Discover and read the best of Twitter Threads about #LXPs
Most recents (16)
1) @Keirwales is the ultimate Marmite Man. You love him or hate him. But put that aside. He’s doing a brave thing. Speaking about how he raised a concern about harm to SUs. Instead of investigating the complaint, he was investigated. > #RCOTCasson rcot.co.uk/2023-elizabeth…
2) The story of being punished when raising concerns will be familiar to many of us. The lecture’s theme is ‘Nothing Flourishes in a Toxic Environment’. Keir is a white cis educated man who took a stand to avoid harm to vulnerable people. How do people from already marginalised >
3) groups feel when they are in a similar situation? Staff are either silenced, or forced out. It is a really important discussion to have as it impacts on everyone, whether you are an OT or not. @Keirwales now works with the formidable @HoppyPelican, who also has her own story >
@kateneuropsych @threadreaderapp @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd @APApsychiatric @APA 1) Thanks, I understand and agree with most of what you have said, in particular about WS & love the idea of it being diagnosed as a psychopathy in itself. The lens I work from within the LXP discipline is as an end user of services and using the insight of this, alongside the >
@kateneuropsych @threadreaderapp @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd @APApsychiatric @APA 2) range of community stances, academic knowledge, grey and published literature that exists. I run a #MadStudies group & Dr Colin King, @BacaBaca2012. He is a ‘Mad Academic and partnered with the Mad Studies group to write this article in the Lancet: pubmed.ncbi.nlm.nih.gov/33894174/ >
@kateneuropsych @threadreaderapp @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd @APApsychiatric @APA @BacaBaca2012 3) Colin also talks about Whiteness and we learnt a lot during his visits to the group. We also have @MadBlackPixie, an E&D consultant who is a Co-facilitator, and David Gibbs, not on Twitter, who does the same work. I think where we differ is on the need to name the >
1/ I want to say a great big thank you to @chris_kammy for speaking out about #apraxia affecting his speech. I’ve been inconsolable over the last few days since I’ve discovered that a complication of B12 deficiency & pernicious anaemiaI’ve been diagnosed with, is #aphasia >
2/ I thought a few low vitamin levels was no big deal. I was having the munchies after an injection so I Googled to see if that was a side effect & I stumbled on the complications associated with B12. I have every single one. Some, like heart problems and reproductive stuff >
3/ are reversible. But the neurological and nerve damage can be irreversible. I have every single symptom and I’ve had them now for years. B12 & folate deficiency can happen if your diet is a bit shite, or if you are vegan/veggie. The hubby cooks from scratch and I’m not veggie >
1.Lots of feelings today. I’m in the middle of trying to officially get discrimination and inequality recognised. It’s really hard. I’m so fucking tired and sad. I want to fast forward to an open court where I get to say what’s happened and it’s done & over whether I win or not >
2. I’d have been happy with a systems change that would have addressed inequality. Most people can’t cope with how awful this process is and you never hear about other Lived Experience Professionals (Researchers, Peer Workers etc) who have raised grievances because >
3. organisations often give a settlement payment to keep it from going to tribunal. I don’t think anyone could offer me a big enough sum to do that. It would need to be so big they’d never, ever do that again to anybody because they couldn’t afford to. >
1.There is something so heartening about seeing a Tweet that acknowledges that the issues #LXPs have are real & they do have an impact. Because discrimination usually isn’t acknowledged #LXPs never get to hear the words “I’m Sorry” as a genuine apology as opposed to being in the>
2. context of ‘your perception’ being skewed or ‘your feelings’ being hurt, which is like a backhanded way of being told that the way you are being treated is caused by you & not the people doing it to you. It places fault back with you, rather than being the responsibility >
3. of people accountable within organisations to change discriminatory behaviours. It lets people who lead organisations off the hook if there’s no acknowledgement an issue exists, because then there are no national campaigns to appease, no pesky equalities targets to reach. >
1. I’ve had years of knowing stuff isn’t right and being gaslighted into it just being my ‘perception’ or pathology. It’s a pretty cruel thing to do when talking to someone diagnosed with a label that likes to include an ‘unstable sense of self’, ‘paranoid ideation’ & >
2. ‘severe dissociative symptoms’ as part of its diagnostic criterion bullshittery. After finally catching wind that actual evidence existed that I had been excluded, lied to, had things hidden from me, I felt so relieved and happy to finally have something solid to show that >
3. although I’m a loud proud member of the Mad movement, I’m not losing the mind I’ve worked so hard to keep. But that has been replaced by sadness that people would actively use my disability - which I am open about for work purposes - to gaslight me in this way. I have to >
1. What people refer to as ‘personality disorder’ in terms of ‘emotional dysregulation’ is interesting. Rather than dysregulation, I’ve noticed a lot of people appear to have a highly sensitive, finely tuned reception to other people’s emotional communication. Not everyone of >
2. course, that would be a massive generalisation. But a lot of people can sense or have intuition of when something feels wrong, or a persons mood is good or bad. Much is likely to have come from early childhood experiences where this skill kept some people safe. It’s less of >
3. a mystical power, more of a supernatural skill that has been developed. But it doesn’t mean that the emotional communication your highly sensitive instrument can be read or interpreted accurately. The emotional data given by the other person when learning the skills as a >
1. The stress that ‘co-production’ takes when power is unequal is highly distressing for the party with lesser power in the partnership, particularly over long periods of time where the power imbalance is sustained and there is no action to remedy this. When power is abused by >
2. ensuring that decisions about LX practice or services can never be made by the Lived Experience Professional in the room, that you take those decisions outside of the room, this causes distress and harm. The harm caused by the abuse is used an example of why #LXPs are >
3. described as ‘vulnerable’, or prone to going off sick. Let’s just be very plain speaking about this - LXPs aren’t vulnerable. They are warriors who have been through wars. What they are is people who already have battle wounds, coming into workplaces that will particularly >
Since I’ve been doing these, I get messages from ppl ‘off the record’ who either need to reach out for support or who reach out to provide support. I’ve found the hardest thing is being treated with such different levels of respect in different contexts. Does anyone else >
> experience this? What I’ve found is that as I’ve had expertise recognised and respected in some contexts, the contexts in which it is disrespected somehow go from being upsetting to unbearable. As you raise the fact that what you are experiencing is discriminatory & >
> disrespectful, and you have it ignored time and time again, you go from being able to give the benefit of the doubt, of being able to put what is happening down to ignorance, to starting to realise that it can no longer be ignorance. So what is it? Is it maliciousness? >
Discrimination is everywhere - sexism, homophobia, racism. I tweet a lot about the discrimination faced by #LivedExperiencePractitioners #LXPs who openly use their lived experience of mental health in their work. Do we need new legislation to protect us all from #discrimination?>
> Ppl who follow me/know me in real life know my health has been decimated over my experience of trying to address mental health discrimination. Did you know there is no legislation against systemic discrimination? Well, that’s what my union told me. It’s also almost impossible >
> to win a personal discrimination case, so they don’t give you access to a lawyer. Even stress claims are hard to win, so you rarely get union help either, including legal representation. I’ve lost my driving license, had seizures, take medicine that has left me with blurred >
Yikes. I’ve had a bit of a shitty night. Woke up from a dream where I was sobbing - proper distressed, inconsolable body sobs - about work. I was living in a tiny cramped flat with my deceased family members, with no room. People from work were coming in and out & I felt >
> ashamed and I was trying to say that I used to live on my own in a bigger flat and not share a bedroom with my siblings & live with my Mum but I couldn’t. There was a new manager who came to see me and somehow bizarrely ended up in my bedroom waiting for me and it felt >
> intrusive & shaming because she saw my poor living conditions and I knew she would have been told by management that I was unstable/troublemaker/no good/rubbish. So then I cried and cried and cried and cried (to show how stable I was 🤣) and then I woke up 😳😳😳 >
#LXP explanation thread: There is no standardised language in the Survivor movement. When I use the term #LXP it is an acronym for #LivedExperiencePractitioners or #LivedExperienceProfessions. It refers to ALL people who work in posts that require use of insight from >
> lived experience of adverse mental health. So that includes LE Consultants, Survivor Researchers, Peer Support Workers etc, It’s not a universally accepted term, but when I tweet I need to use *something* to refer to us all, so that’s the term I use, because it’s quicker than >
> writing an explanation each time that Twitter doesn’t allow enough characters for, unless it’s a thread which people are less likely to read (ha, that’s a hilarious thing to say in a thread 😂). We all do very different roles but the one thing that binds us is the unique way >
It’s #WorldMentalHealthDay - a day that #MentalHealth activists love to hate, because hey, it’s not all light at the end of the tunnel (yay Recovery 🙄) & it’s not just one day of the year. But sod it, here’s a pictorial compilation for you. Bonus points if u get to the end 1/25 
2/25 Meds. Love them or loathe them, they are a daily reality for many of us. Big Pharma makes a lot off us Mentals. Did you know that my most debilitating diagnosis can’t be medicated? But all the others equate to 13 tablets a day, plus any extras on PRN #WorldMentalHealthDay
3/25 I’ve never, ever, ever been able to maintain taking meds regularly. But I do now. The Hubster wakes me up with a coffee, toast and meds. But having a caring, loving person in my helps me more than any meds. Sadly not available on prescription for us all #WorldMentalHealthDay
It’s good that examples of CEOs taking race discrimination seriously beyond just listening to stories into action is happening. I hope that these skills in tackling inequality will be used in tackling discrimination that #LXPs face too >
> As a mixed race, pan, disabled woman, none of the #NHS staff networks provide the support I need because where I face the most intense discrimination & inequality is openly using insight from a mental health condition in my work. It’s not an area any adequately understand /2 >
#BusStopWanker #Diaries Sometimes even a disabled bus pass isn’t enough to get around. Woke up this morning at 6am crying, fell asleep & woke up with a massive cry fest hangover. Couldn’t wake up for the headache. The Hubster has had to take me to triage appt 4 dental surgery /1
One of the ways of coping with days like this where I have to face the world whilst my insides and face are in a state is a shit ton of make-up. Unfortunately in my haste I’ve left it. So had to make do with a brush & hat /2
The current dip in mood & anxiety levels are caused by the impact of stress caused by my own experiences of discrimination as an #LXP, but mainly the levels of energy & effort it takes to address it. It involves me skilling up support staff on LXPs ie. union/equality staff /3
It’s #TimeToTalk about people who are employed to use their experience of mental distress in MH charities ie. @MindCharity @TimetoChange. #LivedExperiencePractitioners #Peers experience discrimination, derogatory pay & active blocks to career progression #TimeToListen #TimeToAct
#TimeToTalk Many people don’t realise is that large generically run charities such as @MindCharity are given majority of funding, whilst orgs run by people who live with mental health conditions & grassroots groups are not funded. We are becoming extinct. theguardian.com/society/2019/j…
The National Service User Network @NSUN is run by ppl with lived experience of Mental Health condition, but even that has lost its funding - the one org trying to support and keep our SU-led orgs together! #TimeToTalk Why can money go to @TimetoChange but not SU-led national org?
