iiinova — where your digital self keeps evolving

Chloe (she/her) @chloeapter.bsky.social · 02/10/2026

Good on you for reaching out & accepting support even in the face of things feeling awful. I really do hope that the support on offer is kind, accommodating, & responsive. Will be thinking of you.

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Chloe (she/her) @chloeapter.bsky.social · 27/09/2026

I had a call the other day to say that I was accidentally referred to the wrong clinic. I have now been triaged by the correct clinic & the specialist thoracic surgeon wants to see me. But it won't be until around June '27 due to it being a national service with a long waiting list. I am gutted.

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Chloe (she/her) @chloeapter.bsky.social · 22/09/2026

Oh INTRIGUING. I will definitely look into this! Thank you!

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Chloe (she/her) @chloeapter.bsky.social · 22/09/2026

That is gorgeous! I'm going to see how mass decanting each med into its designated jar goes, as it's the weekly decanting that I struggle with more than remembering to/being motivated to take them.

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Chloe (she/her) @chloeapter.bsky.social · 22/09/2026

Oh interesting! For me, if they're decanted into some sort of system, I stay on top of taking them. It's the decanting them each week that I cannot cope with. So I'm hoping just being able to decant lots into each pot & just picking the required number out will be easier!

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Chloe (she/her) @chloeapter.bsky.social · 22/09/2026

I'm going to decant LOADS of each medication into its designated pot to avoid the weekly ritual (which I just cannot keep on top of) of having to replenish the pill organiser!

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Chloe (she/her) @chloeapter.bsky.social · 22/09/2026

I'm on top of my injectable meds, but struggle to take my 6+ daily oral meds reliably. I've ordered little glass pots with lids to label, decant each medication into, and leave on the kitchen counter. Perhaps in sight = in mind? We'll see!

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Chloe (she/her) @chloeapter.bsky.social · 21/09/2026

This sounds really tough, I'm sorry. I know I'm somewhat local to you - I would be very up for going for a coffee, introducing you to my dog, & being a listening ear/offering some company. I'd be happy to come your way as I know you're in pain. Absolutely no pressure, but I really do mean this.

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Chloe (she/her) @chloeapter.bsky.social · 19/09/2026

If you're ever wondering about the specificity of some NHS booking systems, I have been given a 3:44pm appointment to get my COVID booster & flu jab.

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Chloe (she/her) @chloeapter.bsky.social · 19/09/2026

Indeed. I'm tempted to download the app purely to make some facetious posts about it but I know that it'll just enrage me.

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Chloe (she/her) @chloeapter.bsky.social · 19/09/2026

This! I received a text about this app alongside a message saying I'm on the waiting list for a clinic relating to this particular pain. So clearly if I was triaged *by the clinic* as needing an appointment with them then they *know* my pain is beyond the point of self-management apps?

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Chloe (she/her) @chloeapter.bsky.social · 19/09/2026

Content note: suicidality No, I don't want to download the free self-management app "getUBetter" in a futile attempt to self-manage debilitating pain that self-management didn't touch & that landed me under the crisis team for weeks earlier this year because it made me suicidal.

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Chloe (she/her) @chloeapter.bsky.social · 15/09/2026

I heard mixed reviews about daridorexant before I started taking it, but it has been genuinely life-changing for me. I used to take zopiclone & then proceed to stay awake all night - it does nothing for me. With daridorexant, I fall asleep earlier & wake up earlier... & wake up feeling refreshed!

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Chloe (she/her) @chloeapter.bsky.social · 13/09/2026

I recently started a trinket trade box that is housed in the most gorgeous little shop in Brighton. I'm absolutely loving watching/hearing about people doing trades & getting joy from it. www.instagram.com/brighton.tri... If you're local, do pop by & give it a visit.

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Chloe (she/her) @chloeapter.bsky.social · 13/09/2026

Yesterday I turned 29. It feels weird (in the best way possible) to go into my 29th year feeling stable & happy, despite lots of negative stuff happening in my life lately that is beyond my control. I'm determined to hold onto that sense of stability & happiness.

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Chloe (she/her) @chloeapter.bsky.social · 13/09/2026

I've lived in 11 different properties in the last 10 years: some nice, some truly horrible. I feel so lucky that my newest rental - number 11 - is the one where I feel very relaxed, at home, & like it's a little sanctuary for me/my dog/my cat. I'm loving furnishing it dopamine décor style!

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Chloe (she/her) @chloeapter.bsky.social · 13/09/2026

Gorgeous, gorgeous Chole! Lots of my friends call me Chole as I get an ungodly number of emails misspelling my name as that every single working day. So pleased that your MIL made a full recovery, too.

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Chloe (she/her) @chloeapter.bsky.social · 11/09/2026

This was sent digitally with my (very outdated) address on the letter!

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Chloe (she/her) @chloeapter.bsky.social · 10/09/2026

As if I received an NHS appointment letter today where my home address is *over twenty years* out-of-date?!

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Chloe (she/her) @chloeapter.bsky.social · 10/09/2026

For 1.5 years, I’ve had investigations for rib pain. Whenever I said, “I have hEDS - could it be slipping rib syndrome?” I was told, “that doesn't happen". In December, I have an NHS appointment with an out-of-area "slipping rib syndrome specialist" thoracic surgeon. Relief is an understatement.

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Chloe (she/her) @chloeapter.bsky.social · 09/09/2026

Content note: death My grandma died last week. Mere hours after her death, her GP surgery texted her asking for her to rate their service (because they deregistered her once they knew that she had died). Automated patient communication is brilliant - until it isn't & it misses the mark.

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Chloe (she/her) @chloeapter.bsky.social · 31/08/2026

Autistic & ADHD commissioner here who is *very tickled* by commissioners being described as spreadsheet shaggers. Can confirm that I despise spreadsheets.

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Chloe (she/her) @chloeapter.bsky.social · 28/08/2026

Whenever I think of this particular psychiatrist I feel RAGE.

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

🧵on my experiences of doing mental health lived experience work whilst also being a commissioner.

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

Do connect with me over on LinkedIn (where I originally wrote this). www.linkedin.com/in/chloeapter/

linkedin.com

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

I will always, first and foremost, approach this work as a mental health patient and psychiatric survivor. Not as a commissioner. 13/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

That is something that I never want professional familiarity with the system to make me forget. Because however much my understanding of commissioning has changed, the starting point for my lived experience work has remained the same. 12/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

But I also know what those decisions can feel like when you are the person on the other side of them - when what appears on paper as a pathway, placement, or package is, in reality, somebody’s life. 11/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

Having this dual perspective is a privilege. I understand the mechanisms, governance, and competing pressures behind decisions about how services are commissioned. 10/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

And it is rarely with one person, one profession, or even one organisation. Understanding who genuinely makes decisions, where power sits, whose voices carry the most weight, and which constraints shape what is possible has fundamentally informed my lived experience work. 9/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

That has changed my perspective considerably. Commissioners are no longer the primary object of my frustration because I now have a much clearer understanding of where power actually sits within complex systems. 8/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

Three years later, I’ve recently moved back to Brighton and Hove and rejoined the Mental Health LEAG as a mental health patient - but this time armed with something I didn’t have before: an understanding of commissioning from the inside. 7/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

And yet, from those very first encounters, I knew that I wanted to become a commissioner myself. I eventually moved away from Brighton and Hove, partly in the hope of accessing better mental health support. And then I became a commissioner. 6/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

At times, the experience was profoundly dehumanising. I even received letters about deeply personal decisions concerning my life addressed as simply my initials, not my name: “Dear CA”. 5/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

And, of all the people and organisations I encountered, commissioners were often the source of some of my greatest frustration. I repeatedly felt misunderstood, misrepresented, and reduced to a money-saving exercise. 4/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

I joined for one main reason: to do what I could to influence the decisions and processes that shape mental health services locally. At that point, I had spent many years under mental health services. 3/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

Four years ago, I joined Possability People's Mental Health Lived Experience Advisory Group (LEAG) for residents of Brighton and Hove. The group brings together people with lived experience of navigating the mental health “system” to influence local services. 2/13

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Chloe (she/her) @chloeapter.bsky.social · 19/08/2026

As a patient, I used to harbour intense feelings of resentment towards commissioners. So then I became one… 1/13

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Chloe (she/her) @chloeapter.bsky.social · 16/08/2026

I am lucky that I am able to work & that I have a decently paying job. However, I have no savings. Why? Trichotillomania (stimming by pulling my own hair out). I have spent literally all my would-be savings on wigs, hair extensions, hair systems, hair toppers, etc. Stimming can have a price.

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Chloe (she/her) @chloeapter.bsky.social · 15/08/2026

The specific brand of salacious glee expressed by many in the face of the manufactured, racist, ableist smear campaign against Jason Arday was utterly sickening. I am thinking of Jason Arday, his loved ones, & all those affected by the devastating news of his death.

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Reposted by Chloe (she/her)

Rachel @rrowanolive.bsky.social · 15/08/2026

I could OFF THE TOP OF MY HEAD name 10+ white male academics with long records of one of the below who are still alive and working btw: - serial sexual misconduct - serious data breaches and/or unethical trials - plagiarising female colleagues' research ideas - "scientific" racism and/or eugenics

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Reposted by Chloe (she/her)

Thinking Person's Guide to Autism @thinkingautism.com · 14/08/2026

CN: Death, suicide. Absolutely horrified that autistic professor Jason Arday—who was relentlessly smeared by ableist bullies—was found dead today. Our sincere condolences to his family and loved ones, and shame upon The Telegraph & other outlets who hounded him. www.theguardian.com/uk-news/2026...

theguardian.com

Jason Arday, professor at centre of Cambridge plagiarism row, found dead

Academic was pronounced dead at his home in south London after police called to address after 3pm on Friday

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Chloe (she/her) @chloeapter.bsky.social · 08/08/2026

Urgh, it's dire. I'm having a call with my old psychiatrist in London on Tuesday & I'm going to say explicitly that I do not want a transfer of care!

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Chloe (she/her) @chloeapter.bsky.social · 08/08/2026

Ahhh, thank you! I feel for anyone who has to endure SPFT!

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Chloe (she/her) @chloeapter.bsky.social · 08/08/2026

I am ecstatic to have moved back to Brighton. However, the mental health services here are... well... if you know, you know. I am trying to use this as an incentive to stay well as, historically, I have faced immense iatrogenic harm from services in this city. Anyone in/around Brighton... hi!!

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Reposted by Chloe (she/her)

Michael Birtwhistle @salfordmh.bsky.social · 08/08/2026

Awkward to offer MH centres with unspecified treatment, resourcing or staffing, rather than funding current projects & services, & known gaps e.g. Autism & ADHD assessment & provision. There will be 3 across Greater Manchester's 9 boroughs - separate towns & cities.

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Chloe (she/her) @chloeapter.bsky.social · 18/07/2026

Solidarity - I have *just* started coding interviews for my research on how autistic adults make sense of being assigned the "challenging behaviour" label & I am feeling invigorated !! motivated !! excited !! But thank you for this, I know now to look out for feeling Mystery Bad in case it arises.

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Chloe (she/her) @chloeapter.bsky.social · 09/07/2026

What a joy to co-deliver this session with Rosie from @coprocollective.bsky.social. @sprockethub.bsky.social is a research & innovation hub aiming to transform the delivery of services for children & young people with complex health needs & for those who care for them at key transition points.

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Chloe (she/her) @chloeapter.bsky.social · 05/07/2026

Today is avoidant/restrictive food intake disorder (ARFID) awareness day. As someone with an ARFID diagnosis... ARFID is *not*: - simply fussy eating - being ungrateful - being willfully difficult - a choice - down to bad parenting Please educate yourself before judging.

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Chloe (she/her) @chloeapter.bsky.social · 04/07/2026

Are you a UK-based autistic adult (formally diagnosed or self-identified) who has (like me) been assigned the "challenging behaviour" label or similar? If so, I'd love to hear from you for my @uoppald.bsky.social research, supervised by @drstevenkapp.bsky.social. 📧 Chloe.Apter@myport.ac.uk

How do autistic adults make sense of being assigned the "challenging behaviour" label?
University of Portsmouth

I'm Chloe, a master's student at the University of Portsmouth. I am autistic and I have been assigned the "challenging behaviour" label.

Eligibility:
- Autistic (formally diagnosed or self-identified)
- Age 18+
- UK-based
- You have been assigned the "challenging behaviour" label by staff/clinicians/professionals in an education, health, and/or care context

Participation* involves one of either:
- An online interview (having your camera on or off is acceptable, as is using the chat function or participating via email)
- An in-person interview in London, UK (in a mutually agreed public place anywhere within London, UK (e.g. a café or a library)

All participants will be offered the interview questions in advance and this research has been given ethical approval.

If you are interested in taking part or want more information, please email Chloe.Apter@myport.ac.uk

Supervisor: Dr Steven Kapp

*Please note, there is unfortunately no financial remuneration for participation due to this research being for a master's degree

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