Confidentiality and disclosure

How will my personal information be handled by the NHS?

You have the right to privacy and confidentiality and to expect the NHS to keep your personal information safe and secure.¹  

You also have a right to see what information is recorded about you on your patient records and what parts of your record are shared with other healthcare professionals. ¹ 

Can I get support with telling my partner/s about my HIV?

After you are diagnosed with HIV, you will be offered support with telling your current and previous partners about your HIV status.¹   This is called 'partner notification' or sometimes 'contact tracing'.  This can be done in a number of ways. Your HIV clinic can work with you until you feel ready and able to tell your partner/s that you are HIV positive. They can contact your partner/s on your behalf (anonymously if you want) with your permission. Or you might come to an agreement with your clinic that if you haven't been able to tell your partner/s by a certain date, they will do it for you (again, this can be anonymous).

Partner notification is not only for newly diagnosed people. You can also get support at any time with telling any new partners you have that you are living with HIV.¹ 

HIV support organisations are also able to provide emotional support and practical guidance on how to talk to partners about HIV. You can find local HIV services by asking at your HIV clinic or searching online:

• http://www.aidsmap.com/e-atlas

The MyHIV website is another source of support. It includes a confidential forum where you can talk to other people living with HIV about the issues and concerns you have, including telling partners about your HIV.

Do I need to tell my GP that I have been diagnosed with HIV?

It’s a good idea to tell your GP about your HIV diagnosis.  HIV is a long-term condition and GPs can help you manage your health. It is also important that GPs know what medication you are on so that they don’t prescribe anything that interacts with it. 

However, you do not have to tell your GP. You also don’t have to tell them immediately after diagnosis – you can wait until later. You can also register with a new GP if you don't feel comfortable disclosing to your current one. (For more information see My GP).

If you have not yet told your GP about your HIV, remember that your HIV status will normally be included in any referrals that your HIV clinic might make on your behalf, for example to a hospital specialist. A copy of these referral letters are normally also sent to your GP, so if you do not want your HIV status disclosed you should make sure your HIV clinic is aware of this.

Will my GP tell anyone else in the NHS about my HIV status?

GPs normally assume that there is implied patient consent to share relevant medical information with other parts of the NHS, when referring you for other care (e.g. hospital services). 

HIV is considered relevant to almost all aspects of your care, so this information would routinely be shared with other parts of the NHS to help ensure your healthcare is safe and of a high standard. This is especially important if you could be prescribed drugs which would interact badly with any HIV medication you are taking

You have a right to receive a copy of any letter your GP sends about you to another part of the NHS.¹ 

However, if you do not want your GP to share your HIV status with another part of the NHS, you can ask them not to.  It is important to have this conversation, so that your GP knows that you don’t consent to have your information shared.

As your HIV status will normally be recorded somewhere on your patient record, reception staff may sometimes see this. However, only those who need to know will access this information and only on a need to know basis.

All NHS workers are bound by a duty of confidence, not just clinical staff. Receptionists and other administrative staff are contractually obliged to show regard to the NHS Code of Practice on Confidentiality and could face dismissal if they were to breach the confidentiality of a patient. 

How will my personal information be handled by my local council?

The personal information you provide to the local authority to apply for support services will be treated confidentially. This information will only be shared with people who need to know it in order to provide you with services.¹ 

Some types of personal information are considered ‘sensitive’ under the law. This includes information about your physical or mental health, sexual life, ethnic origins, political views and any criminal offences.²   Before your local authority uses any of this information, they will need to ask your permission. They cannot assume that you give consent to use it.

Make sure you let the local authority know if there are people involved in your care who you don’t want to know about your HIV status. For example, if you have a support worker helping you in the home and you’d rather not have them know your status, say this to the local authority.

_{[1] English Common Law; Data Protection Act http://www.legislation.gov.uk/ukpga/1998/29/contents} 

_{[2] Data Protection Act 1998 http://www.legislation.gov.uk/ukpga/1998/29/contents}

Will my GP tell anyone outside of the NHS about my HIV status?

Your GP is not to tell anyone outside of the NHS about your HIV status without your consent.¹   This includes your employer, your children and insurance companies and the Department for Work and Pensions (for disability benefits claims). 

For insurance requests the insurance company should send the GP a consent form which you have signed.  For employer requests the GP should talk to you to make sure you understand what is involved in the disclosure and have consented to this, before they share the information.

If you do consent to have information shared the GP should only provide information that is relevant to the request.  Only rarely will it be necessary to send your full patient record (this is the case for certain benefits requests and for some solicitors' requests).   If  you have any concerns about what information your GP is sharing for any request, ask them about how much detail they are providing, and whether this is necessary.  You have a right to see a copy of the information that is shared.¹