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
Facebook can and can’t be great when overcoming the loss of a loved one, On this day sometimes will have a happy reminder a memory a photo, tagged a conversation had and they’ll put a smile on your face, Other days you may get a On thus day reminder that brings a lump too your throat a tear to your eye one wish could erase, one wish could reply too, one if went back in time you could change your attitudes an actions too. 2 years ago today Tim you left a Facebook Message for Mum on my wall saying I’m Sorry and what you we’re Sorry for you weren’t entirely to blame it was Nanna an Grandads Anniversary do you we’re so excited about also very anxious about you we’re struggling with grips of your demons with Mental Health, battling recovery finding your feet. Me, Jay Nat an Robynn holding you at arms lengths constantly judging you stereotyping you we’re probably guilty of been a bit cold, standoffish we were more concerned Nanna an Grandad had a great do than checking you we’re ok. You we’re been bought drink after drink we should have told you Tim enough we didn’t we assumed you’ld been on something not just the drink., I should have remembered alcohol can counteract medications your own and how you were that day was a result of that and not stereotyped you for being on something as it’s only since your death we’d been made aware you were drug free had been a good 10 months so on this day 2 years ago you weren’t on something and when u got loud an Merry with the drink we should have stayed, ensured you got home but we didn’t we left when Nanna an Grandad did you stayed with family an one of neighbours of mum an Nanna’s street they got you drink after drink took you on to another pub somehow u ended up outside mums caused some disruption with your loudness somehow got bundled back into a taxi home you must have gone on fb said I’m sorry Mum on my fb you knew she’d see it their or I’d comment but I sadly didn’t I was stewing with you, I’d judged you assumed you at fault questioned how many more chances we should give an like a child I ignored you didn’t reply an today your on this day post came up an it cut me up because didn’t thing what made harder see was we’d had a meeting with the NHS they’d took into consideration that you we’re off substances an we’re going acknowledge in your report we asked also that staff attitudes that were stigmatising towards those with both mental health and substance misuse be addressed I.E Judgement Free Care because we owed it to you that changed also it was to recognise that you wasn’t the person who’d been wrote off and should have been supported an it recognised the efforts of your recovery journey so Today’s On This Day Today I too was guilty of that behaviour an stereotyped you unfairly I should have stepped up, stepped in cared for your wellbeing not judged or assumed anything about your behaviour should have got u come back to Bradford stayed over a Chinese and you’ld not have had to felt apologise as you’ld have been with us as that event would never of happened outside Mum’s. We’ve a still a long way in finding out the answers why To failings in your care and things be changed but glad today we made one small step they recognised you weren’t on drugs and hadn’t be for awhile I hope in heaven it goes towards me saying Tim I’m Sorry Too and I wish could turn back the clock but know what know now and changed the course of your future thought for you as much do now, believed in you better and pushed for better treatment an care challenged not just professionals towards you but ours too and gave you the love and care you so desperately needed and made you feel worthy and built you up if done that you wouldn’t have felt in end way you did an you wouldn’t have done what you did on that fateful day on the 26th August an you’ld still be here and so Tim Im sorry I too made you feel way did an wish I didn’t have unfairly judged you because you Tim you never did that and in when I too had my own blips you never judged or shunned or stereotyped me you did what we should have done we should have looked out better for you maybe on this day today next year am optimistic we’ll get the answers, lessons will have been learned an my sorry back to you I’ll feel able write but for now I’ll share the comment on my blog an say Tim I’m Sorry Too an I love you always and 4 eva and you know saturdays an extra hard day 4 me an so I hope u can give my princess a kiss and both be with me in spirit x
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.
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.
Depression is horrible it’s a debilitating disease that squeases the life out of you keeps you trapped in the darkest places of your mind, takes the spirit an life out of everyday moments, in extreme cases murders those you love forces an pushes them into doing something stupid wreckless as they fight try find away out, Depression is like a prison sentence when things not too bad you get time out from like good behaviour but then smack something happens your hurled back into that darkened cell in the back of your head trapped , surrounded engulfed by misery, pain, desperation, inability cope, intense anger as you struggle and fight through. Depression isn’t just an invisible one but it’s a lonely one too people can’t see depression nor do people want or try see. People don’t spot when friends or family disappear become distant and you drop of the radar don’t stop by and ask are you ok, People don’t see past the charade the pretence that everything’s ok , people don’t see the bags under your eyes , don’t see the pain an fatique of the weight of the world crushing down on you theirs no hand of support their to help you up, no one their to lighten the load, Depression is a tormentor abuser it plays with your mind construes your thoughts makes you paranoid throws you into a spin cycle of thoughts that take over an drain you and drench’s you. Depression people don’t see nor understand people don’t get depressed your expected snap out of, move on so you pretend , you act you paint a fake picture alls ok still whilst slowly fading away into the distance life stopping for you but continually moves forwards for others you stumble n trip and sink trying keep up and I understand now why some give up because it’s tough it can get too much to keep on battling, keep on fighting, keep on trying for me I have no choice try battle an fight through because depression to is a curse it dosent disappear when you go you wherever maybe, maybe free but those you leave behind they struggle see, understand carry the weight off and depression sneakily sneaks in whilst their vulnerable and off guard it’s how it’s snuck in for me this time round pain and grief and anger at losing a loved one to a preventable suicide shrouded and engulfed me and has me trapped and I wouldn’t want pass that curse on so I’ll battle an fight with it I’ve beat it once I’ll try beat it once more the child snoozing next to me oblivious am awake at daft o’clock in the morning needs me to he’s to young to understand and see but to a point knows his Mummy’s been sad and when she’s upset thinks is his fault an asks Mummy are you my friend, the guilt of having depression then engulfs you don’t want your child seeing or sensing or feeling that so when they can’t see you try process an unravel the pain your feeling and untangle the mess inside your head be good have a pause button take a rest an break from but it’s depression it dosent make life easy. I can choose to live in hope though and hope I find away fight through and that I break through the prison of can get a hold off an my life back on track, can try find solutions, plans break through the core that’s keeping me trapped only you that is trapped by depression can break free from because people don’t see those chains wrapped round you an can’t pass you the key to release you from to all those that are battling with though we see and hopefully by speaking about people will start to see an start to help remove the chains that have kept us held and dragged back but until then know you are not alone we all at some point or time wrestle with an battle with an so you are not alone in your fight with x x x x x
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