Breaking free from medication

As many of you who read my blog regularly will know I have been engaged in therapy now for just over 18months and if I’m honest my life is being transformed as a result. There have been many milestones along the way, from my adventures at the seaside to those in the kitchen and it’s certainly been an experience. This week I celebrated another milestone though that for me personally means so much, I have finally stopped my anti-depressant medication.

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Now this may not seem like a huge achievement to many people but believe me when I say that it is, after all I have been taking these pills for such a long time. I never thought I’d get to this point and it’s not been without its challenges after all my psychiatrist wasn’t on board with the changes. But there is nothing worse than a determined woman, a woman on a mission and I guess that was me.
Back in the 1970’s I was prescribed my first set of anti depressants I was a little short of my tenth birthday at the time I didn’t know what the pills were for, I just knew I had to take them. I knew they numbed my pain I guess and even if they didn’t I was made to take them by my mother anyway, my teachers were so concerned at the sedation they caused they wrote to my doctor explaining their concerns and fears, but little was changed. Sedated and numbed from life I entered my teens and twenties in a daze a drug infused daze not of my own making.

I stayed on medication for the majority of the next decade and by then they became my crutch. Joined by Benzodiazepines this cocktail of pills was my lifeline and right through my twenties and thirties these pills remained a present force in my life. Yes they’d be stopped and started by the doctors depending upon how my life was, but I spent more time on them than off and rarely had any time without either of them.

 

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I have lost track of the various varieties of pills I have been prescribed but recall Prozac featured highly in my thirties, there was propranolol and Sertraline, whilst Valium and Diazepam well they were my benzo friends. By the time I reached hospital in the early 2000’s I was stuck on anti depressants and then the medical profession placed me on a list of other medication. It became a regular cycle of tablets, the good old medical model of care and each time my medication was reviewed it would be added to rather than re-evaluated fully. Suddenly in 2007 it was decided that the new type of anti depressants didn’t suit me and so I was forced back onto old style drugs like lofepramine which I’ve taken for the past 8 years. I can’t recall a time I didn’t take some form of prescribed medication and that, well that became scary.
In hospital the drugs lists just got longer and longer as more and more drugs were added to the list, seroquel was stuck in there, despite me not having any symptoms that would warrant such a drug. It came to a head about three years ago when I realised I couldn’t think or feel in any way, I slept more than I was awake as a result of the cocktail of legally prescribed medication I was made to take. It was a feeling I remembered from my childhood and those early days of being medicated, I told my then GP I needed to try and sort out the sedation it was impacting upon my life and thankfully she listened. Slowly we reduced and then stopped the Seroquel but it did take many many months and when I suggested further reductions she said not unless your team approved, they didn’t.

 

So for the past couple of years I have complied with this guidance despite believing the drugs made absolutely no difference to my well being at all. I did manage to persuade the team to allow me to reduce the diazepam down from over the legal limit to an average amount, yet they didn’t want to go any further than a partial reduction. But that changed a few months ago when sick of the side effects of the lofepramine I spoke to my current GP, who was willing to help without seeking the teams input first, so we began a slow reduction of both the lofepramine and the diazepam.

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Each reduction had to run at least a month before we reduce further and every reduction was tiny in order to avoid massive withdrawals. Previously I encountered horrific withdrawals when refusing medication in hospital, my refusals back then were more about me trying to gain some control in the chaos of my life at that time. Of course serious withdrawals just led to forced medication and even more control, being exerted over me. This time around this was a serious decision made with a great deal of thought and self belief and to ensure my safety I read all the literature I could find on the impact of withdrawals and became quite hyper vigilant at looking for signs.

Twice we had to stall the reductions and let my body catch up with coping with suddenly not having as much of these drugs inside us. I have been quite persistent at getting further reductions and my GP and I have often laughed at the irony of a patient who is actually not asking for pills but wanting to stop them, it’s apparently rare. My diazepam reduction is still ongoing we have three more weeks to go before I hope we can finally say goodbye to the drug I’ve taken for the majority of my life.

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But this week heralded that moment when I stopped the last of my lofepramine, I’m keen to ensure that there will be no more anti depressant tablets in my medication cabinet. My poor team didn’t know a thing so imagine my joy at sitting in my CPA and announcing to the old team worker and my newly appointed care coordinator from the new team that I’ve reduced and come off this medication. The look on their faces was priceless and I’m glad I did this reduction the way I did, in my control and without their support.

 
You see I knew these meds were not helping me, I knew I wasn’t depressed, I knew my anxiety levels were significantly lower than its ever been. In fact I know that I feel so so much better as a result of stopping this medication, I know I’ve been proved right I didn’t need these drugs, they didn’t help me.

 
What has been the impact of all of these medication reductions, well for the first time in my life I am feeling real feelings, my feelings. I can cry tears that I know are mine, not falsely suppressed or brought on by a drug. I’m actually waking earlier than before and I’m coping really well with any changes in anxiety levels, I’m utilising alternative techniques to cope with life. Mindfulness is really helping me as is being able to talk about things with my psychologist, understanding why I cry and why I have low days is helping me to grow and develop.
I no longer sleep in the daytime and I’m managing to pace my life to make it safe and manageable, I felt able on Monday to tell the medical professionals that I know my body, my moods my emotions and if I need help I’ll ask, until then I don’t want them to force medication onto me. For the first time in my life I feel empowered and I feel alive.

 

Forty years of mental health sedation is quite enough and now I’d like to move forwards free from all the impact of chemical stimulants and suppressants, I want to fly I want to soar high and live the life I’ve never been able to do. This is a turning point and yes today I’m wearing a big broad smile on my face.

 

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Disclaimer : Please be advised never stop taking any medication without first seeking medical advise. Any prescribed medication should be taken in accordance with prescribing guidelines.
Copyright DID Dispatches 2015

Care Plan Meeting – treat me as an equal

In recent days I have begun planning for my CPA early next week and I started to think about the things I need to cover in the meeting. After all this meeting will involve my new care coordinator from the new team my care is transferring to, I haven’t met them yet. It will also involve my existing social worker and my psychologist as well as my daughter, who goes to represent the family and support me.
I know that in the past my interactions with health care professionals haven’t always set off on the right footing, I usually find it hard to trust new people. I certainly have difficulty when professionals treat me like some second class citizen and not the equal that I am. My last experience of the new team dates back some 8years; it wasn’t so great and so I do have some reservations.

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I so want to explain to these people that I am not like many of the people they will have worked with, I have a condition they may never have heard of for starters. I am at times able and capable to do most things and then there are times when I things are too overwhelming and hard, times when I need support and help and times when I need them to step back and let me get on with it. Of course those times fluctuate from one day to another, in fact from one hour to another, depending upon which part of me is up front and driving this body we share.
I want them to know how I find each day, what its really like to be me and yet I’m not sure how I tell them that. The fact is I’m not sure my current team get how complicated and complex life can be for me. I’m certain they don’t understand the juggling I have to go through each day just to stay on an even keel, so how can I really expect my new team too. Yet I’m desperate that they do get me and they get the real me, why, well if they misconstrue me then they will judge me wrongly. They will like many before label me, stigmatise me and make assumptions about me which aren’t true and yes that does bothers me.

 

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I know I need to say things at the meeting about how I’m doing, what’s going on in my life right now and yes I can tell them about therapy and what’s happening. Yet I feel drawn to tell them about the things I’m really struggling with, because I need them to know. Yes I have made huge progress in the past 18 months and I’m really glad that I have, but there is still so much I need to do. For starters I want to be able to understand why I’m crying when I cry and yet there are many times I don’t. I want to be able to stop worrying about being judged but it feels like a mission impossible currently for me.
I want so much to be able to sleep in Bertie bedroom, that’s the name I’ve given the room in order to make it feel less scary, yet right now I’m able to just manage sitting in there for short bursts of time and then I need to leave. I visit the room a couple of times a day to get dressed and undressed but that’s all really, I can’t face sleeping in there and I can’t say when I will. It is as I’m often reminded a work in progress and it’s been months of hard work and effort just to get this far, that’s the joy of fearing a room because of linked memories. My bedroom of course is safe; I know that, but bedrooms and beds weren’t always so safe and that’s the issue. I have to overcome a fear that is ingrained in me from when I was young and sadly it still affects my life.
I want to be able to sleep in a real bed and not face struggles doing that, and yet currently I can’t. In fact I’ve slept on a sofa for 9 months now and that’s not so easy to admit to a random stranger; who I want so desperate to see me as an equal. In fact admitting or discussing most of this to someone who can impact my life in either a positive or negative way isn’t easy at all. So my dilemma is do I tell them at the CPA what’s concerning me or do I sit and pretend everything is perfect just because I have a new team.
How do I really trust these professionals who have the power after all to detain me against my will, give me treatment I don’t want and who can forcible medicate me or lock me in institutions all under the guise of healthcare. The power imbalance that exists between me and the professionals is a bit like having a pink elephant in a room, we all know it’s there but no one talks about it.

 

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That power imbalance though is concerning to me, I don’t like feeling out of control and the fact the new care coordinator and her team can take control away from me is frightening. So as I plan ahead for the meeting that in truth can go one way or another, that could be either a huge success or a terrible failure I need to find ways to stay focused. I need to remember these people are not the enemy, they are professionals whose task is to help me recover and deal with my mental health. In truth they are as at much risk of being sectioned as I am, that power hangs over everyone of us no matter who we are, Doctors, nurses, service users we are all able to be sectioned if we are deemed unwell enough.
This meeting maybe a scary prospect but I realise it also allows me a chance to educate people about Dissociative Identity Disorder and about me. It offers a chance to show them that actually I am working hard, it offers a chance to demonstrate my desire to recover and live an effective life with DID. I know parts of me are frightened by the upcoming meeting, trust is a big issue for us and so getting to know new people is hard. But my job now is to stay calm, reassure my alters and focus on showing these people who I really am and how I expect to be treated as an equal partner in my care.

Copyright DID Dispatches 2015

Crisis services Рmy experience 

I read about out of hours services today and it led to me to thinking about my experience with crisis services in the past. The first time I encountered a crisis team or out of hours service my experience wasn’t great they seemed to totally misconstrue me and failed to help or support in any way. I can recall one time when they visited me at home and having decided that I was safe leaving me there in a crisis and in chaos. I was suicidal and desperate and so clearly losing time and switching, but they didn’t see that they just me as inadequate, dysfunctional and a nuisance.

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They left me alone and still suicidal and so intent on dying that in desperation I tried to harm and then I dissociated, during which time I took off only to surface a few hours later some 60 plus miles from my home. I was picked up by the police for my own safety after they saw the distress that I was in and I was taken to a nearby hospital, they assessed me and admitted me to hospital.

Crisis at home had failed me, sadly it is often what happens, for me at least.
There was the occasion when I couldn’t live at home and had no where to go, I had been in hospital and discharged just a few days earlier but I had no place to stay. I had self harmed and the police had taken me for an assessment at the hospital, I sat waiting until the crisis team arrived and then they didn’t even talk to me except to give me a list of hostels. I hadn’t gone to hospital because I wanted a place to stay, I wanted to die, I had gone there by force and against my will and yet I was treated like I was a nuisance.

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Then on one occasion I was at home and struggling, crisis care was put in place and so for a couple of days they visited me. I saw a different person on each day, I never saw the same person twice and after a couple of visits I was put onto telephone calls only. The calls would be brief, wanting to know how I felt and then not really being able to offer any guidance or support really when I said how bad things were. By day four I was discharged from the crisis team to my regular mental health team, I wasn’t any better yet the crisis team support was only meant to be brief. I guess it didn’t matter that it didn’t work, or that discharge to me seemed too soon, too swift. Two days later I was seen by my community team and they admitted to hospital, I spent six months in hospital on that occasion, so crisis clearly couldn’t help prevent my downward spiral.

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The crisis team in recent times has just been telephone support, but if I’m honest I avoid calling them unless it’s absolutely dire. If Samaritans are not able to help and I’ve tried everyone else I can think of, then and only then will I call crisis, it is a last ditch attempt. The last two occasions have been pretty much the same really, I call, I say I’m struggling and they go through a list of techniques to try. ‘Take a warm bath, have a hot milky drink, try a nice walk or have you watched TV, tried to distract yourself?’ these are their usual lines.
They never assume I might have tried these things before, that I might have already thought of them myself. It never occurs to them that I don’t actually ring them when a crisis starts, or that they are usually the last person I try. It’s as if the staff manning these services are reading off a predetermined script and are unable to offer any person centred approach of any kind.

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The last time I called I was desperately trying not to self harm, struggling with grief and the difficulties of accepting my trauma. I needed some help to try and keep me safe, I didn’t want wrapping up in cotton wool I just needed some guidance to help me, help myself. Some advice to point me in the right direction to prevent that slide back into harming. I was desperate not to self harm, desperately busting a gut as I fought to resist the urges growing ever stronger. I had already tried all their suggestions before I even called them. In the end the only advice was have another drink, try some art maybe and call back if your struggling still.

About an hour later I did call back, this time I got a different person who initially went through all the same familiar suggestions. Then I heard another phone ringing and the nurse on the end of the line basically told me she was hanging up on me as there was another call and she couldn’t help me. In the end I stayed safe but only thanks to the support of those on social media and then later my family. The crisis team didn’t even inform my local community mental health team that I’d contacted them and was struggling, how is that joined up care.

The crisis service were and I believe are unable to offer any support or guidance that is of use to me, after all they don’t even know my diagnosis.

In the past decade my encounters with the crisis team of two separate hospital trusts have shown me that their understanding of dissociative disorders is limited. Their ability to assist and offer support is limited, in fact for me they are not there in a crisis because they can’t comprehend me or my diagnosis and without that they appear to be unable to help when I need them most.

In the future when I call, if I call, I will explain what I need which is usually someone to help me mentalize things, someone to just listen, to know my pain. I don’t need pointers like a bath or a drink I just need five minutes of their time and for them to hear me. From now on I aim to take control of my interactions with Crisis services and hopefully that will educate them as we go. Maybe this way they can help me when I need it most, only time will tell.

Copyright DID Dispatches 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