Confidentiality is a very important concept for us, people living with HIV. But what do we know about how the NHS deals with it? How are our records kept,? How are they shared among the different doctors that we see?
Lat night at Positively UK I facilitated a consultation with people living with HIV to inform them on how our records are handled in the NHS and to find out their experiences, opinion sand views regard it. The consultation was organised in collaboration with the National AIDS Trust who are going to write a report about it.
NAT would like to hear about the experiences of as many people living with HIV as possible, so if you are interested in contributing to this discussion you can do it through this survey.
Below are the slides we used to spark our discussion. Please note that all the statements in the ‘Did you know?‘ slides are true.
The consultation was attended by a real good mix of people. I was delighted that they had an opportunity to be heard on such an important issue, as most of the participants would probably never answer an online survey. English is not their first language, and many do not even have easy access a computer.
Overall, as a group, we felt that it is important that people who care for us, our doctors and nurses, share information easily so that we can have the best care. We weren’t too happy about secretarial and administration staff having access to our files. Most of us had no clear idea of how information sharing happens and none of our doctors took time to explain it to us. Hopefully an outcome of this consultation will be a clear information resource about how our information is handled.
Overall all participants really enjoyed the event and the insight they gained. Hopefully we will have more.
Once again, I would like to thank NAT for collaborating with Positively UK in organizing this event . I look forward reading the report.