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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A place to call home

Your home is Your Castle, Your Sanctuary the place you grow, make memories in it’s your dwelling, your abode, your place of safety and refuge, my hope it’s old it’s worn needs some tender loving care I moan about it my sons picked up I call it a shanties ramshackle house when I’m having a rant day so he now calls it old house wants a new house. At the same time though am lucky because this ramshackle house is my home. My brother Tim he sadly died not knowing or having that he obsessed got into vicious cycle fearing he’d be made homeless again when he died he was at a place called Cottingley Court, it was Transitional Housing for vulnerable adults affected by homelessness, addiction, and mental health he’d stayed their at crisis then he moved in to one of their flats to be assessed to determine what support he needed he was to be their at least a minimum of 6 months could have stayed up to 2 years and if warranted longer or moved to somewhere that could have offered permanent support. Tim in his mind didn’t feel safe, didn’t feel settled couldn’t make roots or settle because it wasn’t made clear he wasn’t to be made homeless wasn’t no plan no where definitive said this is your home. He once posted on his Facebook shortly after moving to cottingley court “I’m allowed Visitors” that dosent really say he saw as his home it says he saw as been in more of a inpatient or Care home, “I’m allowed visitors ” reading back is heartbreaking read I try putting myself in his shoes imagine the confusion he felt an tears run down my cheek all he wanted was one thing I moan about a place to call home, a home where he made rules a home that he opened up to his friends an family not somewhere dictated by guidelines to follow I.e no visitors after certain times cottingley court they advised offered crisis support but they didn’t an if we knew Tim was desperately struggling we’d have offered to stay with him help him make feel like his home we’d have him making the bacon butties with a brew he used make a decent buttie. He shouldn’t have resorted to drastic action he took when reaching out for help an reassurance he died broken, lost, isolated and desolate in a place that was supposed to be his home. 2 days before he died he spoke his fears with his GP, his GP just listened an made him tea an biscuits, tea an biscuits is what us his family should have been having at his house when visiting or should I say a coffee as where all coffee drinkers in our family we don’t offer visitors coffee we ask them make us a coffee, help themselves to whatever open our homes up sad ain’t it my brother’s gp could only help by make a cup of tea an biscuits an for a brief moment tim will have felt the sensation , feeling like home, Why couldn’t cottingley court give him that sensation help him realise was home , reassure him wasn’t to be homeless , give him the support an care he needed an why moved their in first place, why didn’t they keep him safe, protect him they were supposed to why did he not feel safe, why did he die feeling like didn’t have a place called home it’s not much ask is it have a place that’s yours an call home.