Engagement session wobble Care Navigation

Today I thought I was looking forward to today’s service User Carer meeting with the Royal College of Psychiatry we was looking at Care Navigators and what a good one looked like, I was all psyched tell them about Tims Navigator Gary Wright the one who went above and beyond for Tim the one who did everything for him the one who services let do everything for Tim but never checked in on was everything ok, never got back to Gary when he had concerns, Gary helped Tim with many aspects of his life even tried addressing Tims mental health needs. Tim was only meant to have Tim on his books for a few weeks but he knew Tim needed intensive support an was not getting from statutory services. I was all excited to share some of the good out of the sadness I tweeted, fb an linked in an update and a pic of Gary with my mum in his fun run tshirt he did a 10k for Wyfi an ran in memory of Tim. But the closer the train got to kings cross did overwhelm swallow me up, I became over stimulated, hyper sensitive walking down to the Royal college of Psychiatry after getting of the tram felt like walking down a minefield the noises of passing traffic, work on nearby buildings, footsteps pounding down the street felt super sonic my mind went into a haze, mentally shutting off, instincts saying can’t engage today I’d triggered myself consciously I thought talking about wyfi been a good organisation would be ok but subconsciously I was challenging why other organisations that came into contact with Tim didn’t do same, i was winding myself up. When I arrived I saw the slide on what we’d be discussing I sat in my seat eyes fixated on the screen I got this but boom tidal wave hit floor was swallowing me up, hands face burning, dry mouth, knees buckling, heart pounding I had get up, I had flee, I made a coffee got upset wiped myself down berated myself I went back in I tried inputting, sharing ideas but everything felt amplified an that made me feel trapped in , hemmed in, panicked which then makes me reactive I know a good navigator why could I not get my points across with going into overwhelm felt not listened to felt I was fighting for something good I felt challenged but probably wasn’t, Care Navigators though I passionately believe in, I know what I’d want in one, I know the type of relationship we’d have I know how I’d want them engage with me, my family an all areas of my life the physical, mental an social but today just not on ball. One of members of group gave me a cuddle I broke its hard fighting for good, it’s hard engage with services it’s even hard engaging when at an engagement meeting. It’s hard though things regarding Tims inquest been know at a standstill and it weighing heavy in my thoughts an heart and today threw me off my A game I’m hoping sharing the slide someone could answer the questions on to them what they’d want a navigator look like because I’ve completely disengaged as I no longer trust the model or service or that they’d get right hoping people can though get their voices heard an I’ll happily forward your thoughts to team an you help me to try focus an be engaged whilst am a little wobbly today taught me need practice self care when engaging in engagement work and trying fight to make change an fighting for answers for tim my brother an best friend. Today wasn’t a good day but won’t let it sway me I’ll brush myself off and try again another day

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Expert by Experience, patient leader do we really make a difference

Do patient leaders, experts by experience really make a difference are we really valued or are we just another resource a tick box they can fill in completed on an equality check monitoring form. In May 2011 I had my own transformation my year of recovery I came of quite a lot of antipsychotic meds, stopped been zombified and learnt to feel emotion. I took control of my conditions I come to understand my head was not broken it was coming to terms with things I’d faced childhood abuse, losing a child born stillborn I got involved with supporting local an national mental health based charities an became a health champion, I spoke at NHS England an Kings Fund Events a top professor once quoted something I’d said today we’ve heard the word baby steps and the impact on recovery an tackling health inequalities an that with work they were doing they’d taken theirs an we’re then gonna take their steps, with Kings fund I challenged that people that volunteer are not exploited it’s our choice to do we have our own reasons for doing so, but doing none of those things mattered when I had my son I was still as seen as the person who’ll once had chronic an enduring mental health conditions an was sadly detained to the maternity department an risk assessed to prove I wasn’t mentally unwell anymore or a potential risk to my child. My brother Tim he became mentally unwell I knew the system was once were I was held was once were I was broken but too thought recovered from and I tried fight for his needs, fight for him get support begged for rehab for him, when in court in an unfit state tried ringing around finding him somewhere that could support him but failed an he did a short stint in prison when came out tried to get him help then too sadly believed services had changed but sadly I learned lives harsh realities they hadn’t an systemic failures ultimately led to my brother’s death again I’ve come out fighting trying get lessons from his death be learned from but I’m not an expert by experience or patient leader nor service User or Carer I’m someone’s sister, I’m the sister of someone who died too soon who had so much to give, to offer a live worth saving, I knock know on the doors of places not because I profess to be an expert or leader or voice for the vulnerable but be the voice of someone who wasn’t heard that someone were lessons could be learned from his death too could save lives but sadly his voice his story is one people not ready or hear or address because substance misuse, mental health an Deaths in community are not priority or high up on any radar or agenda an no mo or head of state interested in because not something they can use to boost their egos an popularity and so I sit and ask myself are we really valued and if are then why is it that still get treated as person once was, in kid gloves, their their your story was inspiring one need be heard but yet no one takes chance to work together with you to create new ways of working, explore and fix the systemic failures, get you involved working in the areas we’re you could be utilised make a difference but then I remember I was just someone who was once labelised ive dropped it but it still be expected elsewhere, I was just someone’s sister so not a professional or expert. I’ve also come realised professionals high up still have to fight same fights we do and from Twitter these last few weeks Psychiatry an pschology will always be at odds , service users will always have fight for their rights and at times we’ll even be against each other for services to want help me it’s either from a Dx point or know understand my traumas what about plain an simple what can we do katie, Do we really as patient leaders or experts by experience make that much difference because sitting back these last few weeks and questioning I question we don’t we’re just another useable source or commodity tomorrow it will be a different bus Health and social care go journey on an will be left fighting that little bit more so what do u need do have that voice equally valued the live experiences trually grasped harnessed an sadly learned from has true coproduction been established or is it all really different stages of involvement been dressed up but the moment question I ask myself did I make a difference when I started my original objective to get change and sadly I did not because I know mourn my brother, my best friend an still fighting for change but their will come a day I’ll one day say enough is enough and that will be day when realise equality an valued working together in partnership dosent happen as it is still very much a pipe dream.

Everyday

Everyday I wake I pretend to be ok, I plod on I have too I’ve no choice I’ve a son who needs me, but everyday I wake with the stark reminder my brother’s gone, I go to phone his phone see how is scroll for his number but when get too am held back from phoning, when I’m on Facebook I go check his see what funny pics hes posted but last years worth of posts on his wall are ones I’ve tagged him in hoping in heaven he somehow see’s. I’m laid here now tears slowly streaming down as I thing about him wishing he was still hear, I wish he could say he was ok wipe my tears tell me to get some sleep, it’s late and ask me why I keep waking up at daft o clock in the morning an just lay staring into space. I wish I could scream at him yell at him call him selfish god knows what but I can’t because what he did the day died was a stupid an desperate attempt at get someone to listen to him, help him. I refuse believe he was giving up on life on Mum, on me , on jay n nat n robynn an our kids because kids especially were his world just as he was our’s. I know his Mental Health drove him crazy it did us too we were at a loss time an time again not only Tim reach out for help we did too, We’ve had no support, nowhere to turn too we’re now banging our heads against why an getting people address an learn from failings in his care just as much as Tim banged his head against brick walls trying to get help, I often wonder why no one supporting Tim picked up on the signs he was not ok did not notice him slowly disappearing from the picture, disconnecting with his volunteering, cutting himself off, I often wonder why placed somewhere he didn’t know felt lost an outsider out of his comfort zone not knowing anyone an stuck not getting help from somewhere supposed be supported, Everyday I taunt myself ideas, thoughts reading through paperwork we get passed trying put the jigsaw together but all I get is more questions never getting close to the bottom off never getting the answers to what went wrong not been able fix lessons be learned from. Everyday know feels like a constant pressure a heavy weight trapped in a cycle a haze a whirlwhind trying to clutch to something that will help get the answers and piece together the solutions but everyday feel dragged further an further apart. Every is now a struggle a constant dark fog of grey mist but can spark to red mist when see something or hear something and become hypersensitised too, Every day draws on longer an longer , lonelier an lonelier it’s isolating , it’s frustrating it’s become the loneliest place ever now has the world an it’s hard to paint false smiles, it’s hard show interest in the mundane on one hand want friends an people to care on other you don’t because they can’t fill same space they’re really not person you want see an you want them be good enough but sadly aren’t they can’t fill the gap, can’t step into shoes, interact same way can’t be just like Tim. When out an about my mind will play tricks I’ll see people who look like him chase voices of people hear who sound like him and when realise not is then a slap to face harsh reality hits not him I should remember but I don’t because try pretend switch off from, yearn escape the realities off but can’t I have persevere, try pretend I’ve cracked self maintain the mental health but only just doing dangling by a thread. I wish could wipe the cobwebs off me away, wish could erase the past put Tim back in we’re should be but can’t I’ve just to try face. Accept an one day grieve I don’t want have battle everyday for answers why failings I want put measures in place to prevent deaths like Tims an I’ve to do so logically piece the jigsaw to be able then mourn in peace in a graceful way not angry with tormented by an we’re feel no pain. I don’t want to talk about or thing about but nature of his death but. sadly because can’t grieve an trapped by fights for answers for am stuck in a tidal wave of thoughts about preventable suicide, patient safety, breakdowns, communication , systemic failings I want to pop the thought bubbles, push them away, take a break from just for one day wish could go back to before Tim changed before he passed so can try get normalcy in my life back regain control am make everything ok again.

I’m not scary, nor psycho, I’m nice when get to know me.

On the 1st of February it’s Time To Talk Day I for last few years not partaken in for various reason’s but this year I have because it’s dawned on me people don’t rarely get to try and know me, talk to me, have painted a not nice picture of me not taken time to get to know me or Try understand me they’ll look down when I pass, try look busy, let’s not ask Katie how she is,

These last 18 months have been the most loneliest an most challenging especially with trying raise a toddler an self maintain having PTSD and I was hit with losing my brother to a preventable suicide an passing of my grandad closest thing had to a Dad.

These last 18 months I’ve struggled felt isolated people’s lives moved on mine didn’t , people didn’t want ask me how I was after my brother’s death because they didn’t know how I’d react I’m pictured as an angry, volatile person because have gone 0-10 on blow my head shouting scale but people don’t realise if I persevere I or my sons at threat I will become heightened an will react an I will use certain instances to react because the things that I don’t want to nor ready face come to terms with an deal with I try ignore but I get overwhelmed by something as simple as someone telling my child off is enough to spark that fuse and I’ll explode and I understand that when I explode it’s not a pretty site, I hate myself after it , I will bully myself turn in on myself I attack an put myself, I’ve also been known in certain situations known to suddenly drop everything and run because I don’t want people see the upset, the pain I don’t want people see me react me be weak, be vulnerable, don’t want feel trapped, panicked and nor do I want explode so see I’m stuck in a catch 22 do I blow up, do I let you see me upset.

I can’t though let you see me upset because you’ve not given me a chance, got to know me, not got to understand me a handful of people do they don’t see me as a scary, psycho mad person they see the scared person the person that’s hurting they see past that side of me they know it’s something that’s part of me can’t change no amount of therapy an anger management an counselling will help I’ve just had to adapt, to accept that’s one of my traits and angry Katie is only a small part of me but it’s the part that stands out.

It saddens me and hurts me that people may feel intimidated or scared of me because I’m not a scary or bad person nor am I violent I just get aggressive but that’s because I trying be assertive an protect myself but it comes out like a loud screaming banshee and I’m not that person all the time just a small percent off but because people don’t get past that point sadly the world does become lonely an isolating I try pretend it doesn’t hurt, try ignore how people are, I find myself now to avoiding people because when you stop to talk I struggle know what say, can’t pretend alls ok when not, selfishly don’t want hear how lives great don’t want pretend neither it is and rather not have people squirm , cut short conversations when do try open up because then I’m protecting me not opening up, exposing myself protecting my heart, ,my well being my self care.

Learning how to feel live with my emotions was a blessing at first but not so much at the moment because how now perceived when hit a stumbling block an working way through, medication, therapy hasn’t been an option for me I don’t yet trust services because how I ended up in past an because failings which led my brother’s death I plod on try attack get through each day one at a time.

If people took time to get to know me, too ask , too be my friend they’d see the nice Katie, friendly one,one whould go try out way make sure is ok but people struggle give me a chance I need people do that because it’s only way I’ll be able let you in because I struggle let people in because I’m that used been hurt, rejected people pick up on perceptions on me that I don’t let my guard down an sadly even though I’m extrovert need you make first move an try.

Theirs been days I’ve felt that lost, that alone questioned my existence have had days wished not woken up because don’t want go through life perceived something not, wanted life go back how was too been good but I can’t change the last 18 months just try get me back in check an I’m doing slowly but sadly I’ll always be held back if people can’t see past a small part of me.. and so for Time To Talk Day I wanted to address people picturing me as a monster, psycho, a person feel intimidated by because deep down that’s not me also I want people too try understand how when your anxious, feel at risk an have ptsd you don’t see logical ways out and when we talk about Mental Health we don’t talk much about anger, and how anger is a part of Mental health an how anger has people perceived an so I thought I’d through my blog challenge an address because here’s safe do I can be vulnerable because I’m hid behind the keyboard however tomorrow u may see me in person an if do just try say hello wish me a good day make me feel visible, accepted a chance belong because I do try my very best and don’t want to be seen anymore as scary, psycho Katie and so I hope on Time To Talk Day people see past someone’s Mental Health an see the person that’s within.

Finding a way saying goodbye losing my brother to a preventable suicide

I lost my brother to a preventable suicide he fell through the cracks systemic failures by the trust an social care team under and the supported housing team were he lived. It’s the worst way to lose someone you can never prepare for, comprehend an understand why. I lost a baby born still born in 2002 I knew she was to be born stillborn due to severe spina bifida an hydrocephalus I knew as she took her last breath I’d hold her in my arms I’d kiss her on the head and I’d say goodbye, I lost my Grandad back in February 2017 I called in on the Morning of the Day he died to the hospital the Doctor told me that day when my Nanna came in they’d be stopping his medicine, taking his oxygen away he was getting put on an end of life Pathway, I went up to my mums saw my nanna an held her told her prepare for worst, I went to lighthouse academy my friends held me up, prayed with me I was preparing say goodbye. That night I went back to the hospital treatment had been stopped, as many family members as could were contacted, notified mad dashes to the hospital, he was surrounded by family held he was not in pain nor alone I got to say goodbye even though I wasn’t ready. Nothing can prepare you when you lose a loved one to Suicide because you can’t see it coming, you don’t expect if you knew or had a chance you’ld do everything in your power to stop from happening. This week I read in our legal teams argument for Article 2 systemic failings led to the events of my brother’s preventable suicide , I read that my brother had already passed when the paramedics got too him and probably had been a no of hours it breaks my heart to know he was lost, alone an in his final hours an until found had died that way. I wasn’t their to hold him, my mum didn’t get hold him even though an adult was her baby she did didn’t get that chance like I did with my baby somehow prepare an be their and like with grandad we knew we all surrounded wrapped round him he’ll have felt an known was loved I hate the feeling that losing my brother to a preventable suicide has done I hate knowing he may have felt unloved, unworthy, uncared for because he was. Losing a loved one to suicide is not only their lives lost but also part of you, your family dies too it feels strange, unnatural, not right, it’s broken, fractured, damaged your heart, the heart of your family dies too you get swamped into a dark hole, dark skies descend over all you know, life, joy gets zapped from you. I hate that I didn’t know, didn’t get chance stop, didnt get hold my hand out pull him back, I hate that I didn’t get say goodbye I hate that I don’t get angry at him, I hate that I can’t ask him why, I hate that I can’t bring myself to hate those who failed him, I hate I don’t have an axe to grind I hate that I want to give them a chance to learn lessons from his death I hate it’s been me, my family who held out that olive branch and I hate that they’re reluctant too take I hate that I can’t hate them want give them a chance I don’t understand why because they robbed me of my brother, my best friend , I want scream, yell call them murderers because of their systemic failings but I can’t because I know he deserves more, I know I’ve to give those a chance who failed him, I’ve to fight the legal system for article 2 to make his life matter, his memory, his life be remembered, he be remembered as someone who deserved help, be supported, cared for, a life worth saving and him not be just another life sadly lost to suicide, him not be a statitistic because he was worth more than that. Losing a loved one sadly to a preventable suicide flips your world upside down an know all can do is try make sense off and fit the jigsaw puzzle pieces together that led to that day to understand why and then with that completed puzzle find a way grieve, mourn say goodbye an try prevent someone else from sadly taking their live, give those that failed ideas to come up with pathways, measures to build safety nets to try ensure dosent happen again, I don’t have anyone can go to that can talk to about so I share my feelings here in my blog I know people struggle to talk to you about, ask how help, I know because I struggle with too. I hope that people reading who are in same place my brother was would contact me so I can help you so you don’t do what my brother did as you are worth more than that, for those that have lost a loved one to suicide to feel free contact me you are not alone it may feel it but I know the pain you feeling I feel it too, to Services, councils, NHS trusts social care providers that want make a difference to people affected by addiction, mental health and homelessness and put mental health on their patient safety strategies or looking at suicide prevention of people society turns their back on we’re culture around people with combined needs or are seen as unsafeable or attitudes around personality disorders needs challenging or your pathways not inclusive your not getting everyone on one or you need improve your community contact me if you genuinely want learn knock on my door because like I said lives like my brother’s matter let’s work together an make a difference I can’t bring him back but his memory, story can help save life’s.

Heaven’s Angel wish granted sorry too late for you to see x

Dear Timothy,

My Big Brother, My best friend, One of my Angel’s if Heaven, Darkness has shrouded me since the day you died the pain I’ve felt uncomprehendable an unimaginable a pain I wouldn’t want wish on anyone, the pain an suffering you too faced in the last 2 1/2 years of live wouldn’t wish on anyone either. When you were alive you had a wish I didn’t grant a wish your nephew my son Myles met our dad and for him have a chance meet him an be a Grandad to his only Grandson. To you dad was your hero, your best friend you saw past the alcoholism you loved the times you had with him down at the Brown hare you never got over dad finally having to go into a care home for his own safety it was like part of you died that day the day you felt you’ld lost your best friend an I know hate feeling that same pain, I didn’t have the same relationship with Dad as you did I did try when he first went in to the care home have one but then in 2009 my own Mental Health deteriorated to point I spent Christmas that year sectioned and detained in hospital it took me a few years recover from in 2012 I went through a major relationship breakdown lost the home I’d thought have my ever after in an had create a new identity for myself as part of that process an as part of that process I didn’t want have Dad in my life I blamed him for not been in my life when I needed and wasn’t their protect me from been abused wasn’t their shelter me from pain of losing Marybeth and I hated knowing at time I was going through that he was in Pub opposite and so in my mind if I deleted him from my life I had a chance move on from my past. When Myles was first born I did think about letting him see him but the bitterness an anger I felt about him not been their made me have attitude he didn’t have that right be in my life or Myles, I know that you respected that decision but you were also hurt by as you so much wanted dad see him and I’m sorry I never listened, never told you how I felt maybe you’ld have understood an we’d have worked together and compromised and we’d have took Myles together. The day of your funeral was the first time in years I’d come back into contact with each other he looked lost, he didn’t look like our dad but still he automatically was Dad all way through the service he sat next to me and held my had, did cuddle me as I was upset and walked up to your coffin with me and held my hand as I told you it wasn’t goodbye but see you when times right an for you go be one of heaven’s angels an be with my Marybeth. After your funeral I did give dad some photos of you with Myles and I did think about going and see him and take Myles but I wasn’t ready also Grandad was very poorly and he too sadly passed then Myles other Great Grandad Robinson too sadly had a stroke an he too sadly passed an emotionally I did not feel strong. So it took 18 months after you passed away and this last week of not sleeping an waking upset an trying ignore an pretend all ok and to go across mums and in Tesco see an old man alone and me with a stock pile of presents for Boo too think about people who maybe alone, I went across Nanna’s she too stood in the Hallway looking lost as we chatted and she was worrying about getting her nibbles in her eyes though was fear first Christmas alone without Grandad and across at mums I got upset for her but brushed off went home, on Christmas Eve Facebook triggered me to point turned of all notifications Christmas was about family time an so be it, Anne Myles great grandads partner Anne phoned who earlier on in year whold lost Alan phoned see how we were recognised this time of year would be hard for me as as was for her and at end of call it hit me I cracked, I melt all bitterness to dad I felt disappeared and I looked at Myles it was finally time he met his Grandad Hughie our Dad and on Christmas Eve Dad finally met Myles I think he was just an shocked an surprised as I was as It wasn’t how I envisaged spend Christmas Eve but am glad I did am glad finally my four year old finally got to meet and get a cuddle and see his Grandad all of us in room didn’t speak your name but did feel your absence missing and that’s my only regret about finally granting your wish you weren’t their share with us as you should have been I kinda think from heaven you’ve probably though in heaven come down from heaven an whispered in my ear what about Dad Katie it’s time and am glad you did because in New year we now have New hope Dad an I and Myles can have a New Relationship an too Jason an Dad can maybe look at have too just a shame you not here share in too but I hope though your with us in Spirit an through pain losing you that their can be some healing now your wish has been granted an I’ve entered the spirit of Christmas reconciling the pain of yesterday but am truly sorry though left to late for you to see I know we’ve a long way go me an Dad but we’ve finally now made a start I hope you Too our now finally at peace an forever I will miss you my brother, my best friend x

#I have Mental Health #Itsnotbecauseofstigma why choose not speak out.

The buzz word in Mental Health Stigma, we must speak out, we must were it label it lovely smiley faces on twitter at the moment I have Mental Health its ok say have , it’s ok you get help. I salute you for being proud, I salute your optimism, I used be loud, be proud open about my experiences was told was inspiring it boosted my confidence, lifted my self esteem a short lived adrenaline buzz but sadly no changes came were made, society gets an understands stigma are open to help they just don’t know we’re go, were access and get doors opened to care, Joe bloggs on the street does care, does understand I usually knows someone or even they themselves affected by. I don’t engage as much now with speaking out campaigns, wear my label on my sleeve now because I lost my brother to a preventable suicide he had both Mental Health and Substance Misuse he didn’t face stigma from his family or friends it was from the services that were meant to support him those that are now behind twitter campaigns like #I have Mental Health, I saw my brother at times at crisis took him to A and E be told he’s to ask for help is not sat in A n E over 8 hours in height of crisis not asking for help, when did ask for got turned away past from pillar to post, Even when stopped taking drugs was always told “it’s the drugs” it’s the drugs. Never asked him why he ever became an addict, Never explored his childhood upbringing, never asked Why if did ask Why they’d have seen then yes it was because of the Mental Health but they never did they stigmatised because of the substance misuse. My brother was stigmatised because of a Dx he was given Anti Social Personality Disorder the condition shut doors to access to recovery, was probably why assessments for suspected learning disability got passed up, passed up not just one professional that suspected was most who came into contact with him, why did you not do when came to you when spoke out said I’m here I need help, his protector Dennis a doll became his tormentor took his identity offer, the doll got into his head told Tim what do we his family asked for help knew he possibly wasn’t mentally ok even asked for support an help but got turned away. I do have Mental Health needs myself an manage I recognised certain things in my brother, Hearing Voices, Dissociative Identity, Depression, Obsessive an Compulsive Behaviour, self harming because he’d felt lost control needed help was not helped he openly said had but didn’t get so is why know I struggle support an engage with #IhaveMentalHealth. I’m only doing this blog because need rant get my upset, anger, frustrations out I’ve to do that to manage mine so don’t obsess about, get worked up about, have it bring me down and me turn on myself internalise and berate myself for not speaking out an challenging the #IhaveMentalHealth. The angry voice inside me wants say it’s patronising, that those that failed in my brother’s care murdered my brother they didn’t carry it out but nor did they step in an prevent it’s too late now for sorry. Campaigns like #I have Mental health are belittling to individuals and families affected an they’re belittled by the association of the unnecessary use of the word stigma, we must talk about yes stigma led to my brother doing what did but it wasn’t because of lack of understanding but care for all those professionals sharing their photos, retweeting posts ask yourselves why are you sharing, retweeting are you actually as a result of that post go out make a direct action, something that does get help, get changes made and actually stand up make a difference it’s time moved on from speaking out an do for those brave enough do, speak out, do for those who ask for help and on my post look at the photo and do for my brother Tim someone who said #IhaveMentalHealth help me the person whose voice not heard and do for my mum, my siblings an our children who have to live with his loss, live with pain knowing asked for help and enough not done because we don’t want people going through what we are.