The clinical team will do their best to answer the questions you might have about living with HIV. But, for some people getting advice and information from someone that has gone through a similar experience, be incredibly useful and reassuring. Below is a list of frequently asked questions and answers compiled by patients at the Brownlee Centre covering some of the main questions they themselves had when first diagnosed.
HIV stands for Human Immunodeficiency Virus. HIV attacks the body’s immune system and weakens it over time until it cannot fight off infections and cancers that a healthy person can. There is no cure for HIV, but very effective treatment means many people now consider HIV as a long-term manageable condition. With this effective treatment people with HIV are living, long and healthy lives. HIV causes AIDS and it is HIV that can be passed on. Just because someone has been diagnosed with an AIDS-related illness, does not mean they will die. Thanks to effective HIV treatment, many people who develop AIDS are now very well and can look forward to a long and healthy life.
More detailed information can be found at the Aidsmap website.
Nowadays people living with HIV can live long and healthy lives and it is considered by many to be a long-term condition. But as with any long-term condition, being diagnosed with HIV can be a life-changing experience that will have a whole range of emotional and practical implications. You can get information on a whole range of subjects by speaking to the staff or meeting with a Peer Volunteer.
Nowadays the majority of people in the UK diagnosed with HIV who follow the advice of their specialist care team are physically healthy and will not die due to their HIV infection. More detailed information can be found at the NAM and Aidsmap website.
This depends on how long you have had HIV before being diagnosed and what strain of the virus you have and any other illnesses or conditions you might have. It is recommended that everyone diagnosed with HIV starts treatment right away but this will be discussed with your doctor. Improvements in medications are happening all the time, so that people take fewer tablets less often - some people take only one pill once per day. Medications also have less severe side effects with a lot of people not having any long-term side effects at all. But everyone is different. More detailed information can be found at the NAM and Aidsmap website.
People sometimes worry about infecting others, but you cannot ‘give’ anyone HIV through normal social contact (shaking hands, hugging, kissing), by sharing food or cutlery, or using the same toilet. Even if you cut yourself HIV cannot cross healthy unbroken skin and washing with normal soap and water kills the virus. HIV is most commonly transmitted through having sex without a condom (anal or vaginal) or sharing injecting equipment. More detailed information can be found at the NAM and Aidsmap website.
When first told they have HIV, many people feel that their sex lives are over or at least things will be very difficult, but this is not true. Most people living with HIV have happy, healthy and fulfilling sex lives. But it does mean there are some things you need to consider when deciding how and when you want to have sex.
This section contains information on some of the things you may need to think about when you feel ready to have sex again. If you wish to discuss any of these issues you can ask to see one of the Sexual Health Advisers at the Brownlee.
The answer to this varies from person to person and depends on your situation. What you do have to remember is that once you tell someone you cannot take it back. This is why it is important to think about it carefully and it can be helpful talking this through in confidence with a Peer Volunteer.
It is important that current or previous sexual partners are tested as this is the only way to find out if someone has HIV and it could prevent them from becoming seriously ill. Notifying them can be done anonymously on your behalf and a member of staff will speak to you about this. More detailed information can be found at the NAM and Aidsmap website.
Every patient with HIV has a named consultant and a specialist nurse allocated to them. At clinic visits you won’t always see your consultant and it might be one of the department’s speciality doctors, but your overall care is always monitored and reviewed by your consultant. At clinic you can also access: sexual health advisors, counsellors, pharmacist, occupational therapist and a dietician. These staff are key members of our Multidisciplinary Team
If you don’t understand something then the best thing to do is to ask the member of staff to explain it. When it comes to your treatment and care there is no such thing as a stupid question. CD4 and Viral are the blood tests commonly carried out as they give important information about the effects HIV is having on your body. A CD4 cell count tells you about the strength of the immune system, which protects us against infections and illness. Viral load measures how much HIV there is in a drop of blood. For more information click here
All patient records are now held electronically; however the notes related to your HIV treatment and care are maintained with restricted and secure access. Only healthcare professionals looking after you will have access to the letters and blood tests that are relevant to providing you with optimal care. All NHS staff irrespective of their speciality or department are bound by and work under strict policy and rules on patient confidentiality. If you want more information on this then speak to a member of staff, view the Health Board's information on Data Protection and Privacy or see the guides Your Voice, Your Choice, Your Rights developed by HIV Scotland in conjunction with the National AIDS Trust (NAT).
There is no right answer to this question that will make you feel instantly better. Although people living with HIV share many of the same experiences and fears each person deals with it uniquely. Coming to terms with it also means different things to different people, but for many this is about acceptance and moving forwards to deal with what living with HIV means for them. Talking to someone can help and this could be someone close to you, a trained counsellor or a Peer Volunteer who understand what it’s like. To find out about Peer Support and Peer Volunteers please click here