Listings - Neurodivergent Practitioner Community

Adding this here in case of interest to any of you! neurodivergentpractitioners.org/listings/

How frustrating to share such valuable feedback only to be dismissed in that way. My experiences align with your observations!

I cannot understand how it can possibly be co-produced when the life domains that you have to rate (using a predetermined scale) are already chosen for you!

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.

You're too kind - I really appreciate it.

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.

I think of this every time I am asked to fill it in!

Yesterday, I answered it over the phone & 10 minutes later, I received another call from the same person asking me if I had time to answer it over the phone.

I told him that he called me about it 10 minutes earlier & he just seemed confused!

Ahhh, sending all the good vibes your way.

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.

Thank you, I hope you're doing okay?!

Understanding Neurodiversity and Supporting Neurodivergent People - Webinar Join us online to find out how you can make a positive difference in the lives of people with learning disabilities

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-...

Health experiences and outcomes of autistic and non-autistic adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder - BMC Medicine Background Previous research has indicated an association between hypermobility and autism. This study examined whether being autistic affects diagnosis, symptoms, and health experiences of people wit...

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?

Creating news for (and with) people with learning disabilities The BBC's William Kremer unpacks how to make news more accessible for people with learning disabilities.

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.

A Co‐production Evaluation Tool Informed by Co‐production Workshops for Use in Evidence Synthesis Contexts Aim We aimed to co-produce a tool for evaluating co-production within evidence syntheses. Background Participatory approaches are recommended to enhance the salience and quality of evidence synthe...

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

Say it for the people at the back!

I really appreciate you saying this, thank you. We ALL deserve better - there are so few of us getting the support we deserve.

Thank you, your support is always so appreciated!

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.

Understanding the relationship between autism and hypermobility | Precision Medicine Doctoral Training Programme | Usher Institute Precision Medicine Project - Understanding the relationship between autism and hypermobility

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".

A University of Lancashire poster, inviting people to participate in research. Have you experienced harm from mental health services? You are invited to take part in this study which is looking to identify and examine overlooked and lesser known forms of harm in UK mental health services. Taking part will involve completing an anonymous online survey, involving questions about your experiences of harm. This will take approximately 15-45 minutes to complete. I am looking for individuals who are aged 18+, AND have experienced harm from mental health services within the UK from 2010 onward, OR are the carer/family member of someone who has experienced harm from mental health services within the UK from 2010 onward. For more information, or to take part, please scan the QR code or go to this web address: https://tinyurl.com/yt2ydvxx Who Am I? My name is Lauren Langley and I am a PhD student at the University of Lancashire. I am Autistic and have lived experience of trauma and mental illness. As a mental health patient, I have experienced harm from mental health services. If you have any questions, please get in touch: llangley1@uclan.ac.uk (picture below of a white person with ginger hair, wearing a blue t-shirt) Further information, including FAQs, and Easy Read and downloadable versions of the questionnaire are available on the study website: www.hiddenharms.wordpress.com Ethical Approval No: BAHSS2 01118

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