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

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“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.

Finding a way saying goodbye losing my brother to a preventable suicide

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.

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

Article 2 the fight for continues

The fight for answers for Tim got made harder this week on Thursday I met with our solicitor to sign and complete my compiled witness Statement and when got their she informed me article 2 was turned down by the coroner, The local council involved in my brother’s care who had no involvement with us as a family since his death an became persons of interest at this late stage an handed their submissions in late stage have come in an took temporarily control. I ask myself why an how can they do this how can one small loophole have that decision potentially took of the table, what is they are preventing not get out, what is they’re wanting to hide, I’ve asked myself do local councils have some form of power an influence over them an can they control what coroner’s can an can not do. I was hurt an angry and livid inside more so till a plan of action was formulated on how solicitor an barrister could address to not tell my mum, That was hard not telling her as after all were fighting for answers for my brother, her son. It was hard not going to her because I was upset and wanted her tell me all would be ockay and the solicitor was asking me wait so when came up with a plan of action would make it all ok. Losing article 2 means we’ve not lost means we’ve got to fight that bit harder and as a family just wanting answers it’s not fair made to fight to get that because we are not able to mourn, to grieve, inquests are lengthy, drawn out and not easy face an 14 months on it’s still been thought out what kind of inquest will be an what scope an what will be disclosed it’s not fair on families and parties of interest should always be thinking of the families but in our situation I’ve learned they don’t nor make the process easier, I have trust in our solicitor an barrister that what they’re planning to do should get the decision overturned and I’m sorry god I handed it over to you I won’t be this time in my prayers and look what’s happened my family still no were near finding peace, I will however continue have faith in our legal team as they know what they’re doing, they too believe in our families fight for answers if not for them we wouldn’t be at this point we’d, have probably given up let those with the Power an answers win and my brother’s failings. Be swept under the carpet but because we’ve a good Team we’re not well use our upset, our hurt and anger to come out fighting once more an we put that hope an faith in the legal team supporting us do that and the local council may have this round but their is a long way to go and decisions can be changed and hoping that it’s changed again soon. For families in similar situations to mine my heart goes out to you because it is hard an we don’t have anywhere go to, turn to we just have to try best fight on an carry on and it’s not easy but we do because the loved one we lost was a live that mattered something the coroner an other representatives an parties of interest seem to forget.

#I have Mental Health #Itsnotbecauseofstigma why choose not speak out.

The buzz word in Mental Health Stigma, we must speak out, we must were it label it lovely smiley faces on twitter at the moment I have Mental Health its ok say have , it’s ok you get help. I salute you for being proud, I salute your optimism, I used be loud, be proud open about my experiences was told was inspiring it boosted my confidence, lifted my self esteem a short lived adrenaline buzz but sadly no changes came were made, society gets an understands stigma are open to help they just don’t know we’re go, were access and get doors opened to care, Joe bloggs on the street does care, does understand I usually knows someone or even they themselves affected by. I don’t engage as much now with speaking out campaigns, wear my label on my sleeve now because I lost my brother to a preventable suicide he had both Mental Health and Substance Misuse he didn’t face stigma from his family or friends it was from the services that were meant to support him those that are now behind twitter campaigns like #I have Mental Health, I saw my brother at times at crisis took him to A and E be told he’s to ask for help is not sat in A n E over 8 hours in height of crisis not asking for help, when did ask for got turned away past from pillar to post, Even when stopped taking drugs was always told “it’s the drugs” it’s the drugs. Never asked him why he ever became an addict, Never explored his childhood upbringing, never asked Why if did ask Why they’d have seen then yes it was because of the Mental Health but they never did they stigmatised because of the substance misuse. My brother was stigmatised because of a Dx he was given Anti Social Personality Disorder the condition shut doors to access to recovery, was probably why assessments for suspected learning disability got passed up, passed up not just one professional that suspected was most who came into contact with him, why did you not do when came to you when spoke out said I’m here I need help, his protector Dennis a doll became his tormentor took his identity offer, the doll got into his head told Tim what do we his family asked for help knew he possibly wasn’t mentally ok even asked for support an help but got turned away. I do have Mental Health needs myself an manage I recognised certain things in my brother, Hearing Voices, Dissociative Identity, Depression, Obsessive an Compulsive Behaviour, self harming because he’d felt lost control needed help was not helped he openly said had but didn’t get so is why know I struggle support an engage with #IhaveMentalHealth. I’m only doing this blog because need rant get my upset, anger, frustrations out I’ve to do that to manage mine so don’t obsess about, get worked up about, have it bring me down and me turn on myself internalise and berate myself for not speaking out an challenging the #IhaveMentalHealth. The angry voice inside me wants say it’s patronising, that those that failed in my brother’s care murdered my brother they didn’t carry it out but nor did they step in an prevent it’s too late now for sorry. Campaigns like #I have Mental health are belittling to individuals and families affected an they’re belittled by the association of the unnecessary use of the word stigma, we must talk about yes stigma led to my brother doing what did but it wasn’t because of lack of understanding but care for all those professionals sharing their photos, retweeting posts ask yourselves why are you sharing, retweeting are you actually as a result of that post go out make a direct action, something that does get help, get changes made and actually stand up make a difference it’s time moved on from speaking out an do for those brave enough do, speak out, do for those who ask for help and on my post look at the photo and do for my brother Tim someone who said #IhaveMentalHealth help me the person whose voice not heard and do for my mum, my siblings an our children who have to live with his loss, live with pain knowing asked for help and enough not done because we don’t want people going through what we are.