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This page is for people newly diagnosed with HIV or people living with HIV who have recently transferred their care to NHS Tayside. This page may also be useful to partners and carers of people living with HIV.
We hope this page will give you information about the way the HIV service operates, what you can expect when you attend for a clinic appointment and why we do blood tests. This page will also answer some frequently asked questions and direct you to other sources of information.
Over the next two weeks we will do the following:
One of the team will take your personal details and the contact details for the hospital or clinic where you previously had your HIV care. With your consent we will contact them to ask for a summary of your HIV care which will include: date of HIV diagnosis, baseline blood results, details of any HIV treatment, vaccination history and details of other illnesses and medications.
The HIV service is staffed by specialists including doctors, nurses and pharmacy staff supported by an HIV care co-ordinator who ensures everyone involved in your care is working together.
The HIV service offers clinics at Ninewells Hospital in the East Block Out-patient Department (chest/infection clinic) and in the Tayside Sexual and Reproductive Health Service. There is also a clinic in Perth Royal Infirmary Out-patient Department.
On arrival you will meet the receptionists who will let the clinic nursing staff know you have arrived.
One of our clinic nurses will then weigh you, check your blood pressure and ask you for a urine sample. They will also offer you condoms.
You will then be seen by one of the specialist HIV team. There is a consultant team who have overall responsibility for your care however at your clinic visits you may see a consultant, a specialist registrar, a specialist nurse, an advanced nurse practitioner or pharmacist. If there is a particular clinician you would prefer to see then please ask. Unfortunately we cannot guarantee that you will see the clinician of your choice.
As part of the multi-disciplinary team the HIV nurses can help you to cope with your diagnosis and manage HIV lifelong, working with you to plan your care around your needs. This care may take place whilst you are in hospital, at clinic or in your home.
This may include helping you make choices about your treatment, coping with medication and possible side effects or supporting you to access other services for your other health and emotional needs. The HIV nurses can provide support for you and your family around emotional, sexual and social aspects of your life.
After you have seen the doctor or specialist nurse you will have your blood taken by a phlebotomist. These are people who are trained in taking blood.
If you are on treatment for your HIV you will also see one of the pharmacy team to be given your medicines or if they are not available at the clinic your medicines may already be waiting at the hospital pharmacy department for collection.
Available for queries of any nature related to living with HIV; to signpost and support you to access care from the right people or service at the right time.
before you leave the clinic please book your next appointment at reception.
Your care may require that you see one of the following associated professionals for specific support or treatment. These might include:
We will check that you are up to date with vaccinations.
People with HIV and people on some HIV treatments are at higher risk of having heart attacks and strokes compared to people who don’t have HIV. For that reason we are interested in your blood pressure, your cholesterol and whether you smoke in order to improve other risk factors that contribute to the overall health of your heart. We will review your cardiovascular health every 1-2 years depending on your age and risk factors.
People with HIV and people on some HIV treatments are at higher risk of bone-thinning (osteoporosis). For that reason we are interested in asking about other risk factors for bone health including smoking and alcohol intake in order to improve other risk factors that contribute to the overall health of your bones. We will review your bone health every 2- 4 years.
As HIV can be passed to partners through sexual contact we will ask you about your sexual partners. We understand that for many people, relationship history does not change. Since many people find it a difficult subject to volunteer we will raise the subject as sensitively as possible. Please don’t be offended by any questions we ask you. We will ask everybody the same questions so as not to discriminate.
If you have had any new sexual partners we will offer you testing for other sexually transmitted infections which can usually be done without any examination but may require a urine sample or swabs.
Condoms are essential to help prevent the spread of HIV to partners. You should never have to pay for condoms. In order to ensure that everyone who needs condoms gets them, the clinic nurse may offer them to you. If there are particular condoms that you prefer (size, style, flavour etc) please ask. People living with HIV can also order free condoms through our “Condoms by Post” service. Speak to the team if you would like to register for this service or place an order here.
We will do a full physical examination which may include looking in your mouth, feeling your glands, listening to your heart and lungs and feeling your tummy. If you have any skin problems you are concerned about then please let the team know. If you have any genital problems then please don’t be embarrassed and let us know.
The following tests are recommended for everyone but they may not all be done at every clinic visit. A full explanation of these tests is available at the back of this leaflet.
We want to know if you have had any problems with your treatment, if you have developed any side effects and if you have been prescribed any new medicines so we can check if they may interact (i.e. alter the level of one or more of your medicines).
This looks at the number of red cells, white cells and platelets circulating in your blood. It tells us about how your bone marrow and how your spleen might be working.
This looks at some proteins and salts in your blood that are handled by your kidneys. It helps us know how your kidneys are working.
This is a test done on a sample of urine. It can tell us if there is infection in your urine or if your kidneys are “leaking” blood or protein into your urine.
These tell us if your liver is inflamed.
This tells us whether you might have diabetes. To be truly diagnostic it needs to be taken when you haven’t eaten for more than 4 hours.
This measures your cholesterol. High cholesterol might be related to some of your medicines.
depends on which tablets you take
This blood salt can be low if you are taking particular medicines.
Measures how much HIV virus is in each millilitre of blood. If you are not on treatment it doesn’t give us very much information. If you are on HIV treatment then it is important that the viral load becomes “undetectable” and stays “undetectable” to prevent the virus becoming resistant to your medicines and prevents you from passing HIV on to anyone else (U=U undetectable = untransmissable).
This is a type of white blood cell that fights infections. HIV destroys this type of cell. A normal CD4 cell count is higher than 500. If your CD4 count is less than 200 then you are in danger of becoming unwell.
Syphilis is a sexually transmitted infection that is more common in people living with HIV and has more serious complications in someone who also has HIV.
These blood tests can tell us whether you have had hepatitis B before, whether you have it now and whether you are immune to it. This guides our recommendations for vaccination.
This blood test can tell us whether you have hepatitis C infection or whether you have had it before.
HIV stands for the Human Immunodeficiency Virus. It is a virus which attacks the body’s defence system (immune system) and can make you less able to fight infections.
You can have HIV and feel completely well for many years.
If someone with HIV has a detectable viral load, they can pass HIV on in these ways:
Most activities pose no risk of getting or passing on HIV. HIV is not passed on by: hugging, kissing, shaking hands, sharing cups or cutlery or on toilets.
There are medicines which can reduce the amount of HIV in the body and protect the immune system. Although there is no cure, these medicines have dramatically improved the duration and quality of life for people living with HIV.
Recent research has shown all patients with a diagnosis of HIV should be offered treatment regardless of their CD4 count. Early treatment has been shown to improve long term health and people on treatment with an undetectable viral load cannot pass on HIV. Your doctor or nurse will explain this to you in more detail at your clinic appointment and the decision to start treatment is always made in partnership with you.
Nowadays, it is expected that most people with HIV will have a normal life span if they receive treatment.
A new HIV diagnosis will affect new insurance policies in the same way any chronic health condition would. It is important you let any insurance provider know this at renewal in order for your policy to be valid. Please ask your doctor or nurse if you require further information about this. They can provide you with further information about insurance companies that provide mortgage and personal insurance to people living with HIV.
You will likely have many questions around your treatment, below you will find our most commonly asked questions. Even if you can’t think of any right now, please refer back here when you do have a question.
Please have a look at our Services & Contact list for more info.
We will always try to ensure that you have enough medicines to last until your next appointment. If you are running out of medications then please contact the specialist team who will arrange a further supply using the contact numbers or email at the end of this leaflet. If you have recently missed an appointment you will only be given a one month supply until you are seen in clinic. Please allow at least 5 working days for medicines to be organised and delivered to your preferred pick up point (either Ninewells Hospital Main Pharmacy or Perth Royal Infirmary Satellite Pharmacy).
If you cannot attend an appointment please cancel it as soon as possible by contacting the specialist team on the contact numbers or email at the end of this leaflet, so that the appointment can be given to someone else. You will be given a new appointment.
If you have an appointment and you do not attend then this is referred to as “defaulting”. If you cancel your appointment on the day of the appointment then this will also count as a default as the appointment cannot be offered to anyone else. If you default from two consecutive appointments then we will not send you a new appointment and we will write to your GP to let him/her know. We will then expect you to contact us if you wish to make another appointment.
Women with HIV can enjoy safe pregnancies and healthy babies if they have monitoring and treatment throughout their pregnancy. If you have a positive pregnancy test then please contact your midwife or GP at your local practice as soon as you know you are pregnant. Please also contact the clinical team who will ensure that you see the right specialists during your pregnancy. If you are unhappy about being pregnant, contact your GP or your local Sexual and Reproductive Health Clinic to discuss your options.
If you would like to discuss how you can plan a pregnancy then just ask at your next clinic appointment.
Your general practitioner (GP) should be the centre point for all of your healthcare needs as they are experienced in being able to provide for a broad range of medical conditions. If your GP does not know that you have HIV, he/she is unable to give you the best possible healthcare. In fact, you may come to harm from investigations or treatments they arrange if they are unaware of your infection. HIV specialists are not experienced in all aspects of medicine as your GP is. If your GP thinks that your problem is because of your HIV or your treatment they can ask us to see you.
Not many people need to know about your HIV and we will not tell anyone without your consent or knowledge. It is important that anyone who may have been at risk of either passing the infection to you or contracting the infection from you has the opportunity to be tested. This is so they don’t come to harm from HIV and so that they can prevent passing it to anyone else if they are also infected. Our specialist nurses and sexual health advisers can help you with this. We can support you in telling these people yourself or we can do it anonymously for you without giving away any of your personal details.
Your dentist should be made aware of your HIV. People living with HIV are more susceptible to gum problems and other oral conditions and so your dentist can be very helpful. As your dentist is often using sharp instruments in your mouth it is also important they are aware for their own protection. Other specialist clinics should also know about your HIV. No healthcare facility should discriminate against anyone living with HIV.
The decision to tell family, friends or colleagues is entirely up to you but we can support you to make this decision.
People living with HIV are at a higher risk of unusual infections and other illnesses. Most people living with HIV however are usually on HIV treatment and have relatively healthy immune systems. If you feel unwell for any reason then you should see your GP in the first instance as it may well be something completely unrelated to your HIV. It is important that your GP knows about your HIV so they can consider it when they make a diagnosis or prescribe any treatment. If your GP is concerned that your illness may be related to your HIV then they can contact an HIV specialist for further advice. We will either give your GP advice over the phone, arrange to see you in the next available clinic or see you urgently depending on the situation.
If you become unwell out-of-hours then contact NHS24 for advice on 111. If it is an emergency then you can call the emergency services on 999.
If you are moving to another area then it is best for the local HIV team there to continue your care. Our HIV team can give you contact details of the local services in your new area. Please see us shortly before you leave so we can supply you with enough medicines to last you until you arrange care in your new area. With your consent, your new HIV care provider will contact us to send a summary of your care which will include: date of diagnosis, baseline blood results, details of any HIV treatment and any other illnesses and medicines. If you are still living in Tayside but would like to have your care elsewhere then please discuss this with your nurse or doctor. We would like to support you in continuing to access your care in Tayside and can do this by exploring other options for you. If you would still like to move then you can follow the instructions above. However, we would ask that copies of letters from your new clinic be sent to us in case you become unwell and are admitted as an emergency within Tayside.
You have the right to be treated fairly, with respect and with equality. This means that you cannot be discriminated against because of your HIV status.
You have the right to confidentiality. This means that any personal details linking you to your infection will not be disclosed to a third party without your knowledge and consent. A third party means someone outside of the multi-disciplinary team. In only very exceptional circumstances, where we believe there is a serious risk to someone else, will we disclose your HIV status and we will always do this with your knowledge. If you would like further information about this then please discuss it with your doctor.
You have the right to a high standard of care which includes a multi-disciplinary team who are properly trained and keep their skills up-to-date, who communicate well and act professionally. NHS Tayside’s HIV service aspires to meet the standards of care issued by the British HIV Association and Health Improvement Scotland.
You have the right to be fully involved in all decisions regarding your treatment and care.
You have the right to be seen within 30 minutes of your appointment or expect an explanation.
You have the right to make a complaint and receive a written response. Staff can direct you to the appropriate complaints procedure. We welcome this form of feedback in order to better our service.
Treat all people involved with your care with the same respect you would wish to receive yourself. Please be respectful of the privacy of the other people in the waiting room. There are many reasons why people might be sitting there. Contacting people you have seen in the waiting room can cause a lot of anxiety and make people afraid to come to clinic. If you witness any inappropriate behaviour in the waiting room don’t be afraid to speak to us about it. We would like you to feel as comfortable and as reassured as we can.
If you don’t understand anything, ask for it to be explained again or in a different way.
It is your responsibility to prevent any further spread of HIV. We will work together with you to ensure that:
As a department we occasionally take part in research or audit that may be organised locally or through other agencies such as the British HIV Association or HIV Scotland. We take part in these studies when we believe the results and outcomes are likely to contribute to the health and the care of people living with HIV.
If you are invited to take part in any research project then you will be given written information and will be given the opportunity to decline. There is absolutely no obligation to take part and if you decline this will in no way affect the care or treatment you receive within our service.
Audit is a way of making sure that we are “up to scratch” in the way we look after you. Healthcare staff and students frequently undertake audits which involve looking through case notes to make sure that we are meeting the necessary standards that are expected of us. These standards are issued by The British HIV Association, Health Improvement Scotland, NHS Tayside Blood Borne Virus Managed Care Network, NHS Tayside and the Health and Social Care Partnership.
If you are interested in the results of any audits then please ask.
Patient information leaflets: We have a range of leaflets that are available from the clinic which cover issues such as the HIV infection and disease, treatment and side-effects, pregnancy and women’s issues, nutrition, mental health and sexual health. Please ask a doctor, nurse or pharmacist if you are interested in any of these.
Websites: There are many websites which give information for people living with HIV. The content of all websites cannot be always guaranteed to be accurate. Here are a few websites we recommend:
Please have a look at our Services & Contact list for more info.
Complaints, suggestions and feedback are best submitted in writing. You can make a formal complaint via the health board’s complaints department. You can request a complaints form by emailing the complaints department at tay.feedback@nhs.scot or by telephoning 0800 027 5507. If you don’t wish to make a complaint in writing then please speak to a member of staff you feel comfortable discussing the issue with. Please be assured that making a complaint will not affect the treatment or care you receive from this service.
For appointments and general queries, please phone 01382 443153 , text 07768058301 or email: tay.arvservice@nhs.scot (the team check this email daily except weekends and public holidays and endeavour to respond within 48 hours).
For urgent enquires regarding medication/issues not appointment related, please phone or text 07768058301