Infectious Diseases and Axess Sexual Health Departments - LUHFT wide
What are the next steps after finding out I have HIV?
Don’t be scared – things will be okay!
Testing positive for HIV can feel like a lot to handle. You may have lots of questions. HIV can feel scary, but you are not alone. Our friendly team are here to support you. When taken as advised, modern HIV treatment works very well. With the right care, people with HIV live long and healthy lives.
What happens next?
- Your first appointment: You will meet a doctor or specialist nurse. They will talk to you about HIV and answer your questions. They will help find the best treatment for you.
- Starting treatment: Most people start treatment soon after finding out they have HIV. This is usually one or two tablets once a day. The tablets work quickly to get the virus under control.
- Ongoing care and support: We will invite you to clinic. At clinic we check your blood tests and help you live well with HIV. Most people come to clinic every six months.
Starting Treatment
Your doctor or nurse will discuss options for HIV treatment. HIV treatment is called antiretroviral therapy (ART). We recommend starting ART as soon as you feel ready. You need to take this every day.
The amount of virus in your blood is called the “viral load”. ART lowers the level of HIV in your blood until a lab test cannot “see it”. This is called “undetectable”.
‘U=U’
‘U=U’ stands for: “Undetectable equals Untransmittable”.
- Undetectable: The virus levels are low and lab tests cannot “see it”
- Untransmittable: You can’t pass HIV on to other people through sex
U=U means that when your HIV is undetectable, you cannot pass HIV to other people via sex.
What you need to know about U=U
- It means zero risk: When your HIV is undetectable, the risk of passing the virus to a partner through sex is zero.
- Keep taking your ART: You must take your medicine as your doctor or nurse advises. Doing this will mean you stay undetectable.
- Test regularly: Keep coming to clinic to make sure your medicine is working and the right one for you.
- Protects your partner: You can have sex without worrying about passing HIV onto a partner.
- Other STIs: U=U only works for HIV. It does not stop other sexually transmitted infections.
About the Liverpool HIV service
We are a team of Sexual Health and Infectious Diseases doctors, nurses, counsellors and pharmacists. We have two clinics in Liverpool:
- Axess sexual health.
- General outpatients at the Royal Liverpool Hospital.
We also have axess HIV clinics in the following locations:
- Chester
- Crewe
- Halton
- Macclesfield
- Warrington
- The Wirral
St Helens and Southport also have clinics which are separate from the Liverpool service.
We can help you choose the clinic that is best for your needs. You may wish to change clinic at some point. You might need to move to a clinic outside of Cheshire or Merseyside. You are free to do this for any reason. We can help you to do this. This helps make sure there are no gaps in your care, and you stay well.
Support
A team of nurses and doctors are here to support you. We work closely with support services like Sahir House and George House Trust (GHT).
Sahir House and George House Trust offer “Peer support”.
This is when you talk to another person who is also living with HIV. This person knows what it is like to live with HIV. They will have a good idea of what you are going through. This can be helpful at any point in your journey with HIV.
Our service also has a HIV specialist counsellor and a HIV community nursing team. Sometimes these teams help people who need extra support.
You can talk to the team at any time if you need more help.
Follow up
You will need to keep taking ART throughout your life. Because of this, we ask you to come to clinic. This is to check your ART is working. We also help you live well with HIV. Most people come to clinic every 6 months. We sometimes ask to see you more often. This can be because you are new to clinic or have other health problems.
Antiretroviral therapy options
We will review your ART regularly during your HIV treatment and care. Most people take ART in pill or tablet form. We give some ART as injections (“shots”) instead of pills. We call these “injectables”. You can talk to your doctor or nurse to see whether this might be right for you.
Preventing HIV
The best way to prevent passing HIV on to sexual partners is by taking ART every day. Other ways to prevent passing HIV on include:
- Condoms: These help prevent passing on HIV and other STIs during sex. They are most protective when used correctly every time.
- PrEP (Pre‑Exposure Prophylaxis): PrEP is a medication someone takes before sex to prevent getting HIV. Even if someone has an undetectable viral load (“U=U”), some couples still choose PrEP. This can be for extra reassurance or if treatment has just begun.
- PEP (Post-Exposure Prophylaxis): PEP is an emergency medication someone can start after they may have come into contact with HIV. They must start taking it within 72 hours of possibly coming into contact with HIV. They need to take 28 days of tablets.
All of these options are available free of charge at any of our clinics.
Preventing other sexually-transmitted infections (STIs)
- Use Condoms: Condoms are an effective way to prevent STIs. Use water-based or silicone-based lube to stop condoms from breaking. Avoid oil-based lube (like Vaseline) because it damages condoms.
- Get Tested Regularly: If you are having sex, get regular STI checks.
- Ask Us About Vaccines: We have vaccines (“jabs”) to help prevent Hepatitis A, Hepatitis B, gonorrhoea, HPV. These are free.
- Talk to Your HIV Doctor About Doxy PEP: This is a pill taken after sex to prevent STIs.
Stigma
Our services offer non‑judgemental and confidential care. We will treat you with dignity and respect. If you experience unfair treatment in other health services, please tell your HIV clinician. This will help us put things right. If you have problems with our service, please tell us, or speak to the patient advice and liaison team.
Confidentiality
Confidentiality means that we will keep personal information about your health private. This includes your HIV status. We do not share records with people who do not need to see them for your care. This is a legal rule within the NHS.
You have the right to keep your HIV status private. People who care for you (like your GP and hospital) usually work together to give you the best care. We ask to share letters with your GP and other people who care for you. This helps us make sure your care is safe. For example, your GP may need to check that medications they give you don’t disrupt your ART. If you don’t want us to do this, please let us know.
Some NHS systems are shared. This means that your GP or other doctors and nurses looking after you may see test results or medicines. For example:
- HIV blood test results may appear on systems your GP can access.
- HIV medications may appear on prescriptions. Other doctors or nurses might work out you have HIV by seeing these medications on a prescription list.
Talk to your HIV team if you have any concerns about this.
Medication safety
The HIV team will check your medicine is safe to take with any other pills you are on. If anything changes in between appointments, you can check yourself using the HIV interaction checker website or app (see below). This is free to use
https://
How we contact you
We will ask you how you would like us to contact you. This can be by text message, phone, email, or letter. Standard NHS practice is to send a letter to your GP about your clinic. We send a copy to you as well. Please tell us if you don’t want us to send letters to your GP or to your home address. You can change your contact choices at any time.
HIV and the Law
British HIV Association (BHIVA) guidelines recommend that we give people with HIV information about what the law says about HIV transmission.
In the UK, criminal cases involving HIV are very rare. Where they have occurred, it has been when someone may have acted “recklessly”. For example they might have had sex when they had a detectable viral load and took no steps to reduce risk.
Taking treatment and becoming undetectable is recognised in UK law as a way of preventing transmission.
Telling other people about your HIV
There is no general legal duty to tell (“disclose”) your HIV status to anyone. This includes people you have sex with. However, telling friends or family about your HIV can help you feel better. We can support you to tell people if you would like us to.
Partner notification
When you first find out you have HIV, we will talk about sex. We may ask about your past sex partners. This is so we can test them for HIV. We can offer them treatment if they need it. We can help you tell partners yourself. If you prefer, we can contact them privately without naming you.
HIV care is free
In the UK, HIV treatment and care is free for everyone. This is the same if you have moved here recently. This is the same if you are an immigrant, an asylum seeker, or have no immigration status. You do not have to pay for HIV medication (ART) or clinic visits.
Feedback
Your feedback is important to us and helps us influence care in the future.
Following your discharge from hospital or attendance at your outpatient appointment you will receive a text asking if you would recommend our service to others. Please take the time to text back, you will not be charged for the text and can opt out at any point. Your co-operation is greatly appreciated.
Further information
HIV service telephone line (Liverpool): 0151 706 3474
Text phone number: 18001 0151 706 3474
Infectious diseases telephone line (Liverpool): 0151 706 3835
Text phone number: 18001 0151 706 3835
Contact email: hivservice@liverpoolft.nhs.uk
Opening hours: See https://
Support Services:
George House Trust (GHT): https:/
Sahir House: https:/
Author: Infectious Diseases and Axess Sexual Health / Medicine
Review date: May 2029
PI 3256 V1