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.

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Everyday

Everyday I wake I pretend to be ok, I plod on I have too I’ve no choice I’ve a son who needs me, but everyday I wake with the stark reminder my brother’s gone, I go to phone his phone see how is scroll for his number but when get too am held back from phoning, when I’m on Facebook I go check his see what funny pics hes posted but last years worth of posts on his wall are ones I’ve tagged him in hoping in heaven he somehow see’s. I’m laid here now tears slowly streaming down as I thing about him wishing he was still hear, I wish he could say he was ok wipe my tears tell me to get some sleep, it’s late and ask me why I keep waking up at daft o clock in the morning an just lay staring into space. I wish I could scream at him yell at him call him selfish god knows what but I can’t because what he did the day died was a stupid an desperate attempt at get someone to listen to him, help him. I refuse believe he was giving up on life on Mum, on me , on jay n nat n robynn an our kids because kids especially were his world just as he was our’s. I know his Mental Health drove him crazy it did us too we were at a loss time an time again not only Tim reach out for help we did too, We’ve had no support, nowhere to turn too we’re now banging our heads against why an getting people address an learn from failings in his care just as much as Tim banged his head against brick walls trying to get help, I often wonder why no one supporting Tim picked up on the signs he was not ok did not notice him slowly disappearing from the picture, disconnecting with his volunteering, cutting himself off, I often wonder why placed somewhere he didn’t know felt lost an outsider out of his comfort zone not knowing anyone an stuck not getting help from somewhere supposed be supported, Everyday I taunt myself ideas, thoughts reading through paperwork we get passed trying put the jigsaw together but all I get is more questions never getting close to the bottom off never getting the answers to what went wrong not been able fix lessons be learned from. Everyday know feels like a constant pressure a heavy weight trapped in a cycle a haze a whirlwhind trying to clutch to something that will help get the answers and piece together the solutions but everyday feel dragged further an further apart. Every is now a struggle a constant dark fog of grey mist but can spark to red mist when see something or hear something and become hypersensitised too, Every day draws on longer an longer , lonelier an lonelier it’s isolating , it’s frustrating it’s become the loneliest place ever now has the world an it’s hard to paint false smiles, it’s hard show interest in the mundane on one hand want friends an people to care on other you don’t because they can’t fill same space they’re really not person you want see an you want them be good enough but sadly aren’t they can’t fill the gap, can’t step into shoes, interact same way can’t be just like Tim. When out an about my mind will play tricks I’ll see people who look like him chase voices of people hear who sound like him and when realise not is then a slap to face harsh reality hits not him I should remember but I don’t because try pretend switch off from, yearn escape the realities off but can’t I have persevere, try pretend I’ve cracked self maintain the mental health but only just doing dangling by a thread. I wish could wipe the cobwebs off me away, wish could erase the past put Tim back in we’re should be but can’t I’ve just to try face. Accept an one day grieve I don’t want have battle everyday for answers why failings I want put measures in place to prevent deaths like Tims an I’ve to do so logically piece the jigsaw to be able then mourn in peace in a graceful way not angry with tormented by an we’re feel no pain. I don’t want to talk about or thing about but nature of his death but. sadly because can’t grieve an trapped by fights for answers for am stuck in a tidal wave of thoughts about preventable suicide, patient safety, breakdowns, communication , systemic failings I want to pop the thought bubbles, push them away, take a break from just for one day wish could go back to before Tim changed before he passed so can try get normalcy in my life back regain control am make everything ok again.

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.

#Me Too

Their are times I don’t agree with certain social media movement #tags their are times do and #me too is one of those that do people been empowered to speak out say me too if been a victim of sexual assault or harassment. Anyone regardless of age, sex, sexuality,race,faith,disability is at risk at sometime in their live at risk off.

I have varying Mental Health Diagnosis an all of which I have no choice but self maintain because they are the result of the trauma of been a childhood sexual abuse victim it’s taken me a long time too no longer be ashamed of myself, to no longer feel dirty, to no longer hate myself, I had to learn to love myself see the good in me to be able let my family in to let them love me an me be deserving of that love an me love them back and to trust them let them be apart of my life trust they’ll protect be and be their, I tested them, pushed them away took the pain an anger I felt out on them it took them to say you scare us when you get angry but we know your hurting it’s ok was the big breakthrough needed I didn’t want no longer take my pain out on me and nor them either, I didn’t blame them.

I once got the opportunity to film a portrait of my life sadly my old trust didn’t air or broadcast but that doesn’t bother me because my mum whose also been hurt in the past got to watch and got to see and the girl on the screen me got to tell her I didn’t ever blame you an never did.

Been a victim of childhood sexual abuse continues to impact my life also does my 3 1/2 year old sons life if people pass comment about him, parents judge his behaviour and tell him off have been known turn me from calm mum to psycho mum because in my eyes I perceive as my child’s at risk from harm risk of been hurt the child abuse victim in me goes into survival self destruct and attack mode it’s not nice for me nor people around me experience and in instances I flee just scoop my son up and go but fleeing does me then a greater harm because I then internalise all the anger an frustration onto myself the childhood abuse victim inside me turns on me I’m a coward, why did you run, challenges me and can make me feel then very intimidated and in cases be paranoid and intimidated by others.

As my son gets older he’ll get used to how I am an he’ll get used see how get and he too is at risk of unnecessarily learning survival mode Behaviour I can’t help how I get nor can I help my son learning the person who hurt me though he’s too blame he preyed on me, groomed me an manipulated me destroyed me for a time an my family he’s too blame. Everytime I go into survival mode it’s because I was vulnerable, a child, I couldn’t protect myself, keep myself safe my control was took away and to an extent my abuser still has a hold on me still has some power over me.

Speaking out though gives me some control, some power, gives me strength to speak out and say Me Too and I don’t do for pity I do because I want others that maybe not yet spoken out feel that they can do too because the more people say Me Too the more control and power we can reclaim back, people that have victims can become surviviours no longer blame themselves an be ashamed.

I recently chatted with someone about my abuse they asked me because I’m a Christian does it mean I’ve to forgive my abuser an I told them no it dosent it’s ok to be rightouse about my anger towards my abuser in time I may want to work towards forgiving him but at the moment I don’t as would mean overcoming an working through that trauma an at the moment trying pretend is not their and boxing up is easier, I did tell them though I have had to work on forgiving myself an forgiving myself for the hatred had towards myself, the child abuse victim inside me has had learn to forgive me because a part inside me blamed her but she was defenceless an I see now I couldn’t prevent what happened I can just protect that part now as I do my son, I’ve had to forgive myself for blaming myself, holding myself responsible and for been ashamed of myself and even allowing myself be further sexually exploited when put myself at unnecessary risk from harm when behaved in promiscuous ways because hated myself that much.

Saying Me too and speaking out means I too can take off that burden of shame held onto and used against me an now let go off.

I hope people reading and Too been victims can find strength say Me Too as you’ll see not alone x x x Time to Take your Power Back x x

Pill shamed for not taking – You can’t really be depressed then.

Theirs been lots in the media debating the pro’s an cons of taking Medication for Depression, BBC Panorama highlighted the dangerous of an how individuals became mass murderer’s an that’s in extremities.

I suffer from a Dysthmic Disorder in layman terms a neurotic mood disorder, Depression,Anxiety, Obsessive and Compulsive Behaviours, I have complex PTSD hear voices and Dissociate.

I don’t take medication for my conditions I used to they were harmful for my physical health I ballooned to just under 19 stone was a walking zombie did not interact, engage the world passed in a blur and still I was seen as disengaging by services it wasn’t that I was disengaging but the needs completely shut of all my receptors so I couldn’t engage.

The conditions I have are the result of Childhood Abuse, Losing a Child Born Still Born and the result of been a revolving door patient on an off throughout my teens to my early thirties. The medications I were on varied from Anti-Deppresant’s, Mood Stabilizer’s, Anti-Psychotics, Relaxant’s and Sleeping Pills. The medications just sedated my so called behaviours to me their now just my traits be it survival, be it instinct, be it my defensive mechanisms. Dissociation at times though can be a pain when things in my locked box want to surface as that hits when am at my most vulnerable an most risk and I’ve just to ride it out.

It’s been hard not been on medication and not easy but I try face each day as I can medication will only plaster over the scars of my past, therapy can help me address but the unstable emotions and how I handle things they’re what I’ve to learn to address, I recently nearly ended up back on medication I struggled with coping with my brother’s passing thought long an hard and in my heart knew wrong as it may take the pain away numb it but eventually have to face it and so may as well fight may way through it now but also the anger side of my cptsd has come in handy as I’m using that part of my grieve to fight for him wished did more when he was alive, also if agreed go back on the slow cocktail of men’s would build up again I’d be talked into needing more for different things and different behaviours an probably extra Dx and my son he needs me, he needs me to be strong for him be brave for him most importantly be alert and functioning and be all he needs so as hard as the days are I throw myself into It theirs days I feel mentally drained, exhausted, on edge, thoughts scrambling but for my son I attack each day, I also do for my family, I do for my brother too as he so wanted overcome his past.

Medication can help mask things and give me a rest from but in the end they’ll stop me from seeing the beauty in the world even though theirs too sadness in it, the voice i thought so hard to re-find would too agin be lost and one thing I’ll always tell my son fight for what you want well if I’m not living it he can’t practice it.

Don’t get me wrong it’s not easy theirs days when I can just drag myself up ready, Myles though he’s always immaculate, theirs days I’ve snapped my anger lids burst an that’s not been good for person who got brunt off, theirs days I have just crumbled just broke look liked a car wreck and all around gets to much and times to preserve myself I’ve to shut out the world keep my bubble to myself .

I’m not telling people to stop taking mess nor if they help you to stop believing that they don’t an to stop.

I’m asking that as I respect medications for you please respect though it’s not for me an in fact has been life altering an harmful an I don’t want that for me, I also need you to respect that just because I say no also does not mean I don’t have my conditions an my experiences an opinions like well you can’t be that bad if you don’t take because I can be.

The brave face people see is just a mask as if accepted people a) don’t get or understand me so I give up trying explain, b) if I don’t try I give up an where does that leave my son an family and c) if I go on meds the world will be shut out again.

If their was better monitoring of my help, safeguards an provisions that stopped me going on more an more mess then maybe, but I know for me I have to address my pain be it therapy, be it pretending life’s ok or be it writing my blog like now, I’m exploring having faith in my life that’s been a challenge an battle of perseverance, I throw myself into soft play just as much as Myles an that s my anger energy, we do crafts, go for walks we play the child in me likes that as that’s reminded sometimes life is good, being an activist for awhile was hard but then I missed it so am slowly going to re-dip my toes in the water and look to do again as my heart an a part within me missed that an so listening to myself keeps me going.

I suppose because I didn’t feel listened too an knowing my brother wasn’t listened to is why I’ll always shy away from medication in time that may change I’ve to meet that one person who will listen and give me the perfect care package so till then I’ve just got to listen to myself.

Whilst I do that though please don’t shame me an belittle my depression, my pain just as I don’t pill-shame you an vocalise the drugs are bad. It is these debates that create divides in the mh community an we need to be supporting each other and each getting the support that works it’s time focus on getting it right for everyone as at present services aren’t working and we need to work together to get that so let’s #endthepillsdebate.

I have issues but don’t we all.

I love how its always me thats the one that will always have issues kinda makes me sad people feel that but to laugh at but hey don’t we all have some more so than others, some more open about some keep hidden because of attitudes of others about people having so called issues. 

I’m loud yes, passionate yes, fiery at times but every strong female is, I prob at times take on to much but most good hearted people do, I may not get paid but I work extremely hard at what I do n to say I have issues well it dose not  stop or hold me back in fact it drives me I may not get paid but happy I get to travel up n down the country talk at events like NHS Confederation n too respected by the public health speakers. I too play my part ensuring services deliver services fit for all, on various different boards and strategies, work to make positive change. 

 

Im happy, Im carefree I throw caution to the wind I conform to be who I want to be I don’t laugh or belittled or put others down to feel good about myself, I run around  because I choose to not because n expectation, 

Im their for my family, friends loved ones at drop of a hat ill support them, guide them n maybe if see something inside ill push n  to be all can be I’d say that makes me unique and someone you think very much dosent have issues.

I don’t drink, nor smoke nor take drugs. I may have odd drink, or sugary sweet but that’s my lifestyle choice n not because I supposedly have issues.

I tend to find too have issues a change or disruption but think half population does, I too only have  issues when people who know very little abt n me try pass comment or belittle or comment ill always have issues. 

I’m happy most of time to content most of time, I have my strong points my good characteristics, I have my bad points or flaws when passionate or feel backed into a corner I rant n come out fighting not literally though but that’s not issue that’s part of my characteristics/flaws n don’t we all have that. 

I’m not ashamed say we’re I’ve been nor does it hold me back or make me a bad person or leave me at a disadvantage Im actually quite smart n streetwise too, I too challenge myself being the person I want to be I have dreams, hopes, aspirations, I work towards them

I can stand out on my own n needs be look out 4 myself have  me but what people don’t realise when you throw stones at me your not just hurting me but them n it not fair n nor will I sit n take insults, put downs, snide comments or jokes nor be upset as u upset me but too i have a family n friends n bf friend n when u try hurt me u actually upset them too nothing is going to disrupt or upset that an that not because have issues but because I protect all that I love that includes me. 

I think before people pass comment on me should take a close look at themselves n if too comment on other people n their lives isn’t it you who has the issue as your lives no interest to me so god knows why mine is to you then can only say you prob have issues too.

 

I try educate people n get people to change attitudes I’m too fair to a point n sometimes I thing what’s point as some people thing once u have issues you always have n it not always case it’s what do with. 

 

We all at some point have highs, lows, good, bad, stressors we all have issues at some point so really were all the same n no different. 

 

Thank u 4 reading n for anyone too facing affects of others don’t let it bother u as if a problem to them is their issue n not yours you be all can be.