Therapy and life afterwards

This past week Therapy came to an end and a life transforming journey with my psychologist that lasted 4 years  is now over and to say it exceeded my expectationa would be an understatement. Therapy has provided me with an amazing opportunity  to grow, to develop an understanding of myself and establish a greater awareness of what is important. So I thought I’d explain a little of the journey and what the future holds too.

When I began I hoped that I’d find an opportunity to lose less time, to be a less unhappy and disfunctional person. Yet during the four years I’ve really changed, not only am I far more content and happy but I’m also more aware of how to live with my past. Letting go of the trauma, the anger and the guilt has really assisted me in coming to terms with that part of my life. Learning to accept and communicate with my internal me has enabled me to feel more at ease and to accept the feelings of my inner me’s are actually mine. Taking ownership of those feelings and no longer being afraid of them has taught me to no longer fear emotions however strong or overwhelming they feel. I’ve developed a resilience and found my inner strength to accept emotions, accept them and work through them.

By learning to have fun, something I was encouraged to do from early on in my therapy, has allowed me to recreate and partake in activities I had once been deprived off in my past. Whilst accepting that I cannot ever change the fact there were experiences I lost out on as a child, I can make up for that time by allowing myself the opportunity to have fun now. When I first paddled about a year into therapy I enjoyed the fun and also grieved for the loss of my childhood, but that grieving and the anger it stirred allowed me to heal in ways I never imagined. Being encouraged to be creative was quite enchanting, I never realised how relaxing art could be and yet now it is a regular activity I undertake and enjoy. My first few art classes I felt inferior and useless, yet my psychologist continually reminded I wasn’t and as I learnt to value my art, I learnt to value myself. Throughout my first years in therapy I continually derided myself, silly and stupid we’re commonplace in my vocabulary. These words a sign of the lack of value I felt for me, and that lack of value was continually oppressive and held me back. Each time I said a negative word about myself my psychologist corrected me, pointed it out to me so often that in time I found myself correcting me. This work over time allowed me to value me in a way I had never done before and that has been transformational on many fronts.

15 months in I had told my psychologist I was unable to sleep in my bed, and was fearful of my bedroom, he utilised CBT to assist me and I was advised to try venturing into the room each day and remove just 1 item from the clutter I’d used as a barrier to the room, soon 1 item became 2 and so on, the room soon cleared and whilst  I still felt fearful he persuaded me to erect a tent and camp in there.  I’ve blogged before about the tent but in summary I slept in a tent for months, still unsure if it felt right. Then just over 2 years ago I decided to go bed shopping, with a new found belief and value in myself, I bought a new bed and I bought fancy bedding and pillows too.  This investment in me was critical looking back, as it was a sign of my worth and my belief in that worth. Thankfully the bedroom no longer holds fear and I no longer have flashbacks or nightmares, indeed I quite enjoy my bed and my room, which to me is a symbol of how far I’ve come.

16 months ago as we persuaded my funders to continue my therapy for a further year, at the time I was fearful of therapy ending and of how I’d cope, I knew I wasn’t ready to walk this journey alone. Thankfully they agreed and so the last year has been invaluable. The last 15 months as been about growth, learning to live with the complexities of life that everyone faces. I learnt to say no when it’s needed and whilst that has shocked some folks it’s been helpful to me which is what matters afterall. I realised I had become a people pleaser which is actually quite draining and certainly not needed. If people can’t accept me as I am then that’s there issue not mine. So I’ve thought long and hard about what I want to do, and I’ve changed my commitments to suit my life not others. This increased belief in oneself is quite weird at first, but soon becomes truly inspiring, I have managed to do things alone I never dared belief possible and found I enjoy my own company. I’ve realised I can feel confident enough to travel alone which has been invaluable given my eldest child has relocated overseas. I have been blessed to enjoy fully family events,  this has included attending my sons wedding last year and no longer feeling insecure or vulnerable and I no longer feel like the cared for mum who was inadequate, but someone who can truly be there for their children. I’m fortunate to have become a grandparent this year and that has brought so much joy and in the last year I have grown in so many ways that I feel a better mum to my children, a better friend and a better person all round.

In truth I’m creating memories to replace the old tarnished ones, I’m building a future for myself and I’m gaining strength in so many ways. I have enjoyed picnics with my children where I’ve sat on the grass and been involved, this is so unlike the past, when I didn’t feel good enough or allowed to join in. Celebrating my birthday nearly 2 years ago allowed me to create positive memories of this date and I’m developing new Christmas traditions to again build positive memories for the future.

Therapy has taught me to belief in myself, to belief anything is possible if you try and that recovery and hope are there for the taking. I’d be lying if I said it was easy, because these past four years have been about work, hard work on my part and dedication on the part of my psychologist. Recovery is quite simply a journey, where a client and a therapist walk together side by side. I couldn’t have found the real me without both my hard work and the direction and skill of my psychologist.

As this chapter of my life’s comes to an end, I know I am ready for this third chapter of my journey of life, I’d be lying if I said I wasn’t slightly anxious because it’s been a long time since I walked life alone and yet I now have an Inner belief in me that says together all of me can do this.  I work in a collaborative way with all the various inner me’s, I’m no longer separate parts I’m one person with an inner system of inner me’s and we can and we will deal with whatever life throws at us.

I feel so blessed and so thankful to my psychologist, and my family who never gave up believing in me. I make no excuse for admitting I am a Christian and as such each and every week of these past few years I have asked for guidance when entering the therapy room and I truly feel God has guided me on this path. The transformation has beeen truly amazing and I am so grateful. Finally I’d like to say thank you to all those who have supported me in any way on this journey, the funders, the ‘DID’ community and my friends.

Now as therapy ends I step forward in hope, hope for the future and hope for better awareness of the complex misunderstood conditions called Dissociative Disorders. With a inner belief that life is for living and that I have the strength and skills to live life in all its glorious technicolour.

: This blog is dedicated to my psychologist and my children to whom I will be forever grateful.

 

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To discuss trauma or not?

Over the years I have encountered many therapists, I have seen people of varying levels of expertise and the way they work has been very different. Most of those who I saw in the past had a keen focus on the trauma itself, desperately wanting me to regurgitate the events of my childhood. But is that the best approach for recovery, does it help to go over and over the bad things that happened.

 

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Due to my dissociation I have many gaps in my memory of my childhood, my brain has been good at protecting me and locked many horrors away. I have found over the years those memories spilling out into the here and now, snap shots of trauma which often haven’t been the full details of an incident. The memories have often been just enough to give me a clear idea of the event, what happened without all the terrifying finer details. Sometimes they have been drip fed to me, so a snippet of the event one day and then a week later another piece of the event. Weeks pass and eventually the whole horror of an abusive event has been revealed. Other times the memories come flooding back in an instant, with a flashback or body memory overwhelming me and sending me into a bit of a frenzy.

 

There are times when I really can’t cope with what I’ve remembered, it becomes too overwhelming, too consuming, and yet I have learnt to process in a better way too. So I can say I can’t deal with this particular trauma memory now I need to wait till therapy to think about this in any detail, it’s my way of protecting me. I can now accept sometimes that I’m not at risk right now, but it’s not easy and any trauma memory holds feelings of terror and pain.

 

Trauma and abuse have been a significant part of my life, it started when I was small and continued for years, in fact all through my childhood. I can’t name all my abusers but I can at times see their faces, I can tell you much of what happened because my memory has now revealed many of the horrors I endured. But I still have gaps in time and I still have periods of abuse were I only have part of the memory.

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In therapy for much of the early years of treatment, the professionals who treated me wanted me to share that trauma with them. They felt that me and in turn my alters revealing the past trauma was important to recovery. I would be encouraged to share the past, to regurgitate the horrors in all their gory detail, often through tears and great pain. Yet I never had the ability to process those memories, I never felt attached to them.

 

For much of my early years of treatment I felt irritated at the thought these people wanted me to share my inner most secrets. I recall one therapist and I falling out over the fact she would push for more graphic detail, when I felt it wasn’t needed. I didn’t feel able to share my secrets and I knew I didn’t have them all, my memory had stored them well away, locked out of even my reach.

 

 

One would push for information which I didn’t have, causing me to dissociate in session and thus losing time. She would expect me to spill the beans as she put it, yet I didn’t know what the fragments I had meant and I just wanted to understand. Throughout this time I wanted to know what had happened in my past, why I lost time and why I would dissociate. It just led to more and more confusion and concern, which at the time didn’t help me or my recovery.

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One therapist insisted on naming my parts and seemed to want to give them identities, I felt that my alters were totally different people and their memories were not mine but theirs. I now realise of course my alters are parts of me and the memories they carry are mine, locked away from me to ensure my safety and sanity at the time. I also now understand we all dissociate every single one of us, you and me, when we drive a familiar route and suddenly realise we are further on than we thought – that’s dissociation.

 

Of course I dissociated in a bit more of an extreme way, I switched off as a child to avoid the horrors of my abuse and it probably kept me alive. I know now that my alters are just parts of me, not separate people as such but fragmented parts of me, they formed when I dissociated as a child. Unlike most people who grow up in a seamless way, my 5 year old me wasn’t able to become 6 year old me she stayed locked inside of me – held by the terror of that time. Hence why I have lots of parts, lots of different bits of me who today are my alters, they carry memories of my past that I didn’t know. They need time, nurture, parenting if you like and they have skills and talents which I so value today, but until recently didn’t realise I had. Some have a function, like my protector whose job was to carry the frustration of not being able to protect myself as a child. I couldn’t protect me back then, but today she ensures we are safe and protected especially when threats similar to the past come to the fore.

 

So the idea of giving them separate lives and detailed identities wasn’t in reality so helpful, the memories they hold are my memories. I need to process those memories as my own not someone else’s. But do I really need to regurgitate my past in all its gory detail, do I need to try and reassemble each trauma memory in order to recover from my abuse.

 

My current therapy does involve trauma work, but not in all its minute detail, the aim isn’t to regurgitate the past as such, it’s to process the emotions that are attached to those memories. I don’t need to divulge every moment of a trauma event, but I do need to explore how that trauma impacts in my today. So I am having to process the emotions that go alongside the trauma itself, but I don’t have to start going through incidents in the way I was forced to years ago.

 

Processing trauma is an integral part of therapy but how that’s done can vary greatly from one professional to another, I know for me the key hasn’t been to regurgitate the past, it’s been to process the emotions that go alongside the trauma, those emotions that co-exist with the trauma. Emotions matter more than the actual trauma itself and learning to understand that and deal with them is so important on the road to recovery. I do not see myself ever regurgitating the past trauma again, it will be discussed in a more generalised way. Instead I will be focusing upon the feelings and how it impacts me now, rather than trying to remember every little detail of my past.

 

 

Copyright DID dispatches 2015

Surviving a Therapy Break

For the past couple of weeks my psychologist has been on vacation and that has meant no therapy for me. Whilst a couple of weeks may not sound like a long break it hasn’t been easy and I find such breaks difficult to cope with. The reality is that a two week break has meant I’ve had no therapy now for approaching three weeks and that is an extremely long time. 

Now don’t get me wrong I know my psychologist is entitled to his holiday and I’m grateful he only takes a two week break, I’ve had therapists who take a whole month off. Yet it is never easy for despite all the stabilisation techniques I have learnt I always seem to find myself struggling, when there is a gap in sessions.

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Now I’m fortunate in many ways as I can still email my psychologist if it’s desperately needed, though I am not guaranteed a response. Previous therapists have just gone off on a break and left me high and dry which believe me is much much worse.
The break this summer hasn’t been easy and I have tried to plan ahead in order to mitigate the impact of no therapy. So for the first week I took myself off on holiday, surrounded by family who I knew would support me if needed. Having something to distract me helped and the holiday did work for the first few days. The second week I made plans to go out for the day and took myself off to the middle of nowhere surrounded by the sound of a babbling brook and beautiful scenery. The fact it rained wasn’t an issue but despite the attempt to distract and fill my time I found myself struggling,
As more and more thoughts raced through my mind and I began doubting myself and my own self worth, I realised things were not going great. The longer the break the more I struggle or so it seems and by the second missed session I was floundering, in the end I had to resort to sending an email, disturbing my psychologist and admitting I was finding things tough. The main concern for me wasn’t a flashback or a memory as such, but the feelings of anger and frustration I felt about the abuse I had endured. I also found myself consumed with grief once again, grief about my past and grief that these things, these dreadful things hadn’t just happened to an alter, they had happened to me.

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In the end as I typed my email I realised I needed to vent, I needed to let go off the anguish that was consuming me, overwhelming me. I knew that the best thing I could do given I had no idea if or when I’d get a response and that even if I did my psychologist wouldn’t be able to rectify how I felt was to vent. So in true style I opened my car window and screamed at the top of my lungs and poured out the anguish and anger. I cried buckets in the process and I guess most of all I admitted to myself these feelings of grief that I held.
My screams and tears helped a little but they couldn’t take away my fears or concerns about messing up, or my worries that I’d get it wrong with my teen alter. Thankfully my psychologist responded the next day and his words well they kind of resonated within me. He told me not to forget I wasn’t meant to be my alters therapist, that I wasn’t in this alone and to remember we were a team. The fact that he can assist me in my sessions and help me to process the anguish, the pain and the grief is reassuring. The fact I’m not alone of this journey of recovery is a positive, the reality is I have a therapist willing to help me on my journey and together we are a team.
Yet of course the break in sessions has been difficult and I have found it at times over whelming, currently it is a team of just me and my alters for my psychologist isn’t here, he’s away. This coming week sessions will reconvene but as is normal I am likely to find it hard for the first couple of sessions after the break. I can’t help this its just a fact of life, for me a break impacts upon my trust levels and my therapeutic relationship with my psychologist.

 

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Breaks in sessions are never easy there have been times in the past when I have spiralled out of control and resorted to negative coping strategies. Yet today I find myself more able to cope and the fact I have email access is a huge benefit. The truth is being able to see myself as less isolated helps me and the stabilisation work we have done is really beneficial too. But an absence of two sessions is as much as I can cope with currently, I am so relieved that after this weekend my sessions recommence.
Looking back I’m glad I now work with someone who isn’t off a month at a time, the impact of that would I know cause me much more difficulty and hinder my long term recovery. I wonder if those therapists who choose to take a month long break realise the impact on their clients if they did maybe they’d think again.

Copyright DID Disptaches 2015

Therapy – what a difference 18 months makes

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This week marks the half way point for my therapy, well it’s half way through the agreed three years of funding. I sat in therapy on Monday and thought about how I feel at being at this point, after all when I first started therapy I had so many ideas of what it would be like. In fact I had ideas of what I wanted to achieve and it’s been weird really to see were I am now.
My concept of successful therapy has been changed and the possibilities that have been opened up have grown as we have progressed. When I first began treatment with my psychologist I had previously seen a psychotherapist, she had basically helped me to regurgitate my trauma. She did understand D.I.D. which made a change from other professionals I had encountered. However we had not really moved forward, we still had 24 hour care and I had no internal communication of any kind.
So when I started with my psychologist what I really wanted was to move forward, to just be less chaotic in my life. I thought I had to work through all my trauma in order to progress and to remember absolutely everything that has been hidden for so long. Well 18 months make a huge difference to attitudes, to beliefs and it’s made a huge difference to me as a person.

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I can so recall that first session when my psychologist told me that he had no magic cure, that he only saw me for 1 hour a week and that meant I had to work hard on my own the other 167 hours. I thought he was a bit forward and well I sat and thought I didn’t expect a magic cure, I knew I wanted to make it work so of course I knew that I would work hard.
I spent a few months trying desperately to check that I was working hard, that professionals knew I was trying my hardest – I guess that was my insecurity playing out. I didn’t believe that talking to myself, my alters, would make any difference and it sounded stupid and yet it’s being transforming. I soon began to realise the psychologist didn’t treat me like I was unequal, I didn’t feel like a patient in fact it’s often felt like I’m visiting someone who is an acquaintance or maybe a friend as we sit and have a brew and chat away as equals – I like that.
I think the first six months I was basically building up trust, that’s been hard for me and yet I did find myself being able to do the things suggested without much difficulty. I could say if it wasn’t going well and we rarely went into trauma, well not in any depth and that felt ok at the time. In fact I was afraid to discuss trauma and I was quite bothered about venturing onto that stage of therapy.

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Six months in and I realised I knew more about myself than ever, I realised I had low self esteem, a lot of negativity and lots of issues with my own self confidence and self belief. In fact I realised that because of my childhood I had so much learning and developing to do and I began to see that there were many things I had never done. When paddling was suggested I thought it was daft and I can so recall how it felt as we spoke about it, but I began to consider it and thought maybe just maybe I can do this. That’s why exactly a year ago I ventured to the beach and splashed around like a child, self talk however weird it felt was helping me establish links with my alters and so one of them helped me on that day.

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Building sand castles soon followed, painting and art became more regular, cartoons became a regular daily feature of my life and we even managed to have a barbecue picnic. I realised fun was a great way to get in touch with the alters; the other parts of me and I learnt giving them time was helpful to all of me. But with the fun times came the grief, that grief of knowing what I had missed and of starting to accept the trauma and the emotions that my alters carry.
We then began to do more stabilisation, so more progress with internal dialogue and understanding the alters better. I started to challenge myself when I was critical of myself and in sessions were before my psychologist would counter my negativity, now I was doing it myself. I think there was a period were I was dreading discussing trauma, dreading if I couldn’t cope and feeling afraid of it. But I guess my psychologist realised that and I was helped to feel assured and less bothered by it. In fact letting my tears flow in the sessions was hard back then, I have always find it hard to express my feelings. It has over time though got easier and now there are times I feel like a tearful wreck.
In the past six months I have continued to learn things about myself and I have continued to grow and develop, when I felt bothered by a session I was slightly surprised I felt comfortable to actually say – but I did. It was more than ok though, my psychologist was truly helpful at reassuring me. I realise that were as before I might have reacted very differently to such situations I am now able to think more rationally about things as I’m less impulsive, well except when it comes to booking treats which I do far more often – that’s because I now believe I’m worth it.
My ability to interact with other medical professionals has improved as I no longer see myself as insecure and lesser somehow, I feel I have a right to be an equal and to be treated as such. I can sit through a CPA without storming out in frustration and my adolescent part is now able to respond in a far better way. I am losing less time which is amazing and I’m learning so much more about myself and my skills and abilities.

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Half way through and I’m totally amazed by how different I am, in fact others now see that difference too and practically I need less care. I am able to understand myself far more, understand the complexities of D.I.D and the things I need to do to make life less of a challenge. This week I even realised that I have skills and abilities I never realised were there, I cooked Sunday lunch last weekend for my family and yet a few months ago I couldn’t poach an egg without dissociating and losing time. That marks progress in a practical way, but there has also been progress on another level too in that I can cope far more with things that life throws at me, I cope better with flashbacks, thoughts of self harming, attacks of negativity and self doubt and I know I can cope better with the trauma too.

I realise that I don’t need to recall or process all the trauma, just enough and I can work with and accept these memories are mine- they are just carried by the alters. I also see that progress is possible in fact it’s evident already. I can see that life is moving forward, there is less chaos, I am growing as a person and that is far more than I ever imagined would be possible.
I still have much work to do and yes there are times when it’s hard and that it feels way too much, there are times when I feel I can’t cope but somehow I do. Most of all I now realise having D.I.D whilst it is a challenge each day is manageable, it is possible to live with this condition and the impact of my abuse – to have a life – now I never thought that I would be saying that, especially at the half way point.

 

copyright DID Disptaches 2015

How Safe Are Your Medical Records?

This week I have found myself being challenged not to explode, not to get angry or annoyed when deep down I feel violated and betrayed. Over the past few months I have been trying to access old medical records relating to my time in various mental health units, some mainly NHS operated ones and my old CCG have been very helpful others sadly not so. The private sector operated Partnerships in Care have to put it bluntly been unhelpful, and they haven’t forwarded all the information I requested within the time period set by the data protection.

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Yet their letter this last week threw me into chaos and in a bit of a spin, as I wasn’t expecting them to tell me they couldn’t find my notes. But that’s exactly what these people are now saying, they appear to be unable to locate the notes for a 16month admission including daily nursing records, clinical team meeting notes and most important of all my therapy notes.

The half hearted apology they have sent me doesn’t even begin to do justice to the harm they have caused, in fact I don’t think anything will ever repair the damage fully. I feel violated I feel hurt and why, well in the 16 months I was under their care I divulged some of the most sensitive data to my then therapist and other staff. In therapy I was forced to be explicit, forced to dig into the finer details of my abuse even when I didn’t want to.
My then therapist was trained to focus on making me feel vulnerable and dependent upon her, the three sessions a week were heavy going and hard work. Due to all the internal physical security of locks and swipe cards that epitomise a forensic unit, once I was at a session I had to stay the course. There were many times I sat in silence refusing to divulge details of the abuse or of my feelings, I didn’t trust her but in the end I talked often in frustration and fear. I would find myself having an outburst demanding to go back to the ward, demanding she stop playing the control game she seemed to enjoy. Often in these moments of sheer frustration there were tears and that’s when broken and distressed my abuse history began to pour out. I gave explicit details and I even named my abusers, I talked about them and their actions in as much detail as I did when I gave evidence to the police.
So in our therapy session the discussions; which were always awkward, were detailed and graphic and I hated it, I hated myself and I hated the people who hurt me. But looking back over the years I have felt able to take comfort from the fact those sessions were confidential, well at least in part as I know often what I said was shared with my then clinical team. Yet I felt reassured thinking the hospital had a duty to keep my sensitive information safe, how wrong could I be.

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It has taken the company over four months to write to me and admit they can’t locate my notes, now I could understand his if it was one small file, a few pieces of paper but it’s not! It’s case notes for a 16 month period, that’s roughly 485 days of nursing entries, it’s approximately 150 therapy sessions, 34 clinical team meeting reports and 3 CPA’s, 2 renewals of sections and 2 mental health act tribunal cases and all the necessary reports that they entail. So I imagine it’s more than one little folder of medical notes, after all a 6 month admission without therapy or section paperwork led to 2 folders of case notes.
So I estimate Partnerships in Care have lost about 5 lever arch folders, containing my medical notes in which are some of my most intimate data. Yet all they could send me was a solitary letter saying ‘I apologise we can’t locate your notes’. When I spoke to their registered manager she knew very little in fact she couldn’t even tell me when they last had my notes, where they were or where they are now likely to be. I mean it could be London, Leicester or Leeds perhaps or as I now fear in some public site somewhere accessible to all or possibly dumped in some country lane.
The fact is sorry just doesn’t cut it as I know this is a flagrant breach of data protection and if this were the NHS or the police, people would be jumping through hoops to try and locate my notes. They’d certainly be aware of the data protection act legislation and they’d realise this was a serious issue.

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Now unfortunately for Partnerships in Care I’m not going away quietly I had already contacted the information commissioners office and they do now know my data has been misplaced. They also know it’s contains important data relating not just to myself but other third party individuals, namely my abusers, my family even my children. They are aware my therapy notes are in my opinion as important as my police video interviews, in that they contain the same level of sensitive personal information. I hope they are able to swiftly take action to ensure this private company improves its data management procedures.
I hope too that Partnerships in Care will respond to the letter they are to get next week from myself, copies of which are being sent to the various governmental departments; who pay this company vast sums of money to provide forensic and secure services. These include the local CCG and secure services sector who sent me to their establishments and yet failed to ensure they had adequate data storage processes in place.
My main questions to the company right now is what are they going to do to put this right for me, after all I’m the one whose records it appears you’ve recklessly disregarded and inappropriately handled. I’m the one who feels violated, who has worried over what ifs, like what if my notes are picked up by a random stranger. I’m the one who has felt terribly distressed by the loss of these records, after all I thought my therapy notes, my sensitive data was safe, sadly Partnerships in Care you’ve proved me wrong. They weren’t safe at all from the minute they were written, your companies sloppy data handling processes meant they were lost from the outset.

Copyright DID Dispatches 2015

Update on Funding and transferring CMHT

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Funding as been an issue for some months now, well mainly the debate over which CCG is going to pay for my psychology sessions. Alongside this has been an underlying issue of a potential transfer of care from one NHS trust to another and of course as the patient I had little say in what was happening. At times I have felt frustrated and annoyed as professionals have made decisions which have an impact upon my life, it’s often felt as if those decisions could have been made swifter, easier and well to be blunt in a far better way. They have procrastinated over me and the financial implications when all I have wanted is a smooth transition from one CCG to the other.

Over a year ago I was told that the wrong CCG were paying for therapy and yet the talks between the two bodies didn’t even start. One claimed to send letters to the other and the other claimed not to have received them, in the middle of all of this was me. It all seemed to come to a head when a few months ago funding for therapy was suddenly stopped by the original CCG without warning.

Now I’m sure it seemed like a good idea to Shropshire CCG, a saving they could instantly make except it had huge implications for me. They said that as they had no legal responsibility to pay why should they and pointed me in the direction of the new CCG, who were now legally required to provide my care. That’s the impact I guess of Government changes to legislation. So I spent time worrying as therapy hung in the balance, numerous telephone calls and emails followed and eventually thankfully Shropshire CCG reinstated funding on an interim basis until they could negotiate with the new CCG . The new CCG responded well in the crisis and I was told by them last week that finally a transfer had been agreed between the two CCGs, so therapy is safe for now and I can breath a sigh of relief.

At the same time there has been ongoing discussions over the transfer of care from one NHS trust to another, I agree I need to access services locally and not from an NHS hospital or CMHT in another county. But at times in the past few weeks I have felt like a commodity, a commodity that is passed from pillar to post and back again. Ive been reminded so often of how much I cost the NHS and how much people see me as an expense. It doesn’t help ones self esteem or feelings of self worth to be reminded of the feelings I once felt as a child, feelings of being a commodity to my main abuser.

Whilst the transfer to a new CCG has appeared seamless I’m unsure if the contract issues between my Therapist and the new CCG have been resolved, I can only hope that is the case. However the transfer to a new CMHT and NHS trust seems less organised sadly and I feel lost in a mire of bureaucratic red tape and confusion. Most of the confusion stems from the fact I seemed to be the last to know about the transfer and that does seem rather wrong.

I haven’t met my new CMHT or the newly allocated CPN yet, that is scheduled for late June, but apparently if I am in a crisis or need help now I have to turn to them. Well that’s what my old CMHT has said on more than one occasion, except for a while I didn’t even have a contact number for these people.

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So yes I feel a bit like I am piggy in the middle between these two CMHT’s as the transfer clearly hasn’t gone so smoothly. I don’t blame my new CMHT at all they haven’t as yet met me, that will happen at the CPA arranged by my old CMHT, where I assume the formal transfer will happen. But my old CMHT seem keen to rid themselves of me and my costs ahead of that date which really makes me feel great.

When my old Care Coordinator visited last week, she told me that as I now had a new CPN from the new team when I need help I am expected to contact the new team. As I didn’t have any contact information for this team I asked how I was meant to do this? she seemed perplexed she had assumed I knew the contact information. So days later following my challenge that not having these numbers left me high and dry, she emailed saying oh you can use the old CMHT until it’s sorted. A few days later numbers for the new team were duly sent in a two line email that does just contain the numbers, so now I’m left wondering does that mean I use these now or do I use the old team?

You see I think the transfer has officially happened except the new team hasn’t even met me and I don’t know if they have a copy of my care plan or the latest reports from the psychologist. My family don’t even know I have been allocated a new CPN and I’m not sure if that person will have my contact details or my families, so it feels less than ideal.

It would be so easy to spiral into confusion, distress and a heightened sense of anxiety over all of this, it would certainly be easy to stress over feeling like a commodity. I have however been able to talk through these feelings in my therapy session and it has lessened my fears thankfully. I don’t know we’re I would be if I hadn’t been able to discuss these concerns so I’m grateful my psychologist was able to help.

Now I sit waiting for my CPA and am hoping things work out okay with the new team, I am still slightly anxious as each team I have been under differs in their approach. I just hope I’m not left feeling confused for too much longer and I hope they understand Dissociative Identity Disorder. Most of all I guess I hope they treat me as an equal and someone who has a say in their care, after all I have felt like a commodity and an object to be ‘done too’ for far too long.

 

Copyright DID Dispatches 2015

Funding Update

 

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An update on funding, well I have spent so much time chasing Clinical Commissioning Groups regards my therapy funding this week I think my phone bill will have quadrupled. However some slight good news came through at the end of this week which at least means my psychology session this next week will not be my last.

Despite telling me the decision to cancel my funding was concrete and non reversible, it seems that if you explain the guidance that CCG’s must operate under and point out you won’t just accept their decision, they take notice. I’m not sure if it was the numerous phone calls I made, my blog or the tweets that filled my time line on Monday and Tuesday of this week, but something made them think again.

I received a call from the team responsible for the funding from Shropshire CCG advising me that they had given some thought to the situation. They spelt out that the law says they do not have to pay for my treatment any more, but that Cheshire CCG now needs to and then what I was told stunned me. The lady said ‘However’ and then followed a pause that felt like it lasted forever as I waited with baited breath, the lady continued ‘we do feel it is important that there isn’t a gap in your treatment’. She went onto explain that whilst they negotiate with Cheshire, Shropshire will continue to fund treatment in the interim, to enable continuity of care. To be honest I didn’t believe her at first, after all I had endured so many closed doors just the day before when they showed no care or concern.

I’m not normally brave enough to ask for things in writing, but before I realised the words came tumbling out and she agreed to email me. Unsurprisingly I sat nervously as I waited, was this true had they had a change of heart, and then an email came confirming that for the interim whilst the two CCGs talk I’m not playing piggy in the middle. I asked Shropshire if they’d started dialogue with Cheshire and they said No, which I found a bit odd after all surely they need too, so in the spirit of helping things along I shared the telephone numbers of the opposite CCG with each of them. I’m hoping dialogue happens now as it most probably should have many months ago.

The call gave me a moment when I felt a wave of relief rush over me, immediately followed by worries over various ‘what ifs’ that crossed my mind. What if Cheshire say No, will treatment stop, what if Shropshire change their minds again, what if it all takes too long and funding isn’t sorted in time. Interim means just interim, short term, is funding within the NHS ever a quick process, I’ve never known it to be.

I have to confess I sent the email onto various people, to ensure my family and my therapist all knew that this decision had been made. I spoke to my current CMHT who were still very perplexed and felt truly in the dark about the entire matter, but I think relieved it was for now temporarily sorted. Then I just sat on my own and reflected upon the past few days and the future challenges we face. I cried part in relief and part in fear, such was the weight of emotional turmoil I have felt under this week.

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It’s clear I have really found this stressful and it’s an ongoing issue which continues to cause me anxiety, I’m aware that these funding changes also reflect other changes that I will now encounter. My CMHT is very likely to change and the hospital trust that will deal with me will change too, I don’t mind this as currently I don’t get seen in my locality and that I feel is something that should happen. I’m more prepared for these changes but I am still anxious about them, will the new team know enough about D.I.D?, will they treat me as a partner in my care not someone to talk down to, or someone they can do things too? I find I need to feel an equal partner in my care, my treatment otherwise I feel out of control and that reminds me of my past, my trauma. In my past I was controlled and dominated by my abusers, so if professionals exert control over me it has a negative impact.

For now I’m just hoping that when the changes happen we get off on the right foot, that if we don’t it can be rectified without too much grief. I guess I’m hoping it’s done swiftly and that all this uncertainty clouding my head over changes in services and funding is resolved. I have a great deal of recovering to get on with and so I’d like all these distractions to be resolved, so 100% of my energy is directed at moving my life forwards.

I’d like to settle things down a bit, as internally the past week has been chaotic, parts of me are fearful, were hugely impacted by the thought therapy was ending just as it had begun really. Parts of me really struggled this past week, parts I don’t know too well, are building trust with my psychologist even thought they haven’t to my knowledge communicated with him yet. They felt aggrieved, bereft even, at the thought someone they were just beginning to feel safe with wasn’t going to be there to help me deal with their memories and emotions. In fact he wasn’t going to be there to help them.

If I could say anything to my current CCG it’s that I wish they realised the impact of their decisions, how much torment, anguish and hurt it caused and I want them to know I’m truly grateful they’ve given us a reprieve. To the potentially new CCG I’d like them to see me as a person, to understand how much difference my Psychology is having upon my life. I hope and pray they make the right decision, that they honour the funding contract and give me the rest of the time I was assured of 14 months ago to undertake treatment. To my new Mental Health NHS trust, I’d like to say please see me as human being just like you, please treat me with respect and understand me, all of me.

As I write this I know nothing is certain, nothing is guaranteed and my future, my life and well being are no longer in my control fully, but in the hands of bureaucrats and medical professionals who don’t know me at all. It’s a scary time, but at least there is a sliver of hope that therapy will continue for a few more sessions at least. I guess over the next few weeks I’m going to have to learn to be patient and try my hardest not to worry more than necessary.

I will keep you posted on this continuing saga.

 

Copyright DID Dispatches 2015