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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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