Guardian Part II: Where the Hell is my Confidentiality??

Well, it happened again.  Now it's the nurse who is supposed to come and do my in-home assessment.  Apparently they had cancelations and she called to see if she could come today, a week early. 
This wouldn't have been a huge problem itself but when I didn't answer my phone she immediately called my parents house and talked   at length about my medical conditions and what services I had requested to my father who is not even listed as an emergency contact.  Not to mention that this was not an emergency.

I am so upset.  The thing is this woman has no idea why I am so angry and hurt by this.  I tried to explain that the whole reason for requesting her services was to gain back some independence and that running behind my back to my parents every time I don't answer my phone is not aiding that purpose.

Comments

[Susan]

I've thought about this - uh - situation and still come to the same conclusion: Your parents must tell those who try to 'deal' with you through them that they cannot speak on your behalf - that they must contact you directly.

I know, I know - easier said than done - parents being what they are - invested in your well-being and all that. Beg/plead with them to practice their lines - stick it above the telephone...whatever it takes.

Best of wishes from the State of Minnesota in the USA!

[The Goldfish]

As Charles mentions, in the UK this would be against the law (under the Human Rights Act). My next of kin wouldn't be able to get information about me in any circumsatnces, unless I was unconscious, or unless I gave absolutely explicit permission - or if they had some sort of power of attorney (which I would have had to consent to).

I wonder if this link is of any use to you?

http://www.hhs.gov/ocr/hipaa/

[Paco Steinway]

Try the Client Assistance Program (CAP). It's been my experience that they'e anxious to resolve such issues. And a gimp who's considered a seventh class citizen taking the initiative to contact a government agency strikes fear and bewilderment into mouth-breathing idiots.

[S]

Me again; for all its many faults, the social care in this country allows us a budget to purchase our own 'care'. Direct Payments - OK, its means tested, and its not easy advertising for staff, interviewing, training, sacking, shouting at; what the f... are you doing now .... but it is better by far than agencies and the 'carers' who don't care.
Good luck, so glad you do have someone coming in to help ... just don't take any shit, as if you would !

[Timmargh]

That's bad. That's *really* bad!

Go kick some ass, GM!

[Gimpy Mumpy]

CWD Answering Service! Brilliant Sally!! :)
I've been upset all day about this. I am going to take the remainder of the weekend to cool down a bit and then I will make some phone calls on Monday. I did get a piece of good news though that the agency handling the application and nursing assessment are NOT the agency that will ultimately be providing the in-home care. Also my medical conditions automatically guarantee at least someone to come in 3 times a week for 2 hrs a visit which will be a great relief. Of course the name of the agency bothered me a bit since it's "Elder" something care and I'm 32 yrs old..........oh well. :)

[Sally]

I am as horrified as the other commentators at the professionals riding rough shod over your arrangement of your life. But one needs energy to complain. And back up for days when we can't answer the phone. Maybe a Crip's answerphone service, manned by service user's, (when they can !) who WILL respect our wishes, to deal with those who don't
CWD Answering Service ...

[charlesdawson]

Mumpy, I don't know what the situation is in the US but in the UK this is serious professional misconduct whoever the nurse talked to without your permission. Nor do you have to justify withholding such permission, to anyone.

How can you ever trust her again?

If it were me I would make an immediate formal complaint to her managers stating that you want to take it further as a professional disciplinary matter.

[Penny]

Grrrrrrrr! This must be a breach of the nurse's professional ethics, and of privacy agreements you signed along the way. Does the assessing agency have any protocol in place for filing complaints about such matters? If it's happening to you, it's happening to others, and it's unacceptable.