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Update on PTSD App

20 May

I wanted to write this post to update people about the ptsd app that I have been developing. 

It has been such a stressful ride getting to this point, I have had to change to 3 different developers for multiple reasons and each time I have been promised the world and unfortunately they have not delivered. 

The last developer got both the android and iOS versions of the app to quite an advanced point. There was literally 2 issues that needed to be resolved and then it was good to go. However, he has completely disappeared and I have had no contact from him for weeks now. I have tried every single thing I can but then had to take the decision to end the project. 

It makes sense that all I’d need to do is find a developer to fix these two issues and then be ready to launch. Unfortunately it’s not that simple. Without getting techy, I don’t have access to the source code and without this, it is extremely difficult to do anything. Therefore I’ve been left with a difficult decision to make. 

Do I a) try and find someone who can do this. It isn’t guaranteed and I could be throwing more money away to be left in the same situation I am in now. Or b) start the whole process from scratch? 

I must admit, this whole thing has left me thinking about my own abilities. It’s left me questioning whether anyone would even want to see the app, whether it’s going to be any use to anyone. Why would anything I do, be helpful to others? It’s really stressed me out and without a few really close people to me, it would have sent me downwards. 

However, I’ve always wanted to help other people with ptsd and I believe this will do that. I have to keep this belief or I wouldn’t be able to continue, financially or emotionally with pushing it forward. 

I just wanted to put this update out there to show those who have supported this project that it is still ongoing and I haven’t given up. 

If anyone has any advice or knowledge of app development, please feel free to get in touch. 

Obviously with all the different developers etc, this has cost me money that in the main has come from my own personal pocket. If anyone can help in that aspect of things, again I’d be eternally grateful. You can see the gofundme page here http://www.gofundme.com/ptsdapp

Thanks to everyone’s support along his journey, I appreciate it so much! 

 
 

Personal Health Budgets for Mental Health – Part 3

24 Mar

It has been a while since I last posted about the Personal Health Budget (PHB) that I was applying for. To recap, there was a new mental health scheme in my area that was looking to give individualised budgets to help reduce a patients overall cost to the NHS (including things such as a&e visits and inpatient stays). After lots of different consultations with different professionals (my care coordinator, therapist, a person from the local commissioning group and a budget broker), a support plan was put together. This included having extra support around my therapy sessions so that I could go ahead with trauma work and also having a personal trainer so that I could restart my healthy ways in a safe environment (he works out of his own private studio so I wouldn’t have to go to a gym which is an issue).

In my original assessment, it was worked out that I had cost the NHS around £17,000 in the last financial year and so the budget set was 15% of this (£2,550 for a year). The aim of spending this money was to reduce the £17k cost and the plan we put together was an excellent one to reduce this. The problem was, it was going to cost around £8,000.

The application is taken to the local CCG funding panel (they agree local spending within the health budget) and the actual plan we had put together was agreed. The problem was the shortfall between the £2,550 and the £8k that was needed. Because of this, it was taken to a second panel and today I found out the results. They have rejected the difference and just given the £2,550.

I am extremely disappointed for a number of reasons. Firstly, this whole process has been going on since August. My therapy has been put on hold until this support had been put in place and so now I am 7 months behind. I don’t know what my therapist is going to say as she wanted the plan in place before she began the work. With £2,550, we can’t even put that support bit in place – they might as well have given a zero budget for the use it can be. And so I am left with the question, will my therapy be cancelled?

Secondly, I feel that the CCG have no real concept of the problems that people with mental health issues have and therefore are not willing to spend the money on us to give us a brighter future. I understand there are cuts everywhere right now, but by spending £8k, they would essentially be saving £9,000 in the year.

The measurable outcomes set against the budget were given as follows:

  • reduction in care co-ordinator contacts
  • reduction in home treatment team contacts
  • reduction in incidents of self harm
  • reduction in a&e attendances
  • reduction in acute in-patient bed days
  • positive changes in body mass index (BMI)
  • improvement in ability to carry out everyday activities and to go outside more
  • time spent per week doing changes in physical activity

Are they really serious? They expect all this on the measly sum of £2550? Do they truly understand the issues here, I don’t think so!

I don’t actually know what is next on my journey, I am having to sit with this for a while to digest it. We have spent 7 months saying this is the answer and it being a light at the end of the tunnel. It now feels like the light has gone out.

 
 

Can Anyone Help? Technical Info

18 Dec

Hey, as I’m sure most of you are aware, I’m currently developing an app for PTSD. I have one part that I’ve written that I need to know is technically correct. Please can anyone help or pass on to someone who can? This is the info:

Thanks for this I really appreciate it. This is the text:

“If you are in a life or death situation these changes can be beneficial, but what happens when you aren’t in danger but your brain perceives you to be? This is what happens in PTSD. Let’s get technical for a minute.

The reptilian section of our brain is responsible for the millisecond planning to choose between fight, flight or freeze. The amygdala is an almond shaped part of our brain that has a role in decision making and emotional regulation. Whilst research into what happens is in its infancy, this is what researchers believe happens in PTSD. When we have a flashback, the reaction starts in the amygdala and triggers a response in the hypothalamus. This area of our brain is responsible for releasing certain hormones and controls things such as body temperature, thirst, fatigue and sleep. The hormones that are released send the amygdala in to threat mode.

Normally the hippocampus, which is responsible for the time and sequence of events, allows us to see that the threat is not in the now and is just a memory. However, the amygdala takes over from this part of our brain when a threat is perceived and it feels like what is happening is in the present and we have the same flight, fight or freeze response. 

The hippocampus is also responsible for processing memories and, with PTSD, our memories haven’t been processed properly. It is like they are stuck there and so any trigger can bring this memory back very quickly.”

Any help would be grateful received. Many thanks. 

 
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PTSD, Police and Dissociation

12 Nov

**TW – TALK OF SUICIDE METHOD**

And so it happened again. On Tuesday I started to believe that I had to go to a parallel universe, one where my trauma didn’t happen. I cancelled my therapy appointment for the next day and also my prescriptions, as in my head, I didn’t need these things where I was going. It was a call to my doctors that sparked off the concern though and a GP from the surgery called me to ask why I’d cancelled the prescriptions. When I believe that I have to go to another universe, I can’t understand why others don’t see it and am very open about my thoughts. I told the GP about them and she rang the community mental health team (cmht). My care coordinator was off on holiday so it went to a duty worker who then called me. The same conversation ensued that I’d had with the GP and when I put the phone down, I thought that was it. 

It wasn’t. My mum called me a few minutes later, the duty worker at cmht had breached confidentiality (even though I’ve specifically said in the past never to contact my mum), and called her and told her about my parallel universe thoughts and what that meant. I was so angry! I felt betrayed and hurt by everyone, my mum included, and told her I didn’t want to speak to her and to leave me alone. This pushed me even further in to knowing I had to leave this universe to get away from all the crap that was going on. 

I waited until about 10.30pm as I wanted the roads to be quiet and I planned to jump from a motorway bridge. When I got there, I just stood watching, mesmerised by the headlights going by, but by actually not being able to do anything other than that. It was raining and I was getting cold and wet and so I decided to get back in my car and call a crisis line. I still don’t know why I did this. In my mind I was adamant all I had to do was die and I’d be in the parallel universe. So why would I want help to stay alive at this point? I have since been told it was my subconscious mechanism kicking in and I was looking for help. Anyway, over a period of about 90 mins I kept trying this number but there was no one free, I tried 14 times in all. To me, that was just an extra sign then to go ahead with what I needed to do and so I went back on to the bridge (I’d been in my car calling the crisis line). 

The next thing I knew (I’m not sure how long I’d been there for), two policemen were running towards me and grabbed an arm each and twisted them. I was on the correct side of the bridge still with a railing in between me and the ledge. I asked them to let me go as they were hurting me and one said no, not until you’re in the van and proceeded to frogmarch me to the back of a police van and put me in there (in the cage bit). They shut the door on me and locked me in. The next thing I knew they’d started the engine and began to move off. I shouted through asking where we were going and he said the hospital. I said I didn’t want to go there and this was against my will. He said “I’m not standing around in the pissing rain talking about it. If you don’t want to go I’ll section you and make you go”. I felt so helpless and all of this triggered offa flashback  whilst I was in the back and the next thing I knew, the door was being opened again at hospital. 

We were met by a further two police officers, one female, and once they booked me in to a&e, took me to a room to search me. I was totally overwhelmed by everything that had happened and then the female officer started to search me with the other 3 male officers stood watching. I felt so violated and uneasy I couldn’t stop shaking. This was all too close to my original trauma. I was in a total mess. They obviously found nothing and the two that had met us there left. 

Next I was called in to triage and I felt like a criminal being escorted everywhere by two police officers. I could see the looks from other patients, I was so embarrassed. I still didn’t understand why I was at a&e, to me the logic was there and why was no one else seeing it? The triage nurse said if I tried to leave she would be calling the police again, but the original two officers weren’t going anywhere. 

I was moved to the mental health room (soft chairs and a panic button), and sat with the officers for a while whilst waiting to be seen by the psychiatric liaison nurse. I took the opportunity to explain my situation to the police and to tell them how their handling of the situation had provoked a flashback for me and how I felt it had all been dealt with really badly. They seemed to understand and apologised. It just showed me though how far there is to go so that public services understand more about mental health. I know the police shouldn’t be the front line of mental health services but whilst they are, more awareness needs to exist. 

When I was seen by the psychiatric nurse, he was extremely concerned and said I had ticked a lot of tick boxes that made someone high risk. He said he’d put the facts to the on call consultant psychiatrist and see what they said. It came back that he wanted me in hospital, either informally or he’d instigate a mental health act assessment and have me sectioned. The nurse said he recommended just going informal as then I had the upper hand – they had to prove I was a risk to keep me as opposed to having sectioned me and able to keep me for 28 days and everything moving a lot slower. I know this particular nurse and had some trust with him and so agreed to go in as long as I was reviewed later that day. 

The next problem was of course the fact there was no beds. I ended up in the female lounge on two chairs pushed together. Needless to say, zero sleep was had that night. I was also still soaking wet and was extremely uncomfortable in wet jeans but no one was bothered about this. 

My experience on the ward is another post in itself but I needed to write down what had happened as ever since I’ve been unable to stop thinking about it. The way the police handled me has been whirring around my brain and so it’s obvious to me I’ve not processed it properly. I’m hoping by writing this out, it might help me do exactly that. 

I also don’t know the answer to what happens when I dissociate like this. It’s actually scaring me quite a lot right now. 

 
 

Personal Health Budgets for Mental Health – Part 2

28 Oct

This is an update after the recent post about personal health budgets in mental health. I met with both my care coordinator and woman from the health budgets department and it was decided that we should have a meeting with them as well as my therapist as my support was to be psychologically driven and so needed her input. 

When we all met the following week, we discussed how better my needs could be met based upon my health goals:

1) better crisis support to reduce a&e visits

2) support network around therapy as this was going to get difficult over the coming months when we start trauma work. 

3) help to get back to a fitness regime which was a big part of my life before everything happened. 

4) psychological help. 

In order to meet these goals we tried to think outside what the current NHS provides and so came up with the following:

1) Crisis support similar to a residential setting but without actually staying anywhere else – so having access to a service 24 hours a day as nighttime is my worst time and at the moment, I am advised to go to a&e at these times. 

2) A support worker twice a week to try and integrate me back to a standard of living and not just existing. Hopefully this will allow me to start getting out and doing things like shopping – simple tasks that just aren’t doable right now. 

3) A personal trainer twice a week to help me with my health and fitness goal to lose weight and hopefully reverse a recent type 2 diabetes diagnosis. 

4) Psychological trauma work to overcome my ptsd symptoms and move forwards. 

I must admit, I’ve found the whole process rather stressful which I know is because I’m the first in the area to do this and so a lot of questions are being asked for the first time and I’ve not really had anywhere to turn for advice on what others have done in my situation or similar. The good thing though is that I’ve realised my care coordinator and therapist both totally understand what I need in order to move forward and this has given me some renewed hope that I can get through this and maybe have a chance of a ‘normal’ life. I’ve definitely learnt however, that there is no way you can try and do this process alone, you need the help of professionals who know your situation.

I think when I was first told about this new way of working, I was worried that it essentially meant stripping away everything I was currently receiving and then buying in services. It really stressed me out thinking I would be losing relationships that I’d spent time and effort building and could I really go through all that again. I’ve since learnt that I can keep these things, like therapy, and the additional support is to help reduce costs elsewhere (like the use of a&e). I think this needs to be made more known at the outset to relieve any potential worry. 

The actual process seems a bit in the air right now, with some parts seemingly a bit backwards. For example, once you receive an indicative budget, you are able to meet with a broker to help fulfill the goals in the support plan. However, the support plan asks for information that would seemingly come from a broker so that bit had to be left unanswered. There was a lot of repetition as well in the forms and I’m not sure they are right as they currently are. 

The process though has been well communicated to me throughout and I can’t fault the people involved (my cc, therapist and woman from personal health budget department), it just feels like everyone is on a learning curve right now. Hopefully this is the start of things changing for me. 

Moving forward now, I’m not 100% how things will actually work out as I don’t know if there is anything out there that can be commissioned to meet the crisis care goal. I guess this is where the broker will come in and be able to help find anything out there. It’s quite a slow process so far, we started in back in August and so I’m not sure when these things will be actually put in place. The only downside I think is that I feel under pressure not to use a&e, like I’m wasting resources. To be honest, like most people with mental health issues, the last place they want to go in a crisis is a busy a&e department, but what other option is there? It’s where we are told to go repeatedly when out of hours. I’m hoping that this will provide me with an alternative, but what if I’m incredibly suicidal, will the crisis place not also just tell me to go to a&e? Will this actually work? I guess time will tell, but my personal concern is that I won’t speak up in crisis because I don’t want to use resources that are above and beyond the budget. Will this end up in me just being actively suicidal and in a lot of danger? I guess only time will answer these questions. 

 
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Memories

11 Oct

Ok, this is a bit of a weird post to write and so I’ve no idea how it’ll come out in words, but let me try!

I’ve been thinking a lot about my childhood recently for some reason and with this, the concept of memories. I guess what I want to know is how does a memory happen for you? 

For example, I can be reminded of something that happened when I was younger and it’s like looking at a picture of it. It happened, I know it did but I have no emotion attached to it at all – is this how others recall memories? 

Some timeframes are completely forgotten about, like I don’t remember birthdays but I know after a certain age that they were ok so it’s not just about hiding bad emotions. I don’t connect with good emotions either. I’m not sure I’m explaining this very well. 

Some memories I know happened as I can recall them (and no one else had told me them), but I don’t actually have the full recollection, as in I can’t fill in any surrounding details, I just know it happened (this is usually around bad memories). 

I just assumed that this is how everyone remembers things but is it?

 
 

Personal Payment Budgets for Mental Health

06 Oct

My area has just introduced personal payment budgets within mental health (it already exists for social and health care). This means that basically they look at how much you have cost the system over x amount of time and then allocate you a budget to spend on services that can best support you in order to reduce the overall cost. Sounds ok on paper doesn’t it but I’m part way through the process as the first person in my area and I’m getting a bit stressed by it all.
There are many questions I have but no one within my community mental health team knows the answers because it’s brand new.

I had to submit an expression of interest form which looked at my goals to get better. I took a three point approach:

1) receive psychological help

2) receive support when in crisis

3) receive support around weight loss and health goals to enable me to feel more confident to go out

This was taken to my local Clinical Commissioning Group (CCG) who have said it needs more information before releasing funds. I am therefore meeting with my care coordinator and the woman in charge of the process to try and put it down in more detail.

The questions I have are mainly around what I’m currently receiving. For example, my therapist who I see once a week might not be able to see me anymore because a) I’m supposed to ‘buy in’ a therapist and they aren’t set up that way so it wouldn’t work with them and b) my care coordinator seems to think twice weekly therapy sessions might be a good idea but she only works part time. I honestly don’t think I can go through with building a new relationship with another therapist.

Also, I’d lose the crisis services and have to buy those in as well but who knows when they are going to hit crisis and so how can you buy that in in advance? For me, most of my problems occur out of hours – but they’ll be no access to duty so what then?

I know the aim is to reduce a&e visits and hospital stays, but is there actually anything out there at the moment that provides that kind of support 24/7?

I’m really quite scared about the process and what I’m going to end up with, but in some ways I feel a bit rail roaded into it because I’m the first one and so a lot of attention is on the case.

If anyone has any experience of their own personal payment budget purely for mental health, what have you spent yours on?

 
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Dissociation and PTSD 

02 Sep

The past few days have been very strange and I’m not too sure what to make of them yet and to be honest, they have been extremely worrying. 
It started with a call from duty at my community mental health team (cmht). My therapist had been in touch and had been worried about me in the session. That would be fine but I have no recollection of being at therapy, getting there or coming home. 

Then things become a bit more blurred. Somewhere over the next day, I’d decided that 2 universes existed, the one we are in and another one that for me would be a better place where no trauma had occurred. Cmht called me again yesterday to follow up after the therapy incident and the two universes was brought up in conversation as I felt I’d had an epiphany of sorts. 

In my head, I had to get over to this other universe and then everything would be ok. But that could only happen if I was unconscious in this world. Duty asked me to let them know when I would try to do this crossover and when I asked why, was told so they could make it safer. This all made sense in my head, that I would call and tell someone, I’d make myself unconscious and then be in the other universe – straight forward right??

Well, I’d been thinking it was very simple and had such clarity about what had to happen. What I didn’t envision was 4 policemen and 2 paramedics arriving at my door and looking at me very strangely when I tried to tell them this. I explained I was ok and there was nothing for them to be concerned about but they called the psychiatric liaison team at my local hospital who wanted me to come in and be seen by them. 

After talking to the team at the hospital for well over an hour, they both agreed that I wasn’t safe to go home but if I’d agree to go in to hospital until later that day (it was now 3am), then I could see my psychiatrist and sort it from there. I declined and they said there would have to be a mental health act assessment done then as they didn’t think I was ok. I was adamant that everything was fine and they actually said my matter of factness is what was one of the most worrying signs. I then agreed as I didn’t want an assessment and if I went in on my own, it was literally for a few hours. I got to the ward, took some chlorpromazine and got my head down. 

When I woke up a few hours later, I felt like everything had been a dream and if it wasn’t for the fact I wasn’t in my own bed, I would have assumed it had been. I started to think that maybe I couldn’t cross over to the other universe as I initially thought I could and that maybe there was something not quite right with my thinking. I saw my psychiatrist who said she believes I was in a dissociative state and that something must have triggered it off earlier in the week, but I have no recollection of that period of time so I’ve no idea. She said that my thinking had become a bit ‘off’ but part of me must have known that as I told people about it. 

I’ll be honest, it’s really scared me. I was willing to stop living in this world, thinking there was another one to go to. What if I hadn’t told anyone? What if it happens again and I actually do something to myself believing it to be the answer? I’m having trouble digesting this latest thing, was it really a dissociative state? Will I be ok? 

 
 

SUICIDE 

02 Jul

** TRIGGER WARNING – A LOT OF TALK ABOUT SUICIDE**

I’ve thought long and hard about posting this today. As always, when I’m in turmoil about whether to post something, I often think that it’s exactly these topics that people don’t talk about. And so, here I am – putting my heart out there again in the hope that others don’t feel they are on their own. 

This post is about the grisly topic of suicide. I’ll admit to it now, I’ve told my care coordinator that I have a set date and a plan. She knows roughly the timescale but no one knows the actual date except me (and won’t do either). This then brings about the response from her that she can’t support a plan of suicide and so I’ve said that’s fine, I’ll go alone now. 

I totally understand that her duty of care means she can’t go down that route with me but if I’m honest, I did expect some kind of trying to talk me out of it or similar. Not just the dismissive “it’s your choice”. On the other hand though, what exactly can she do! I guess I’ve caught her between a rock and a hard place and apart from telling me she is there if I want to get back in touch, there is nothing else left in her role. 

So here I find myself, alone with my thoughts (she also withdrew the home treatment team that I’d been seeing for the past ten days or so) and thinking no one is willing to fight for me – even when they are paid to do that. 

I don’t need the ‘think about your friends and family’ talk. I think about them all the time and truly believe that without me, their lives would be better off. As one psychiatrist asked me to do, I asked my family what it would mean if I wasn’t around – only 1 person replied – says it all really doesn’t it? 

Anyway, I don’t know the actual point of this post now I’m writing it, but than I guess to say I’m ok with my decision and that in itself is ok. 

If by some miracle between now and my date, I change my mind, that too is ok. I need to remind myself I won’t be a failure by turning for help if it doesn’t feel right. I’m usually of the mindset that the gauntlet has been set, I’ve tried to garner help from services and so now I HAVE to follow it through or it’d seem that a) I’m weak and b) like it was more attention seeking and trust me it definitely isn’t that. So to remind myself and others that to change your mind is equally as brave is something I definitely need to do!

 
 

Why Bother?

21 May

**TRIGGER WARNING – TALK OF SUICIDAL THOUGHTS**

I have felt my mood dipping for the past few weeks and I’ve done everything to try and stop it happening as I said there was no way I was going back to the dark place where nothing seems worthwhile. And yet here I am, feeling extremely suicidal and not having a clue what to do next. 

I’ve not seen my care coordinator (cc) for a few weeks now but we have been in white regular phone contact until this week. Last week I asked for some prn (as needed) medication and was given promazine to get me through the weekend with the view to seeing my cc at the beginning of the weekend for support. 

She called me on Tuesday and I told her I was really struggling and that I was feeling like I just wanted to curl up and die. She told me to go away and think about that. That left me feeling pretty crap and very unsupported. After I told her how I was feeling, there was no mention of an appointment in the week. 

I managed to get myself (one way or another) to Thursday evening when I felt very dissociated and unsafe. I called a newish number that is running across the whole of the trust which is a mobile number stationed about 25 miles away. She told me to distract which I’d been doing all week and was at the end of my tether. So a bit later on I called the out of hours (ooh) social worker for my area. He was really good, had worked in the same office as my cc and so knew my history and me. He helped to ground me and said he’d let me cc know I’d called and recommended I be seen face to face with someone the next day. I felt a tiny bit of hope. 

I waited all day Friday to hear from either my cc or if she was busy, duty. Surprise surprise no call came. This just fed in to my thoughts of being worthless and that I shouldn’t be alive. I started planning my death and even tweeted local police to apologise for an officer having to find my body (I knew their twitter account isn’t looked at over the weekend so had no worries about any repurcussions). 

I was really confused and thought I’d try and get help one last time. I called the ooh social worker again and this time she told me to go to a&e. If I didn’t go, she said she’d send the police (I hate being threatened like that), so off I went. This was about midnight. 

As expected for a Friday night, a&e was really busy and mainly full of drunk people which was really triggering for me and I was on the verge of a panic attack. An hour later I was seen by the triage nurse and I told her ‘I want to die’. She took my blood pressure and heart rate, both of which were high and she told me how anxious I looked. I explained it was the waiting room that I struggled to be in. She then told me I had to go back out there and wait to be seen by a doctor (the waiting time was 3 hours) and to be passed medically fit before someone from psych could see me. 

I asked if I could just be seen by psych as I hadn’t anything physically wrong with me and it would be a waste of everyone’s time. She said it was policy and I had to wait. She gave me a drink of water and sent me back to the waiting room. I lasted a whole 5 minutes before telling the receptionist to cancel me and I left. 

Even though just 5 mins earlier I had told a medical professional that I wanted to die, there was no problem with me leaving a&e or no follow up. So here I am today, feeling highly suicidal, frustrated with the whole mental health system and extremely unsupported. 

Who knows if I’ll still be alive by Monday when the office hours of mental health will be back open! 

 
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