So today has been mildly hellish.
I am in high levels of pain and asthenia. I forced myself to do my gym workout but had to be very careful of form. Slightest deviation from perfect form resulted in massive pain. I got some endorphin help from it but not much.
After that was the appointment with myself, Clarice and Clarices manager (Jack, I suppose) to discuss ongoing issues like are they going to offer me any treatment, or a firm diagnosis, or in fact anything. Recall I was referred to the MH team BEFORE my life fell apart, so just dealing with the adjustment disorder is not dealing with the issue.
You recall also that due to her being an unethical untrustworthy snidearse I sent a letter some weeks ago refusing my psych permission to treat. This means I do not want her having access to my notes.
Therein lies the rub. The one thing they keep saying is the cannot guarantee that the Psych will not have access as they work as a team. I point out this is a gross breach of confidentiality and ethics and means that I cannot access their service and am left totally without care. They say well thats the system. I point out this is an ethical breach, a breach of their statutory duty, a breach of good practice and contrary to recent high court rulings over patient autonomy. They say, well she is a good doctor. I point out she may be good but she is unethical and IS NOT TREATING ME and so showing her my notes is a gross breach of confidentiality. they say but we work as a team...and round we go.
It has been 4 weeks or more since I had someone to talk to about any aspect of my life. I have no social support network IRL. No one to interpret the actions of people for me. I have no treatment. I am not sleeping well at all, late sleeping, early waking. No pills, Well I have some opiates but having weaned self off those not keen on relying again. Too much alcohol is too much.
A lot of the conversation today kept veering towards them saying they wanted to discharge me. I pointed out this was a gross dereliction of a duty of care.
They are, for the second time, going away to consult and getting back to me in a couple of weeks. meanwhile no treatment. I have their numbers n case I need them...they do not realise the barrier here. I would literally rather die than be forced to share confidences in these circumstances.
There are areas they are looking into motion in- pathways to firm diagnosis of aspergers for example. but it all comes back down to the same thing- they cannot ask Dr Snidearse to leave the room when discussing me. Why is beyond me, but they feel unable to do this.
What do I want? well vengeance would be nice. But two things- I want some way out of the hell I am in short term. I also want some reason to hope that life can be better long term. that there is some way for an aspie to be happy. Because I am not, and have not been for a very long time. i don't want to continue like this for another 35 years. Just thanks but no thanks.
UPDATE
emailed the relevant PALS. they say they are going to enquire as to why exactly my suggestions were not put into place immediately. watch this space
RantingScienceZebra The rantings of a bitter, twisted, sometimes crippled and rather mad scientist
Inky I believe it may be possible to ask to be transferred to a neighbouring CMHT. Obviously you'd have further to travel, but I think this may be possible within the ghastly wall of bureaucracy. Have you spoken to Healthwatch? Or PALS? Get people on your side to help advocate.
ReplyDeleteSorry I am not a Real Life supporter. Can only do my small best at a distance! Would send chocolate (Percy knows this is my universal panacea) but would melt ATM. Love Cathy xxxx
If you cannot be treated elsewhere, is there any form of meditation that could resolve this? Can you compromise at all?
ReplyDelete"I point out she may be good but she is unethical and IS NOT TREATING ME and so showing her my notes is a gross breach of confidentiality."
Inky I am really sorry, but I have forgotten what she did. Were you ever offered any form of diagnosis or treatment?
Please excuse bipolar muddled brain.
Cathy xxxx
PS for meditation, please read MEDIATION. Pfft.
DeleteWhat she did:
DeleteShe suggested a diagnosis of narcissistic personality disorder. I challenged this , explaining how upsetting it was and offering evidence for the contrary. She retreated, saying it was just an idea and not important. At that meeting we agreed two actions for her 1) write to gp to request more z - drugs, whicch were only medication that helped thus farr. 2) write with diagnosis of ASD with PD but word narcissistic not to appear. She did opposite. No z drug request and wrote in letter "think its narcissistic but patient gets upset about it" which is a snide way of getting diagnosis on books without stating it. Standard psychiatrist punishment tactics. So I rock up to GP and ask for z drugs, setting off his drug seeking alarms and find her letter (which boils down to calling me a pathological liar if you understand narcissistic) undermining my relationship with him, which has taken years to put in place.
ICD-10 doesn't even recognise NPD as a separate entity; bleedin' Merkinanians with their DSM stuff do. ICD-10 classification is what is used here.
DeleteI have a problem with linking ASD and PD, as by definition personality does not develop "normally" in ASD. The lack of empathy etc mentioned in definitions of NPD would apply to ASD...
It should also be recalled that "diagnoses" of PD have been known to be, errrrrrr, used as a shoulder shruggy, "Oh, they aren't actually treatable" means of, errrrrr, disposal of patients...
Have I ever mentioned I am not at all impressed with the idea of PD as a clinical entity?
And I would love to know how much actually checking of personality factors Dr Snidearse did: MACI? Doubt it...Without some thorough, sensible assessment (which takes time when done by someone competent) there is much arse talking happening.
nothing other than her masterly synthesis of staff reports from the 8 psws i spent an hour with each. free form talk, no conversation.
Deletebasically incompetent assessment
OK, several things:
ReplyDeleteIf they use an electronic notes system (like the RIO one we used) then Dr Snidearse has access to the system. However, all access is monitored (or can be), so she can be requested not to look at your notes and this can be monitored. Paper notes is a whole other thing.
The working as a "team" argument is bollocks: not every team member needs nor should be involved with every patient. You have correctly made a very specific request, so it is up to them to work with that.
As Cathy says it is entirely possible to transfer your care to another team - we regularly took folk who lived outside catchment because there were reasons to do so.
There is at least one pathway to assessment for possible Asperger's as per one of the links Cathy posted on my behalf. As an adult you will be better off with a more specialist service than a standard adult CMHT who, IME, know naff all useful about autism.
Also, think carefully about what it actually is you want from a diagnosis (you may recall some of my comments about the usefulness or otherwise of labels). To my way of thinking the main benefits are a possible understanding of how you (don't always) relate to other people and view the world, access to more specialist advice and help to deal with that, equality/disability legislation will firmly be on your side (ASD is recognised in both statute and case law as being covered by such legislation). Please feel free to bounce ideas off me if you need to do so.
theres a practical and a non practical aim. firstly a firm diagnosis is useful in EA for interviews- many interviews at my level include a "socialise with staff and be marked on it" component which I uniformly fail. for some reason. this would give an out.
Deletenon practically I want to find out if it is possible to live with ASD and be happy. evidence is that my method does not work. More years of living like this not acceptable. unlikely that psych/guidance for aspies holds any hope but have sunk so far its the last thing reaining. And if anyone sayss mindfulness or cbt here they will be getting a big parcel of slap in the post
*Cough* No I won't mention either. They are neither of them universal panaceas, and they should never have been marketed as such.
DeleteIt seems to me that your two aims are eminently sensible, and it should not be beyond the wit of the NHS to support you in these.
Cathy
My views on mindfulness and CBT have been aired elsewhere, as you will recall.
ReplyDeleteIt is possible to live reasonably successfully with ASD, if the experiences of a number of folk I know are anything to go by.
A phrase to remember is "reasonable adjustment", which could be taken to include "don't make the horse talk to people"...
I found this - http://www.jkp.com/uk/autism-discrimination-and-the-law.html - book very helpful. Indeed I loaned my copy to one of my bairns and her family so they could beat an employer over the head with it, which they duly did.
I can't help imaging a literal 'beating; with the book. I hope it was a long and substantial volume!
DeleteMurmur has given me hope that it is worthwhile, inky, you persisting in seeking the care you need. Because the gains for you could be sufficient to make life tolerable (again).
All best wishes
Cathy