The NHS needs to do more to tackle HIV-related stigma, lack of patient knowledge on the use of their personal data, and breaches of confidentiality. These are key findings from a major new survey of the knowledge and views of people living with HIV.
NAT surveyed 245 people living with HIV about their experiences of disclosing their HIV status to healthcare staff and also asked them what they knew about how their medical records were handled and who had access to them.
A stigmatising NHS
40% of respondents said they had been treated differently or badly within the NHS because of their HIV positive status. Examples included asking people how they got HIV, blaming them for having HIV, refusal or delay in operating or providing treatment, inappropriate discussions around lifestyle, and being made to feel ‘inferior’ in some way. Such experiences were invariably not within the HIV clinic but in other parts of the NHS.
Almost a quarter (22%) said they had experiences of breaches of confidentiality by healthcare staff. This often involved comments about the patient’s HIV status in a public or semi-public space or personal records being visible to others. However, only one in five of this group made a formal complaint. This underlines how hard it is for people to complain about their care, especially when their health condition is stigmatised.
“When I gave birth to my second son … nurses and carers stood in the corridor talking about my [HIV] status. Anyone passing could have heard them, as I managed to hear what they said.” Survey respondent
Support for current data sharing rules – “but explain them to us!”
There was widespread understanding amongst people living with HIV of the need for healthcare workers who are giving them care to know about their HIV positive status.
But there was far less awareness of how in practice this happens. Half of respondents did not know whether or not their HIV clinic records were kept separately from the wider records of the hospital trust. Similarly, in relation to the important concept of ‘implied consent’ for the sharing of personal information with other healthcare staff, 46% were unaware of this concept and a further 15% were unsure about it.
When explained, most respondents seemed content with current confidentiality procedures – but there was a need for better information on these issues. 54% had never received any written information on NHS confidentiality procedures and 46% had never had a conversation about it. For those who had received written or verbal information, 49% and 43% respectively said it did not answer their questions. There is an urgent need for clear information on how the personal medical information of people with HIV is shared and protected in the NHS – NAT will be developing a resource for this purpose.
The one widespread concern in current confidentiality rules was the sharing of personal confidential information with NHS administrative staff – there was a call for greater differentiation and control as to who has access.
Deborah Jack, Chief Executive of NAT, said, “Most people with HIV are willing to trust the NHS on confidentiality – but the NHS now needs to show that such trust is earned and well-placed. Explain to your patients how their personal data is used and shared; end casual, careless breaches of confidentiality which can cause havoc in people’s lives; above all else, the NHS has to become a zero tolerance zone for HIV stigma – instead of what it is now, the place where people with HIV most frequently report such prejudice.”