Mental Health Positive Practice Awards the biggest insult to individuals an families affected by especially to loved ones who’ve lost a loved one due failings in services and are having to fight for answers why, one of this years shortlisted entrants at her old trust did great things but is know at a new trust been their just over a year started a few weeks after my loved ones passing that trust have never behaved in away that’s worthy of positive practice towards my brother or my family but yet celebrated in the accoloade of the nomination they were a trust that demonstrated positive practice, I’d like ask then is positive practice sending a stranger to someone’s home no involvement in the care of the person who coming say sorry for their death is positive practice, is giving a grieving mother an siblings a book about bereavement positive practice is telling them the trusts going to carry out a serious incident review but I’m not involved in positive practice, Is positive practice telling a grieving mum who trying fit the pieces of a jigsaw together to find answers why that she can’t have her dead son’s medical notes because she didn’t have power of Attorney positive practice, is not having no direct contact or email address an having ring every dept within your trust to find the named professional handling the serious incident review positive practice, is it positive practice to then get handle the families complaint as well as the incident review, is it positive practice to give to someone who new post the task for them to meet the family but then decide can’t do and ok pass someone else, is it then ok then that person rush do an compile an apparently get loads of changes made coincidently the month report compiled an no family involvement positive practice and then except a mum say’s ok but yet not gone an discussed with her just sent her an her advocate through the post positive practice, is positive practice having a complaint drag on not resolved one that didn’t need be made if supported an work with the mother and family through their grieve an give them answers looking for positive practice. The nominee maybe worthy of their award but please don’t let the trust be part of that accolade and say their a trust that demonstrates positive practice because that just causes further hurt an pain an upset to families like mine especially when complaints still ongoing, answers still not given an now in the legal domain an why not named the trust that’s going to take credit for been a positive practice provider an I’ve to sit bite my tounge an stay stronger even pray an hand that upset to god an ask for peace in hope my mum gets the answers looking for so she can one day be able start to mourn an grieve her son but the why’s and how could happen and why not helped put the brick wall up an barrier to mourning up because till you can comprehend the why it’s a case then you can’t and I hate seeing my mum have to fight try be strong an worry about her not been able mourn an what will happen when she gets the answers is that positive practice have a family stuck in their grief unable mourn especially when you hold that power to answer but choose not to because saying sorry for the failings means accepting accountability positive practice. It’s also to individuals that live with mental health an access services an insult them theirs positive practice awards you shouldn’t need awards to make your staff be compassionate, challenge the way things work, initiatives should come from wanting to do through Listening an working with individuals an common sense not coproduction an through caring an isn’t caring why you signed up to the job, to make a difference an isn’t it what your their supposed to do anyway an what to your fellow colleagues an departments who want do great an positive things but are hit by staff shortages, high demands to access services, working out on the margins when hit by service cut right back an try make a difference an to them positive practice is risking burnout as they go extra mile supporting someone with complex needs go unnoticed acceptable not really because what they do goes over looked by things like positive practice awards but yet shouldn’t and they don’t care don’t get credit they’re just doing what signed up for their job, To all at the positive practice awards enjoy but to the trusts going share in ask do you really dare share in that accolade and also ask yourselves if it’s prestige an awards and accolades your driving force to ensure you get job done ask yourselves why, and remind yourselves individuals and families expect to be treat with care, with dignity, be listened to with compassion they’re not desirable criteria for positive practice it’s why you should be doing the job and providing the service you provide.
Today on my Facebook Timehop the pictures of your bench been exhibited at Leeds Art for Recovery Event popped up Tim, I remember during the time my grief felt raw an after I’d got to know Gary, Jon Swales an met your friend Kim at St George’s Crypt and the love she had for you an the journey you were on I knew as a family we had to honour that, recognise that an even say sorry that we didn’t take time see the Recovery Journey you were on, You were quiet, You loved helping make beds up in Crypt, helping out in the kitchen been one of the team, You too enjoyed blending in to the surroundings have a cuppa, meal read your paper you felt safe, welcomed even at home, we met Joe he told us what a good lad you were, wiped away my tears when the guilt hit why didn’t I get see this Tim, We heard all about TCV, Hollybush on clearing your things from that place you didn’t feel home or safe we found the files you kept certificates for various recovery courses, and your pride an Joy the Bench you’ld been working on it was beautiful. We got your Bench finished off a plaque put on, We framed some of your certificates sat them on the bench placed a cushion underneath to kneel on it would be a place sit an remember you by. I remember in my pain also feel excited about exhibiting for you, was nervous too, I remember anticipation Gary finding out if we could exhibit as subject was art for recovery and relief when said ok, I remember when I emailed your bench’s submission. A place to remember you by it honoured your journey, your fight for recovery an would now be a place we’d sit at talk to you as we worked through the devastation of your loss. I remember the day Gary collected for Mum’s I was nervous, prayed be safe in storage, be safe in transit hope people saw our sadness an pain but also our Joy for you, I hoped you’ld be watching down from heaven an beaming our Katie did good and she’s seen I did good too an hope you were smiling because you were an artist an one that was in recovery you were beating your addictions, you were giving something thing back, been a friend you were working your way back up, your Bench, your certificates they demonstrated that I just wished you were their with us as we celebrated and honoured that, I remember the day the exhibit arrived I was nervous, panicked an again excited worried would get their in time. Relieved my friend Gary from church was taking me across from Bradford to Leeds think in the car on the way over talked his head off don’t think he minded though, was lovely see my friend Sue from Church their too. I remember awaiting mum, Nat an Jay arrive was getting nervous would they make in time, also really wanted see your exhibit first before opened up to everyone but remember had wait whilst judging finished hoped they’d got your piece would see the love we had for you. I remember they opened up the exhibit their was a circus themed piece one were put heads in gaps an pic below pictured us do that, by your Bench their was a statue of a deer or horse facing your exhibit if you’ld have been their you’ld have attempted ride it, bargain for it probably would have found away have exhibited at home. I remember seeing your exhibit tucked in the corner , remember sitting an chatting with you couldn’t wait mum, nat an jay get their show them your spot when they came in their sadness an pain they were sombre nat had go early she’d let the guilt overwhelm her in wishing we’d seen your journey sooner and you should have been their wish I’d told her you wouldn’t want see her sad an you knew in your heart we were their and you understood, I wish could have told her felt same an that in away hoping entering your exhibit said that. I however though didn’t chase after her as thought would then be running out on you, your exhibit, your memory. I remember stood awaiting judging your category came up it didn’t win I felt crushed thought why didn’t they see the love for your journey your memory and felt sad for mum wanted floor swallow me up but then one of the judges said they had a prize for someone that epitomised why they were their, the reason why they put the exhibit on for, for the journey of recovery and you won the overall prize I wanted jump up and down scream yes you did it and know yes it was recognised, I remember showing you your certificate, your trophy an telling you wow you did it, I chatted to a few of the fellow artists remember mum n Gary an one of his colleagues an our jay stood chatting by your Bench an about you we all laughed and had same thought about the horse statue an in that moment I looked an smiled at your Bench because their we all were surrounding you an remembering you by. Your trophy know stands by your casket at Mums an your Bench has a place in my bedroom with your certificates on an your best shoes an cushions underneath like have a piece of you too at home with me and each night I tell you I miss you, I love you remind Myles it’s your Bench not his and laugh because your Bench really has become that place, that spot, that piece I will always have remember you by and I laugh because I know your laughing at the sentiment an I know you now know we were proud hope that when I talk to you, you look down and sit beside me and that your with me as I know begin recover from the pain of your passing, I love you forever an not a day goes by don’t miss you, I love you Tim.
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.
I was once optimistic Services would improve and improve for the better initiatives an policies around crisis care, no decisions about me made without me were made the NHS an services were to be Liberated the Recovery Bus, Coproduction Bus and Person Centred Care Bus rolled up into town. Did they make a difference, Did they leave people liberated and will the new 5 year forward initiative make a lasting impact I’m sceptical it won’t because I once believed that Services Could Change Improve Lives, Help individuals Regain Control and put the person an those close to them at the centre and provide a whole person approach attitude to care. I was wrong and my optimism that Services Could do that proved to be fatal. In the last few weeks the media has been highlighting cases were deaths are been investigated and a trust is to be investigated in one case. I’ve discovered that my family is not alone as we too are fighting for answers to how our loved one could have lost his life he did not lose his life however in an inpatient setting he lost his in a transitional housing unit a unit that’s supposed to provide care for vulnerable adults who were in crisis, needed mh support, support with homelessness an substance misuse. We put our loved ones care in the trust of services an the local authority that they would ensure an provide the care an support he needed.
We sadly got it wrong we like many other families now are fighting for answers we’ve had reach out too advocacy support, lodge formal NHS complaints, left outside the serious incident review process yet had our hearts ripped wide opened when had the people running come visit us at my mums family home but yet still no answers no been asked did we want input nor told what they will learn or put in place been sent a document though however that supposedly has in can we sign off on it. How can we if you’ve not sat gone through it with us or had us been involved in any of the process no one can make a decision on something not involved in but shouldn’t we have been after all we’re searching for answers to why, why our loved ones death was not prevented. We had to reach out to a charity Inquest because we didn’t know anything about what to expect, how to be involved the types of inquests and if not for them we wouldn’t have been put in touch with a solicitor an barrister but we’ve had to meet criteria for Legal Aid an that only covered representation to help prepare the case for inquest we then had to apply for separate funding for a grant to have barrister representation at the inquest but yet the Services who failed automatically have the money behind them to represent them but for families they have to search an find that help an that’s sad it’s also sad we don’t get automatically represented as do the services as it’s a live been lost here a life that mattered and a death that should be held accountable for and answers need to be answered how could it have happened and why and was enough done theirs also issue you had a duty of care an families put that trust in you and that is why then you become accountable because that trust was put in you. As a family member I witnessed my loved one passed from pillar to post, told to ask for help an when did told couldn’t help so why tell him ask for, I saw pleas from my family ignored, I saw my loved one slowly become even more invisible, dehumanised, made feel unworthy an in end not listened too, not cared for or supported that’s hard to face an accept especiallly when don’t expect from services that were supposed to be their an provide that. Sadly my loved ones passing won’t be the last an that too is hard to accept because you then wonder what will they learn from the incident report carried out an what will they learn from the impending inquest because sadly my brother won’t be last. I also suspect under the area he came under he was sadly not the only individual failed and probably other families going through what we are too. Whilst awaiting I see initiatives around patient safety, suicide prevention an the new buzz one 5 year forward. Will they make a difference I suspect not it’s just a recycled blue print that for last few years keep rewording add a few more charts an statistics an wow a new policy or charter to follow sadly not worth paper printed out on because sadly lives are continuously been failed, no one been held accountable, no lessons been learned from, their lives not mattering. Services are still been under funded, cuts still been made, workforces at breaking point, charity sector organisations stepping up and lifting the burden from you holding you up their the ones trying the best but are not given the credit for nor do you liase with them and assist in supporting someone you just quickly like pass someone on so not on your case load yet you need to work with them they can’t do it all alone but yet as with families you isolate them too. Crisis Care is shocking too the crisis care concordat act did that make a difference if did my brother would not have been turned away twice an also got in housing were living, but sadly their isn’t enough beds in or out of are, not enough home intervention teams and respite places available an thing we’re my brother lived is only 8 crisis beds available. Wasn’t the crisis care concordat act supposed to address that. Vulnerable individuals languish in police cell’s awaiting mh assessment some end up in the prison system locked up unfairly because at crisis committed offences but because not enough beds professionals say can see unwell but doesn’t warrant admission an so under public nuisance an anti social activity get imprisoned as well as many other offences during my brother’s care that too happened just impeded him further. It makes you wonder why as a society are we allowing that to happen why is the police and judiciary system allowing that are they powerless to act against the services can’t they enforce services to act especially when they clearly know difference between a vulnerable an mentally unwell person an hardened criminal. Why is it that over the years what’s published, guidelines not implemented you’ll tweet about, talk about have development meetings about but not implement, no changes be made and very little service improvement. Yet you market yourselves, give fancy awards, and too have buzz weeks fab change week the latest so what will you do what change an implement will you make what will you do to prevent lives been lost, Will you make your services inclusive to all, stop cutting services that matter, work with organisations lifting you up, will you stop labelling an stigmatising people under your care, will you stop turning people away because don’t fit your Dx an recovery models more importantly support loved ones who’ve lost someone under your care. Families shouldn’t have to fight for answers, set up justice groups an campaigns and have to search an fight for the answers because they need compassion an care an time to grieve they don’t just deserve empathy but also deserve be treated with dignity, respect and upmost of all they need the answers so can grief, hate say have closure an make pretending moving on with life’s easier. It’s also now time ask why in this day an age why are services still continuing to fail an sadly lives been lost.
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.
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.
This Christmas will probably be the most nerve wracking, rollercoaster of a ride but too probably be the most healing as potentially a door closes to allow a new one open a new I thought never have.
Christmas of the past led me to fear Christmas, not get happy or excited about I wasn’t bah humbug just felt bah nothing. I never understood a festive spirit Id only experienced a dark n miserable time. So in end I’d dread Christmas n I’d crash, sadness, anger, heartache, my black dark cloud boom took over n I’d snowball into oblivion.
I look back on past Christmas now yes with tears of sadness but too tears of sadness 4 that part of me n hope somewhere inside they too experience the newlife N new side n new journey be had.
When I look back on past childhood Christmas I have great love n admiration my mum but too I kinda get why she has the bah nothin feel for Christmas she’s experienced great grieve n bereavement her Grandad n too so have I in loss of a daughter my mums Grandad would have made my Mums Christmas as I too my daughters.
My mum too suffered heartache, pain n her own negative treatment n abuse n to this day does just from another abuser/abusers I call them bullies or cowards n wished they took a real long hard look at themselves n the green eyed monster that makes them feel way do n when pass comment it’s always been mum n her kids please see why n then ask would u still be same n so my Christmas wish this year goes to her n in new year she is left alone n can find her own happiness her past closes n allowed to open a new.
At Christmas time as a Child I suffered abuse but too my mum I witnessed her suffer n spent a few Christmas finding somewhere safe too go n refuge n one practically walking the streets, I saw her try make Christmas for us put on a face that Christmas n wishes n spirit I saw her try salvage n put back together trashed rooms n tress n worked hard try give us a good Christmas n still smile n inside her heart crushed. Id hear her cry to Unchained Melody n ask herself why, what’s point what had she done wrong it used break my heart did that.
I used to believe in Christmas n ever afters n chased that dream thing mum inside still does but Fears too as not ever had n till sees prob won’t believe in think I at one point the year n Christmas sectioned was due finally give up on.
This Christmas however is a new dawn for me I close the door on Christmas of sadness n pain I have my Christmas miracle my Son, I have someone who too we have our moments their 4 us n loves n protects us n I know tomorrow’s Christmas will be a happy time as I can have the happy family time tresses n through having my son ill Open door to Christmas door off finding a believe in again.
At Christmas my hearts n thoughts will be with those who have lost someone, childhood and adult victims of abuse n too those who lost n n wandering n hope find refuge n comfort n some joy and too all those in pain n suffering n engulfed in darkness n sadness I too hope that door closes 4 u as I too hope does 4 my mum.
At Christmas I too feel proud of those who will open n give up their time be their 4 those who need like the Samaritans, NSPCC, Childline, Cruise, Crisis, Shelters, places offer refuge n a place gomi women centres n charities like healthy minds who support people move on too.
This Christmas ill shed a sad tear as I say goodbye to Christmas heartache n smile at my son n Adam n thank my daughter my Xmas star 4 shutting the door n giving me my Christmas wish
my own family n new beginning n one thing thought never have a chance have ever after n a world only dreamed have n Christmas spirit
i wish next year my mum gets that too x