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
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.
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.