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Last night I made a pledge.
The crisis in mental health services is no secret. Lives have been lost and ruined. Family and friends left bereft with grief.
Weâre told repeatedly lessons have been learnt. But have they?
Itâs time to make good trouble about this.
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Last night I made a pledge.
The crisis in mental health services is no secret. Lives have been lost and ruined. Family and friends left bereft with grief.
Weâre told repeatedly lessons have been learnt. But have they?
Itâs time to make good trouble about this.
1/
âOut of sight, out of mindâ or so the saying goes. Thatâs how people with severe mental illness were dealt with in my childhood.
The psychiatric hospital, in its forbidding Victorian building, was somewhere you got âput awayâ.
I volunteered there. It was full of misery.
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The psychiatric hospital, in its forbidding Victorian building, was somewhere you got âput awayâ.
I volunteered there. It was full of misery.
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But how are things now? Itâs five decades since I first met people suffering terribly because mental health services ignored them, or abused them.
With all the advances in our understanding of mental health surely things are very different these days?
I wish I could say so.
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With all the advances in our understanding of mental health surely things are very different these days?
I wish I could say so.
3/
The commitment I made is a #PledgeForTim
Itâs also a pledge for Connor, Zoe, Becky... so many more.
Tim died waiting because he didnât âfitâ services.
As his mum said, people like Tim with âcomplex needsâ are often called âdifficult to engageâ, when itâs services that are.
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Itâs also a pledge for Connor, Zoe, Becky... so many more.
Tim died waiting because he didnât âfitâ services.
As his mum said, people like Tim with âcomplex needsâ are often called âdifficult to engageâ, when itâs services that are.
4/
Itâs not just mental health services that are inflicting terrible harm by neglecting and abusing people.
Itâs all the other agencies too, housing, DWP, primary care, police.
So today Iâll be tweeting about what needs to change, based on my own and other peopleâs experiences.
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Itâs all the other agencies too, housing, DWP, primary care, police.
So today Iâll be tweeting about what needs to change, based on my own and other peopleâs experiences.
5/
Part of the problem with mental health services is that we only really find out what theyâre like when we try to use them, or someone close to us does.
Some good people work in mental health, and some people get a good mental health service.
But this isnât always the case.
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Some good people work in mental health, and some people get a good mental health service.
But this isnât always the case.
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If anyone should have been able to navigate mental health services I should have.
Iâd volunteered in them, worked in them, researched them, lectured on them.
But when I needed support that went beyond what my GP and family and friends could provide I was terribly let down.
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Iâd volunteered in them, worked in them, researched them, lectured on them.
But when I needed support that went beyond what my GP and family and friends could provide I was terribly let down.
7/
The first problem I encountered was that I didnât âfitâ the service. In the summer of 2018 I had referred myself for autism assessment and I was in crisis.
IAPT had little experience of working with autistic people and communicating with them was confusing and distressing.
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IAPT had little experience of working with autistic people and communicating with them was confusing and distressing.
8/
This was my first experience of being spoken to harshly and without any empathy or compassion.
I was annoying because I wouldnât say what they wanted me to.
What value does a risk assessment have if it isnât based on truth?
Deemed too complex I was passed on to the CMHT.
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I was annoying because I wouldnât say what they wanted me to.
What value does a risk assessment have if it isnât based on truth?
Deemed too complex I was passed on to the CMHT.
9/
The gateway process gave me hope. I was seen by someone who understood #trauma and whose partner was trained in #EMDR
I really believed I was on the point of getting the kind of specialist help I needed. But from then on things started going terribly wrong.
#autism
#CMHT
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I really believed I was on the point of getting the kind of specialist help I needed. But from then on things started going terribly wrong.
#autism
#CMHT
10/
Each time I was seen by a Psychology Assistant my distress increased. I dreaded going.
The service was described as âtrauma informedâ, but clearly wasnât.
Imagine going to hospital with a broken leg, and having someone jump on it, then give you a paracetamol for the pain.
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The service was described as âtrauma informedâ, but clearly wasnât.
Imagine going to hospital with a broken leg, and having someone jump on it, then give you a paracetamol for the pain.
11/
My partner came with me and he was horrified by what happened. No reference to previous meetings, no structure or purpose.
Iâd assumed I was being assessed, but we were told I actually had a formulation and a care plan. I had never even seen these, so we asked for copies.
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Iâd assumed I was being assessed, but we were told I actually had a formulation and a care plan. I had never even seen these, so we asked for copies.
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When I read the formulation and care plan I was acutely distressed. Not only had they muddled up details of my life, so it didnât even seem to relate to me, #EUPD had been added, when my only diagnosis was #autism.
And the formulation actually said âno evidence of #traumaâ.
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And the formulation actually said âno evidence of #traumaâ.
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I sat in the car clutching a piece paper telling me what Iâd shared with the CMHT had been disregarded.
I had given them a summary of the significant traumatic experiences Iâd experienced in adult life.
I hadnât even kept a copy of this, it was far too painful to look at.
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I had given them a summary of the significant traumatic experiences Iâd experienced in adult life.
I hadnât even kept a copy of this, it was far too painful to look at.
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I knew the implications of being labelled with #EUPD.
People with âPersonality Disorderâ are treated inhumanely and discriminated against.
âPersonality Disorderâ is no longer supposed to be a diagnosis of exclusion, but it is.
Itâs a very sticky label, and hard to remove.
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People with âPersonality Disorderâ are treated inhumanely and discriminated against.
âPersonality Disorderâ is no longer supposed to be a diagnosis of exclusion, but it is.
Itâs a very sticky label, and hard to remove.
15/
That day I came close to suicide, not in spite of the best efforts of services, but because they had let me down.
When my partner complained about the formulation he was told the EUPD diagnosis was a âmistakeâ.
It happened when my notes were typed over someone elseâs.
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When my partner complained about the formulation he was told the EUPD diagnosis was a âmistakeâ.
It happened when my notes were typed over someone elseâs.
16/
I could have died
....because of lack of empathy
....because of negligence
....because I didnât quite fit
....because I wasnât involved
...because trauma was ignored
...because of short-cuts
People die like this all the time.
#MentalHealth
#LearningDisability
#autism
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....because of lack of empathy
....because of negligence
....because I didnât quite fit
....because I wasnât involved
...because trauma was ignored
...because of short-cuts
People die like this all the time.
#MentalHealth
#LearningDisability
#autism
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I thought a lot about the person whose record was over-typed to create my record.
Did they actually have EUPD or were they autistic like me?
Itâs so dangerous when mental health services fail to understand the myriad of ways in which people can be autistic.
#AllAutistics
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Did they actually have EUPD or were they autistic like me?
Itâs so dangerous when mental health services fail to understand the myriad of ways in which people can be autistic.
#AllAutistics
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Last night I attended the Zoom launch of @CarolineAldrid5âs book #HeDiedWaiting, @waiting_he, about her son Tim.
I was rooted to the spot as Caroline and @sarasiobhan shared the most painful and personal memories about their beloved sons, who were failed, and who died.
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I was rooted to the spot as Caroline and @sarasiobhan shared the most painful and personal memories about their beloved sons, who were failed, and who died.
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Contact with mental health services reduces our vibrant life stories to case notes.
Tim and Connor were loved and loving characterful young men.
Tim wore a top hat and provided lots of support to his friends. Connor was known as Laughing Boy, and made his sister feel safe.
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Tim and Connor were loved and loving characterful young men.
Tim wore a top hat and provided lots of support to his friends. Connor was known as Laughing Boy, and made his sister feel safe.
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We heard from Rachel whose daughterâs life was saved by a stroke of luck. She spoke to a commissioner who believed her and intervened.
As the mother of adult children these accounts affected me deeply. We can feel immense sorrow but we should also be angry and do something.
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As the mother of adult children these accounts affected me deeply. We can feel immense sorrow but we should also be angry and do something.
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We need a warrior spirit to take this on. And we have to think carefully about how to make a difference.
I stopped short of making a formal complaint because services were already so overstretched.
Instead I gave commissioners a detailed account of what had happened to me.
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I stopped short of making a formal complaint because services were already so overstretched.
Instead I gave commissioners a detailed account of what had happened to me.
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One thingâs for sure, weâve had enough platitudes. Being told we need to be patient, change is coming, itâs incremental.
It says something about the state of things that Iâd have more confidence in Panorama uncovering issues than the CQC.
Lessons still havenât been learnt.
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It says something about the state of things that Iâd have more confidence in Panorama uncovering issues than the CQC.
Lessons still havenât been learnt.
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My local #MH Trust is having a âBig Conversationâ.
Iâm invited to let them know my thoughts on draft plans for the next 5 yrs:
âare we focusing on the right things or is anything missing?â
But even with my professional background what follows needs a lot of deciphering.
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Iâm invited to let them know my thoughts on draft plans for the next 5 yrs:
âare we focusing on the right things or is anything missing?â
But even with my professional background what follows needs a lot of deciphering.
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Itâs easy to make claims about co-production; this should have been the basis for my formulation and care plan.
I wonât give up on trying to make a difference, but I wonât waste time on processes that are flawed.
Itâs meaningful involvement or no involvement from now on.
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I wonât give up on trying to make a difference, but I wonât waste time on processes that are flawed.
Itâs meaningful involvement or no involvement from now on.
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Yesterday @CarolineAldrid5 said she wished sheâd been less meek and made more noise.
But parents who are âdemandingâ tend to be seen as troublemakers and disregarded anyway.
They literally canât win, and yet theyâre often left burdened with guilt, as well as with grief.
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But parents who are âdemandingâ tend to be seen as troublemakers and disregarded anyway.
They literally canât win, and yet theyâre often left burdened with guilt, as well as with grief.
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I want to mention the work done by @GeorgeJulian and @INQUEST_ORG to focus attention on so many lost lives.
The coronial process could easily result in preventable deaths being out of sight and out of mind.
Georgeâs live tweeting means we canât ignore whatâs going on.
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The coronial process could easily result in preventable deaths being out of sight and out of mind.
Georgeâs live tweeting means we canât ignore whatâs going on.
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The way people with learning disabilities, autism, or complex MH issues are treated shows that our lives are valued less than other peopleâs.
The level of neglect sometimes suggests weâre seen as worthless.
Whatâs missing? they ask.
Compassion.
Equality.
Justice.
Love.
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The level of neglect sometimes suggests weâre seen as worthless.
Whatâs missing? they ask.
Compassion.
Equality.
Justice.
Love.
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A sense of humanity that includes everyone, no matter how divergent or âcomplexâ, should be at the heart of mental health services.
Where this is missing we risk being excluded, diminished, or demeaned if we seek help.
In the worst of circumstances we may not even survive.
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Where this is missing we risk being excluded, diminished, or demeaned if we seek help.
In the worst of circumstances we may not even survive.
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Educating the next generations of clinicians and social workers is vital, but they wonât survive immersion in toxic cultures.
We need honesty from organisations where poor care and neglect have become systemic and endemic.
Instead we get gaslighted with management speak.
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We need honesty from organisations where poor care and neglect have become systemic and endemic.
Instead we get gaslighted with management speak.
30/
On our side we have passion, persistence and a common purpose.
Here are accounts you might want to follow:
@waiting_he
@sarasiobhan
@GeorgeJulian
@claire_skill50
@MelanieLeahy
@lovebillybragg
@CarolineJBald
@INQUEST_ORG
@CarolineAldrid5
@MHtimeforAction
#PledgeForTim
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Here are accounts you might want to follow:
@waiting_he
@sarasiobhan
@GeorgeJulian
@claire_skill50
@MelanieLeahy
@lovebillybragg
@CarolineJBald
@INQUEST_ORG
@CarolineAldrid5
@MHtimeforAction
#PledgeForTim
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