Update on Funding and transferring CMHT

image

Funding as been an issue for some months now, well mainly the debate over which CCG is going to pay for my psychology sessions. Alongside this has been an underlying issue of a potential transfer of care from one NHS trust to another and of course as the patient I had little say in what was happening. At times I have felt frustrated and annoyed as professionals have made decisions which have an impact upon my life, it’s often felt as if those decisions could have been made swifter, easier and well to be blunt in a far better way. They have procrastinated over me and the financial implications when all I have wanted is a smooth transition from one CCG to the other.

Over a year ago I was told that the wrong CCG were paying for therapy and yet the talks between the two bodies didn’t even start. One claimed to send letters to the other and the other claimed not to have received them, in the middle of all of this was me. It all seemed to come to a head when a few months ago funding for therapy was suddenly stopped by the original CCG without warning.

Now I’m sure it seemed like a good idea to Shropshire CCG, a saving they could instantly make except it had huge implications for me. They said that as they had no legal responsibility to pay why should they and pointed me in the direction of the new CCG, who were now legally required to provide my care. That’s the impact I guess of Government changes to legislation. So I spent time worrying as therapy hung in the balance, numerous telephone calls and emails followed and eventually thankfully Shropshire CCG reinstated funding on an interim basis until they could negotiate with the new CCG . The new CCG responded well in the crisis and I was told by them last week that finally a transfer had been agreed between the two CCGs, so therapy is safe for now and I can breath a sigh of relief.

At the same time there has been ongoing discussions over the transfer of care from one NHS trust to another, I agree I need to access services locally and not from an NHS hospital or CMHT in another county. But at times in the past few weeks I have felt like a commodity, a commodity that is passed from pillar to post and back again. Ive been reminded so often of how much I cost the NHS and how much people see me as an expense. It doesn’t help ones self esteem or feelings of self worth to be reminded of the feelings I once felt as a child, feelings of being a commodity to my main abuser.

Whilst the transfer to a new CCG has appeared seamless I’m unsure if the contract issues between my Therapist and the new CCG have been resolved, I can only hope that is the case. However the transfer to a new CMHT and NHS trust seems less organised sadly and I feel lost in a mire of bureaucratic red tape and confusion. Most of the confusion stems from the fact I seemed to be the last to know about the transfer and that does seem rather wrong.

I haven’t met my new CMHT or the newly allocated CPN yet, that is scheduled for late June, but apparently if I am in a crisis or need help now I have to turn to them. Well that’s what my old CMHT has said on more than one occasion, except for a while I didn’t even have a contact number for these people.

image

So yes I feel a bit like I am piggy in the middle between these two CMHT’s as the transfer clearly hasn’t gone so smoothly. I don’t blame my new CMHT at all they haven’t as yet met me, that will happen at the CPA arranged by my old CMHT, where I assume the formal transfer will happen. But my old CMHT seem keen to rid themselves of me and my costs ahead of that date which really makes me feel great.

When my old Care Coordinator visited last week, she told me that as I now had a new CPN from the new team when I need help I am expected to contact the new team. As I didn’t have any contact information for this team I asked how I was meant to do this? she seemed perplexed she had assumed I knew the contact information. So days later following my challenge that not having these numbers left me high and dry, she emailed saying oh you can use the old CMHT until it’s sorted. A few days later numbers for the new team were duly sent in a two line email that does just contain the numbers, so now I’m left wondering does that mean I use these now or do I use the old team?

You see I think the transfer has officially happened except the new team hasn’t even met me and I don’t know if they have a copy of my care plan or the latest reports from the psychologist. My family don’t even know I have been allocated a new CPN and I’m not sure if that person will have my contact details or my families, so it feels less than ideal.

It would be so easy to spiral into confusion, distress and a heightened sense of anxiety over all of this, it would certainly be easy to stress over feeling like a commodity. I have however been able to talk through these feelings in my therapy session and it has lessened my fears thankfully. I don’t know we’re I would be if I hadn’t been able to discuss these concerns so I’m grateful my psychologist was able to help.

Now I sit waiting for my CPA and am hoping things work out okay with the new team, I am still slightly anxious as each team I have been under differs in their approach. I just hope I’m not left feeling confused for too much longer and I hope they understand Dissociative Identity Disorder. Most of all I guess I hope they treat me as an equal and someone who has a say in their care, after all I have felt like a commodity and an object to be ‘done too’ for far too long.

 

Copyright DID Dispatches 2015

Advertisements

Is My Care Plan Written About A Stranger?

When your care plan doesn’t reflect you and your needs

image

There are times when I feel Mental Health professionals just do not understand Dissociative Identity Disorder and what it’s like to live with it. There are times when I feel that I am judged by my time in hospital and it appears assumptions rather than facts about me rule the day. Unfortunately the arrival of my much awaited care plan signalled it was one of those times. It’s clear from reading the document which outlines my care needs, the interventions put in place and potential signs of relapse, people still need educating about D.I.D.

I knew it was unlikely to be positive when the boxes which stated I and my carer or significant other had been involved in developing the plan were marked ‘ Yes’ . This is the first time I have seen a care plan in over a year and neither I nor my family have been consulted about it at all. More frustratingly I guess is the fact we have only received a copy because we have asked repeatedly if one still existed.

It seemed strange to see a note attached to the plan which my care coordinator had written saying ‘we can discuss any amendments on my next visit’, amendments I thought, I want to re write the whole darn thing! Yes it’s that bad really, which is sad given I’ve been with this particular team for over 8 years and they know about my diagnosis. It’s even more bewildering given that some though perhaps not my current care coordinator have been given specific training on Dissociative disorders.

I’m more conscious though of the glaring misconceptions that stare at out at me, the plan has a list of skills and support they expect my PA’s to provide none of which mention dealing with my alters; the many parts of me. The person who employs my PA’s hasn’t been consulted about these either so was rather taken aback when I showed them the care plan. My PA’s are now meant to be specialist mental health care providers apparently, of course they aren’t, because to have this would cost far more than the Local Authority will fund. But my PA’s do provide valuable help, support and assistance on a day to day basis and they help deal with and interact with the many parts of me. That’s a skill in itself and one that needs to be recognised…but it is not even mentioned in the plan.

My community mental health team seem to think I can just stop switching, on command! The plan states ‘carol to undertake independent activities where she is required to remain in an adult state’. I liked the word ‘required’ it seems so out of sync with what it is like living with D.I.D, after all I can try and manage my time, juggle the needs of the various parts of me but I can’t just switch off the switching. Yes I try at times to stay focused, it takes a great deal of effort, I know I still switch from one adult me to another and at times will suddenly descend into a child part. I’m working hard to work in cooperation, watch and observe as little parts of me take control of this body we share, but I have no ability to ‘remain’ in an adult state at command. It’s simply not yet a feasible option.

I’m quite good at covering it up and people who don’t know me well may not even notice the switches that take place, but that’s the same for most people I know with D.I.D. The majority of people I interact with don’t notice the internal struggles that go on constantly as I try and remain at least aware of what my parts are doing. But I’m still losing time, I’m still having periods each day when I wonder what the hell I have been doing. I have to balance my time and my days to try and give myself a fighting chance each day and yet they expect me to just on command remain adult. I wanted to laugh because they refer to the time I don’t have care and they assume I stay adult me in this time. This is more than half my week and yet they assume I can just be an adult! I think they might be surprised if they saw me at these times, because their assumptions are so far of reality it’s quite sad.

image

 

Take for instance the other day I had no PA’s I watched cartoons well my little me’s did, and then we had breakfast which was chocolate. (I observed but had no control). Then I lost time, apparently I snoozed and had a mid morning nap before even more cartoons. The rest of the day I switched from one part to another and back again, some were adult parts, some teens and some little parts. I think I failed if they expect me to ‘remain adult’ oh well I live with D.I.D., the professionals clearly don’t understand it.
The plan goes on to talk about how my daughter and I are meant to monitor and report back any risky behaviours and it says ‘ increase periods of stabilisation and reduce the risks of self harm or harm to others’ I have never harmed others, the only person I ever hurt was myself. I find this assumption so offensive, just because I have self harmed, just because I have been in secure hospital settings does not mean I have ever been a risk to others! How dare these people treat me as if I maybe a risk. I’m going to be asking for their proof that I have ever been a risk to others because I know I haven’t and I want the comment removed.

The plan outlines my signs of relapse, well given the signs they suggest are indicative of a relapse I should be in a hospital right now. Well dissociating on a daily basis is deemed a sign of relapse and having flashbacks is too. I’m doomed if these stay on my list, I have D.I.D for goodness sake of course I will dissociate! I also want to know which individual never has arguments with their family, because if I do it’s a sign of relapse. Yes seriously the signs are so silly even my family are dumbfounded by them.

Finally there is that solutions box to relapse, it’s great even though I have no PRN medication it’s listed as a technique to use. But worst of all 5 years after my last hospital admission the threat of readmission still remains, the plan states ‘if risks continue to escalate to a level above carols ability to cope in the community consider hospital admission’ why? Surely there has to be other solutions first, maybe extra therapy. They assume increased dissociating is a risk, with such signs in the plan I can’t win, if relapse and risk are dissociating, if it’s having arguments with my family how can I win. I have a dissociative disorder of course I will dissociate and when I’m stressed or have increased anxiety I will dissociate more frequently. That doesn’t mean I need to be locked away in a hospital. It means I need help maybe support to deal with the stress and the anxiety, why do mental health professionals still look at the problem they can see and not the cause.

My plan is an absolute joke, it’s so poor it’s insulting and as I maybe changing teams soon it needs more than ever to be right. I don’t need a battle right now I want them to just get it right, to understand me and my D.I.D, is that too much to ask?

Copyright DID Dispatches 2014

D.I.D – doesn’t mean I have three heads so why was I ignored.

image

 

There are times when I find myself bewildered by events and today was one of those days when I really wasn’t expecting events to unfold in the way they did. I had seen a few weeks ago an invite on social media to an open day at a peer led user support organisation in the city close to where I live. It immediately attracted my attention as I really feel it’s the right time for me to start engaging with such services in my own area.

The organisation were keen to promote their day and I was keen to attend, so this morning I ventured 14 miles from my village to Chester. After difficulties finding the venue which had resulted in my going around in circles for a good half an hour as I dealt with Chester’s roads and it’s one way system I managed to make my way in.

I expected I guess to be welcomed at the door, that people would be chatty and helpful. I hoped I would find out more about the services they offered and other organisations which use the venue. I didn’t expect to feel ignored, judged and isolated but that’s exactly how I felt within a very short time.

There was no one greeting people as they arrived and no one to talk too either, some people who clearly knew one another sat engrossed in conversations as they ate their lunch at the far end of the room seeming somehow distant. Whilst the professionals stood huddled together hovering nearer to the exits, as if service users and mental health and social care professionals couldn’t mix. They eyed me with an air of caution, I did wonder if I had three heads that made me stand out as they looked so concerned.

In the end after studying the display boards and looking at service users art I decided it was time to leave. I felt so upset that no one wanted to even talk to me, what was wrong with me that people couldn’t even say hello. As I walked down the street I felt the tears begin to flow down my face and had to try and deal with so many mixed emotions of various parts of me.

I sat on a nearby street for quite a while, trying hard to ensure that those parts of me who were clearly very upset felt reassured and safe. I also needed to feel settled and less distressed before I could venture home. If I’m honest I was quite shocked by how this situation had made me feel, why should the fact people ignored me make me so distressed. I kept trying to think had something reminded me of past events, was there any other trigger, but I couldn’t make sense of things.

image

I thought perhaps people saw me as different, I mean I might not have three heads visible but I do have a complex dissociative disorder and most people I meet for the very first time, well they’ve never heard of this diagnosis before. I know I have found in the past that there is a fear of the unknown and part of the reasons behind starting this blog was to dispel the myths and scepticism that surround Dissociative Identity Disorder. But I didn’t even get chance to say my name, let alone discuss any mental health related topic. So unless I had literally grown three heads suddenly or switched in a very obvious manner I realised it wasn’t my diagnosis that had caused this situation.

As I made my way home I began to reflect on the split between service users and professionals, why is it that the two groups find it so hard to be seen as one collective body interested in Mental Health services. I thought about the service users who were in that room who didn’t engage with me either, were they struggling or feeling as isolated as I was. Most service users I have met have been far more friendly, more engaging, but I also know it’s not always easy if you’re feeling nervous or more vulnerable.

Perhaps some of the professionals lack of engagement is as a result of situations like today, I’m sure if people had encouraged and initiated an interactive dialogue between the groups of service users and professionals in that room today we’d see a change in attitudes. Professionals wouldn’t be so blinkered and service users like me would be less likely to fear the people, who many of us feel hold far too much power. The medicalised model of Mental Health has led me to fear many doctors, nurses and other professionals who at one point in my life controlled everything. I’m even anxious currently at facing my upcoming CPA simply because it’s being held on NHS territory.

Today’s events bothered me and they could have been avoided I’m certain of that, if only a bit more thought and consideration of people’s needs had been taken into account by those organising the event. If only I’d been welcomed, greeted at the door and even introduced to others in the room. Then I would have felt welcome and I’d have wanted to use this service week in and week out, I’d have contributed too. I’m keen to expand my involvement in such organisations not just to take out but to give back too. I’m sure those who run this service tried hard to organise their event and yet sadly failed to think about a simple greeting system.

I know organising an event like this isn’t easy, I’m a trustee of a charity and we make sure we welcome every new and existing member at each and every event we hold. It’s just a natural part of what the charity does and maybe that’s why it hit me so hard today when things went array. My expectations were perhaps of the same kind of welcome I know I give out to people who attend any event I’m involved in facilitating.

I doubt I will get the chance to go back to this organisation it will certainly be hard given parts of me feel rejected and judged by them. I doubt my tweets about what happened will even get a response as organisations rarely take criticism well, even if it’s constructive feedback. I feel that’s a shame my views are honest and fair and I’m not judging anyone, it’s just what happened and perhaps this was an oversight. But I can’t help wondering how many other people ventured into that building today as prospective new users of a valuable service and walked away feeling more isolated, distressed and hurt.

Copyright DID Dispatches 2014

How mental health services need to change

image

My message to those in Power 

I’m often told to look how far I have come, how much progress I have made and I take that advice on board, but sometimes it is good to reflect and look back at what were my darkest times. I so want lessons to be learnt by those in authority, to ensure that no else ends up in the mess I was in. One of my biggest fears is that healthcare professionals will still misunderstand people in crisis and end up placing those people under further mental stress and strain.

When I look back at the various times I spent in psychiatric hospitals I can see some glaring issues that need addressing and then I wonder how I can get the healthcare professionals to listen. I think mental health services are often treated shabbily and funding is a huge issue, yet somehow the system seems to make the same mistakes time and time again.

The reality is of course that the powers that be who are in charge of our mental health services, the people who commission services, see one thing, funding! I know this only too well as every six months my Clinical Commissioning Group meet to discuss and review my own case. My care co-ordinator has to face the funding panel at least once a year to explain and justify why my therapy and support package should continue. I have learnt over time that it’s all about money, not about me and I’ve stopped stressing as much as I use to about these meetings.

The issues that I feel need addressing are simple and yet cost effective, I believe if you treat a patient right the first time you would reduce costs. If ten years ago I had been correctly diagnosed and treated appropriately, I wouldn’t have spent years in hospital thus saving thousands of pounds.
Instead I’d have received appropriate care in the community, psychological input that was appropriate and works, and I would be much further along my journey of recovery.

Instead of course like many people I was placed in a hospital, misdiagnosed and misunderstood, treated as if I was the problem and had no idea about my own issues. I was left to wander aimlessly through the revolving door of mental health and medicated to a point that left me hardly knowing what day it was anymore. I wasn’t entitled to an opinion about myself or my treatment and no one, but no one asked me how I really felt. I was made to feel guilty for self harming and like most patients ignored by staff on a frequent basis, who seemed so isolated and shut off from the patients in their care.

As I journeyed along I moved from hospital to hospital, I’ve seen sights I’d rather never have seen sights that to this day fill me with fear and sadness. I will never forget the women I met on one ward who was in so much distress she screamed day and night, the staff would yell at her to shut up, some patients would join in and there would be a chorus of people yelling at this lady in obvious distress.

She shared my name and I felt sorry for her, she was someone’s daughter and she was treated shabbily and without care. She needed appropriate support, most probably one to one care and someone to ask her why she was in so much distress who would actually listen to her answers.
All I ever saw was staff shouting at her and them giving lots of medication to her, anything and everything was about shutting her up.

Nor will I forget the patient who in secure services had her arm broken by another patient or the one who when she acted out her emotions was punished, placed in isolation and deprived of her belongings. I won’t forget the way I was made to feel either, the fear that gripped me when I was held inappropriately in secure services and told I had no rights. The way I was watched by staff; especially on close observations and treated that will never leave me.

Now I know the mental health system is not always like this, I’m certain some healthcare professionals care about their patients and treat like them like human beings with dignity and value. I have seen systems that work, for amongst all the darkness were glimmers of hope and examples of good practise and this is what we need to ensure is in every hospital and Community service.

The involvement of service user peer representatives on wards so patients views are paramount, open desk systems instead of closed offices enabling staff and patients to work collaboratively. In one hospital patients were allowed to read and add to their daily nursing notes it meant staff interacted with patients and patients views counted.

Access to talking therapies much sooner than is often the case currently is another essential, and more access to better equipped crisis support would help reduce admissions and ease peoples suffering too. Better community services are certainly invaluable and a less medicalised model of care.

Research shows that delivering appropriate psychological input reduces costs, more importantly it improves people’s lives and that’s what matters the most. My own case is proof that savings could have been made if I had been treated appropriately and not misdiagnosed, my treatment today is still saving costs as it’s cheaper than any admission. More importantly I’m much better with the right treatment and I’m regaining my life, a measure that is priceless.

I truly hope I get the opportunity one day to influence the powers that be so they change how they deal with mental health services. They need to understand how their underfunding causes pain and damage to so many lives, most of all it waste more of the valuable resources they are entrusted with.

Hospital managers need to address how they engage with service users and include them in the decisions regarding their care. I guarantee improving this would benefit their staff as well. They need to address how they run community services in order to provide a better quality of care. Finally they all need to stop sending people to inappropriate units run by the private sector which don’t have the patients interests at heart just their share holders.

 

copyright DID Dispatches 2014

Why are compliments so hard to accept?

 

image

Yesterday at my Care plan meeting I hadn’t expected there to be any positive compliments, I didn’t feel as if I had warranted them so I was surprised.
I sat and felt embarrassed and uncomfortable as the discussion unfolded so desperately wanting the conversation to move forwards, but the professionals seemed intent on giving me this recognition. I was surprised at how it all made me feel and I found it rather strange that my reaction was one of being embarrassed.

Afterwards I asked my psychologist why I felt so uncomfortable and it led to a discussion and me thinking more in depth about why this all felt so odd and surreal. The reality is that positive compliments are something that I’m not so used too, they didn’t make up my life as a child unless they came with a cost. I was most often put down and made to feel small and I grew up thinking I was a pain. I was only ever a good girl if I had to do things I hated and that hurt me and were in reality abusive to me. So I thought I was someone who was worthless, who deserved to be belittled and sadly the professionals I have encountered over the years have in most cases often carried that on too.

I am sure that the professionals didn’t meant to make me feel a troublemaker, or a nuisance but their comments often led to me feeling this way. The times when I was told by nursing staff that I was only self harming for attention or when people would raise the issues of care costs in meetings. Making me feel like a commodity and a cost burden, in truth at most CPA’s over recent years this has happened and I have often felt misunderstood and judged by the very people tasked with helping me.

The reality is of course my reactions both yesterday and in previous moments stem from my past, they stem from when I wasn’t allowed to feel any worth. That is something that I cannot change, my past is my past and yet I can change how I react today, it’s just going to take me sometime.

Compliments are not easy for many people to hear and so I realise I am not alone in feeling uncomfortable, but that doesn’t mean I didn’t warrant them. In truth I am moving forwards and I have taken huge strides forward in recent months and that needed to be recognised. Yesterday the professionals wanted to help me to understand how much I am progressing and how much they recognise that.

I know they have at times been critical and misunderstood me, yet here they were trying to tell me I’m doing good and I just wanted to rush on with the agenda. Goodness I must confuse them at times, it must feel as if they can’t do right for doing wrong.

image

The reasons for their praise was twofold, one my decision to give back some of my support hours a decision we have thought long and hard about in recent weeks. Since one of our support workers left we have had to manage with less support whilst new staff are found and start working. This change has led to me seeing that with new skills we have learnt in therapy we can manage with less care. This needed to be a decision I made, rather than one imposed upon us and so given recent circumstances I felt able to offer this reduction.

I am still going to have a significant level of care and I will still have 3 part time support workers who together will help us cope with every day life. They will help me to learn the life skills I need and to gain more independence over time. I was very clear that I am not promising reductions every CPA, indeed it will be only when I feel able and ready.

The support workers contracts are safe too because I have set minimum hours on their contracts to allow me to make further reductions later on without impacting them. There will currently therefore be additional hours they can work over their contracts which will help me in the here and now. Yet this will also allow me the freedom to reduce my care further if I feel able in the future without the guilt of worrying about staff.

So with all this security in mind I felt I could offer the saving in my care costs, I don’t have any idea if or when there will be any future reduction. I’m not setting any parameters or targets these are not needed, what is important is me making decisions that I am comfortable with and that work.
The second reason was the fact that I have made steps forward in respect of my therapy, yes there is still much more to be done. But progress however small is important, its a sign that things are working and a sign that I am clearly committed to this process. I know it’s hard work and at times painful but I so want to improve, but it needs to be at a pace I am able to cope with.

There is more understanding from the professionals, they seem to comprehend me better which I really appreciate it. Yes I found the compliments hard to take, I’m not used to them and I am for the time being going to worry that there is a cost for such compliments, as there was in my past. But I know I need to learn to accept this praise and accept I warranted it and most importantly that it is safe. It’s going to take me time to feel comfortable when I receive praise but one day I will, then I will have left that part of my past behind.
Copyright DID Dispatches 2014

 

The Importance of my Upcoming Care Plan Meeting

 

image

This weekend I will be trying hard to distract myself, as I know my mind will start to worry about my impending Care Plan Meeting (CPA) scheduled for Monday afternoon. It’s so easy to try and tell myself that things will be alright, that I don’t need to worry. Yet despite a very small official agenda for this meeting, I have so much I need to share with the professionals involved in my care, it has been a rather busy and at times tumultuous past 3 months. The official agenda maybe small, but mine isn’t it’s full of important issues that need discussing, I need to be heard by the professionals and I hope they are able and willing to listen.

Throughout the time since my last CPA my regular care coordinator as been absent, I have only seen the temporary person twice so they feel a bit like a stranger. I have had to call the crisis team, something I had vowed to myself at least never to do and I have become a somewhat regular caller to the Samaritans. It as felt at times like I’m losing this battle to get well, but I know I’m just learning to feel and to grieve.

There have been changes in my home life too, I’ve had one personal assistant leave and a new person will start the day after my the CPA. We are still looking for another part time person and that isn’t easy either, though currently we are at least getting applications in. Things within my family are changing and that’s meant that we are having to face new challenges and new concerns all at the same time. I know things don’t stand still, the world would be very boring if they did yet somehow for me change is always hard to deal with. Parts of me need stability more than anything and right now it feels I haven’t quite got the level of stability we need.

There have been issues with my medication reduction and that has been difficult to face as well, I hate to fail and yet I have felt like a failure over my medication. In the past 3 years I have tried desperately to keep reducing the amount of medication I am taking, but in recent weeks we have hit what feels like a road block. I have managed to stop my anti psychotics, but my reliance on benzodiazepines has been a much harder journey.

image

I’m now accepting that I need to rebalance myself before I continue to try and reduce the levels I am taking any lower. The fact I’m stuck is hard to bare because I feel I have failed, I want so much to be rid of this drug that has been a part of me for so long. This will be the first meeting in 3 years where I have to acknowledge I can’t reduce the levels of my medication. It’s been my biggest success and I’m not sure how I will feel, when I hear myself saying to my psychiatrist that I’m unable to keep this reduction going. I know it’s something I have agreed with the temporary person, but facing my psychiatrist with this seems somehow harder.

I have also realised in recent months how vulnerable I am at times, it’s not something I like to admit but I know it is true. I like to think I can manage well and I’m as able as I ever was, but sadly that’s not the case. There are times when I am easily manipulated and misled and this causes me many issues.

Certainly in recent months I have realised how much people can take advantage of me when I am not in control of this body, I switch alters and a little part of me comes out and I am as vulnerable as a child in those moments. Easily led and easily pliable and so often unaware of the consequences of my decisions or actions at that time. Alongside this are the inbuilt default positions that result from my childhood which lead me to be very susceptible to abuse of one kind or another. This doesn’t necessarily mean physical or sexual abuse, but emotional and other types too.

I am now aware just how vulnerable I am and if I am honest it’s scary, scary because I can see how much I am risk. I don’t want wrapping up in cotton wool, or treated with kid gloves, I want to make my own decisions as much as I can. Yet in recent months I have had to put in place new safety precautions to protect me and those need to be made clear to the professionals at my meeting.

image

I also know there will be a report from my psychologist and I will be asked about my psychology sessions as well. I’m quite nervous about the report, why I’m not sure I know I am doing well and things have been good in the sessions. Maybe it’s fear of the unknown that is causing me to worry, or fear of what might be said but mostly I think it’s the fear of being judged.

I know I want to share the good things that have happened, like internal dialogue and how we have some communication with my teen. I want to tell them about how we went paddling, how we managed to poach an egg and not burn toast, things I never thought possible. I want to explain how my days are different now, they are full of internal dialogue with the different parts of me, yes one sided mainly but it is a change. I have to plan things differently to try and help the other parts of me and that is hard to manage at times.

I want to express how I have learnt to understand a little how I think and feel and why, that I possess inbuilt default positions formed decades ago. I never realised they existed until the last few months and now I know my psychologist and I will need to work through these in order to help me find new ways of thinking. I want the other professionals to realise just how much work I am doing and how complicated this all is. I really am unsure if they appreciate the impact of trauma or my childhood upon the way I am today, it is In my opinion time that they did.

There are still unresolved issues over the legality of which Clinical Commissioning Group (CCG) pays for my care. I think I know the answer it’s just the CCG who currently fund things hasn’t quite got the full legal information yet and so no decision has been made. I’m not going to rock that boat, not at this CPA at least I have decided that I will wait for them to decide they shouldn’t be paying.

image

In the meantime I want to give something back, so often in these meetings over the last 5 years I have been made to feel like a funders nightmare. Put under pressure to give a saving and at times made to feel like a burden upon the state and unworthy of the support I currently get. I have lost count of the times I have been told it would be cheaper to put me into a unit or residential home, I know that’s not true of course it would be more expensive. On Monday I want to give them news of a saving and I so want to see the faces of certain professionals as I tell them.

I don’t expect much sleep on Sunday night as I anticipate lying awake worrying they won’t let me be heard, or they will judged. Worse still I fear they will spring a new agenda item upon us causing disruption and fear within me. I guess its going to be a busy few days as I try to distract myself from worrying whilst at the same time manically working at keeping all my alters; the different parts of me, settled and content. Wish me luck….

 

Copyright DID Dispatches 2014

 

Taking Control of my Own Care -Direct Payments

 

image

Yesterday despite feeling nervous I found myself sitting in an hotel lobby area trying to look relaxed and focused as we interviewed the two candidates selected to attended. I think the hardest thing for me was trying to explain what my needs are, and the reason I need support.

How do you explain in a very brief time frame about Dissociative Identity Disorder without giving prospective support workers too much detail, especially when few have heard of DID. It’s funny but I can give a presentation on my condition to a room full of mental healthcare professionals and it doesn’t daunt me, but in these 1-1 interview situations I find it quite daunting just trying to explain what DID is.

Maybe that is a result of my own fears about stigma, in a room full of people I know that even if someone holds biased beliefs about Mental Health I most probably wouldn’t notice. The sheer volume of people is in a way a protective barrier from the stigma that some people hold, there’s a comfort in knowing I will always find someone in a room full of people with some form of mental health issue themselves, so an ally against any skepticism and stigma.

Yet I find on an individual basis I am more likely to see the stigma if it exists and I find difficult, I guess it makes me feel more vulnerable. It is not easy trying to explain to random strangers who have often no interest in DID, that my mental health is the result of trauma and the reason we have care needs.

 image

The people we saw yesterday were both really nice, but one of them was more willing and open to finding out more about my diagnosis. They spoke to me and my daughter who acts as the employer in respect of my supports workers; she basically manages the direct payment paperwork,  on equal terms. I didn’t feel like I was being judged, stigmatised or treated as different in fact I felt a sense of equality that is often hard to find even at conferences; where both professionals and experts by experience are present.

The end result of the morning interviews was I thought I had at least 1 potential support worker, but I couldn’t just make the decision. I spent a few hours talking internally ensuring that all of me were happy with the decision we wanted to make, it’s crucial as this person will spend hours in our home. Support workers help us so much and yet they see us when we are both good and bad, they will be around when I’m overwhelmed, sad, upset, tearful and many other emotional states too. They see inside my world and know a lot about me, I need to be able to trust them and also feel safe around them it’s a crucial decision.

In the end we made a decision and have offered them a post, I always dread this offer bit as in truth they can now reject us and yes it has happened and it hurts. Thankfully the lady in question said yes and subject to all the checks that now have to be done, she will start working with us soon. I’m glad we have found a suitable person, and I’m sure we will get on fine and soon settle into working together.

Of course we needed 2 staff and there were other candidates, I can’t as yet decide on the others so have further work to do before making a final decision, it maybe that we have to do further interviews I guess only time will tell.

image

The concept of Direct payments is a good one, it gives me and my family the ability to control who cares for me, and put us in the driving seat of these decisions. Prior to direct payments care agencies or specific aftercare companies chose who came into our home, they dictated what happened and when. It felt as if in a way I was still in hospital lots of control, rules and regulations, they’d write copious notes about us and I wasn’t allowed to read them. If I had issues with anyone I would have to go through the various company protocols to raise them and I often felt judged.

I have had some really good support workers, dedicated professionals who not only empower me but treat me with dignity and respect. Some have stayed a while whilst others have been with us for only short periods, I felt proud when one of them left to become a psychologist I knew she’d be great and another went off to university because her time spent with me inspired her to achieve.

But sadly I have had those who have failed miserably too, I had one person who would walk into my home, put on the radio and fling open all the windows even if I was cold. When I complained I was seen as the problem, no one understood this wasn’t a working environment to me but my home.

At one point I had staff 24/7 so night time support was the norm, more than one support worker felt it was ok to sleep and snore loudly on a waking night shift. I was awake because of their snoring and yes I can laugh about it now but at 3am in a morning following an horrific flashback It wasn’t funny.

Care agencies are run for profit, in my opinion they put additional barriers between the client and the support workers. Direct payments have changed the way my care is delivered and it’s working better, the interviews are taxing but they provide us with opportunities too. For now I feel in control of my life and that is simply amazing after years of being controlled.

Copyright DID Dispatches 2014