Discover and read the best of Twitter Threads about #LivedExperience

Most recents (24)

It's #TimeToTalkDay tomorrow, so instead of telling mentally ill people to ask for help, here are 10 things to talk about instead:

1) the UK Government has scrapped their 10-year strategy for #mentalhealth

2) people with serious mental health problems die prematurely worldwide
3) mental illness is the leading cause of days off work in the UK

4) the number of mental health beds in the UK is decreasing, but demand for them is increasing
5) waiting lists for ADHD and autism assessments are around 2 years and above for most adults

6) clinicians in the UK support withdrawing care from patients with #eatingdisorders when they don't respond to treatment, without scientific evidence
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As we're coming to the end of 2022, it's a good opportunity for us to reflect on the past year and what it has meant for us at Into Work 🕰️

Here are just some of the highlights...
In 2021/22 we served 283 people across our #SupportedEmployment services

Engagements increased by 16% for our #WelfareRights service as we supported clients with their benefits and income maximisation through the #CostOfLivingCrisis
We launched Inclusion Works! our project for young disabled people

This project helps young people thinking about their next steps to increase their confidence and skills

After a successful pilot earlier in the year, we were excited to extend this project Illustrative graphic, text says "Inclusion Works! Suppo
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#Cancer affects almost every family

Understanding & amplifying the #LivedExperience of people affected by cancer creates more effective support systems.

Yet, cancer control focuses on clinical care & not on the broader needs of people affected by cancer.

This needs to change⬇️
1 in 5 people will be diagnosed with #cancer in their lifetime.

A cancer diagnosis triggers a profound effect on the health and well-being of all those involved.

Nearly 50% of people diagnosed with #cancer experience

😰 anxiety
😥 a loss of faith
💔 abandonment by their intimate partners

More information
📌 Illustration of someone typ...
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Been thinking a lot about how #PatientPartners in #Research are asked to provide a letter of support and a CV or 'applicant profile' for grant applications. These have changed a bit over the years, but I struggle with a few things #PatientEngagement .../1
First I struggle that the letter of support or CV/applicant profile (see are very similar to what is expected of others on the research team, who usually bring really different experiences/knowledge compared to #PatientPartners #PatientEngagement.../2
.. I hope I articulate this well. As a #PatientPartner on a grant appln, I typically share very personal things about my condition/healthcare experiences. After all, I'm trying to express my support and how the research is relevant, but if I step back, I ask: to what end? .../3
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So today I learnt Shias make the call for Azan a couple of minutes later than Sunni mosques & that is why we have recently begun to hear the call for prayer 10 times a day in our locality.
Now of course with Ramzan, we have a special hooter that goes off at 4.42 am & 6.40 pm - 2mins before the actual call…

With 3 Sunni mosques & 1 recent Shia mosque in the vicinity we are subjected to 365x10 Azans… each one competing to be louder.
Our little street dog, Lalli through her 12yrs would wail along side at least 5 times a day setting off the dogs in our homes into a right royal cacophony.

We then realised there was a particular base sound they reacted to & we neighbours joked that to get undisturbed sleep we
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1.Theres a lot of debate today in the LBP field specifically & musculoskeletal pain in general about manual therapy vs exercise. Motor control vs strength training. The role of patient education, etc.
2. The issue of client preferences is a no brainer to me as I’m in the trenches & validate my clients #livedexperience. I seek interaction & collaboration. @MyCuppaJo
3. This way I’m able to guide by the side & be an Alfred rather than a “fix it” Batman Superhero for them. @jasonsilvernail @MKargelaDPT…
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Thread IV: The Social Sciences are a Mess, Including But Not Restricted to Psych Science, and It Includes But Goes Well Beyond The Replication Crisis (in general, and not just for things political-see other threads for those).
My very 1st PsychToday blog:…
No, they don't. My blog is from 2012…
Paper on right just came out.
You (could have) heard it here first.
This one is spot on, but its also dangerous.
It is NOT an argument to believe in conspiracy theories or data analysis by your libertarian uncle who knows a little stat.
Its more like "treat scientists' with deep skepticism."…
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Day 2 of #JSWEC2021 just starting, chaired by @JoWarner01. Impressive panel including Baroness Hilary Armstrong, @MarkDrakeford & @JulieMorganLAB. Apparently representatives of other parties were approached but unavailable. Says something about #SocialWork, society & solidarity?
Hilary Armstrong talking about how her experience of violence in her career in #SocialWork (interestingly including #CommunityWork), led her to look at the social causes, and then into politics. Informed her later work with the Social Exclusion (later, Inclusion) Unit. #JSWEC2021
Next up @MarkDrakeford. Ambivalent recruit to #SocialWork. Convinced by Bill Jordan that co-equal relationships with clients possible. Already a socialist, but became a politician because of cases stemming from poverty and deprivation. Same principles embedded in SW & his govt.
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It’s national #coproduction week!

In this @DisplacedVoice_ issue, @lora_agbaso and I provided reflections from the amazing @VOICESNetworkUK, a co-production initiative with experts by experience in the immigration system.

Our thoughts #coproduction in community-based projects
Achieving a meaningful systemic change often requires more than sharing voices or insights of people with lived experience. Not seeing quick changes can be disheartening.

Advice: Effective management of expectations, joining up efforts, resource sharing, building coalitions
Tokenistic engagement is prevalent in policy and public service contexts due to systemic imbalances.

Advice: proactive analysis of how to make greater contributions. Be selective in engagement opportunities. Important to acknowledge contributions & show the impact of engagement
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#PatientCentric care, #PtExperience #Tokenism, #HoldingSpace #WeAreBetterTogether ⚠️ long thread.
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/
engagement of various #stakeholders including #patients and #caregivers. This was not the 1st meeting of this org. I have attended. I walked away from this particular meeting sad, frustrated & a bit angry. The topic was on #patientcentric care. A topic that is near & dear 2/
to me. The caliber of individuals involved was spectacular; academics, researchers, consultants. As I scrolled through participants as well as listened to the conversation and watched the comments come across the screen I was enthralled with the dialogue however 3/
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I’ve continued to see a divide in #pain community, a lack of support as well as pretty blatant attacks. My position: none of us speak for the entire community. We all have are personal stories. Each is unique and sacred. Pain occurs on a continuum and there are 1/
a variety of variables involved. As a parent what I want is a wider variety of options that is paid by insurance, I want voices to be heard, I want individual care, transparency and partnership with physicians & HCP. I want accessibility in the community I live 2/
I want a coordinated approach that is patient and family centric that takes into account barriers of treatments. When I say I want a variety of strategies & treatments I absolutely mean it. My kids have utilized ACT and CBT in a variety of settings. Sadly in only 3/
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Thank you to everyone who came to our INTERFACE: Science + Art + Health event last week. We are pleased to share our virtual #ArtExhibition & the video recordings of the talks given by our artist & researcher duos! Visit our @Artsteps_ #ArtGallery now: 1/6
Video 1 features @SMQB_UoB Research Fellow Dr Leandro Junges & #LivedExperience artist @MellEJFisher talking about their joint art project which explores #Papilledema #Papilloedema #IdiopathicIntracranialHypertension @DrMollan @IIHUK @IIHDrBirmingham 2/6
In Video 2 @SMQB_UoB Research Fellow Danny Galvis & #Composer Pietro Bardini explore recovery response following #CardiacSurgery through a multi-channel #Soundpiece that mimics the interaction model between hormones & inflammatory mediators @ederzavala 3/6
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I found out that the person in charge of the job that I left (because of a toxic/ableist environment) shared the social media posts I made (about my resignation) with the team and said I was unprofessional.

This demonstrates a huge difference in how we operate. I believe in transparency & accountability. It’s how I’ve gained my reputation & community trust. My work belongs my communities. Plus, I was very diplomatic and held back in what I posted.

#transparency #accountability
It’s frustrating because accountability & self-reflection are what that project needs. He goes after me instead of addressing the real problem & focusing on self-reflection (after losing two queer, disabled consultants who said the environment was too toxic)
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🧵 To conclude our celebration of #AudreLorde’s 87th birthday we are now tweeting excerpts about her #livedexperience with and politics on metastatic #breastcancer fom “A Burst of Light” (1988). #bcsm #bccww #histmed #twitterstorians #BlackHistoryMonth #lgbthistory
“A Burst of Light: Living with Cancer"
The year I became fifty felt like a great coming together for me. I was very proud of having made it for half a century, and in my own style. “Time for a change,” I thought, “I wonder how I’m going to live the next half.”
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🧵#ODT in 1934 #AudreLorde was born. To celebrate the 87th birthday of the great “black, lesbian, mother, warrior, poet”, we are going to tweet excerpts on her cancer #livedexperience & politics from The Cancer Journals (1980) and A Burst of Light (1988) #histmed #bcsm #bccww
"The Cancer Journals"

“Each woman responds to the crisis that breast cancer brings to her life out of a whole pattern, which is the design of who she is and how her life has been lived. The weave of her every day existence is the training ground for how she handles crisis.
Some women obscure their painful feelings surrounding mastectomy with a blanket of business-as-usual, thus keeping those feelings forever under cover, but expressed elsewhere.
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Another great episode in this series, this time touching on #academia, #class and #traumainformed understandings of distress.

I love how @themichjam's #livedexperience informs her understanding of the change we need to see in #mentalhealth systems.


"You're such an inspiration!"

"Are you safe to be here?"

On responses from mental health professionals when identifying as person with #livedexperience during guest lectures.

"Over the years, I just got angry and that's why I decided to start speaking about it"

On the choosing to share #livedexperience as a form of activism.

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Sharing a few tweets of resources we've developed @clinicaltrialON in the past year to help people engage with #clinicaltrials (as participants or as collaborators on research teams). Thank you to our partners who have helped us. #talkclinicaltrials /1
Added to #TalkClinicalTrials -… - so people can hear from many perspectives about #clinicaltrials, including from participants, caregivers, and @GovCanHealth cc @Maureenchats @LMCManna @CeroniTina @LaraCeroni @HuntingtonSC @anetto @mgfrenchmph @mcintose /2
Created a Participant Experience Toolkit… to help people doing #clinicaltrials ensure participants feel more informed and valued #talkclinicaltrials /3
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I now know why my colleague mentioned @Rufusmay to me.

I love the way he proposes telling stories, and being creative, playful and vulnerable as a way of bringing our whole selves to our work.

Highlights below...

2:00 2:35

"Until you or a relative experience it, it's another world [...] If you're sectioned you lose your rights, and things get done to you...

...I think it really changed my life."

On the influence of experiencing involuntary treatment on his career.

2:35 - 3:05

"When I managed to return to education I thought, "I want to make a difference" and go back into the #mentalhealth system and promote a more listening approach...

...I didn't feel I'd been listened to."

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I know I'm a little behind but loved catching up on this episode today.

Particularly like Dr Schreiber's reflections on the implications of "us and them" between service users and professionals, for the quality of public #mentalhealth services.

Highlights to follow...

1:00 - 2:51

"...noticing that their were divisions between staff and patients."

Reflecting on first encountering the "us and them" as an assistant psychologist working in inpatient unit.

2:33 - 3:30

"...being really incredibly anxious about what would happen if a young person told [...] another staff member... just seemed like a massive taboo."

On professionals sharing #livedexperience with service users.

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It took me a while to get to this episode but so glad I did.

Dr Linacre touches on so many important issues with regard to the sharing of lived experience by mental health professionals.

This will be a long thread.

10:37 - 11:25

On recognising the double-edged nature of our personal qualities. How qualities that predispose us to mental health difficulties might also be strengths.

11:43 - 12:25

On how personal experiences of #stigma towards disability and #Ableism motivated him to work with people with learning disabilities.

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Seriously, if you work in #mentalhealth and haven't checked out this series yet, do yourself, your colleagues and your staff a favour.

This episode touches on more of the themes identified in my scoping review into the sharing of #livedexperience in the workplace...

7:30 - 8:40:

"We never talked about it"

"We can't let the cat out of bag"

On supervisors not being comfortable discussing episodes of mental health challenges.

10:39 - 11:25

"I was just really worried about what would happen"

On fear of disclosing during clinical training.

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Another great episode in this series.

Important reflections on the contrast between workplaces that support and value the well being of the staff within them, and those that don't.

Must watch for leaders within #mentalhealth services who wish to create compassion cultures.

1:55 - 3:40

Great description of "homely" team where the health of staff was prioritised by the manager and colleagues "had each others' backs".

4:05 - 4:15

Contrasted with a workplace where in response to a toxic workplace culture she was "given the message" that "their was something wrong me", creating a "deep sense of shame".

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This series just keeps getting better.

Great conversation around the intersections of #mentalhealth #stigma and structural #racism and bring our whole selves to our work as mental health professionals

Definitely worth watching the whole 40 minutes but highlights for me... 1/7
1:40 - 2:15

"I'm more of a them than I am an us"

The "us and them" dichotomy in #mentalhealth professions.

4:55 - 5:35

"It was a sharing culture"

On a workplace that supported the sharing of #livedexperience and it's impact on the well being of staff.

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Talk about a strong start ⁦⁦@In2gr8mh⁩!

In conversation with #mentalhealthstigma researcher with #livedexperience, Patrick Corrigan:

“I think one of the best things to happen in the last 10-15 years in mental health is peer support.”
Also check out 10:50-11:30 on the effect of the “us and them” on outcomes for people accessing services.
...and 15:09-16:10 on "The Clinician's Illusion" in mental health and it's impact on how we perceive the possibility of people living their best lives.
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