I Can't Possibly Have This

[Sandstone]

On 6 April my T put in train a request for me to get funding for a residential stay while processing trauma. Nothing at all has happened about this. but my Care Co-ordiantor, who controls my Personal Budget, has not contacted me. Each week T asks if I've heard from her, each week I say no. I have phoned the County Council who administer the Budget to ask if I can amend it myself, but I can't.

I'm getting convinced again that there is nothing actually wrong with me and that is why she isn't phoning. Her boss is also supposed to call me weekly to check that I'm stable after therapy, but she doesn't. She called the first week, was on leave the second. The third and fourth week she left a message saying she was sorry to have missed me and would call back later. On neither occasion did she call back. I know I didn't answer the phone, but one time I was hoovering and didn't hear it,the second I have no idea. For the following five weeks she just hasn't called.

If two professionals don't think it is worth bothering with me, they must be sure I'm a time waster. I've always doubted there is enough to justify my diagnosis. I was thinking last night about what I'd say to T re "abuse". It fits into three neat little sentences., and one of them is just dating when it stopped. It's all so trivial.

T says she believes my diagnosis, but maybe she is just being supportive. T before last also said she believed it, but she was doing the whole re-parenting thing and would always take my side in anything. Last, brief T said she didn't think I had PTSD, and my GP has said both that I'm atypical and lots of people get better on their own anyway, and that she doesn't think I can safely process trauma while living at home, so is even more confusing.

I get stuck on not meeting the re-experiencing criterion. I've only ever had one true flashback.

 

[anonymous]

Do you have emotional flashbacks?

 

[Sandstone]

Don't believe in them. I have times when I behave badly because i'm upset, but I'm learning to recognise and reduce them

 

[Intrepid]

Still, you don't deserve to be ignored. If they feel your diagnosis is unfounded they should call and let you know. It's not right to be kept in the dark.

 

[Neverthesame]

I can say one thing for sure. Yup, you are correct. It is all in your head. My ptsd is all in my head. (I am being facetious ;))

Sorry, it's difficult not to sound like an ass whenever I am on the topic of the good ol' NHS. Just brings out the worst in me. Mind you, competence of care seems to be out of the abilities of those lot.

My suggestion to you firstly, look at what is supposed to be happening. Then what are you needing. Do you want, or need your care co-ordinators supervisor to phone you? If not then, sod it. Though I doubt she is being deliberately absent. Too much red tape.

As for your T if she says she believes you, then she most likely does. Yes, to be supportive. But because stringing you along on a lie, is not supportive. Actually that would probably even be a breach of her code of practice. She would likely lose her licence telling you one thing and recommending her colleagues act in another way.

With your GP stating that you have some atypical behaviors is just that. You have some atypical behaviour. Not everyone is wired the same. The fact that your GP noticed it, is more a testament that they are paying attention. A sign that you have at least a competent GP.

Be kind to yourself. You know what you went through. Remember that the stupid f'ing NHS is supposed to work for you. And breathe.

 

[Sandstone]

Yes, I need her to call, I can't get the funding without her. I'm not sure she will act even if she does call, and meanwhile my 16 weeks of agreed therapy are running out. T is trying to get them extended, but if there is no budget to pay for residential care she won't do the processing stage.

So maybe the Care Co-ordinator is blocking this by being passive because she doesn't believe I have anything wrong with me. Like the time I reported behaving dangerously the day before and a Care Co-ordinator told me "Well, you're talking perfectly coherently now". or when the Crisis Team visitor told me they were busy with people who were really sick.

They are experienced professionals, and it seems so much more likely that I'm making a fuss.

 

[BlueOrange]

The explanation that seems most likely to me is that these people are very busy, and haven't followed up because they are forgetful and fallible. If they are overworked (and that's the impression I have of the NHS) then they might tell themselves that you don't really need help, but that's an excuse, it doesn't match the other things you've told us.

The care coordinator and the corresponding manager are not qualified to assess your condition, and so I don't believe for a moment that they have chosen not to act because they've made a professional assessment. It's possible that they have made an unprofessional assessment that you don't need help - if that's the case, then it's very unprofessional. Your therapist and GP are trained in assessing medical conditions, and they both believe that you need care in a residential facility.

From other conversations, I gather that you have issues with having been neglected, and with receiving help. It might be therapeutic for you to insist on getting help, and to take more of the initiative when it comes to getting the help that you need. They haven't been calling you - perhaps you could call them (or call them more often). Generally speaking, if you find the right forms and fill them in correctly, you can force a bureaucracy into action.

 

[Purplemunchkin]

They are experienced professionals, and it seems so much more likely that I'm making a fuss.

Er, no. I can't tell you the number of times hubby has been let down by his care co-ordinator.

And the 'crisis team', well they are referred to as the 'cause-a-crisis' team around here. I couldn't tell you a single positive thing about them.

Since his diagnosis in February 2013 he has seen a psychiatrist seven times, four of which were when he was hospitalised (twice for two weeks each time).

He had 20 sessions of CBT, then had to wait ten months for a further six sessions. Since January he has been in group therapy (when it's not cancelled without notice).

The only consistent medical support he has received has been from his GP. If you have a good relationship with your GP, use it. Can you book a double/triple appointment with them?

The NHS is flawed and underfunded, but for physical illness I have confidence in them. For mental illness, I don't. But we can't afford private therapy for hubby.

You really need to fight for what you need as it does seem that they respond better if you/your GP hassle them.

Don't give up, and good luck!

 

[Neverthesame]

Ok then. I would say that whoever told you that from a crisis team, should be sacked. To be honest.

I am not totally familiar with the role of the care co-ordinator. Is this person in the role of diagnosing or patient care in a medical standpoint? Or are they more clerical or financier?

If this person is not in the specific role of dealing with assessing your mental state as it applies to your course of treatment. Then this person really needs to (pardon my language) shut the f*ck up and do their damn job. I would imagine that if your only interaction with this person, is by telephone, then they are not practicing medicine.

That being said, if time is running out. Then as unpleasant as it will be. I recommend you start shoving back. Or else you may find yourself swept under the proverbial rug.

 

[Sandstone]

A Care Co-ordinator used to be someone who was in regular contact with you, usually visiting weekly or fortnightly. That visit is mainly medical, to assess how you are. They are the person you contact for any needs you have, and who implement whatever the Consultant in charge has decided. Most often they are CPNs (Community Psychiatric Nurses). My first two were CPNs. The first got moved after a couple of months when one of the restructures happened. The next was good and was around for several month before he went off sick with stress caused by the next reorganisation. He kept trying to come back to work, but fell apart each time. Then and afterwards there was a long gap when I was supposed to call the duty worker, but they tend not to respond to messages. Then I got a temporary CC who was vague and not around for long enough for me even to find out what her background was. The current one is a Social Worker, but I'm not even sure she is my CC any more as all the Social Workers were taken back the Council who had lost faith in the Mental Health Trust. So I don't know if she can be co-ordinating for an organisation she no longer works for.

The GP has also given up - she said she would chase them , but didn't expect it to have any effect as they were no longer sure who their contact was, after the latest re-structure.

I gather that you have issues with having been neglected, and with receiving help. It might be therapeutic for you to insist on getting help, and to take more of the initiative when it comes to getting the help that you need.

I have no idea how many times I, my husband and daughter, my advocate have tried to insist. I have told everyone literally, every CC, four Consultant Pschs and two juniors, and three service managers that every time I get fobbed off and ignored it confirms to me that I am worthless. I have put in a formal complaint containing the sentences :
"It may be worth commenting that the recent report by CQC and action by Monitor have been beneficial for me, because they provide external recognition that it is not "all my fault". Each unexpected withdrawal of services had seemed like confirmation that I was not worth treating or even acknowledging."

It just seems so much more likely that is is my fault because I'm using a purported illness to get undeserved attention. and that every time I make a fuss they hate me more.

 

[Friday]

Deciding you're fine... Despite all evidence to the contrary is a survival technique. It's what keeps people going instead simply laying down in the snow to die.

It's also an unhelpful pain in the ass when needing help. Especially since it seems to crop up the hardest when we're at our absolute worst. Which makes sense, survival-wise. Right? But very important to remember that :). Seriously. I've actually learned to take "I'm fine!" as a symptom-guide. If I'm "fine"? Oh shit. It's bad, isn't it? Like really, really bad.

A kissing-cousin with denial... Look at that huge list of things you have had to negate or in somehow alter in order to make even the possibility that you're fine seem reasonable:

- Every professional is wrong (except the 2 wishy-washy ones who say maybe, and then you're deciding on the content of their maybe).
- Your loved ones and most trusted advisors are wrong.
- You yourself you assign a whole bunch of motives to that are completely contradictory to both your character and your actions, as well as occasionally to each other.
- Even though everyone is wrong, that they also hate you for making a fuss
- Even though everyone is wrong, anyone who might be right must have ulterior motives
- Bureaucracy is supposed to be easy or make sense... Also, that it's not is somehow your fault.

Even if everything else is somehow arguable in your mind... When you doubt yourself? Look at that last one. Whole satires are written about it, from Alice in Wonderland and Guillver's Travels to Monty Python and Hitchhikers Guide to the Galaxy. The Vogons are not in the right, while everyone else you know & trust (including yourself) wrong. Promise.

 

[ms spock]

So maybe the Care Co-ordinator is blocking this by being passive because she doesn't believe I have anything wrong with me.

That is a distorted thought cognition - you are mind reading, I do mind reading as well. It feels real but it is not based in reality. The Care-Co-rdinator could be incompetent, or has someone in their family dying, is sick themselves or has burnt out and is just going through the motions. You just don't know why people do and do not do things.