Mental Health Trust & Confidentiallity

[YellahBadwella]

NC for this, sorry, it's too personal to share under my own username.

I've been previously diagnosed with Dissociative Disorder (not any specific one, just a general descriptor). It's been fairly rough and has got to the stage at times where doctors don't know what it is so say I am lying. Basically I have been called a liar a lot. I have been accused of drugs taking, my ex partner was accused of DV, I have been told I will have children removed if I have them etc. This is various one hand off comments over the years, and has been seeded amongst some exceptional medical care.

Got a place at a well known mental health trust as an outpatient. Specifically said did not want letters sent home (living in shared house, as a student, and was living as a hall rep as well). Third time today they have sent me a letter to my address - only this time it includes a copy of some clinical notes. The letter was forwarded to me whilst I was on holiday. The letter arrived open.

They've given me a new diagnosis (had no idea, still do not understand what it is... it's called Non-psychotic disorder of overvalued ideas. i have no idea what this means but am now seriously anxious.

So first issue is no one has explained any of this to me, it is not explained in the clinic note thing or the letter (no mention of it).

Second issue is that the clinic letters actually state "no correspondance to home address". As this is the third time, and now it actually included medical information AIBU to make a formal complaint?

What do other think? Would you have expected a new diagnosis to be explained and was it wrong for them to send out letter when they knew (and had it noted) that this was not to happen?

There was also this crisis care thing in which was horrible to read - felt a bit like twisted words (this was never discussed with me either, even in sessions, but what I am going to do is try to use this as a framework and come up with my own and resend that back and say I prefer this one and what do you think - thereby opening discussion rather than getting angry with it...)

Obviously it's Saturday so can't talk to anyone there or at my GP.

Thanks

[YellahBadwella]

Ok thank you - that's interesting on cluster 6 (I had tried googling cluster 6 and dissociative disorder but nothing was coming up with them both listed in the same category).

I've done a better version of my crisis plan (with input I've had from GP that is much more "me".) I am going to send this to GP tomorrow evening, once i've slept on it and had time to add things.

I've also found out the letter was sent from shared house, to University department (central pigeon holes), to where I am now - so I am slightly panicky about where it was opened exactly. I am trying to keep a cool head.

I found the guidance for the trust on sending things by mail and none of it was followed for sending clinical information (aside from the fact they totally ignored my request not to send me any information).

Urgh. I am a bit worried it's all go to blow up into a huge thing, but also worried that I am not happy OK with this situation and feel like I need to say something and have it dealt with properly or I will not feel comfortable there as a patient

[ThatsNotMyToddler]

I was going to say the same as user14etc. That may well not be a new diagnosis as such but just a new classification of it. When I was a psych SHO we had to code all diagnoses on letter and there was often some variation according to who did it and which symptoms they focussed on. Not good enough that you are worried by it, and it should really have been explained, but I wouldn't worry too much until you've spoken to someone. It's relatively recent that patients have received copies of correspondence and this is one of the problems of that.

The confidentiality bit is a cock-up and you should definitely complain. Not good enough.

[user1471541923]

It may not be a new diagnosis, that is cluster 6 of the psychiatric groups that will likely include your original diagnosis... Cluster 6 non psychotic disorder of overvalued ideas also includes eating disorder, depression, ocd PTSD etc.

[allowlsthinkalot]

Firstly, non-psychotic means you are not delusional or out of touch with reality. "Overvalued ideas" is medicalised jargon which means you have some beliefs that are not real that affect your life greatly, but they are not psychotic delusions or hallucinations. An example of overvalued ideas would be someone with ocd who fears harm will come to their family if they don't carry out a ritual. They may know rationally that it's not true but the thought is so intrusive that they can't help acting accordingly.

You're right that this should have been explained to you and it is poor practice. The confidentiality issue definitely warrants a complaint, it is a serious breach.

I hope you can move forward with your treatment without this affecting it negatively.

[ElizabethHoney]

Really feel for you on this.

Yes, a diagnosis should be fully explained. But it's pretty shocking how often this doesn't happen.

And yes,they should be rigidly adhering to your request about contact. Again, not the first time I've heard a report like yours, but that doesn't make it any less crap.

Definitely worth making a complaint about both of those things. And if you don't agree with the diagnosis - as in, you're not experiencing the symptoms they say you are - object, and keep objecting. Don't let the wrong diagnosis stick - long term it won't help you recover.

[BoomBoomsCousin]

Sorry, I meant not critically urgent (typing on mobile = many mistakes). If it was urgent they would presumably have called and asked you to contact them.

Best of luck with it Yellah. I hope you get the support you need without too much more frustration or mess ups.

[YellahBadwella]

BoomBoomsCousin Thank you for the reply.

To be honest, I can't see what is time critical or why I am receiving post and not e-mail - they emailed me last week and none of this stuff was in it - I replied, but received no response. They had sent out the letter prior to the e-mail.

The deal was I could have six months away from therapy and that will end in January. During this time things have actually been going quite well minus a minor hiccough here and there (like the colleague thing). Things are mostly good and I am trying to view this as a blip, but at the same time, I am quite frustrated they've ignored me again with the request to not send things by post and that this time it does contain really confidential stuff (sexual exploitation is also mentioned for instance).

[BoomBoomsCousin]

The confidentiality issue is a serious breach on their part and you really should raise a compliant to try and get them to sort out their processes and make sure it doesn't happen to again, to you or others.

I'm sorry I have no advice on the medical side. I don't know what's effective or expected, though I empathize about being given a diagnosis by latter with no explanation - that can be really scary. I can only suggest trying not to think about it until Monday when you can talk to someone who can help. Presumably it is critically urgent if they're doing it all be post?

[YellahBadwella]

Would just have never needed Crisis care - I score zero on the self harm scale and when I have been very bad before I've always managed to sit, have a cup of tea, talk to someone and see my GP.

Generally very focused on all the positive in my life (overwhelming amount of awesomeness) and wanted the counselling to focus on that moving forwards and ways to come when this unintentionally crop up (like colleague disclosing abuse sent me a bit off kilter a few weeks ago).