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

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

Funding Update

 

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

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

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

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

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

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

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

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

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

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

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

I will keep you posted on this continuing saga.

 

Copyright DID Dispatches 2015

 

 

 

 

Funding Crisis 

Years ago I was an expensive patient, inpatient care in some rather costly forensic and secure units led to heavy bills for my then PCT, indeed when I came out of hospital my care costs were expensive too. I have always appreciated the funding provided by the NHS indeed I have until yesterday always respected the people at both the PCT and now Clinical Commissioning Group. But yesterday my views were shattered by a decision that was both ill conceived and lacking in any regard to patient care. My current CCG Shropshire stopped my funding without warning for my much needed talking therapy, they didn’t do this because my needs have changed they did because it’s financially beneficial to them.

Last year I wrote a blog, asking for advice relating to section 117 aftercare and who should pay, I had found myself in a situation where my care was being provided by one CCG when I actually live in the area of another. This decision was based on legislation in place when I first moved back to my home area after my long stays in out of area hospitals. At the time who paid depended upon the place where I was when I was detained under the Mental Health Act, and in my case it fell upon Shropshire. But when I relocated nearer my family and back to my home area in Cheshire I was made to still access services in Shropshire. So my mental health team and the like are based over the border from where I now live and until changes in the law Shropshire CCG were liable to fund my continuing health care needs.  But the Government changed the law and suddenly a new document appeared called ‘Who Pays’, it clearly showed my funding arrangements needed to change. Simple you would think, but sadly it’s a chaotic, bureaucratic red tape nightmare with me as piggy in the middle.

So after months of trying to ascertain what was happening, being reassured numerous times that my Psychology would continue without interruption I am now faced with fighting for survival as funding has been instantly stopped without warning by Shropshire CCG. They have failed to transfer me to the relevant Cheshire CCG, failed to ensure continuity of care and failed to inform anyone involved from my care coordinator to myself of their decision.

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Yesterday in therapy I discussed how I had had the guilt trip played on me relating to my social care funding; my PA support, which ironically is still to be funded by Shropshire local authority. The local authority had wanted a cut in the number of hours I currently have and they tried hard to try and get me to agree to a cut in service not based on need but a purely financial decision.  As I spoke of my concerns about the CCG and my fears for the future I was then informed that our sessions maybe coming to an end not because I’m better or ready to move on but simply because the CCG is no longer willing to honour a 3 year contract despite being just 14 months into it.

So today after much soul searching I called Shropshire CCG, who passed me from one person to another without no answer in sight. They even promised they’d call me back but then didn’t. I tried calling my CMHT who knew nothing about the decision of the CCG, indeed they told me I had funding agreed for 3 years of therapy. The poor lady I spoke to was to be blunt baffled by this madness and as concerned as I was at the nonsensical decision. As always happens when you need someone there off sick, or out of the office so my Care Coordinator wasn’t available today. Having resorted to taking extra medication to try and calm myself down I realised this funding nightmare was making me spiral downwards and I don’t deserve that.

In sheer desperation I called Shropshire CCG back who told me bluntly, I wasn’t the only person this was happening to, that the decision has come from on high and that they’d written to the receiving CCG back last year, but they couldn’t say that they had ever chased a lack of response.  In fact they clearly hadn’t or I wouldn’t be in this mess. I tried to explain the guidance, about mediation between CCGs and in the end said if it wasn’t resolved I’d have to legally challenge their misguided decision. Surprisingly they now are going to call me back and promise to keep me informed of what is happening, but they can’t guarantee that therapy won’t stop. I’m not holding out much hope given the way this particular CCG has behaved in recent days. You see the guidance issued to CCGs back in September 2013 clearly States :

7. The safety and well-being of patients is paramount. The underlying principle is that there should be no gaps in responsibility – no treatment should be refused or delayed due to uncertainty or ambiguity as to which CCG is responsible for funding an individual’s healthcare provision.

8. Since it is not possible to cover every eventuality within this guidance, the NHS is expected to act in the best interests of the patient at all times and work together in the spirit of partnership.

9. NHS England expects that all disputes will be resolved locally, ideally at CCG level, with reference to the guidance in this document and coming to pragmatic solutions where responsibility is not immediately obvious or where it may be shared. In cases that cannot be resolved at CCG level, Area Teams of NHS England should be consulted and should arbitrate where necessary.

Yet Shropshire CCG Appear to have ignored the guidance, no transfer date was agreed, my needs have not been paramount and treatment is being refused/terminated by them. Bonkers or what!

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I then called the Cheshire CCG who claimed not to have received any letter and they knew absolutely nothing about me or my case.  But they were at least helpful, supportive and understanding, they appreciated I was piggy in the middle and my care and well being we’re being overlooked by Shropshire. They even agreed to call various people to try and start finding out more about the case and were adamant it would be detrimental if my therapy was to stop. But funding is a complex matter, funding panels have to be convened, reports written and it all takes time. Given no one in my locality knows anything of my Mental Health I’m not seen by the local team, this is not straight forward. The lady I spoke to even gave me her name, that hadn’t happened in Shropshire they seem to not be bothered and were really uninterested. To be fair to the Cheshire CCG they are being left to pick up the pieces of another CCGs mishandling and mess, they didn’t know me till today but they have at least shown compassion and care, for which I am grateful.

So where does this all leave me, I’m currently facing an end to the one treatment in the past 12 years that has made any significant progress. I’m facing an end to trauma therapy, with no closure work and unresolved trauma still to be dealt with. I’d only started trauma work a few weeks ago, so this is a crucial stage in my treatment and now it could all be crashing down around me.  I’m left wondering if I will ever get treatment again, will I ever actually have a chance to recover from the past and I’m left worrying that I’m going to spiral back into that revolving door admissions cycle I endured just a few years ago.

Most of all I’m left knowing that this disruption is all so utterly needless, my therapy costs the NHS less in a year than any impatient admission did and my care needs have reduced by over 50% in the  last 14 months since I started the therapy. When I was at my worst and in forensic Psychiatric care my care costs for just two months would most likely have paid for all three years of my therapy. Yet no one bothered about paying to send me to a place that didn’t work. Now we have a treatment that’s cost efficient and effective and they stop funding. So the NHS is going to end up spending more on my care needs, crisis support and future hospital admissions as a result of this funding cut than they are saving right now.  It doesn’t take a rocket scientist to see how illogical this decision by Shropshire CCG is.

Right now I’m coping just and trying to remain focused on fighting for funding, it’s easy to fight when your fighting for survival. That’s exactly what I am doing right now I’m fighting to stay afloat, fighting for the treatment I know that works and fighting to not return to those dark days when all I wanted to do was die. I’ll keep you posted on what’s happening and if there’s any good legal minds out there who could help or assist right now, please get in touch, I need all the help I can get right now.

 

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