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

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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

Myles next Milestone

I’m laid in the dark feeling nervous, anxious sick to my stomach my baby sleeping next to me, my baby been my 4 year old son. Either at Midnight or sometime tomorrow my baby will get his email confirming his school place. At first I was only anxious would we get our first choice, then it was anxious would he adjust going full time Monday to Friday, then when nursery started introducing homework as part of getting school ready that anxiety hit is Myles school ready then I had the excitement ooh I’ll have all this extra time can look at having my life an identity back try have a career but then hit with the stark sadness an anxiety crap am going to have all this time an how am I gonna fit in Myles have so many different expereiences us doing stuff together time will be drastically confined to weekends an soon the school holidays. Myles has grown to quick times gone too fast the Milestones are forced stages of transition, times forcing me to face up to he’s no longer a baby, nor infant nor toddler I’m not ready for the next stages I want to keep him as my baby for longer. Stomachs knotting, twisting heart beating ten to dozen, palms sweating, fear, panic, kicking in one email changes everything, one email don’t think actually want to open, one email don’t want to be one that forces the realisation Myles school is which equals Myles is a baby no more don’t want fell that sadness, that feeling of loss that comes with the next stage an Milestone. That emails also the stark reminder of a moment a milestone never had with Marybeth it’s a stark reminder of a moment missed out on with her. I wonder what would happen if I didn’t open, didn’t acknowledge would it go away could I keep Myles as an infant, baby, toddler a little longer, I wonder if Myles is aware an understands the process of been ready for school it would make the anxieties easier manage if he was able say Mum I’m ready it’s time but he’s only 4 an that’s a big ask of a 4 year old say Mum I’m ready for my next Milestone, next chapter in my journey, I’m ready mum for school, I’m picturing though me wanting shout but Mummy’s not ready just yet can we not just keep you are just a little longer an us choose when ready for Myles next Milestone because how do I cope, how do I let my little boy grow up x x

“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

Letter to my 4 year old #childrensmentalhealthweek.

Dear Myles

This last week I’ve heard you say the words ” I can’t ” an a thought bubble in my head pops up ” no such word as can’t “, I never say verbally I coax you , I guide you , I help you with what your struggling with an I tell you how proud ” I am ” learning to count, dress yourself an put your coat on by yourself are big things to do when your 4 and something we have work on as I know in September when you go into full time school be expected to do an I don’t want you feel scared or under pressure or even laughed at if can’t do because sadly children don’t mean be cruel but can be but I’ll do whatever I can make it a smooth transition for you because mummy can’t come school an fight your corner like I do now,

As you’ll get older and grow you’ll be compared to others based on how u look, your weight, the clothes you were, your in status an even on your sexuality but at 4 that’s not something thing off right now but all you need know is that I your mum will always be proud, I will always thing your perfect , I will always thing your amazing.

I’ve noticed that people already have started comparing you to others picture you as a naughty child one who needs boundaries because you are loud, have ants in your pants and don’t sit still and have to be a mini tornado, to me I don’t curb that I don’t tell you be silent because I see it’s a gift your excited about the world, the people an places we see your growing your identity an building up your confidence an who am I too halt that my jobs to nurture you, build you up , I see your loudness to as a positive one of things I love about you.

From a young age through the bereavements we’ve faced you from a young age had an understanding for pain, for sadness a natural gift for compassion something as adults an life’s pressures we forget how to be compassionate you understood and knew Mummy was sad in your own way I think you was trying ask for help for me when you told people mummy was sad and I did feel guilty you sensed that because as your mum I want protect you from all lives heartaches but sadly I’ve to accept I can’t.

Last week you faced your first experience of heartache and able share your best friend was not your best friend he wanted to play with someone else an sadly the someone else was the girl in your class who you class as your girlfriend the little girl who’s hand you hold on the bus and who u like to share your sweets an walk into school with I’d like thing I handled the situation ok told you it’s ok they’re still your friends they’re giving u a chance make more new friends as at 4 I don’t want you to understand the pain of exclusion or to see so I hope I handled well and made u feel ok.

This sadly is the first of many relationships an break ups you’lll experience but was secretly relieved when we bumped into your best friend at the shops an he rushed to you to say hello and couldn’t wait to see you at school so you could both play as he’d put a smile back on your face.

I’m waffling now so I’ll stop I just wanted to write this blog an dedicate this blog for you for children’s mental health week to let you know I love you, I will nurture an support you an whenever u need am always here an don’t ever thing am not because whatever u face u can always count on me to be their and can come to me with anything x 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.