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

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

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

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

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

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

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

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

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

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

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

Dear Timothy,

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

#NHS #LearningFromDeaths Realising we are not alone in our Fight For Tim.

On Tuesday the 31st October me and mum we went down to London to attend an NHS event around Learning from Deaths we were attending both days of the conference on the Wednesday with families and on the Thursday with professionals. I was apprehensive about what to expect, apprehensive could I hold my emotions in could I remain calm and could I get the professionals to Listen to understand how they treat my mum at her most vulnerable an in the rawest moment of her Losing Tim they had a duty of care to her to support, to reassure, to be open with her to give her the answers why to why Tim’s death was not prevented when so many Times both he an mum and us as a family reached out for help. Most importantly she wanted be involved in that process of finding out Why, to understand, to input into findings an say what could have be done differently she’s felt she owed that to Tim and she’s wanted do so no other parent had to go through what she was going through. When we first lost Tim we did not blame anyone, want to hold any person or organisation to account nor did we want to go down the Complaints Procedure. But it’s been the way that things were dealt with, how things were handled that led us have to do that, Other the last 2 days it’s been a real eye opener to me I realised that me and mum are not alone and that other families had received equally shocking treatment as us and some were 12, 18, 24 years later still fighting for answers fighting for change for answers to those people you are trually remarkable especially Robbie Powell’s parents and Ann Fighting For answers For her Mum Elsie and Josephine OcLoo your strength, your character, your determination and your resilience I admire because you haven’t give up, you’ve been shockingly treat you’ve not been able mourn, grief, not only have you lost loved ones you’ve lost parts of your lives but you still keep trying to fight for answers an Too still willing be equal partners and work towards wanting the Lesson’s be Learned and it saddens me that the door has not been open for you to do that and that still your not Listened to I hope an I’ll pray one day that happen’s. Melanie Leahy I loved your feistiness at times you were quite but when spoke you spoke with grit, with fight, with spirit an charm an when spoke you hit points home and I hope that you were Listened to I hope promises made to you are followed through with, Angela May’s I thank you for in the workshop we were in telling the professionals why are you not answering her question “what are the barriers” and kicking them up the backside. Other the last 2 days you all have an like include Fiona Bell and Louise Johnstone you have all shown us love, support, compassion an advice on what to do in our Fight For Tim an you showed us we are not Alone in our Fight, Our Stories are Different but still equally same as many other Families their we were shut out at our most vulnerable an not given the oppurtunity to become an important part and be involved in the investigation process and as loved ones you should have been granted that, Joanne ended the day after sharing Jasmine’s story and how the impact of her not been Listened to in the beginning has then been the major influencer to her still not getting the answers but she too had passion an optisim that “Where their is a Willingness their is a Way”. On Wednesday all the families they had that passion, that fire that drive an that Willingness they were not just subjective they were their to bang on that door an To have it opened and too share so Learning could be made and wished on the Thursday more families could have stayed so that the professionals could not just have seen what we’d all compiled an discussed together but felt the spirit that drive and that passion. Because sadly Thursday the atmosphere did feel different it sadly felt cold families questioned would things change would all the families be listened to, would in years come Lessons actually Be Learned or would all the Families be back here again, I know that the professionals that were their were their more to be objective to Learn and not to share but I kinda feel they may have missed out on sharing in that passion that come from Wednesday as Passion is sadly something you can not Learn and if you do not have that passion or share in you may struggle in your desire to change. Olivia Bentley tweeted Last night it was now a huge Job on her shoulder’s it should not be a huge Job it should be a simple and easy one but at the same time I respected her and everyone involved in the Learning from Deaths Board because they did all show care, compassion, spirit, grit and determination they know what needs to happen they have that Willingness to Find a Way they’ve opened that door for them and all the families I hope now Services please Learn because you should not have keep Learning From and also support them, get involved with and change and don’t make a huge Job it shouldn’t have to be but they’ve given you that key to now open the door it’s now time you lift an take away that load and for all the families it’s time Listen an Change.

Other the next few day’s me and mum would reflect on our Fight For Answers For Tim look through his notes check all their, adequate ensure things we want seen our Legal Team an all Parties seen, Well check and read the serious incident report that not involved in and then well maybe look contact the person conducting and if not compiled and published say “Lets start the process and report again but this time you open the door make us equal partners and involve us in every stage even in all the meetings because that’s us wanting be involved that’s us putting our trust into that it’s been done right that’s us showing you we want change but now it’s up to Leeds and West Yorks Primary Foundation Trust to do that so please in Learning Lesson’s since not their these last two days open the door to us make us equal partners let’s Find the answers for Tim Together let’s Learn the Lessons that need be Learned together and then Let us then together make changes, recommendations and structures an process’s in place and that deaths like my brothers are ones that not are Deaths to be Learned from but ones that Prevent future Deaths please do that for me, for my mum but especially do it for my Brother Tim.