My Reflections of attending the ReVerse Workshop

I attended the ReVerse event in July. Not long after being released from a section under the Mental Health Act. I wasn’t sure what to expect. I was interested in an event about bringing together “mental health service users, carers and staff to creatively share insights” and to “nurture reflective dialogue and caring relationships between mental health service users and staff” using poetry and spoken word. I admit I was also a little sceptical. As a service user I find it difficult to get my voice and views heard in the mental health system. This was a free event and this influenced my decision to attend as my only financial income is welfare benefits.

The venue in Manchester was so unlike the many conferences I had attended. It was a relaxed, homely and comfortable space. There was only a small group of us attending. I immediately felt comfortable, although still rather anxious. Breakfast was provided and I got myself a pastry and a coffee. People were very friendly and I began to chat to others. I felt calmer. It was not obvious who were professionals and who were not. I had spoken to David Gilbert on Twitter as I had read some of the poems he had shared. When I met David he was such a genuine man. He admitted that he too was anxious and this sort of made me feel better.

I don’t read much poetry but I write poems as a way of coping with the extreme distress I often feel. I had taken a piece of my poetry with me that I had written the day before attending the event and after splitting into smaller groups and getting to know each other a little more we all had the opportunity to share either our own poems or those written by other poets. Here is my poem.

HELP ME

I haven’t slept for days and days

My mind’s on fire, it’s set ablaze.

Paranoid and in an altered state

The scary voices will not abate.

I feel the wind of a passing train

How did I get here, can’t explain.

People talking but I can’t speak

I can’t stand up I feel so weak.

Rubbing handcuffs on my skin

I try to run but I just don’t win.

I’m rugby tackled to the ground

World is quiet there is no sound

Alone in a cell I’m filled with fear

The monsters in my mind appear.

Trust no-one, it’s a conspiracy

Suddenly questions, I just agree.

I’m taken to a locked up ward

But I don’t go of my own accord

Talking but they don’t understand

The evil voices have full command

Suddenly held down on the floor

They’re hurting me, I’m in a war

I try to fight but I can’t get free

Can’t breathe, HELP ME, HELP ME.

After sharing our poems the group reflected on them. There was no judgment, but compliments and shared respect and understanding.

Feedback was welcomed during the whole event and discussed in a respectful way with all members of the group’s points being valued and heard. I felt really listened to and validated and treated as an equal within the group. As the day went on I felt more and more that this was a safe space and that there was a mutual understanding of mental health and a love of poetry. It felt caring and compassionate. During the lunch break I enjoyed speaking to more people and felt my confidence increase. We were given the opportunity to write a poem after lunch and I wrote one about looking forward to watching the England World Cup game that evening. I left feeling relaxed and refreshed. I made some friends that I still speak to on Twitter. I even read some poetry by famous poets whilst waiting for my train home.

I wrote a poem for David which I tweeted not long after the event:

Instinct

We met just once

Sincerity oozed from his every being

A kind heart

I felt his humanness

His eyes open to light

He touched my soul

When I think back to the event I don’t think too much about the poetry. What I do think about was the feeling I had whilst at the event. The safety, the caring, the no ‘them and us’ and the people there who all made me feel so welcome. It’s not often I feel truly heard as a ‘service user’. This was so different from conferences I have attended in the past, where people (mainly professionals) talk to a large audience and there is little chance of any interaction with those in the audience. I wasn’t a service user with a diagnosis of Borderline Personality Disorder at the ReVerse event. I was simply me.

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Alternative Three Lions Song

(Spoken intro)

It’s bad news from the mental health system

We have ‘disordered personalities’

(Refrain)

It’s got to go, it’s go to go!

‘PD’ has to go!

It’s got to go, it’s got to go!

‘PD’ has to go!

It’s got to go, it’s got to go!

‘PD’ has to go!

It’s got to go, it’s got to go!

‘PD’ has to go!

(Verse 1)

I really know the score, I’ve heard it all before

But they just know, they’re so sure!

That they are the experts and I’m invisible

But I know it’s not true, cos I believe in

(Chorus)

‘PD’ in the bin!

ICD still gleaming

25 years of hurt

I’ll never stop campaigning

(Verse 2)

So many jokes, so many sneers

All those unheard pleas wore me down through the years

But I still remember, restraints on the wards and told that I’m ‘ill’

The abuse as a child but but no compassion

(Chorus)

‘PD’ in the bin

ICD still gleaming

25 years of hurt

I’ll never stop campaigning

(Refrain)

It’s got to go, it’s go to go!

‘PD’ has to go!

It’s got to go, it’s got to go!

‘PD’ has to go!

It’s got to go, it’s got to go!

‘PD’ has to go!

It’s got to go, it’s got to go!

‘PD’ has to go!

HELP ME

I haven’t slept for days and days

My mind’s on fire, it’s set ablaze.

Paranoid and in an altered state

The scary voices won’t abate.

I feel the wind of a passing train

How did I get here? Can’t explain.

People talking but I can’t speak

I can’t stand up, I feel so weak.

Rubbing handcuffs on my skin

I try to run but I just don’t win.

I’m rugby tackled to the ground

World is quiet, there is no sound.

Alone in a cell I’m filled with fear

The monsters in my mind appear.

Trust no-one, it’s a conspiracy

Suddenly questions, I just agree.

I’m taken to a locked up a ward

But I don’t go of my own accord.

Talking but they don’t understand

The evil voices have full command.

Suddenly held down on the floor

They’re hurting me, I’m in a war.

I try to fight but I can’t get free

Can’t breathe HELP ME HELP ME.

An ordinary house on an ordinary street yet the experience saved my life! Maytree – Sanctuary for the Suicidal.

Decided to end my life, the pain wouldn’t stop!

Looked for ways to kill myself on my laptop.

Typed in suicide and came upon a website

Somehow it seemed different, die or fight?

Maytree in London stated “You are not alone”

Should I contact them and pick up the phone?

A risk! What if they spoke like the Crisis Team

Try a cuppa, a walk, a bath, not get what I mean?

Summoned all my courage and gave them a call

Wasn’t prepared for what happened, not at all!

A gentle kind calming voice at the end of the line

Was believed, taken seriously, words can’t define.

Referrals from professionals was never a need

No assessment, just a chat, a stay was agreed.

Only two days later, was on my way on the train

Frightened and anxious, still crippled with pain.

Such an ordinary house in such an ordinary street

Didn’t know Maytree would be a hope filled retreat.

No medical decor, no nurses, shrinks or control

Realised this was the way out of the deep dark hole.

Volunteers, not paid, but there because they cared

A sense that I matter, lived experience often shared.

Began to release this severe emotional pain and cry

Realised that simply being there helped me get by.

Chats whenever I needed them, both night and day

Ears listened patiently, and helped me find my way.

Sat with me in silence, eyes that saw through my tears

Empathetic caring hearts that understood all my fears.

Hugs if I wanted them, how truly wonderful that felt

Drowning, now breathing, had been thrown a life belt.

It made me know that someone else was really there

This touch that said to me, just know I deeply care.

So far removed from detained stays on a locked ward

Validated, heard, little by little my thoughts I explored.

Home cooked food, laughs around the kitchen table

Kindness from human beings, not treated as a label.

Saw my broken pieces, gently held them in their hands

Showed me care and compassion always understands.

Ached for this on that day my will to live was breaking

Souls who knew my pain, the anguish, depth of aching.

Walks in the garden and parks, a small change within me

Felt worthy, felt human, felt loved, they helped me to see.

Started to write and draw all the thoughts in my head

Managed to eat, get some rest, even slept in a bed!

Re-read the goodbye letter they wrote me, so full of hope

We need more places like Maytree to help people cope.

For those people, like me, who are in a suicidal ‘place

Need alternatives when we ask for help – a ‘safe’ space.

How the PTM Framework helped me make sense of what happened to me over the last 5 months.

I joined the Facebook group, Drop the Disorder, just over a year ago. I was happy to find a group of allies. I read a poem at a Disorder4everyone event last June. I attended the Power Threat Meaning Framework launch in January and I thought it had great promise. I also attended the Disorder4everyone event in Birmingham last month which I found inspirational. I have decided to use this framework to illustrate a fairly recent and distressing incident. This is not an impulsive decision. I have been making sense of what happened to me and writing this blog since I attended the launch in January. I have NOT been ‘influenced’ by any other view points from other groups I belong to or any other individuals. Tweeting this blog has been my choice and it is MY meaning of what happened to me.

POWER – What has happened to me?

Power in my life has had a very negative impact on me since childhood. Power in my life in the present can often feel like a re-enactment of the past.

On 1st December I decided to take a break from Drop the Disorder and my other Facebook groups. I told one of the moderators this privately, also stating that I was extremely emotionally distressed due to reasons in real life and that I was presently sometimes finding the group triggering, but that I hoped to return to re-join the group soon. I was sectioned a day later. I received an unexpected email from the moderators on 4th December stating that:

………“We absolutely understand that your self-care must take priority over everything. You have been really honest with us about the extent to which the group feels unsafe and triggering and we cannot ignore the extreme distress you have expressed and attributed to the DtD group.Therefore, we advise you that any request to re-join the group would be declined by the admin / moderator team as we would not feel sufficiently able to meet your expressed needs for a safer space.”…….

……”This decision reflects the duty of care that we have to you, group members and ourselves – the admin/moderator team – as none of us, as individual members of the team, are in a position to accept that level of responsibility.”…….

I have been in contact via email with the moderators since December and asked that they reconsider their ban, stating how this first email had made me feel and asked if I could be given me a ‘second chance’ to rejoin the group in the future when I was feeling more ‘stable’. At first they seemed to change their minds stating on 5th December:

……….“Our decision to decline future requests to re-join the ‘Drop the Disorder’ group does not constitute a lifetime exclusion and, of course, things can change in the fullness of time. However, as previously stated, the primary function of the DtD group is to provide a space for discussion of often difficult issues, and the promotion of activism. The nature and purpose of the group will not change and it will, inevitably, at times feel a risky place. It therefore follows that we cannot guarantee the safety of participants, and the ultimate responsibility for personal wellbeing will remain with individual members.” ……..

This seemed confusing to me and sent out a mixed message as to whether I was or wasn’t banned for life. Therefore, I once again asked for clarification. I received another email on 15 March stating:

………”Your own wellbeing is, of course, an important consideration but it is not the only one informing our decision. Although our previous responses have often highlighted your expressions of distress, alongside general references to the needs of the group as a whole, after careful deliberation – and with some reluctance – we believe it is timely to share some additional reasons that continue to influence our decision making.

In the second half of 2017 we received a number of expressions of concern from fellow group members. While some of these echoed our previously-stated anxieties about your own mental wellbeing and safety, other concerns referred to how some group members experienced your posting in the group. Regarding the latter, it was highlighted that your comments repeatedly deflected the threads away from the original poster’s topic onto discussions about your own situation and challenges. In this regard, people stated that they felt either silenced by your contributions or obliged to respond to you when their interests lay in the original post. A few complainants highlighted what they regarded as excessive commenting and, while some group members clearly valued your contributions to the group, others described experiencing them as ‘excessive’ and ‘overbearing’. Although we accept that these negative impacts were never intended, and that perhaps you were unaware of them, it is clear that aspects of your group activity were perceived as unwelcome by some fellow members of our DtD group.

As stated above, we relay this information with a degree of reluctance, fearing its impact on you. Perhaps we should have shared this earlier, but we hope you can appreciate the challenges experienced by admin/mods in such situations, particularly when the complainants wish to remain anonymous. Rightly or wrongly we opted to keep the information regarding other members’ complaints from you; we can only apologise if you feel this action was misguided and that we should have shared these concerns before now.

We trust you can recognise that we will not be in a position to enter into any further discussion about this matter.”

This still didn’t actually answer my question as to whether I would ever be allowed to re-join the group and so I asked again. I received an email on 30th April from the moderators AND their consultants:

“We don’t think we’ve used the phrase ‘banned for life’ but equally we are clear that we are not able to reconsider our current decision.”

I have been denied access to the connections, knowledge and information within this group of allies where I felt valued and a part of an activist movement. This has had a negative impact on my sense of self and identity and has led to threats and threat responses.

This feeds in to the power/powerlessness dynamic that has affected me all of my life. I have no choice or control in the situation and feel that once again assumptions have been made regarding my level of ‘risk’, and that responsibility for my own ‘self-care’ has been denied.

THREAT – How did it affect me?

Rejected, invalidated, dismissal of my views, betrayed, let down, lack of trust, excluded, discrimination, devalued, ashamed, lack of self-worth, meaning and identity, sense of injustice, silenced, hopeless, pathologised, marginalised, loss, bad, shame, powerlessness, inferior, guilty, judged, angry, victim-blamed, attention seeking and disordered……..

THREAT RESPONSES

I was already severely emotionally distressed when I received the first email, and knew I would most probably be sectioned, but this exacerbated the threat responses I usually have and I coped in a way I usually do in order to survive. I will not go in to anymore details.

MEANING – What sense did I make of it?

I feel that the whole issue hasn’t been handled well by the moderators, which led me to the threats I felt, and to some extent, still do. It is difficult to communicate by email or messenger and I think assumptions were made by me and the moderators which led to a feeling of meanings being imposed on my feelings and behaviour. I did suggest chatting on the phone but this was refused.

I thought my voice was valued by all in the group. Most of the posts I submitted were approved by the moderators. The moderators themselves replied to some of my posts with comments calling me a ‘warrior’, ‘solidarity’, ‘chuffed for you’ and ‘#YouRock’. I was asked to contribute at the Disorder4everyone at some point and asked if I could read it at the event last June. I was delighted and overcome when I read a poem I had written. I have met several of the moderators and consultants in person on various occasions. I felt an equal and a true ally.

Perhaps I got carried away with this feeling of being valued and of the telling of ‘my story’ and the ‘difficulties’ I have and do have. I had hardly any negative comments in the group and in fact so many members commented so positively. But knowing now, that there had been ongoing complaints about me for months before I left the group has made me feel like a fool. Perhaps I have an ‘Excessive Commenting Disorder’? The awful thought of some group members seeing my comments as derailing, overbearing and that they felt silenced or obliged to respond to my comments has made me feel so very guilty.

I had never been told by any of the moderators that I had broken any of the group’s code of conduct whilst in the group. Admittedly, I was sometimes emotionally distressed whilst in the group (due to the bad things that have happened to me) and of which the moderators were aware. This distress was due to real life issues and I suspect sometimes triggered by posts and comments in the group. This distress, I think, came out in a few comments I made during the year that I was in the group. I also spoke to one of the moderators about this distress on a few occasions. I had also asked for them to follow the group guidelines regarding trigger/content warnings on a couple of posts and stated that the group wasn’t trauma informed. I take some responsibility for the posts and comments (I know at this present time that the group can never be trauma informed due it’s activist nature) although when paranoid, dissociated, triggered and hearing voices this can be difficult as I can write things and then when more ‘stable’ regret this. During the last few months of being in the group I confided with the moderators that I was transgender and I’m really hanging on to the fact that this did not play a part in my not ever being allowed to re-join.

Since I had the first email in early December I have had so few ‘likes’ from any of the moderators on Twitter. Yet, whilst still in Drop the Disorder I had many RTs and ‘likes’. What changed?

I sat through the Power Threat Meaning Framework Launch in January with the words written by the moderators ringing in my mind. I attended the Disorder4everyone event last month and whilst listening to the non-pathologising, non-victim blaming language and the urge for people to tell their stories I remembered the emails I had been sent word for word, started to cry and had to leave the room for a while. I was hoping to speak to one of the moderators in person in a polite and reasonable way and had rehearsed what I was going to say. Unfortunately, the moderators were obviously very busy and so I did not feel the time was right and to be honest during the event I felt there could be a risk of further rejection.

I feel that the moderators and their consultants are saying that I’m too disordered to ever be in the group again. I wonder why I can never re-join? I thought the ethos of the group was that people can and do ‘recover’ with the correct support. I feel they are saying that nothing will change for me. I wonder how ‘un-disordered’ I would need to be to be allowed to re-join the group?

The meaning of what happened to me is my reality of what happened, but I guess the moderators will have a different view. However, I felt the need to tell of what happened to me. For too long I have been silent and trying to understand the power, threat and meaning that has happened since I was a kid. The example I have written about here was totally unexpected. I fear some kind of backlash to publishing this blog but I wanted to show how, what may seem insignificant to other people, can have such a huge impact on me. It’s such a shame that it happened in the first place. I still send solidarity to anyone fighting to drop the disorder and who supports the Power Threat Meaning Framework. In solidarity!

WHAT ARE MY STRENGTHS?

I still have a ‘voice’.

I continue to activate to drop the ‘Personality Disorder’ label.

I’ve recently had an article published in the ISPS ‘Psychosis’ Journal.

I am hopeful that the PTM Framework will make a difference.

I have the lived experience of trauma and power that I can use to try and make change happen and am still trying to get funding along with my mate to open a non-medicalised out of hours safe place/crisis cafe opened in my local area.

I have, and give, support on Twitter.

WHAT ACCESS TO POWER RESOURCES DO I HAVE?

I feel very powerless at the moment. However, although there is a power imbalance as in any therapeutic relationship, the psychologist I am currently seeing has helped me make sense of being ‘dropped’ from Drop the Disorder by using the PTM Framework.

DROP THE ‘DISORDER’! – MY POEM (June 2017)

Firstly, I want to say how much the online group Drop the Disorder has changed the way I think about myself. I came to the group with suspicions that I wasn’t actually mentally ill and that the diagnosis I had been given wasn’t correct. However, having been in Mental Health services for the last 25 years, I must admit that somewhere inside me I thought of myself as a hopeless sad ill patient, who had no fight left to challenge my diagnosis or treatment.

Since joining the group 5 months ago I have been able to express my views and tell of my experiences and some of my story. I feel like an equal in this group. I feel validated. I am now making a change not only in my own life, but for everyone who has been labelled with a ‘diagnosis’ and all that goes with it.

Being invited to read my poem, and standing here right now, alongside so many professional people, is life changing to me.

I dedicate this poem to my brother, Keith, who took his life 5 years ago and who I miss each and every day.

The poem is an account of my experience of being ‘diagnosed’ with ‘Borderline Personality Disorder’ which I have abbreviated in the poem as BPD.

 

DROP THE ‘DISORDER’

Please drop the ‘Disorder’

I find it so out of order!

I’m not this ‘diagnosis’ of BPD

Can’t you see that I am me?

 

“You’re mentally ill for goodness sake”

That was enough to make my heart break

One of the hardest thing I have endured

Was when you said I would never be ‘cured’

 

I never asked or wanted to be labelled

It must be my fault, I’m ‘ill’ and disabled

I don’t know who I am or know how to be

I don’t even seem to have my own identity

 

So please drop the ‘Disorder’

I find it so out of order!

I’m not this ‘diagnosis’ of BPD

Can’t you see that I am me?

 

“Medication’s the answer for people like you”

You are the ‘experts’ so that’s what I do

I don’t say a thing, you may think I’m insane

You won’t understand, and I just can’t explain

 

I need all the drugs taken from out of my head

Some days I can’t even manage to get out of bed

Side effects – I’m numb and can’t feel my emotions

I don’t feel alive but just go through the motions

 

So please drop the ‘Disorder’

I find it so out of order!

I’m not this ‘diagnosis’ of BPD

Can’t u see that I’m me?

 

I tried hard to tell you my story whenever I could

But you never heard me, left so misunderstood

Something traumatic and bad happened to me

You’re re-abusing me again why can’t you see?

 

Stigma, assumptions and things that you say

I really wish you could be me, just for one day

I try to disagree when I have the energy to fight

“Failing to accept your diagnosis, you lack insight”

 

So please drop the ‘Disorder’

I find it so out of order!

I’m not this ‘diagnosis’ of BPD

Can’t u see that I’m me?

 

You dwell on my ‘symptoms’, all my ‘negative traits’

This makes me frustrated, my anger exacerbates

You don’t see them as strengths I have used to survive

Yet these are the things that have kept me alive!

 

Forced into hospital reinforces that I’m ‘ill’ or ‘mad’

My personality is flawed this must mean I am bad

Yet more medication, just left to cope on my own

And so it goes on invalidated, ignored and alone

 

So please drop the ‘Disorder’

I find it so out of order!

I’m not this ‘diagnosis’ of BPD

Can’t you see that I’m me?

 

I’ve seen some of the words in my copious notes

Manipulative attention seeker is one of the quotes.

It must be my fault I now find it too hard to trust

Yet somewhere deep within me I know it’s unjust

 

Care, empathy and compassion is all that I craved

Support for the trauma, like my scars, so engraved

To start to undo all the distress, and help me believe

Surely don’t I deserve some hope, some reprieve?

 

So please drop the ‘Disorder’

I find it so out of order!

I’m not this ‘diagnosis’ of BPD

Look closer, really see me; I’m GARY

Trauma – Finding Solid Ground

I’m sharing with you this poem, not for sympathy or proof

I’m daring to say it right out loud, because it’s my truth!

Somehow I’ve managed to survive but never ever thrive

You see I’ve been a victim of trauma, since I’ve been alive.

 

An ACE score of eight, from a baby to a teenage kid

Abused by my husband for twenty two years, until I got rid

The suicide of my brother, who is miss each and every day

Yet, I continue to be jealous that his pain has gone away.

 

Re-traumatised by Mental Health services since 1993

A walking diagnosis, a set of ‘symptoms’ is what they see.

A non-human ‘psychotic borderline’ with many negative traits

Control, coercion, sectioned restrained, my anger exacerbates.

 

Forced into hospital reinforces that I am ‘ill’ or mad

My personality is flawed, this must mean that I am bad

Yet more medication, just left to cope on my own

And so it goes on, invalidated, ignored and alone.

 

Since the last gathering I’ve hung on to a distant feeling

Even when death seemed so very very appealing

Days of unconditional humanity, something inside me awoke

It kept me alive, this faint heartbeat of hope.

 

Something deep inside of me is slowly beginning to change

A tiny seed planted, to have self-compassion – not rage

It feels so very foreign to me, but I carry on trying

Small baby steps for the ‘little me’ who inside is still crying.

 

Once again at this gathering, it’s overwhelmed me again

The caring human connection floods back into my body and brain.

Patience, kindness, and calm in this special supportive space

Had again made me feel valued, truly seen, heard and safe.

 

Empathetic caring hearts that understand all of my fears

Ears that hear what I can’t say, eyes that see through tears.

It’s the sweetest human contact for my body and mind

It’s the compassionate connection where two bodies link and bind.

 

I can’t express how thankful I am of helping me stand tall

I stand here stronger, due to the solidarity from you all.

Whenever dark times descend on me and try to bring me down

I’ll think about these gatherings and reach out for solid ground.

#Madtwitter I thank you all

Dear YOU

I hear you

I care about you

I’m with you

I thank you

Here’s to survivors

So thankful for us all

For caring, not judging, for breaking our fall

For just being us, a crutch by our sides

For dragging us through life’s rockiest rides

When life is hard and we struggle to cope

So thankful for those with stories of hope

So thankful for survivors who help us stand tall

We stand stronger together in solidarity for all

Thanks go to survivors who knows where I’d be

Without their support and great empathy

They’ve taught me the very best use for my mind

The best gift of all is simply be kind

GARY

I’m not going to justify the name change. I don’t feel I have to.

What I do want to say is that my family have not accepted this since I told them almost a year ago, they laugh at me and tell me I am ‘ill’. I love all my family. Some of them, especially my three grown up daughters, love me back. I haven’t changed my FB profile to the name I identify with as I can’t stand to lose the people I love even though they can’t accept ME. I can’t cope with using two Facebook profiles as I hear voices and have many ‘parts’. I wouldn’t manage switching from one FB account to another.

This will no doubt cause confusion to those reading this who are in some of my closed Facebook groups as I will continue posting (at present) under my birth name until I decide whether to change the name on my profile to the one I identify with. A dilemma as I don’t want to alienate the people I love but who can’t or choose not to understand. Neither, though, do I feel comfortable with keeping this secret.

A shout out to the Facebook group ‘Recovery in the Bin’ for accepting my post, for supporting me, for the advice I asked for, and for calling me by the name in the title of this blog.

What I also want to say is that some people I thought were online ‘friends’, that I thought would understand when I told them about my name change, have already told me “you’re confused”, “it’s a phase”, “don’t talk about it”, “I will still call you Kat” etc etc.

Already, since last night, I felt the need to change my preferred Twitter profile picture to protect myself from direct messages full of hate that I received within minutes. I settled for the one shown above. A picture of me as a kid.

I have been ‘emerging56’ on Twitter for a while now. I am indeed emerging in many ways. The name I use now has been part of my emergence since birth. I have always been a people pleaser. Well now maybe I am pleasing myself. I have kept many secrets since my childhood. It hurts keeping secrets. Take it or leave it. I am ME.

Not asking for advice so be grateful for none being given.

My Local Resolution Meeting Today……The Outcome

After an awful night last night after i received and email at 7.30 from the complaints department stating I could only discuss the inaccuracies of my response regarding my compliant and none of the things I had actually complained about in the first place!

I managed to get to the Local Resolution Meeting and decided that there was no way I wouldn’t get the agenda I had written heard. I took a bicycle lock and a placard and was prepared to chain myself to a radiator if I was not given what I have been asking for during the last 25 years.

They tried to steer the meeting to their won agenda by saying I could only discuss the inaccuracies in the final response I recited from the person who investigated by formal NHS complaint. I said that it was my meeting and that I had sent them my agenda and that was what I was going to discuss.

I asked for the meeting to be digitally recorded this was done and I will get a copy and a full transcript.

Medication: After producing and reading all the evidence I had researched for weeks e.g. NICE guidelines for ‘BPD, Will Hall stuff, Ashton Manual, UN Human rights report 2017, tweet by Wendy Burn (president of RCPsych) stating medications don’t work for BPD, can make it worse and tweet from RCPsych stating chemical imbalance is not accepted by them. I then asked as (per the response I received from the person who investigated my complaint) to be referred to a Consultant Addiction Psychiatrist. I finds this ironic as the psychiatrists I have seen are the ones who made me dependent on medications. This was agreed.

I then asked for a reduction of all of my many medications, with myself being in control of which I started to taper first and as slowly as I want and to take any withdrawal effects taken seriously and discussed regarding dosage, and to be closely monitored. I said I wanted liquid diazepam and or tapering strips if needed. This was agreed. They had no idea I knew so much.

I also stated that I would be prepared to take meds if it saved me from being sectioned but only with choice, duration and side effects and withdrawal effects clearly discussed.

I told the locum psychiatrist I’m no uncertain terms that stating I had a chemical imbalance is incorrect and that he had offered me more medications the last time I saw him (despite me telling him I wanted to eventually be meds free) and that he had not given me informed choice. The psychiatrist did not say one word during the meeting that lasted one and a half hours apart from when I asked him if was aware of the Ashton Manual to which he answered “No”!

I discussed by diagnosis and it has been changed to ‘CPTSD’ with ‘BPD’ traits……yawn. I argued the ‘BPD’ point and this is to be discussed with my clinical team with me having a chance to submit my reasons in writing.

I asked about 1-2-1 trauma therapy and was offered to see a male psychologist. Even though I have been denied this in the past because “I am too complex and self-injure”.i did say that I would prefer not to see a man and there was talk about seeing a lady psychologist from another team.

I was crying part way through and went out for a bit. Listened to James Moore’s song for a bit whilst having a cigarette lol.

Went back in and responded to the handling of the complaint itself and asked for a written apology which was agreed. Asked for a written apology from the clinical director who investigated my compliant and had replied with so many inaccuracies. This will be looked into. Asked for a written apology from my Trust for the way I have been treated because of my diagnosis of ‘BPD’ for the last 25 years. Not holding my breath in that one.

So you can see I didn’t need to chain myself to a radiator and it is a better outcome than I imagined last night. It gives me some hope that I can get out of MH services and off medication even though this may take years. Hate bigging myself up but I felt like a warrior when I left especially considering how out of control and severely distressed I had felt last night. Finally some hope!