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
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
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
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.
On social Media I’ve seen people debating Patient Safety in relation to my brother I’ve realised that more could have been done for him and that Patient Safety did not come into his care. To help me come to terms with his passing I’ve to understand an process why and find the solutions to could have what made a difference it is what manages my self care an also putting pen to paper gets my thoughts an ideas out an mapped out. So today while I’ve had an empty house an cleared up house listening to the song that played at the start of my brother’s funeral I listened to the song ” How to Save A Life by the Fray and asked myself that question. I asked myself how Services from a Patient Safety point of View could have saved a Life and been all Tim needed and here’s what I came up with.
1.See me as a Person
2.See my Circumstances
3.Include my family and Friends in my Care
4.All Services needed to work together an not in Isolation
5. Choice an Opportunities
6. The important one Listen When I ask 4 Help
7.Judgement Free Care
8.Check my Records be it Safeguarding,Crisis,Suicide Prevention,Care Plans and Recovery Plans are all up to date, working an implemented an everyone including Me an My Family were made aware off.
9.Take Responsibility Don’t keep passing me to service to service from Pillar to Post.
10. Carry out All assessments
11. Don’t exclude me from Services Because of Labels Attached to Me
12. Support through Major transitions
13 Finally Compassion an Understanding as Human Beings we are all entitled to having that met.
These things don’t seem like much but to my brother they’d have made a big difference and he’d still be here for all those looking at Patient Safety please look at this and ask yourselves could you have been All Tim Needed.