Update on Funding and transferring CMHT

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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.

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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

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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

Hidden truths -revelations of betrayal

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

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

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

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

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

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

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

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

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

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

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

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

Copyright DID Dispatches 2015

The Day I Had To Say Goodbye To My Family

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 I can remember so well the day, it started like any other day in hospital I had woken after a night of poor sleep in my small clinical room. A room that contained just a bed and a wardrobe, and a crate of art things and personal possessions. I listened to my radio as usual, this had become part of my daily routine as a long term hospital patient. I was called to get my medication that morning and despite speaking to a number of staff, no one said this was to be my last day close to home.

My room was at the far end of a corridor and I recall walking up into the main ward many times that day. Talk on the ward between the patients was about Christmas, who was likely to get home and which of us would have to stay. I knew I was going nowhere, I’d be staying in hospital after all my Section 3 had only been in place a short while, but everyone including me believed I’d be close to my family.

The staff didn’t give any glue to the changes that were about to happen, in fact they talked as if I would be there over the festive period. Looking back now no one from the hospital team was honest to me, no one told me I was about to face turmoil, chaos and changes I couldn’t imagine. Perhaps they were worried about how I would react, yet in truth the surprise element only made things worse for me and my family.

I was aware that the doctors had spoken about moving me but no final decision had been taken or so I was led to believe. They had kept saying a move to a trauma centre would be a safe way to deal with trauma work and would be faster than doing it as an out patient. I had no clear understanding of the type of place they were thinking of, nor do I believe had my family. I do know we were assured of lots of things, none of which turned out to be true.

Looking back I’m not even sure that the staff making the decisions knew about secure services, nor did they really understand the nature of the place they were thinking of sending me. A private institution that supposedly could cater for people with a trauma history, that focused upon the control and restrictions it could place upon patients rather than relational security. Intensive trauma work should have meant numerous therapy sessions each week, with a raft of other groups and activities designed to aid recovery. That was the kind of care I was told I needed but it wasn’t how this place operated,  though given it was 200 plus miles away how could those tasked with making a decision really know.

That day progressed like many before it, medication, meals and some Occupational Therapy too, speaking to the staff was limited as they hid as usual behind the office door, failing to interact with the patients. In the late afternoon I recall the doctor visited briefly, I was huddled into a small room to be told the news.

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In that moment life changed the staff informed me that I was being relocated, relocated from an open unlocked NHS ward to a forensic medium secure privately run facility, not a specialist trauma centre.  I can recall it wasn’t a great conversation, it lacked much clarity or detail there were just simple facts. My family who had been informed with as limited a time as possible would visit that evening, I would leave at the crack of dawn the next day and a nurse would travel with me. I had no rights to challenge or question this decision and I certainly couldn’t say no to their plans to transfer me.

I felt bewildered, frightened and confused beyond words, I had so many questions so much fear and yet they told me it was the best place for me. I recall feeling as if the hospital managers just wanted to rid themselves of me, that they really didn’t care about what was best for me or my family. Looking back my views haven’t changed, the move was based purely on financial reasons this certainly wasn’t a clinical decision, not was it based upon risk. I had no criminal history, had only absconded; whilst detained under the Mental Health Act, once and was willing to work at trauma therapy.

When I ask my family about their recollections, the one issue that they recall is the limited amount of notice they were given. My daughter who was my nearest relative was informed late afternoon too, she and her Dad then tasked with trying to organise a visit that included my two sons. My ex spoke with me on the phone, he was concerned with what was happening and he was frustrated at the lack of understanding by hospital staff. He had wanted to take me out for tea, one last family meal before the move and yet the hospital managers wouldn’t allow it. I was being observed and monitored perhaps they thought things wouldn’t be too stable in my last few hours on their ward.

That family meal didn’t happen in the way he or the children had hoped, but defying hospital rules he and the children arrived laden with McDonalds take out. We would have a family meal even if it was different, we would have time as a family one last time, they would say goodbye properly.

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Food wasn’t allowed on the ward, so the staff ushered us into a side room, squashed in this tiny room we had our meal. We enjoyed hugs and a few tears, my sons and daughter gave me something to remind me of them. A photo was one memento I had to have, alongside a number of small hastily grabbed trinkets from home that the children felt signified them. One son gave me a toy model of a dragon, he was really interested in them at the time and there was also a soft cute little monkey that really summed my youngest. Each gift was treasured as I knew that the children had thought carefully about them and they didn’t want me to forget them.

They also brought a small case for me to pack some things in and they took home all my art things as I had been advised these wouldn’t be allowed in my new hospital.  My daughter was allowed into my hospital room for a few minutes to help me pack, it gave us time to briefly talk away from her brothers. As the oldest I needed her to lookout for them and more than ever act as a surrogate mum, I knew I wouldn’t be able to do that for a while.

There was lots of reassurance on both sides, the children promising to visit and write and call. I promised to keep in touch and think of them every day and I really wanted them to know that I would miss them. By the time it came to say goodbye there were tears, lots of them, because despite my mental health issues, despite my past, despite me at times wanting to die, we are a really close family. This move would impact all of us for many years to come, I wonder if the hospital managers realised how much grief and pain, how much stress and worry their decision to relocate me caused. I very much doubt it.

Looking back at that time in my life still hurts, I will forever remember the nightmare journey of those years, the nightmare of secure services. The nightmare of being uprooted and taken from my family, and the anguish I felt not just then but in the years that followed.

Seven years on despite it still hurting, I need to focus not on the past but on the future and to remember the positives that came from that time, for out of the darkest of times came hope. My family and I realised if we ever needed to the value of family, the bond we all share and the separation well it strengthened us all to cherish one another. We have grown together not apart because of that time, and I know my children truly love me despite everything and they know I love them more than words could ever say. I guess facing what we did means today we can be assured that no matter what we will always be there for each other.

Copyright DID Dispatches 2014

The Impact of Mental Health Service Changes

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As I sat with my care coordinator this week discussing the likely transfer of my mental health services from one NHS trust to another, we realised this means more changes. I chatted with her about the number of care coordinators I have had since my discharge from hospital five years ago and how that impacts a service user like me.

I know I am not alone, many other service users encounter a constant flux of professionals who seem to come and go, no sooner do they arrive they leave again. Usually it’s been staff turnover or staffing structure changes which have meant job descriptions have changed and they no longer undertake the care coordinator role.

In 2009 I started out with Sam, I had been fortunate she’d worked with me since late 2006, we knew one another and I trusted her. However shortly after I returned to out patient services things changed. We soon had a list of people who came and went, there was Caroline a social worker, who left the department, then Marion a Community Psychiatric Nurse who left for a promotion. She was followed by Richard another social worker, who sadly never did understand us or the diagnosis, Jane came along next she was another social worker. She and I got along quite well until one day she cancelled my Care plan meeting without consulting me or my family, this caused friction and unnecessary distress as we had issues at the time that needed discussing at a meeting urgently.

When she left her post Malcolm took over, he was head of the team and so often difficult to get hold of, but he seemed to understand what it meant to engage with a client and treat them with dignity and respect. They stopped having pre meetings ahead of my care plan meetings which I felt relieved about, I hated the fact the so called professionals would meet to discuss me, decide what was to happen and then claim they’d consulted us. That’s what happened for years, in fact from 2004 to at least 2011. When I was told he was leaving it felt like I wasn’t good enough to keep anyone to work with me, and I remember thinking ‘not again’. I also feared things would return to the old way of working, I’d stop having true engagement and consultation and instead they’d resort to treating us like some third class citizen, who they made decisions about.

After him came Marion who by now had returned to the team on yet another promotion, she and I had departed last time on awkward terms and my level of trust in her was low. Trying to engage with a person who you don’t trust is a bit like walking on egg shells, wondering if you are going to make a mistake and constantly wondering if I could trust anything she said. In truth trusting her well it didn’t happen, I never met her alone always insisting my daughter attended our regular meetings so I would always have a witness to support me if she said anything later that contradicted what she had in fact said.

By the time Colin came along it was only 3 years post my discharge and yet I had already had six different care coordinators and one of them twice. Such changes equate to each care coordinator being with me for an average of just 4.5 months, how is this helpful. Colin was care coordinator number eight and thankfully he stayed for over 18 months, then his role changed and Fiona took over less than six months ago. Now I’m facing another change and this time it’s because of funding changes and me potentially moving from one trust to another.

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When I sit and think of all these changes and the staff who undertook the role prior to Sam, I can’t help thinking of how in the last five years staffing within NHS Community Mental Health Teams has constantly shifted. The turnover has been high, as merges, staffing levels, structures, processes and the like are changed by people in suits far removed from the front line and service users.

On top of the care coordinator roles changing, in the 10 years since I first began my life as a patient and service user I have faced changes of psychiatrist so many times. It’s as if you no sooner get to know someone really well, they actually understand you and how to work with you best, then it all changes. I have had 13 different psychiatrists in just over ten years, that equates to one every 9 or 10 months. How does this give continuity or allow a trusting therapeutic relationship to form, how does it allow for the skills or knowledge gained by a doctor about me to be transferred to another. After so many changes how can doctor number 13 understand me as a person, the things I have endured in the psychiatric system. Will he really know more than a brief synopsis of me, my diagnoses or the medications that do or don’t work. Will I even get time to build any kind of trust or understanding of them, or will I waste time trying to explain the complexities of my diagnosis to them only for them to leave as soon as they grasp it.

Many other service users face having their care coordinator removed altogether often despite having a severe and enduring Mental illness. Some people are being discharged back to primary care services and now fear they may never be able to access the secondary services they might need again, be that a care coordinator or Psychiatrist. Why because due to changes in access to secondary services, staffing cuts and funding issues, service user needs don’t seem to figure so highly.

I am sure it can’t help the staff either facing a constant state of flux as their case load or job descriptions change. I’m told the trust I am under currently is having a more stable period but I do find it hard to believe, after all each change previously has always been spoken of in terms of this is the last one. It can’t help when workloads are increasing and you feel stretched to breaking point, it can’t help to know people you’d once have seen now slip through the net. Surely it’s time for serious re investment in Mental Health services not just for the benefit of people with mental illnesses but for the staff too.

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Copyright DID Dispatches 2014

The Postcode Lottery of Psychological Therapies

 

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If you think disparity is just between Physical Health and Mental Health think again, there is disparity even within various streams of Mental Health budgets. Yes it’s not just one big pot of NHS funding, it’s broken down into smaller pots of money held and managed by various Clinical Commissioning groups (CCG’s) throughout the UK.

The CCG’s have control of various pots of funding, they might have contracts with a local NHS trust, or a contract to an external provider for specialist services and then there is the rather isolated pot of funds for Secure Forensic Services. Each pot will no doubt be managed independently of one another and the pot holder is known to be very protective of their little pot of funding.

This means if they are faced with a client with complex needs such as Dissociative Identity Disorder they may feel it’s not within the parameters of their budget to fund a service. Instead they may choose to do nothing, ignore the clients needs and tell the NHS trust locally to try and sort this patient out within regular services. Or they might choose to pass the buck and ask their colleagues in Specialist services to think about funding a specialist psychological therapy geared towards such clients and that is deemed beneficial. Specialist services may choose to accept this client or try and either pass them back or ask if the client needs a forensic service to offer said treatment and if so pass the buck to the Forensic services budget holder.

Sound complicated, well it is and what’s more it’s not cost effective never mind client focused, if you think this doesn’t happen think again as sadly it does. What we have here is a postcode lottery that exists within the NHS and it is a nightmare. We also have self absorbed individuals who protect their budget at all cost and do not look at the bigger picture.

Let me explain this is detail. In Cheshire there are numerous CCG’s some spend more on Mental Health than others, some commission long term psychological therapy for those with Complex Dissociative Disorders or complex trauma. Yet the harsh reality is some CCG’s are so blinkered they don’t and that creates a very un-level playing field within which people have to navigate getting the healthcare they need.

 

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The sad fact is those CCG’s which don’t offer specialist psychological services are actually wasting more money than they save, research of one such specialist psychological intervention program in Cheshire shows that the cost saving per client per annum was £20,000. (The role of Clinical Psychology, British Psychological Society 2014).

Research clearly shows that by training and equipping a psychologist within the NHS to treat those with Dissociative Identity Disorder the cost saving per client is huge. The quality of life improvement is priceless and yet it doesn’t happen everywhere, it doesn’t even happen in the same county across different CCG boundaries. This is ludicrous it’s a waste of valuable NHS resources and it’s hellishly frustrating for the clients stuck within this postcode lottery.

I happen to live in Cheshire, just the wrong part it transpires and as such if I needed to access NHS services here I’d be treated according to Cheshire and Wirral Partnership NHS foundation trust ‘within a wider treatment model rather than as standalone cases’ as happens in the east of the county. This care would be using a regular time limited CBT type therapy, with long waiting times and limited success. A year of CBT if I’m lucky won’t even scratch the surface of my needs and the cost of in-patient care or crisis support that would be inevitable will be far higher than the cost of long term psychological therapy.

Despite everyone knowing it saves more money to offer specialist long term therapy it doesn’t happen and why, well after attending the AGM of the foundation trust this week I was told that my CCG West Cheshire won’t fund the care, care that is clearly needed by people with D.I.D, saves valuable NHS funds and gives people back their lives. I was also made aware that certain CCG’s spend less in percentage terms of their pot of funds on Mental Health than others, how can this be right or fair?

Over the coming weeks and months I will be asking questions of the local CCG, the health secretary and others because whilst I may by default be accessing a great service; purely due to having being sectioned under the Mental Health Act in the past, many others won’t be. Instead like many people I meet throughout the UK and Overseas they will either be struggling to fund their own psychological therapy, receiving inadequate care or none at all.

It’s time we stopped the disparity, it’s time we stopped this unacceptable treatment of those who have already suffered enough. If I had a broken leg I would not be told to wait a year for a cast, if I had a brain tumour I wouldn’t be told I couldn’t see a specialist and instead had to make to do with a student nurse. So why should those clients requiring long term psychological input be treated like third grade citizens, we shouldn’t. I’m willing to fight, are you?

 

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Research papers : National Mental Health: Well Being and Psychological therapies – the role of clinical psychology 2014  British Psychological Society

How investing in therapeutic services provides a clinical cost saving in the long term 1 September 2011 By Mike Lloyd HSJ Health services Journal

Copyright DID Dispatches 2014

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