My holiday Season- doesn’t need to be controlled by the past

This holiday season has been a learning curve for me as I try and leave the past behind and build new memories. Sitting in my living room on Christmas morning I had to force myself to open that first present, for many years I have avoided gift opening till late in the day. This has mainly been down to a fear of repercussions, a fear that anything good comes at a price and a price that usually involves hurt and pain. Of course that’s me living today in the past, allowing the fear of my childhood to impact upon the present and not really looking logically at events.

I planned this year to open a gift as soon as I woke up, my psychologist and I had discussed how I could make this christmas different from the past and opening gifts early was a part of this. It didn’t quite go as planned, but I did start opening gifts within an hour of waking up. I decided opening one gift an hour seemed safe and sensible, this may sound odd but it was progress for me. In the hour between opening gifts I was able to reassure myself nothing bad was happening and remind myself that the present day is so different from the past which haunts me.

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As time progressed during the day I began feeling brave enough to open more gifts more frequently, so instead of one every hour it was soon two or three in one go. Parts of me soon realised that nothing bad was happening and these gifts came without a cost. That meant so much to me and to my alters; the other parts of me.

I had also planned to try hard at not expecting perfectionism, I grew up desperately believing that I wasn’t good enough and if only I could be, then people would stop hurting me. So today I live in this fear that I’m not good enough, or things need to be perfect in order for them to be safe. We live in a society however were little is ever perfect and piling on pressure to be something I’m not wasn’t helping me. This year my mantra for christmas was to be it’s ok as long as it’s good enough, and good enough meant less than perfect.

Being under less pressure didn’t feel different at first but maybe that was because I put myself under lots of pressure even when I felt like I’m not doing. I really had to work hard at learning to let go of this fear from the past, but it’s not so easy to do so. I made a decision early on in the day that trying to be everything wasn’t going to work, and I needed to give time to all of me. I stayed home whilst my family attended church and used the time to communicate internally with the other parts of me, it helped greatly.

It also allowed me to realise I just needed to focus on being me, whoever that was and ensuring me and my guests had something edible to eat. Cooking isn’t my best skill especially under pressure and yet we managed with help to make a christmas meal everyone enjoyed, even if I did leave something in the microwave. Yes I needed help and in years gone by that would have felt like a failure, but not anymore.

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I spent the day being me, whichever me was out and in control of this body we share, yes I am a person who has a past, a past that haunts me but that will not define me. So I enjoyed my gifts especially those aimed at my little alters, so with sticker books galore and a new dress on my Ted it felt right. I realise gifts no longer come at a price, with unspoken expectations attached and that no matter what life was like in the past, it isn’t like that now.

Whenever I started to feel doubt or worry, whenever anxieties rose I knew I needed to remind myself that it was ok. You see what matters now isn’t the past it’s the future I create for me and my family, it’s laughing when things go wrong, accepting there is no such word as should and it’s accepting being good enough is ok.

Yes my christmas it wasn’t perfect but looking back now I realise good enough was far better than perfect, I enjoyed the day far more. I valued the time spent with my family and I cherished the moments we spent opening gifts with one another, we appreciated just being together as a family. I wasn’t stressing so much or panicked, I didn’t fear making mistakes nor was I frightened which meant I wasn’t focused on hibernating as I have in previous years.

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The rest of this holiday season my focus is on being myself, not trying to be something I’m not, it’s about accepting who I am. Giving time to myself and my alters, learning to laugh and relax, to enjoy time with those I love and attempting at least to not keep looking back to my past. Most of all I’m hoping that I can build on the experience of Christmas Day in the coming days and year ahead, learning more and more that it’s ok to not be perfect, instead it’s far more helpful to simply be good enough.

 

Copyright DID Dispatches 2014

Upsetting My Alters -when head and heart collide

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There are times in life when your head and your heart don’t agree, when your conscious thoughts and your subconscious thoughts don’t tally. This week I feel as if my subconscious thoughts have finally burst through and no matter how much I pretend I can no longer hide my true feelings on one issue and sadly it’s caused a lot of upset.

I have always felt in my head at least that I accepted I had Dissociative Identity Disorder, the reasons why and all it entails, but for quite some time now others have disagreed. The main point of contention has been that whilst logically I understand it, consciously accept it my subconscious thoughts are not quite in agreement. I have accepted in part some of what others have said, but I guess I didn’t fully agree, not really anyway.

Yesterday was a turning point, it’s kind of hard to ignore things when you here your subconscious thoughts spewing out at 150 decibels as you scream angrily. It started over something really silly but I realise now looking back it epitomised one of the bug bears for me of having D.I.D . I had an item of clothing that I needed to return to the store, but to do so I needed the receipt, the receipt had been placed in a safe place. Now because I do lose things a lot I had been very careful with it and so I knew or so I thought exactly where it was. But when the time came it wasn’t were I last left it and thus all my hopes of going to the store and returning yesterday were ruined.

This may seem silly after all it’s just a piece of paper, but it summed up so much more for me, I hunted the house high and low, looking for this random piece of paper. I searched and I searched and as time past I got more and more angry, more and more frustrated. In the end I was shouting at the top of my voice and I was stomping around my home like a woman possessed.

You see I it really wasn’t about the receipt at all, all my actions they were because I knew another part of me had probably moved the receipt. Another part me had taken over control of this body we share and moved it from my safe place and that irritated me far more than anything. The receipt epitomised the reality of life with D.I.D, it was a symbol of life were half the time you have no real idea what’s going on. It was a stark reminder if I ever needed one that I share my life with the other parts of me, and that I am not like most people.

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As my frustration grew out spewed words that came with venom and feeling, my subconscious thoughts and feelings bubbling to the surface of my life. I screamed out loud the words “I am f***g sick of others interfering with my life”. This wasn’t aimed at a person, it wasn’t aimed at my PA’s or my son who by now had listened patiently to my ranting for quite some time, no those words were aimed at the alters who share this body, my body….they were aimed at the other parts of me.

The moment the words left my mouth and resonated in my mind I knew the cost, the cost of telling inside what I really felt. Almost immediately I realised that for months I have been kidding myself when I say I have accepted I have D.I.D, because deep down it hurts, deep down I haven’t. The truth is that whilst logically I get Dissociation and I understand why I dissociate and I think I understand the things I need to do to move forward, my heart feels differently.

My heart, my subconscious well it feels angry and frustrated that I’m not ‘normal’, whatever normal is, that I was abused and in order to survive I dissociated and that has left the legacy of D.I.D.
I’m angry that I lose time, I lose control and I forget things, that I see things in different ways to others. You see objects can seem bigger if I’m a younger alter and I can meet people who seem to be strangers and yet they know me, well they know a part of me. My mood is like a constant changing traffic light, as I switch between the different parts of me, my mood reflects the part in control. I’m angry I was betrayed, let down, belittled and hurt by people who had no right to do the things they did to me. I’m angry I have D.I.D and all it means for my life and so losing the receipt summed up so many things, it meant I couldn’t avoid the stark reality of my life, a life with a legacy of dissociation.

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I spent time trying to calm down, I felt tearful and I felt hurt, my teen who carries much of my feelings was sad and I knew I was the cause of her sadness. My head was full of voices as parts desperately sought reassurance, and I felt wounded, wounded by the dawning realisation My head and my heart were not on the same page. I tried to offer comfort, reassuring words and I let my teen express her feelings all the time I was apologising for hurting her. I tried to express my sorrow, why I had said it, that it wasn’t about the alters; my other parts but about the past, about having a legacy which has a cause I’d rather ignore, I’d rather forget but can’t.

Last night my protector part became very vocal, he wasn’t pleased with me at all and he let me know. He was honest and to be fair he listened to me too, all he said was accurate and it needed to be aired after all those words did cause hurt inside. My words scared little parts who felt rejected by me, who thought they were in trouble and they were afraid of my anger. My teen was hurting too and other parts angry and frustrated because for months I have tried to build bridges with my alters and yet deep down I’d said they were interfering in my life.

I’ve spent a number of hours trying to rationalise things myself and then explain to inside, I care deeply about the other parts of me, after all they are me, we are just fragmented because of my past. But whilst I care about them, want to build relationships with them and get to know them better I don’t like the past that created them. I don’t like some of the things that come with having Dissociative Identity disorder including losing things, it feels like a quandary really as if I’m trying to fit a square peg into a round hole. Accept but deny all at the same time, accept and like my alters but curse what created them.

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Thankfully my alters are forgiving, and whilst I still have to rebuild my relationship with them that I nearly destroyed yesterday, I am more able to be honest and say how I feel. Today I have had to give massive amounts of reassurance to certain alters, who keep nervously asking ‘do I like them?’ I have to keep reminding them it’s not them I’m angry at, it’s not them I dislike, and I need to keep reminding me that it’s ok to have these feelings.

For the first time I guess my head and heart are in agreement, I now consciously, logically understand the feelings I have locked away for so long about D.I.D. That has to be a positive things going forwards, but it is a shame the cost was so heavy I inflicted upon my alters a tirade of anger that wasn’t fair or just, and yes parts of me still feel rejected, scared and in turmoil as a result. I too now need to accept who I am, accept the implications of living life as a we, of being fragmented and having D.I.D.

As for that receipt, the thing that caused my subconscious to spew forth, well I asked inside if anyone knew where it was, explaining that it was important and I really needed it. In surprisingly it was located and I realised whichever part of me had moved it from my safe spot had done so with all the best intentions in the world, they’d moved it to an even safer place. How can I be angry at that, they were looking out for us and for that I am grateful, though perhaps one day we will be able to agree on a safe spot that all parts of me use, so the chaos encountered yesterday will be a thing of the past.

Copyright DID Dispatches 2014

The Day I Had To Say Goodbye To My Family

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 I can remember so well the day, it started like any other day in hospital I had woken after a night of poor sleep in my small clinical room. A room that contained just a bed and a wardrobe, and a crate of art things and personal possessions. I listened to my radio as usual, this had become part of my daily routine as a long term hospital patient. I was called to get my medication that morning and despite speaking to a number of staff, no one said this was to be my last day close to home.

My room was at the far end of a corridor and I recall walking up into the main ward many times that day. Talk on the ward between the patients was about Christmas, who was likely to get home and which of us would have to stay. I knew I was going nowhere, I’d be staying in hospital after all my Section 3 had only been in place a short while, but everyone including me believed I’d be close to my family.

The staff didn’t give any glue to the changes that were about to happen, in fact they talked as if I would be there over the festive period. Looking back now no one from the hospital team was honest to me, no one told me I was about to face turmoil, chaos and changes I couldn’t imagine. Perhaps they were worried about how I would react, yet in truth the surprise element only made things worse for me and my family.

I was aware that the doctors had spoken about moving me but no final decision had been taken or so I was led to believe. They had kept saying a move to a trauma centre would be a safe way to deal with trauma work and would be faster than doing it as an out patient. I had no clear understanding of the type of place they were thinking of, nor do I believe had my family. I do know we were assured of lots of things, none of which turned out to be true.

Looking back I’m not even sure that the staff making the decisions knew about secure services, nor did they really understand the nature of the place they were thinking of sending me. A private institution that supposedly could cater for people with a trauma history, that focused upon the control and restrictions it could place upon patients rather than relational security. Intensive trauma work should have meant numerous therapy sessions each week, with a raft of other groups and activities designed to aid recovery. That was the kind of care I was told I needed but it wasn’t how this place operated,  though given it was 200 plus miles away how could those tasked with making a decision really know.

That day progressed like many before it, medication, meals and some Occupational Therapy too, speaking to the staff was limited as they hid as usual behind the office door, failing to interact with the patients. In the late afternoon I recall the doctor visited briefly, I was huddled into a small room to be told the news.

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In that moment life changed the staff informed me that I was being relocated, relocated from an open unlocked NHS ward to a forensic medium secure privately run facility, not a specialist trauma centre.  I can recall it wasn’t a great conversation, it lacked much clarity or detail there were just simple facts. My family who had been informed with as limited a time as possible would visit that evening, I would leave at the crack of dawn the next day and a nurse would travel with me. I had no rights to challenge or question this decision and I certainly couldn’t say no to their plans to transfer me.

I felt bewildered, frightened and confused beyond words, I had so many questions so much fear and yet they told me it was the best place for me. I recall feeling as if the hospital managers just wanted to rid themselves of me, that they really didn’t care about what was best for me or my family. Looking back my views haven’t changed, the move was based purely on financial reasons this certainly wasn’t a clinical decision, not was it based upon risk. I had no criminal history, had only absconded; whilst detained under the Mental Health Act, once and was willing to work at trauma therapy.

When I ask my family about their recollections, the one issue that they recall is the limited amount of notice they were given. My daughter who was my nearest relative was informed late afternoon too, she and her Dad then tasked with trying to organise a visit that included my two sons. My ex spoke with me on the phone, he was concerned with what was happening and he was frustrated at the lack of understanding by hospital staff. He had wanted to take me out for tea, one last family meal before the move and yet the hospital managers wouldn’t allow it. I was being observed and monitored perhaps they thought things wouldn’t be too stable in my last few hours on their ward.

That family meal didn’t happen in the way he or the children had hoped, but defying hospital rules he and the children arrived laden with McDonalds take out. We would have a family meal even if it was different, we would have time as a family one last time, they would say goodbye properly.

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Food wasn’t allowed on the ward, so the staff ushered us into a side room, squashed in this tiny room we had our meal. We enjoyed hugs and a few tears, my sons and daughter gave me something to remind me of them. A photo was one memento I had to have, alongside a number of small hastily grabbed trinkets from home that the children felt signified them. One son gave me a toy model of a dragon, he was really interested in them at the time and there was also a soft cute little monkey that really summed my youngest. Each gift was treasured as I knew that the children had thought carefully about them and they didn’t want me to forget them.

They also brought a small case for me to pack some things in and they took home all my art things as I had been advised these wouldn’t be allowed in my new hospital.  My daughter was allowed into my hospital room for a few minutes to help me pack, it gave us time to briefly talk away from her brothers. As the oldest I needed her to lookout for them and more than ever act as a surrogate mum, I knew I wouldn’t be able to do that for a while.

There was lots of reassurance on both sides, the children promising to visit and write and call. I promised to keep in touch and think of them every day and I really wanted them to know that I would miss them. By the time it came to say goodbye there were tears, lots of them, because despite my mental health issues, despite my past, despite me at times wanting to die, we are a really close family. This move would impact all of us for many years to come, I wonder if the hospital managers realised how much grief and pain, how much stress and worry their decision to relocate me caused. I very much doubt it.

Looking back at that time in my life still hurts, I will forever remember the nightmare journey of those years, the nightmare of secure services. The nightmare of being uprooted and taken from my family, and the anguish I felt not just then but in the years that followed.

Seven years on despite it still hurting, I need to focus not on the past but on the future and to remember the positives that came from that time, for out of the darkest of times came hope. My family and I realised if we ever needed to the value of family, the bond we all share and the separation well it strengthened us all to cherish one another. We have grown together not apart because of that time, and I know my children truly love me despite everything and they know I love them more than words could ever say. I guess facing what we did means today we can be assured that no matter what we will always be there for each other.

Copyright DID Dispatches 2014

Out of the darkest of times comes hope – the hardest blog to write.

One more year on and it still hurts to remember this awful day when my life changed forever, I will never forget the nightmare MentalHealth Professionals inflicted upon me and my family by moving me to privately run Secure services far away from home.

DIDdispatches Blog

Today has been a significant day, 6 years ago I was driven by my local NHS trust 200 plus miles from home to a privately run secure service. I had been on my first ever section 3 for less than 2 months and was in an open acute ward; no lock on the door and a fair degree of freedom.

The professionals decided I needed trauma therapy and to get that therapy, they needed to separate me from my children and relocate me to the south west coast of the UK. Suddenly for the very first time I felt like a third class citizen, I was deprived of all my clothes bar the ones I was wearing, all my possessions except my teddy were taken away and locked in a room to be searched. I had to eat with a spoon, drink from a plastic cup and worst of all…

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Escaping – Learning To Accept My Alters

Giving Time To The Various Parts Of Me

Just over a week ago I escaped to a rural part of England for a short break with my eldest son, he and I live together and it felt like a good idea to have time away. The break was well planned and in a safe place, on a car free woodland site which offers lots of activities which you can take part in, as well as having free wi-fi; something my son stated was a pre-requisite to any holiday.

For me the week was about giving time to my alters; the other parts of me, who I realised often get overlooked and blocked by myself. By blocking them and not giving them time, I’m aware that I am adding to the internal chaos we all face, as they will still seek their time usually when I’m least expecting it. Part of my on going therapy has been to encourage better working with the alters to decrease the amount of unplanned switching that goes on, but try as I might blocking still seems to happen.

So I packed my art things, cartoons and other DVDs into the cases and set off, I felt so determined to make this work that I even set up an out of office message on my email. I was intent on time limiting my access to the internet, wi-fi or not and I made every effort to stick with the plans of limiting my time on social media too. These few days were about me giving time to me, all of me and it was about relaxing, resting and de-stressing.

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During the break I had planned a day at the spa just for me, as a way of telling myself I wasn’t being ignored either. I didn’t need to worry about phone calls or food or cleaning or anything really, I just needed to focus on being me the real me. You see its not easy at times to let my little parts have planned time, after all I am very conscious of other people’s opinions and reactions. I even find it hard to sit and let the little parts of me watch cartoons when other people; including my PA’s are around. Art is similar, one of my parts enjoys art greatly but switching off and giving her planned time to come out and take control of this body that we share is hard when others are around.

Each day I started with internal dialogue talking to my alters and planning the day, cartoons followed as I deliberately gave control over to the little parts of me. The intention was to put them first and it helped, communication improved between me and them and I found myself able to just be me. Whether that meant being one of my little alters, a teen or indeed another adult me didn’t really matter what was important was the fact I could be true to myself. Not ashamed of my switching or anxious about who I was or which me had control, and my stress levels actually went down.

My teen had planned time for art, she was able to enjoy expressing herself in a way that doesn’t happen so often at home. I felt less pressure and I didn’t try blocking her as much, on my Spa Day I decided to invite her along and so side by side we went to the spa, yes I have one body but it was definitely occupied by two distinct parts of me at this time. It was probably the best decision I made all week, sat in there internally communicating with this part of me felt groundbreaking. It may sound odd but I really feel like I know this part of me better, I don’t know what causes her pain or the memories she holds from my past, but I do know her far more than before.

On our last day I really didn’t want to leave and I escaped to the pottery painting studio to switch off, my teen alter popped out and took control of this body for a while. I was able to watch her as she enjoyed more time, which made me feel good as well.

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Coming home was hard I didn’t want to have to refit back into the busy world, were expectations seem higher and more restrictive. You see whilst I was away I could be the real true me, I could give time to my parts, I communicated with a new alter and that felt good too. I still had uncontrolled switching, times when parts of me take over this body unannounced and times when I dissociated too. But the environment meant I could just accept this and not worry, not feel ashamed as is often the case.

Switching isn’t unusual for my son and he would just deal with whoever was around be that me adult mum or a little who wants to old hands and skip. I realise that the person who struggles most with the switching is in fact me, I’m the person who is far more anxious about this, more conscious and more bothered. Yet in truth this is just who I am and it’s only by being me and by giving time to the various parts of me that I can move forwards. But its not easy admitting to yourself that you have alters; yes I still deny it subconsciously, and it’s not easy admitting I’m different to many people in society. Nor is it easy admitting or accepting there are things I still can’t do that I so wish I could, yes I may have made progress since leaving hospital but sometimes it just doesn’t feel enough.

The first week back in the real world facing day to day life and all it’s challenges has been really tough, I have found myself attempting to block giving time to the alters. I am conscious of switching and I’m conscious of other people’s attitudes and there have been times I have wanted to escape and not return. I have shed many tears and I’ve struggled with sleep, my appetite is poor and it’s been difficult beyond words at times.

But I’m persevering and with support from my family I am attempting to set time aside for the various parts of me, so we have had cartoons and lots of painting, plus sport and other activities. I’ve even found myself listening to music I wouldn’t normally enjoy; some part of me has obviously acquired it. I’m trying to be kind to myself, realise my limits and most of all accept me, accept all the different parts of me.

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copyright DID Dispatches 2014

The Impact of Mental Health Service Changes

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As I sat with my care coordinator this week discussing the likely transfer of my mental health services from one NHS trust to another, we realised this means more changes. I chatted with her about the number of care coordinators I have had since my discharge from hospital five years ago and how that impacts a service user like me.

I know I am not alone, many other service users encounter a constant flux of professionals who seem to come and go, no sooner do they arrive they leave again. Usually it’s been staff turnover or staffing structure changes which have meant job descriptions have changed and they no longer undertake the care coordinator role.

In 2009 I started out with Sam, I had been fortunate she’d worked with me since late 2006, we knew one another and I trusted her. However shortly after I returned to out patient services things changed. We soon had a list of people who came and went, there was Caroline a social worker, who left the department, then Marion a Community Psychiatric Nurse who left for a promotion. She was followed by Richard another social worker, who sadly never did understand us or the diagnosis, Jane came along next she was another social worker. She and I got along quite well until one day she cancelled my Care plan meeting without consulting me or my family, this caused friction and unnecessary distress as we had issues at the time that needed discussing at a meeting urgently.

When she left her post Malcolm took over, he was head of the team and so often difficult to get hold of, but he seemed to understand what it meant to engage with a client and treat them with dignity and respect. They stopped having pre meetings ahead of my care plan meetings which I felt relieved about, I hated the fact the so called professionals would meet to discuss me, decide what was to happen and then claim they’d consulted us. That’s what happened for years, in fact from 2004 to at least 2011. When I was told he was leaving it felt like I wasn’t good enough to keep anyone to work with me, and I remember thinking ‘not again’. I also feared things would return to the old way of working, I’d stop having true engagement and consultation and instead they’d resort to treating us like some third class citizen, who they made decisions about.

After him came Marion who by now had returned to the team on yet another promotion, she and I had departed last time on awkward terms and my level of trust in her was low. Trying to engage with a person who you don’t trust is a bit like walking on egg shells, wondering if you are going to make a mistake and constantly wondering if I could trust anything she said. In truth trusting her well it didn’t happen, I never met her alone always insisting my daughter attended our regular meetings so I would always have a witness to support me if she said anything later that contradicted what she had in fact said.

By the time Colin came along it was only 3 years post my discharge and yet I had already had six different care coordinators and one of them twice. Such changes equate to each care coordinator being with me for an average of just 4.5 months, how is this helpful. Colin was care coordinator number eight and thankfully he stayed for over 18 months, then his role changed and Fiona took over less than six months ago. Now I’m facing another change and this time it’s because of funding changes and me potentially moving from one trust to another.

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When I sit and think of all these changes and the staff who undertook the role prior to Sam, I can’t help thinking of how in the last five years staffing within NHS Community Mental Health Teams has constantly shifted. The turnover has been high, as merges, staffing levels, structures, processes and the like are changed by people in suits far removed from the front line and service users.

On top of the care coordinator roles changing, in the 10 years since I first began my life as a patient and service user I have faced changes of psychiatrist so many times. It’s as if you no sooner get to know someone really well, they actually understand you and how to work with you best, then it all changes. I have had 13 different psychiatrists in just over ten years, that equates to one every 9 or 10 months. How does this give continuity or allow a trusting therapeutic relationship to form, how does it allow for the skills or knowledge gained by a doctor about me to be transferred to another. After so many changes how can doctor number 13 understand me as a person, the things I have endured in the psychiatric system. Will he really know more than a brief synopsis of me, my diagnoses or the medications that do or don’t work. Will I even get time to build any kind of trust or understanding of them, or will I waste time trying to explain the complexities of my diagnosis to them only for them to leave as soon as they grasp it.

Many other service users face having their care coordinator removed altogether often despite having a severe and enduring Mental illness. Some people are being discharged back to primary care services and now fear they may never be able to access the secondary services they might need again, be that a care coordinator or Psychiatrist. Why because due to changes in access to secondary services, staffing cuts and funding issues, service user needs don’t seem to figure so highly.

I am sure it can’t help the staff either facing a constant state of flux as their case load or job descriptions change. I’m told the trust I am under currently is having a more stable period but I do find it hard to believe, after all each change previously has always been spoken of in terms of this is the last one. It can’t help when workloads are increasing and you feel stretched to breaking point, it can’t help to know people you’d once have seen now slip through the net. Surely it’s time for serious re investment in Mental Health services not just for the benefit of people with mental illnesses but for the staff too.

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Copyright DID Dispatches 2014