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.
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.
Today Dad I saw you again, brought Myles with Me, Myles has seen you know twice he knows your his Grandad he loved playing his games with you today an only wanted play them with you he dosent know the you from the past nor care about or need know to him building a relationship with you is easy, child’s play he gets to know you for the now, the hear, the present to him it’s like you’ve always been their even though it only twice he does not get anxious or panic an worry about what we’ll talk about or say, will it feel strange or awkward dosent need pray for Gods intervention an be on our side as we pray an build a new relationship, wish I could follow Myles lead an attitude not let fear or the past get in the way because your are different to the Dad I Knew and used be, I know that the Drink stopped you from being the Dad I wanted you be and I can’t keep partly holding you responsible for things that went on in my life because when do that will stop us moving forward also Drink was the poison not you and wasn’t your personally that was not their it was the Drink that took you away. It was nice to watch Myles and you play it made it easier to chat an talk as you did, it felt normal like an everyday afternoon of a daughter an her son visiting Grandad and pleased went like that, I’m pleased Myles too taken to you wants be around you, see you play with you and feels safe an loves you automatically because your his Grandad and he’s a good judge of character too an today was nice follow Myles lead and attitude and the foundations an building blocks of our relationship be built on the today’s an the tommorows the moments have an can plan have, build how a child would build a relationship one free of guilt and judgement an one of love an innocence an natural care free approach to its strange a four year old been a mediator, the bridge of the gap and not realise they are but that’s the magic I suppose of been a child and child’s play as to them it’s easy, simple they don’t see ifs, buts, whys an the what ifs to them theirs no process navigate, mediate an weigh up an assess. The quiet an awkward moments were their but only briefly Myles he as soon as felt that was loud look at me an so snap out off. I hope our relationship continues to grow an Too flourish we’re still in the very early days taking baby steps so since doing that will build up like child’s play now so that we grow, we develop, we’re strong an when stumble as toddle jump back up an brush down for its time to take that journey, that walk those baby steps here’s to having a child like, childs play attitude and thank you to both you and Myles for today as it’s time I had my Dad back in my life and looking forward to our journey now an we’re will lead us too x x x x
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
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