Well the meeting has been and gone and I have a reasonable care package until September, when it will be reviewed again. I will post more about the meeting in a future post but the main thing is they agreed to me having a registered nurse, for now.
This post is about privacy and AN’s (my Nursing agency) seeming lack of rules on confidentiality and lack of understanding of the law.
The problem started when I asked one of my carers, Mr.P, to plug in my webcam so I could record the audio of a meeting with my community nurse that morning, I can’t write to take notes so this made perfect sense, I of course checked that it was legal to record a meeting in my own home and according to section 36 of the Data Protection Act 1988 it is.
The problem first became apparent when we received a phone call about our next meeting with the community nurse, she asked if the telephone call was being recorded, it wasn’t, although I did check the OFCOM website afterwards and found that should I want to, in my own home it is legal, the community nurse then said that she had been told I was intending to record the upcoming meeting, I had no intention of recording that meeting and hadn’t said I was going to to anyone.
The idea of me recording her obviously worried the community nurse, although I have no idea why, one of the reasons she was unhappy was probably because I had not told her that I was recording the previous meeting, I had no legal obligation to do so, but I would of notified her if it had not been a last minute decision, but in this circumstance she would not have had chance to check it was legal and may have even cancelled the meeting, which could have adversely affected my care as it was an important meeting.
Now after the phone call it was pretty obvious that Mr.P had told somebody about the webcam, I had explained at the time he set up the webcam for me that it was legal and he expressed no concerns. I would have expected him to tell me of any issues he had, he never had any problems sharing his opinions in the past and had been quite forthright on occasion.
So I contacted AN saying that I was concerned that Mr.P had passed on this information, which is unrelated to my care, and that I felt this was a breach of privacy, the manager, Ms.S.D contacted me saying she would look into it. A short time later I contacted CHC and after a few emails was told that it was AN who passed this information on to them, they had obviously then passed this information on to the community nurse, of course Ms.S.D had not told me it was her that had passed the information on so we arranged a meeting to discuss the issue.
Now I didn’t expect the meeting to be particularly pleasant but I did not expect some of the things Ms.S.D said, firstly we discussed the actual recording, she said she had asked CHC legal and they had told her that I wasn’t allowed to record in my own home without telling the person first, I argued that actually telling the person was voluntary and that I had asked the ICO who should know more about this than CHC, she would not change her position and stated that four carers had expressed concerns about me using my webcam, although I had stated I would not record carers to both NA and the carers themselves, again none of my carers had mentioned any concerns over the webcam to me. She then asked me how she was supposed to know that I wouldn’t post videos of her carers on YouTube, I pointed out that doing so would be illegal so I obviously wouldn’t do that, she didn’t seem to accept that either.
I then brought up my main concern, which was her passing on information to CHC which was unrelated to my care and not consulting me first, her answer shocked me somewhat, she stated that she was able to pass on any information, care related or not, to anyone involved in my care including CHC, the community nurse and my GP, this seemed very wrong to me so I pushed the issue by asking if technically CHC was her client and not me, and she said yes. She then tried to infer that she was doing me a favour by talking to me and that had CHC got involved it would be more official and would not be as good for me, she even said that CHC would have brought PALS with them as though that would be bad for me, why CHC would bring PALS is beyond me as they are a body for helping patients not bodies like CHC, eventually Ms.S.D decided that we were not going to agree and that we should end that part of the meeting and move on to other matters.
I am currently following up on the issue and will hopefully have more information on whether or not service users, and their families, have any expectation of privacy when receiving care in their own home in a future post.