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

2 envelopes 8 years apart – from suicidal to survivor mum 

Trigger warning : please exercise self care. 

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This week I came upon an envelope, on the outside were handwritten instructions of desired funeral arrangements and the envelope was addressed to three young teenagers. Shaking I gripped hold of this envelope as thoughts raced through my mind. Was it wrong to read it, would it stir up memories and emotions I wouldn’t be able to deal with or was it best to leave this well alone. Yet as I sat transfixed my eyes focused on this emotional heartfelt letter I knew what I needed to do, it was time I read the words that I once had written to my own three dear children.

As I carefully unsealed the envelope I examined every word written on the outside, it hit me that these were my funeral plans, plans I had at one time felt so vital to record on paper. I hadn’t wanted my children to have to make those difficult choices so I told them simply what I would like. The letter was long, it started with an apology, and those familiar words of I love you, I am sure many people will never understand the thoughts that raced through my head when I had written this letter, but 8 years ago when I wrote it I didn’t feel like I could survive.

You see back then my trauma, my past were destroying me and I felt I could take no more, the turmoil and anguish I felt were basically consuming me. Each day was a torment, painful and soul destroying, it felt like I was being abused over and over again, as the flashbacks consumed every minute of every day. If not the actual flashback, the fallout from them filled every day and I couldn’t take anymore of this anguish. I can recall the feelings of desolation I had felt at that time, and then the decision which seemed like a rational, sensible one to me was made. I’d end my suffering, I’d end everyone’s suffering and instead of being the nuisance to my family; that I felt I was, I’d give them a fresh start. They wouldn’t have to worry about me anymore, they wouldn’t have to watch me being consumed by the past or see my torment; which was the result of my memories. Suicide I had felt gave me the best solution, best for me and most certainly best for my children.

That was my mind set the day I wrote lovingly to my children, fast forward 8 years and here I was sitting with this letter I had written them. I digested every line, each word and I sensed the anguish and the torment I had been in when I wrote to them. It seemed somehow to seep out from within the pages, it was palpable and so clearly evident that I was suffering. I recorded the distinguishing traits of each one of the children, the things that made me proud and their individual strengths. I told each one how much I loved them and why this was the best outcome for them. I apologised numerous times for all the pain I had caused them and how I just wanted to make things right for them and I  begged for their forgiveness. By the time I had finished reading it all, tears streamed down my face and my body was shaking as I sobbed and sobbed uncontrollably.

You see I know how close I had come, how close I was at that point to no longer being here with them. I had planned so much, it wouldn’t go wrong and yet somehow it did and somehow I’m still here looking back retrospectively at that dark time. No longer in that dark unforgiving place, that once overwhelmed me and made life seem impossible to live.

I couldn’t help think of all the things we had done as a family since that time, all the highs and the lows. This was written before my stay in forensic psychiatric care, before my being sectioned under the mental health act. But it was also before any of them had graduated, before I even began to study for my degree and before they had celebrated milestone birthdays. There is so much we have done since that time, so much I so nearly missed out on.

I have had the joy of watching these teenagers grow into amazing adults, seeing them all receive their degrees and feeling such motherly pride as they did. We have shared so many Christmases, birthdays and holidays together, things that I’m so glad I didn’t miss out on. I’ve enjoyed learning to have fun, to laugh at myself especially when I splash in the sea and I now gaze in awesome wonder at the beauty that I see in this world all around me. I appreciate it from a different viewpoint today, as I see things from the perspective of my little parts of me.

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But when I wrote that letter I didn’t see any light, I didn’t see any hope, just pain and I thought it was best for us all for me to not be here. Now looking back I see that whilst it hasn’t been an easy journey and I have a long way still to go, I’m aware that I’m stronger than I ever believed was possible. I’m now aware that you can with the right help overcome those dark days, learn to live with the pain of the past and carve a new way forward. I’m learning the skills I need to cope with my life, with the damage that was once done to me.

Looking back isn’t easy, but it was important to do, it reminded me of how far I’ve come and of how much I have achieved. It’s allowed me to reflect and be glad that I’m still here, that I can tomorrow open other envelopes this time address to me and not my children. These envelopes will contain cards to celebrate Mother’s Day and I have no doubt that I will cry with joy as my wonderful children’s card tell me how much they love me.

Their words mean so much to me, because they know how close I came to not being here, they know we so nearly didn’t have this day. They have been through this nightmare with me and we have had to rebuild our relationships after the prolonged periods of my hospitalisation. I’ve kept the letter I wrote it’s hidden away in a box, I think one day when my treatments over I will burn it, till then it’s there and it’s my reminder of a time that once was desolate but now has beams of hope shining through it.

If I could have written to myself back then, it would have said quite simply ‘hang in there, it’s not going to be easy but you will get through this, you will get the help you need one day. Most of all you have a future, you will laugh again and even when you cry that’s ok, because often they will be tears of joy and of motherly pride.

 

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