Confidentiality

You may sometimes need to talk to a doctor or another healthcare worker about things you’d like kept private. This could include your HIV status, things about sex, or how you’re feeling. You can expect this information to be treated with the strictest confidence.

The general principle is that your personal information must be kept private. One important exception is that relevant information will normally be shared within the healthcare team and with other health workers who give you care. This is mostly so that the right decisions about treatment can be made.

These rules apply to reception and other support staffists as well as to doctors, dentists and nurses. Reception staff might have access to your medical notes as part of their work, but they certainly shouldn’t discuss your HIV status in public, or with anyone outside the healthcare team.

The NHS rules

• Personal information must be protected.  It should be kept private, stored securely, used carefully and recorded accurately
• You should be kept informed about how your information will be used. This includes telling you about who can access your information and when it might be discussed with others
• Your wishes should be respected. For example, if they want to use your details for medical research, you have the right to say no. Or you could say that you don’t want information passed on to other health workers – even if this could make it difficult for them to give you the right treatment.

Confidentiality is also protected by the law, and it would be possible to take legal action against someone who has breached your confidence. Doctors who break the rules could be “struck off”, which means they can’t work as a doctor any more.

Electronic records or Summary Care Records

The same rules of confidentiality will apply to the Summary Care Record. This is a new system of electronic records being introduced in England. 

• These records contain basic information like your name and date of birth
• They also mention allergies and the medicines you take, including HIV medicines if these have been discussed with your GP
• Health workers involved in your care are allowed to access your records
• You can refuse to have your details stored on this electronic record if you do not wish your HIV status to be accessed by other health care workers.

Find out more about NHS Summary Care Records.

Similar systems exist in Scotland (Emergency Care Records), Wales (Individual Health Records) and Northern Ireland (Emergency Care Summary Records).

Exceptions

It is within the NHS rules for anonymous information to be shared. For example, the GP might pass on statistics about what treatment was provided, but should remove your name and any other information that could identify you.

There are some situations where you might agree that your doctor can provide information from your medical records. For example, you may give permission to a doctor to provide information as part of an application for an insurance policy, or to an employer when you are applying for a job.

There are a few other situations when the normal rules of confidentiality may not applybe broken. These situations are extremely uncommon. 

• If a court requests the information.
• In some cases, if the police request the information.
• If a doctor believes that someone with HIV is putting the life of another person in danger, the doctor has may have the right to disclose information to the person in danger. This can only be as a last resort, and after telling the person with HIV that confidentiality will be broken.

Otherwise, the doctor (and other health workers) must make sure that your medical information remains private.