For years, I would find clearly self-inflicted injuries on myself that I could not account for. Now I know I have dissociative identity disorder. This means other parts of me were causing injuries, hidden by blackout amnesia.

Are our disabilities really "hidden disabilities"? For me, as an autistic ADHDer with long-term physical & mental illness, I believe people who think my disabilities are "hidden": - Do not truly "see" how much they impact me - Are being wilfully ignorant - Fail to genuinely listen to me

I moved from Brighton to London in an attempt to get adequate mental health care. In Brighton, the "care" was negligent & abusive. In London, I struck gold with my psychiatrist. He is trying to get me all the support I could ever want. One shouldn't have to move to get this.

New paper published today but a long time in the making. A critique of the pseudo-diagnosis of complex emotional needs. We outline a number of concerns and risks of the term which has quickly become widely adopted in the NHS. #MadSky #AcademicSky www.cambridge.org/core/journal...