Empathy putting myself in Tims Shoes

Empathy to put ones self in ones shoes.

Today my guard slipped the strong facade the I can get through anything crumbled. Today started off ok I tried to put the hurt an fear off having try find the legal fee’s for Tim’s inquest to one side went in to Uni as normal treated my uni friend to a not so nutrititious breakfast of fruit loops, ribena an a Krispy Kreme doughnut why because I’ve put myself in her shoes she’s 18 new to Bradford away from home her parents and all her finance goes on student halls of residence and since I’m a momma I can’t have her go without and so I know she’s ok I mother her look out for her something my brother Tim did he looked out for everyone.

We filmed the remainder of our group presentation on interpersonal skills I was filmed with doing the introduction an conclusion talking about learning styles mixed with emotional tags my emotional tag is my brother Tim I strive be all I can because of him.

We finished filming went to psychology as normal today’s topic abnormal psychology I.e mental illness at first the topic didn’t register went over my head I was fine making notes but them it came to the you tube clip that broke me.

The clip we had put ourselves in the characters place they were alone in their flat hearing voices, fixated thoughts, trapped, alone thoughts obsessing an spiralling out of control. I in that moment shut all around me out the classroom distorted the view changed I was in Tim’s flat I was Tim every step took looking round every room was his nothing out of place, nothing that resembled home, this place was alien the voices worthless, useless whirled my head felt tense nervous giggles from my peers made me feel are they laughing at me I was stuck the room spinning felt back in Tims flat worthless, useless pierced sharp an fast I couldn’t, watch, listen take I felt sick I felt trapped and vulnerable and helpless an I got a surge I bolted I ran out of class couldn’t take anymore.

Outside the room reality smacked my face I was awakened I was at uni I sat I paused an the tears came it hit me hard how tim felt that week why was I not their looking out for him protecting him as am good at. It him me why did those supporting him not do anything the anger of last weeks decision surfaced the realisation we’ve no funding we may not be represented hit then the panic floored me #why it hit me did the fear an panic may not get not get outcome looking for an so how do I run away an escape that harsh reality.

Why did those that failed not put themselves in our shoes, why has the coroner put himself in Mums shoe’s why did legal aid when ripped away our funding not do an see the impact an implication of that decision why couldn’t they give us a break take away one of the worries an hurdles we’ve to pass I left uni early with a heavy heart reassured my friends an lecturer I’d be ok I chatted with mum wanted take her pain an fear away an her try with mine. I got in Home I fell in a crumbled heap on my bed I cried for Tim I sobbed why.

My soul is weary my mind an bodies tiered, heavy and broken tonight hopefully ill sleep tomorrow put my mask back on I’ll probably blot out what happened today I’ll try focus on what got me to go to uni ill look at my shoes thing off tim an I’ll ten fight get through another day wish someone though could now take my pain away put themselves in my place someone with the world on they’re shoulders trying to get the best outcome for her brother getting the it’s our fault we should have done more and the we should have saved him and well change as then they’ve walked our shoes walked our journey an finally understood that pain that Tim felt an next time meet a Tim they’ll act.

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Good Death / Bad Death – What are they –

As someone who is trying have faith in God I’ve discovered that in Death if someone is for instance of an older age had their families lived their lives way wanted an accomplished all they wanted that when time comes it’s ok to not pray for recovery or healing but actually pray It time for them to pass peacefully meet their makers an for them to take their place in heavens realm in we one day see them again., With my grandad in the last few weeks seeing him in hospital so old, so frail not the person once was I knew his soul was ready leave this life it was to be hard but I did pray God listened to his Will his heart an if his time let him go peacefully, shortly after my Grandad passed my sons Great Grandad had a major stroke one he would not recover from he was moved to a home to make he’s final few weeks comfortable an again I prayed God listen to his heart an his will an when time comes let him to go peacefully. I’ve discovered that these deaths are classed as good Deaths strange notion a Good Death. But it then got me thinking about my daughter she was born still born she had severe spina bifida an hydrocephalus her death was not expected or planned whe received news did I prayed doctors had got wrong, I prayed for divine an medical intervention even asked for a blessing of healing over my bump but at the follow up consultation the harsh reality my child would not survive birth was put to me an that it’d be better end the pregnancy early an deliver her born sleeping an so I did at 22 weeks an 6 days surrounded by our immediate family I did will myself to Die too moment she did my body shut down crash team called in my family ushered out my mum prayed to god don’t take me her baby an you’ll gather I survived but I did suffer terribly mentally for years afterwards tortured myself spent along time in an out of psychiatric services took along time for the guilt to go to mourn it was an always will be a bad death as I’ll never understand why when discovered pregnant was given the precious gift of life to have cruelly ripped an snatched away, then we move onto 2013 I finally went on to have my rainbow baby 10 days before Christmas the child who brought me hope after darkness an is my continued reason to fight the darkness as in August 2016 I lost my brother, by best friend to a preventable suicide for 21/2 years he battled demons was tortured mentally lost his soul to his alter ego an became possessed by a doll my family an I we constantly thought for help for him in the May of year he died we thought he’d finally turned a corner he was moving into mental health supported housing, he was volunteering at St. George’s an at. TCV hollybush was given a new lease of life was optimistic we’d get our Tim back but for whatever reason we don’t know why we are now fighting for answers why, What happened for him to deteriorate mentally again, why were the signs not picked up on , why when he reached out for help was it not given why the week he died did Accident an Emergancy not intervene why did his Gp not intervene an why did the staff at the supported living not intervene. Since losing Tim my family an I are now mentally tortured physically an emotionally drained an having now fight the NHS an social care an now the legal system to get the answers why today should be a day spent with my son but sadly I’ve had to make childcare arrangements will go to my mums argue an negotiate with our solicitor an barrister with my mum the band aid plaster trying protect me from hurt of losing Tim will be ripped of as mum an I will again have review an critique all the legal paper work an Work out our next steps today I’m mentally preparing myself for news that the courts have rejected our notion for the judicial review that’s challenged the coroner’s decision regarding article 2 and preparing myself our legal team may tell us stop perusing and I too now am slowly losing my faith an sense of hope because I can not move on with my life, days of feeling happiness have disappeared it’s know a battle of get through each day best can because I’ve my son an he needs me an I don’t want my family facing anymore heartache an pain, I throw myself into fighting for answers for tim, trying challenge the system get changes made but we are no further forwards but rather further back I don’t think we’ll get the answers an closure we’re looking for an destined to carry the heavy burden and pain of losing tim with us and Day he died to part of us to died his death changed us changed how we see life, how we now interact an engage an took part away our hearts and souls so we’re no longer the people we used to be I try engage in life because of Myles but at same time have cut myself off an detached myself from certain aspects to survive the hell were now facing, losing a child at whatever age to a parent is never a good death it wasn’t something I’d ever want me an mum share going through and losing a brother to a preventable suicide wasn’t a good death neither they are bad Deaths ones I know struggle with an carry heartache off to me they are bad Deaths an when time comes I will tell God that and I know he’s expecting that because I do know argue with him, challenge verses in the bible do not pray as devoutly as once did an sadly feel him lost from my life I do try search for him but am on a string hold now with my faith I once cut him out my life if not for my son probably would have done because as I said earlier he’s my continued hope in darkness I fell myself he’s my gift from God an with that comes the sense I’ve to be eternally grateful an so I persevere in my ongoing battle with faith in life we do all die but death is not always Good because some Deaths are not inevitable an those that die too soon had more out of life to give did not have The chance reach their potential an life had more to offer them an so death was bad and robbed them of the joy of life the pain of that death an fighting to understand why then ripples throughout the lives of loved ones so when people talk about death I’ve discovered some deaths yes are good and some are just as equally bad an it’s important when people now talk about death consider what is a good death an Too what is a bad death an how you know support people going through that x x x

The fight gets harder broke that little bit more learning from deaths an meeting at the dept of health 10/05/2018.

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

Engagement session wobble Care Navigation

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

“I’m Sorry Too Tim”

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

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

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

Everyday

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