It’s coming up to 2 years since I will have sadly lost my brother to a preventable suicide in Mental Health Supported Transitional Housing after been allowed to fall through the cracks an not put on any care Pathway by the Mental Health Trust he was under and passed between them and Adult Social Care. I’ve tried fighting for answers challenging the system and asking why, How could they ignore the signs, ignore his pleas were was his Duty of Care. I’ve been dipping in an out of NHS Englands Learning From Deaths work and the team leading they are trying but just like us Families I think they’re up against it too. How do you change an archaic driven system,. Today I was invited to a 1 hour meeting with the department of health and was speaking on 4 areas that need addressing and helping push the guidance through that families put their blood sweat an tears into, my mum an I we too put ours. Today I was focusing on the legal power imbalances families face in fight for answers and the hurdles we have accessing our loved ones records an when u get its only a half story an leaves you with even more questions and thing today I let some of the frustrations feel come out an do normally try hold it together thing seeing my loved ones and loved ones of fellow families made me want demand answers as to us after that meeting we don’t go home forget about, put to bed let something reprioritise it because we have the stark reminder someone is missing, for many it’s their child and they’re robbed of seeing them grow, get married, achieve their dreams an them one day get married an families of own, With Tim I’ve been robbed of my best friend we was like two peas in a pod he was the one who guided me though some of my darkest moments an their at my proudest looking at his photo in that meeting hit me wanted scream you all murdered my brother your systems, processes and pathways are harming not helping in our fight one thing we hear regularly is “failure in breakdowns in communication ” a gp can’t see Paris and record on it the NHS can’t see the gps system one and record and that and the grey area duty of candour is not assisting an a hinderance is the grey area of confidentiality an record sharing or in Tims case not record sharing and when you add local council record keeping an the supported living recording system it’s no wonder tim, us as a family an his navigator was hitting brick walls. Failure in communication is not an acceptable answer to why someone is driven too take their own live, before the meeting I was chatting with my sister on how we feel about Tims death an we want to be angry with him but we understand he wasn’t ok an today I needed let some of that anger an frustration how dare they say computer said no surely that should be something can change. Telling Tims story an where we are at with the inquest process is frustrating we’re gridlocked an at a standstill because we’re going through a judicial review because sadly the coroner is listening to two sides an not the side that matters us that matters the family. If my brother’s death had been in hospital we’d have been granted a Article 2 enquiry automatically if was a NHS run supported living would have done but because Social Care the coroner’s using the grey area death in community. I told them today if we lose the review we lose all legal representation and aid and have to fight for answers alone and that many families met recently had represent themselves an that any requests had were denied and so outcomes didn’t go in their favour they didn’t get their answers and left now fighting that bit more yet the evidence was clear for all to see, I told them I should be grieving my brother but I don’t I’m my families advocate I review, critique try put the jigsaw puzzle together and find the solutions to the failings an that’s not fair it’s left me physically an mentally battered and been offered no support by those who failed him apart from a token book coping with death of a loved one to suicide I don’t want to cope with his death I want him in my life I want to know no other family will feel my pain and it’s hard to gage did they listen, take note will things be done and implemented an changed the people in room today can’t expect us to be patient in our quests, can’t expect us be fobbed off to us they’res too much at stake, we just want openness, truth an accountability we need to grieve to mourn, to try lead lives without those we love as hard as it is it’s not fair be gridlocked no we’re further nor nearer to those answers an solutions because whilst we’re gridlocked we add to the growing number of historical cases my family we’re only short way in and we’ve one long road tred but if today taught me anything the fight will get harder, will break me that bit more but it’s not a fight will walk away from Tim deserved so much more and so did the family’s lost loved ones because I’m not going away harmed patients an families too won’t go away because we broke the day our loved ones died you can’t break us anymore so you might as well help us piece ourselves back together let me grieve an mourn let me free my brother’s memory free not keep having air his broken story give us the truth it’s time he had dignity in death let me dream he’s know free with my daughter in heaven I want to let him go and let him be free my family need free ourselves to off our pain an anger. X x
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
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 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 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.
On the 26th August 2016 my life as I knew it stopped, yet the world still continued to move and time did not stop, On the morning of the 26th I woke with a 101 things needed an wanted to do planned phone my sister see if she needed me go back across an see her and help sort out her housing issues, I have a big mouth an person in my family known shout and get people heard, catch up around the house , try do something fun with my son, knew I had to phone my brother Timothy check up on if he was ok as had a missed call the day before upset and pleading for help that voicemail will now forever haunt me. Even though I knew I wanted phone my brother for some reason I kept dawdling putting off when woke was telling myself will do but first Katie need sort Myles. Whilst Myles managed was having his breakfast I thought I’d take 5 have my coffee then phone Tim my mobile rang it was my Nanna’s number that came up for a moment before answering in my heart I prayed my grandad was ok as part of me thought she was phoning about him. Nothing could prepare me for me for what she said I won’t fully divulge the full details but enough just to say my brother had taken his own life, I’m not sure if was because didn’t hear her say first time or because zoned out to what she was saying or stupidly didn’t know how respond to but I had to ask her repeat what she said the first time and it was then in that moment that instant I knew my brother an best friend had gone an From that moment on life changed for a long time for me life has stopped even though is moving around past me but me for me the world stopped that day as I’ve not wanted move on nor ready to I struggle accept Tim’s gone not ready face that harsh reality an reality of why I convince myself he’s busy he’s happy but he’s ok I suppose they’re the things I like believe he has found in Heaven. I don’t view my friendships, my relationships in the same way as I used to I don’t seem bothered for idle gossip, coffee an play date catch ups and selfishly no interest in other people’s life’s as am purely focused now on protecting my own little family unit an that of my immediate family my mum, my brother, my sisters an our children I feel I owe it them play big bro and big sis and I owe it Tim to keep his memory alive. We don’t call the actions Tim took as Suicide as we see it his death could have been prevented the 21/2 years leading up to that date showed my brother’s fight for Recovery to be him again he reached out so many times asking for help us as a family did too spent many a night with him in a and e as did the local police force taking him down to be assessed but time and time again even when free from still ignored his Mental Health needs and blamed the drugs or the things he was obsessing over and paranoid about were social matters and couldn’t help yes you could because they’d took over his Mental Functioning he became tormented by a doll that he first thought was his protector but then it took hold an control it spoke to him, bullied him and controlled him to point morphed into that persona but apparently that too got overlooked he engaged with volunteering wanted go back to work, wanted a place call home, wanted feel human again most importantly he wanted be Tim again an he did fight so hard to have that but sadly he became to dependant on one key worker and probably dependant on Crypt an lighthouse his safe space became sanctuary and his bubble. Services sadly enabled that too happen they didn’t take him on their recovery bus help him with his Self Care, identify an address his triggers what to do when crisis hit an were to go when needed help but yet at crisis told him he had to ask for I used to thing they were either a) blindly ignorant orb) extremely stupid as he’s here can’t you see him he’s asking I can see, I can hear why not you. Right up until the day he died he was screaming for help I’ll never understand why when he was taken to a and e why never admitted, never understand neither why his gp only offered him coffee an biscuits you saw he was broken why didn’t you get him help. Where he was living they advertised provided crisis an respite support and will never understand why they didn’t offer him an nor will I accept that they’re not partly accountable as how can you just be private landlords if we’re he was living was under assessment an classed as a transitional home a place supporting people with needs like Tims is probably why I don’t accept is Suicide as because I know more could have been done an I know Tim I know the act he carried out he did was because most drastic the one that would get them really see he was screaming out for help also I suppose I don’t call suicide because I’m not ready accept he didn’t want to be hear no more, not ready accept he wanted to leave us and nor ready accept it was his Time. They’res loads been spoken of at the moment about suicide an zero alliance a zero attitude to suicide I kind of feel that doesn’t relate to my brother as he and the family knew the signs even told people providing Tims care what look out for an when he was in extreme distress he wasn’t a danger to others but himself, Tim also had suspected LD was a recovering addict around 12 months free of substance misuse he was also someone who ended up past from pillar to post and a vulnerable adult and was known to services an should have been supported I feel that the zero alliance is looking at suicide prevention from people that are not known so what do you do for people that are known an how do you help them an how do you help families like mine come to terms an face the harsh reality they’ve lost a loved one to suicide so for the time being ill fight for answers for him, try make Services work better to support people like him, I’ll keep his memory alive an I’ll keep campaigning more should have been done an I’ll continue shout his death was not suicide but a preventable one an ill do that for him in the hope others do not become lost and that through him others maybe found an that people like him they’re lives are made to matter an not tossed to one side an so that people like him have the oppurtunities to be a part of society, be human again but most importantly be a person as Tim he just wanted be Tim again x
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.