Thursday, 13 March 2014

Gaps in the Service (NHS)

In the last depressing post, I told you about how things went pear shaped last year. So what happened after it all went wrong? November was pretty awful. December was really bad but less 'risky' and January to March have just been dark; not risky, but dark.

In November (I think), there was one miserable day that started with dissociated cutting (it happened out of the blue while I was loading the dishwasher); then a child part calling T on the phone to tell her that she was scared which then resulted in me going down to see her at her office and her having to try to make arrangements for my safety. Because T was concerned about the risk of me ending my life she tried to refer me to the 'Home Treatment Team'. I was having suicidal thoughts and couldn't promise her I would be safe, you see. The Home Treatment Team assess people to see if they need to go into hospital or if they can be supported to stay at home with daily visits etc. I agreed to the referral, partly because I knew I didn't have a choice and partly because I was also scared for myself and felt if I could just be locked in a room I couldn't do too much until this passed. She rang them to refer and they basically told her they wouldn't accept the referral because I didn't have 'a serious mental illness'.

In these parts there is this thing about mental illness being different from conditions like personality disorders. The Home Treatment Team don't accept people with personality disorders because they don't see that as mental illness. I'm not really sure of the details of this so correct me if I'm wrong, but it might be something to do with absence of psychosis that they reject you for.  I don't have a personality disorder, to my knowledge (and I have checked with T a few timesabout this). I have a dissociative disorder. Because this is seen as something that is caused by experiences, it's not seen as an illness ie it's an adaptive coping mechanism or a neurosis. I agree, my problems aren't going to be all sorted out by medication; my problems are more likely to be sorted out by someone helping me to work through the trauma. BUT, if I am suicidal I am still in need of protection and probably medication to see me through that time and prevent me from ending my life. Also, who's to say that the two are mutually exclusive? It may be that I have Dissociative Identity Disorder but also have a depressive episode that is serious. And surely if one of my alters is trying to end my life, my thoughts are in some way disordered at that time? It just seems like a bunch of words and definititions that have been made up, probably for a good reason, but a side effect is an issue where real people who need help don't get it.

The problem is, if someone who doesn't have a serious mental illness diagnosis is suicidal then what is to be done for them; because to my knowledge, hospital admissions have to go through the Home Treatment Team? (I would personally question how someone can be suicidal and not mentally ill: again, it's all just words isn't it?) What are these people to do? Well, T was advised to refer me to psychiatry and the Self Harm Team. These would have been wonderful ideas, perhaps for me on any day over the previous few months where I was going downhill but in my crisis at that moment, waiting three months for an appointment with a psychiatrist wasn't really very helpful. Or as T put it: "there is a gap in the service".

So because I fell under the category of not mentally ill, in the Home Treatment Team's opionion I was refused the only route of access to safety and protection the local Health Trust had to offer. It seems like, if you don't have this magical diagnosis then you can f**k off and die somewhere else. Having a diagnosis of DID is just a slap in the face from all angles. My doctor won't acknowledge it: ask my GP what my record says and she will say I have chronic depression, not DID, not even a dissociative disorder, because her computer doesn't have a code for that. And so she will not talk of, or acknowledge anything but depression with me. Yet ask the Home Treatment Team to help and they won't acknowledge me because I have a dissociative disorder. More words and definitions that forget about human lives. What about individual human beings who are real people? If the people in that team were dealing with a member of their own family who was suicidal, would they be refusing them an assessment? I very much doubt it. They'd be doing everything they possibly could to make sure that person was safe.

If my understanding of any of this is wrong, I DO NOT apologise. Because, I am not stupid. If I can't understand how the services work then there is something wrong with how the services are communicating with service users. All I know is, I needed help and it was refused. I wonder how many people have been in the same situation as I was in and did not live to complain about it in a blog post? Who speaks up for those people? A gap in a service where it involves people who are in danger of death is not going to be highlighted by those who die by suicide. They can't speak up and tell the world that they were refused help.

For me, at that moment, on that day, I wasn't surprised. I knew enough of how that team works. In fact, if I'd been more my usual self I would have thought to tell T not to bother calling them as I would have known how it would go. I was actually relieved not to be taken on for assessment because the last thing I wanted was interference that wasn't simply just locking me up so I couldn't hurt myself if I switched to the part that wanted to die. I would have accepted going into hospital for my safety but I did not need someone coming round my house daily to check I was still alive. My issue at that moment was not that I was planning to end my life, but that another dissociated part was planning to do it and I was afraid I could not control that part. I felt I just needed a place of safety.

So what happened? Adam came to T's office where I was waiting, wishing the ground would swallow me up. I love my T and sympathise that she also could not find support that I needed and probably felt a bit alone at that time too but I could see how the process needed to go. She had a professional responsibility to ensure I had a safety plan; I'd already said I couldn't promise I wasn't going to end my life so she had to act on this. She was denied help as much as I was. So what was she to do? She needed to have it recorded that I had a safety plan; I suppose that's something they have to do. In the end I just had to lie. I had to say I wasn't going to hurt myself, even though I didn't know if I would or not. I'm sure she understood that it wasn't in my gift to make that guarantee but she needed it documented that I had a safety plan. I still feel bad about the fact that I just had to help her tick that box by being dishonest. She'd only recently told me that she admired my honesty (as a quality that I have in general) and there I was clearly just agreeing to something I didn't honestly believe I could stick to if I dissociated into the other part.

We also agreed Adam would look after my medication because I admitted I had been Googling how to take an effective overdose. I felt angry about this; like a child being punished. You know... "If you can't act responsibly 'insert something you own here' will be confiscated until you can". I know my feeling angry is my own issue and that they were just trying to help me. I know it's to do with feeling like people were trying to control me and take away my choices. I'd already discovered from my research that an overdose really isn't the most reliable way to go about ending your life and I knew that if I wanted to hang myself I could always find the means, but the latter was agreed by T, that we couldn't eliminate everything but we wanted to minimise risks. I did not agree to giving Adam my blades and I think T could see that it would make things worse to do so. They are a safety net for me. I'm a bit like Maggie Gyllenhaal in 'The Secretary' when it comes to my precious blade set. Getting rid of them completely has never been possible.

I felt SO ashamed that Adam was there having to be a part of my mess. So, so, so ashamed. I felt defensive inside and exposed and I felt like I was being punished for self harming just as I did when I was a child (more of my own issues when others are trying to help). I just wanted to die. I just sat there, between T and Adam, being asked to make promises I couldn't know I could keep and wishing I could just disappear and not exist anymore.

Well, I'm writing this post so clearly I was not at risk and the Home Treatment Team were right about me anyway weren't they? Or am I just one of the fortunate ones who managed to stay alive despite them? I would like to know if someone is keeping a record of the number of times people seek out help when they feel they are in danger and are refused and what happens to those people. Not one person should end their life after calling out for help or having someone seek help for them and it being refused. If that has ever happened (and I know it has), it is too many times to have happened.

What did I learn from this situation? Unfortunately, it further confirmed to me that if I am in a desperate situation, I can't expect help from my health service. I believe T did everything she could have done for me. She always treats me with respect. I think I have been lucky to be treated by her and I go about expecting the same of everyone else I encounter in the health service and am then constantly horrified when I am treated like an inferior being or a time waster. T always takes me seriously. I can see that she treats everyone as equal, including herself. Not everyone has the same life experience and this affects people in different ways but that doesn't mean they are better or worse. Also her understanding of my predicament in relation to it not being 'me' but another dissociated part was clear. I take that for granted actually. She 'gets it' so well that I forget how weird it probably sounds to other people because it's so normal for me and talking about parts with her feels as normal as talking about anything else. It's not something many people in everyday life would understand when they think of suicide: the idea of dissociation coming into play. They think of someone in a desperate place, full stop. They don't think of someone who feels like they are posessed by another entity who could take over and kill them at any moment, even though they themselves don't wish to end their life in that way. And believe me, I don't wish to.

I have considered suicide in the past; long and hard. That is my nature: I think things through. And I am logical. Although I struggle with feeling like I don't want to be alive at times, I also have the capacity to see that suicide would devastate people who love me and have very negative effects on other people who know me. I also have the capacity to realise that if I can tolerate being alive, there is always a chance that things will get better. And life is tolerable for the most part. Sometimes it feels awful and I feel hopeless and wish I didn't exist but I don't want to hurt other people and if I keep breathing in and out and time goes by, maybe things will change. And sometimes I do laugh or feel the sun's warmth on my neck or listen to a bird chattering in a tree and in those moments, I am alive.


b said...

im sorry things have been so difficult....i can relate. i have did too and was abused as a child as my littles have told me.... we been going to fort refuge for awhile now and its been great support for us maybe you can have a poke around and maybe join us there its did friendly :) x

Candycan said...

Hi b, thanks for your comment. I haven't heard of Fort Refuge but I'll look it up.