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

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Looking Back Life was worth fighting for

My first night in a Mental Health Hospital

The other night as I was settling down for the night I realised that day held a special significance, though not neccessarily in a good way. This day will always remain with me after all the first time I encountered a Mental Helath in-patient unit was a culture shock to my system.

I took to social media pouring out my thoughts as I reflected upon that day, upon my past and it seems apt to share those tweets now in their entirety.



  

 
I realise that 11 years ago I felt life was not worth carrying on with, but looking back I can see that what I needed was the right help, the right support. I guess I had got to a point were I no longer believed that help or support was readily available, my family deserved better than the burden that I really felt I was.

It took a while to get the right diagnosis and the impact of time in psychiatric services wasn’t easy for me or my family. But it came eventually and thankfully I was able to start taking those small tentative steps along the path towards recovery. I am still on that journey, yet I know now that I am stronger, more determined and more focused upon reaching that goal.

That first night wasn’t easy neither were many of the approximately 1400 other nights I spent as an in-patient.  But I can’t regret that night for without it I wouldn’t have recieved my diagnosis or the right help and I doubt I would have made it this far without either of those.
Copyright DID Dispatches 2015

It’s ok to feel angry

 

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This week I’ve learnt that it’s ok to be angry, to express anger in a positive way and that anger can have its uses, many people may already know these things, but for me it’s a bit of a breakthrough.  Whilst logically I know anger is ok, I tend to see myself as not an angry person and deep down I find anger quite a frightening emotion.

The breakthrough came as I talked in therapy, I realised I was upset and bothered about things and that yes I was angry, extremely angry at losing out on my past. Yet I tried really hard to just sideline the emotions as is my normal behaviour and so I belittled them as I tried to change the subject. But with a little help I was able to see that it’s ok to be angry, anger doesn’t have to be dangerous or bad in fact it can be a very healthy emotion to have.

Actually understanding how the anger I feel is helping to motivate me on my journey of recovery has been really helpful. It’s the first time I can accept anger might not be so scary after all, that if its expressed in the right way it can be a positive tool to help me. I still find this slightly weird and yet I can at least see that it may have a role to play and that it might not be so frightening an emotion.

I spoke to my Psychologist about how when I was angry before it always led to judgements and issues, and that as a child expressing any feelings was dangerous. In hospital staff would judge me based on my responses, so any sign of anger or even disagreement was seen in some way to be a big issue. I can recall so many incidents were my actions were misconstrued and I was labelled or judged in a totally unfair way.

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There was the time I challenged a nurse who had lost my medication tray from their massive metal cabinet, all I did was say it had to be there. This was construed as me challenging them, being aggressive and being uncooperative with staff. It was recorded that I shouted when I think the most I did was raise my voice a tiny amount and this was mainly because the nurse was shouting loudly at me. My records don’t show that the nurse failed to look for my medication, that they shouted at a patient or that they were rude.

Then there were times I declined my medication, now I know looking back it wasn’t the best decision I ever made, but then neither was filling me with so many pills that I couldn’t think. These times were construed as me being uncooperative and antagonistic, someone who failed to accept what was best for her. If I fought when I was restrained which I think any normal minded human being would, it was seen as aggressive behaviour. No wonder that I soon learnt that having opinions or showing signs of irritation, frustration or anger would just land me in more hot water.

Of course I wasn’t alone in being judged in this way and as I explained in my therapy session my hospital stays kind of made me hide my feelings even more. But now it’s different, now I can see that hiding away my feelings isn’t helpful, hiding away my anger is actually doing more harm than good. I’m not advocating people randomly go out and hit people or shout and scream, but anger when demonstrated in a sensible controlled way is actually beneficial.

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Telling someone I’m angry at them in a calm controlled way is ok, acknowledging I’m annoyed at something is fine too. Being able to request an apology, or ask for a time out, or for something to change these are all positive ways of expressing my anger. They can bring about positive change in a situation, as can channeling the anger that I hold from my past.

So from now on I’m going to try and allow my feelings to come through, no more blocking emotions for me, instead of slamming a door in frustration when someone annoys me I aim to tell people when I’m annoyed. My hope is that I can learn to no longer fear this emotion but instead utilise it to bring about change, change in others, in situations but most of all to motivate myself to change.

 

Copyright DID Dispatches 2015

 

Forensic Psychiatric Care

Plastic fantastic

Sitting in the back of my kitchen cupboard lurks a cup, one that I haven’t used for a number of years now but still I can’t throw it away. This cup symbolises so much for me, it’s made of melamine, a heavy type of plastic and it is practically unbreakable, it’s decorated with pretty flowers and it would happily form part of a good picnic hamper. Yet this cup has never been used on any picnic, instead it was used behind a multitude of locked doors.

This was the cup I used during my time in forensic psychiatric care, in the secure unit were for over a year I was confined. It was specifically chosen by my children as it adhered to the strict regulations about the type of non breakable cup I was allowed. The regulations about such items were very strict and if your cup didn’t conform you simply wouldn’t be allowed to keep it. On finding it the other day I thought of my time in that place and how dehumanising the whole experience was, you see it’s hard to suddenly be labelled as too unwell or perceived as too dangerous to use normal everyday objects like a china cup.

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The reality of course I now know was that I was sent there because I was depressed and self harming, but the scale and level of my harming was not in anyway as extreme as some of those I met in these places. Yes I cut myself on an almost daily basis in the hope of making the internal pain I was enduring somehow physical or more visible in some way. It was my way of protecting me, because at the time I truly believed that if I didn’t harm myself others would and this way I could control the harm done to me. I did bang my head on occasions purely out of frustration at the way in which no one seemed to understand the horror of flashbacks, of memories and of how I felt. But in all my time of harming I have never used a cup, or a knife, or a fork or any number of other items that suddenly I wasn’t allowed in this place to self injure. Nor had I ever harmed another human being, so I wasn’t dangerous in any way, yet in secure forensic services everyone is labelled and treated the same.

I look at that plastic cup and I remember how the so called professionals treated us, how they made me feel so worthless, so pathetic and so very wrong. I left an open unlocked ward and in the time it took to drive 200 miles I was viewed as a whole different person. No longer a free citizen who just happened to be ill, but a forensic detainee who could be barked orders at, denied her possessions and forced to do things whether I wanted to or not.

The forensic unit didn’t treat me as if I was ill, I never felt like a patient who was regarded an equal, no I suddenly felt like a third class citizen who they regarded as bad. In truth I feel they saw all of the women in there as criminals, yes I know many of the women I lived with in that place had criminal histories that had resulted in them being sent there, but not me. Yet these people couldn’t treat us all as individuals we were collectively dealt with in punitive ways.

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Like the cup made of unbreakable plastic, I can recall the lukewarm drinks we were served, and the mealtime chaos of cutlery counts and at times being made to eat meat and vegetables with a spoon. I was thinking back the other day to my first meal in this place and being lined up in a queue to collect my food, spaced out from the person in front with staff all around. When they handed a plastic plate, a spoon and a serving of meat, vegetables and potatoes, I was perplexed. Only that morning as I left my open ward I had sat with a china bowl and had open access to knives, forks and spoons and yet now I sat on a long bench table, surrounded by staff and other patients holding a spoon thinking how do I eat with this? I remember saying I needed a knife and fork, and being told that I wasn’t allowed such items and to shut up, sit still and eat. Yes the staff really were that blunt. My drinks in those early days came in polystyrene cups and I was told I wasn’t allowed a plastic cup until I had approval from the team.

The Team became a familiar part of my life, they ran my life for me after all they were in control, in charge and me well I was just a nobody. I soon learnt that if you challenged them over anything it didn’t get well received, but try as I might I couldn’t not challenge some of the more ridiculous rules and procedures this institution operated. They’d count the cutlery every single meal time first it was counted out then back in at the end, if they mis-counted then we would all be made to wait and wait and wait, while they hunted for the missing object which in truth there never was. Of course I never once saw anyone harm with cutlery, but pens that were freely available were used by many to self injure, as were a plethora of other objects we had access to. I learnt a million and one more ways to self harm, I learnt the weak spots in the system and I witnessed many awful incidents in there too.

It soon became clear that you could tell when certain women were more anxious and you could certainly sense who was going to harm before they did. Yet it surprised me over and over again to find the staff didn’t sense this increased anxiety and risk within a person, the team over focused on physical security and so missed clear opportunities to help women. Physical security included stupid rules about cutlery and certain other object and it also included an over reliance on locks. It focused on staff dominance and patient compliance to rigid rules that made no sense and yet the system failed.

A forensic unit has a higher level of self harm incidents and serious incidents endangering life than other types of psychiatric facility. It’s not just about the clientele they serve it’s about the complex nature of people who need help, and yet are failed by the system. It would have been so easy for me to have got sucked into the cycle of punitive rules, punishments and de-humanising that took place, it would have driven me to self harm even more if I had let it. I had to fight not to succumb to this place, to not end up like many who had spent years existing in these units. Who no longer felt human or had any worth, they felt better off harming and dead than existing in this horror in which they lived. Many didn’t have visitors or leave and they were rarely empowered, encouraged or given opportunities to believe they had a future.

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I was fortunate, I had a family outside, I had children who cared and friends who stayed in touch, most of all I had years of experience surviving similar controlling environments. My abusive childhood was all about control, punitive random punishments and dehumanisation, dissociating allowed me to survive that time. Dissociating again allowed me to survive this period of my life too and parts of me would ensure I never spiralled into being a continuous long stay forensic patient.
The truth is I can’t throw away that cup now because it will forever be a permanent reminder of the fact we survived the horror of our time in forensic care.

 

copyright DID Dispatches 2015

Hidden truths -revelations of betrayal

Yesterday I realised just how much some Mental Health professionals have judged me in the past and how because of my Dissociative Identity Disorder I am at times seen as complicated and complex. You would think I’d be more able to deal with these kind of situations, but when the envelope arrived yesterday morning containing a few documents from my medical records I found myself quickly getting annoyed.

I had requested some very basic information, I wanted to know how many contacts I had had with my local community mental health team over a given period of time, and how many nights I had spent in psychiatric inpatient services. Simple you would think in this age of modern technology for any NHS trust to gather this type of data and forward it to me the patient. Well I thought it would be simple I was wrong.

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Firstly whilst modern technology exists it is only as good as the data entered into the system, my local NHS trust doesn’t keep at hand a record of such things. Instead 40 days after my original request they sent me some documents which didn’t actually give me answers to most of the questions I had asked. For instance they have no accurate record of my admissions to hospital, well they didn’t send me the data. In fact some data was withheld because despite the various documents being about me, I’m not allowed access to them if there are compiled by a third party such as the private hospitals the NHS paid for me to be held in.

But what I did receive was eye opening, in this small bundle of papers were letters written about me from various medical professionals. They contained the reasons I was sent to secure services and the reason I was kept detained in a medium secure hospital longer than the psychiatrist based there felt I needed to be. I found out how people have over time judged me in ways you just wouldn’t believe and being judged well that makes me cross. I also realised how financial issues have impacted upon my care and how little my views and wishes were taken into account previously.

In one letter it states the reasoning behind my being sent from an open mental health ward to a forensic secure service. It states that I was transferred to the forensic unit because I was struggling with depression and self harm related to remembering and subsequently disclosing childhood abuse. The primary thrust of the secure placement was to ensure that I could engage in the necessary therapy whilst being in a safe environment that I couldn’t walk out of. Of course there was no evidence I wouldn’t engage in therapy, in fact quite the opposite.

To think that my move there was because I was depressed, self harming and in need of talking therapy infuriates me. If depression and self harm really lead to me being placed in what I can only describe as a hell hole, then it’s scandalous. Talking therapies are available in the community, I really didn’t need to be incarcerated amongst murderers and other criminals. But I guess it was easier for the local team to just move me on and not have to provide any support, that and the funding came from a different pot of money so their budget remained in tact.

In another letter they talk of my being kept in that hell hole for longer than needed, it transpired that my psychiatrist at the medium secure unit felt I didn’t need to be there he felt I should be moved to a secure rehab unit and yet my local team and others over ruled him, not because it was in my best interests but for budget reasons. The local team needed time to put in place a funding request as lower secure services were financed out of a different pot of money.

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To think I suffered that trauma, that loss of liberty over a simple budgeting matter is hard, we never knew before. I took what they told me at face value, I guess I expected them to serve my best interests and my family trusted them to look after me and to ensure my needs were met in a safe way. It does feel like a betrayal, a betrayal of trust.

The letters that I now have talk of me having issues, being a nuisance, being complex, having flawed behaviours, having considerable contact with services and being detained. They seem at times critical of the fact I understand my condition, have insight and awareness, perhaps it’s more difficult for the Mental Health professionals to accept that.

Of course besides the letters, I still need the information that I initially requested and so I will have to pursue that over the coming weeks. It’s clear attitudes at times towards me have been misguided, professionals clearly unable to understand or consider my view point or feelings. It’s clear too that finance or rather the lack of it have played and continue to play a significant role in how mental health services are delivered. I can’t help wondering how many more people suffering depression and self harm are being sent to inappropriate placements for talking therapy when it would be far cheaper to deliver this in the community.

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The letters and documents I have received will now be filed away, I’m not going to focus on the past too much or let them upset and distress me. I know yesterday when I did get distressed and annoyed it affected my alters; the other parts of me. I had to spend time calming myself down and I did walk away from the paperwork and do other things. In fact one of my alters intervened she told me to stop, to put the file out of sight and not get upset, she was worrying about me. For once in my life I listened to advise and the file did get put down, I realised this could overwhelm my weekend. But I know now I am far better and worth much more than others silly attitudes and stupid judgements. Yes it hurts to think they misjudged me, to think they don’t understand but I can choose how I respond.

If I’m honest I feel sad for those mental health staff who have no understanding of what it’s like from a patients perspective, who feel threatened by patients who understand their condition and who have no idea of the impact of secure units on people. Most of all I worry that talking therapy for trauma and D.I.D is at times seen by medical staff as just impossible, whether that be because of funding restraints, time limits or a simple lack of awareness.

Copyright DID Dispatches 2015

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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