e-Learning for health and social care workers
What you need to know about HIV
This resource has been written by NAT (National AIDS Trust) in partnership with BHIVA (British HIV Association) for people working in the health and social care sector.
The reality of living with HIV has changed dramatically in the last thirty years. There are now almost 100,000 people living with HIV in the UK today. With the huge improvements in treatment and care, many people with HIV can have a normal life expectancy, a career, relationships and children. As people living with HIV are living for longer they need to access a range of services to meet their health and social care needs and this means you are more likely to come into contact with someone who is HIV positive.
This training resource is designed to enable you to feel confident about treating and caring for someone living with HIV and includes information on the routes of HIV transmission and levels of HIV risk in a health and social care setting.
The resource will also help ensure service users and colleagues living with HIV are treated appropriately and your understanding and knowledge of HIV is accurate and up to date.
The facts about HIV
What is HIV?
HIV or Human Immunodeficiency Virus is a virus that attacks and damages the body’s immune system.
HIV makes the body’s immune system less effective over time so that it can no longer protect itself against some opportunistic diseases which it would normally be able to fight off. People who are undiagnosed and have been living with HIV for a considerable time can develop a number of serious illnesses such as pneumonia, TB and certain types of cancer such as Non-Hodgkin Lymphoma. For more information on conditions associated with late stage undiagnosed HIV please see UK HIV testing guidelines.
What is the difference between HIV and AIDS
The terms HIV and AIDS (Acquired Immunodeficiency Syndrome) continue to be used interchangeably in the media and by some people in public discussions. However, this is incorrect and misleading as they are not the same.
HIV, if left untreated, can lead to the development of AIDS. People diagnosed as having AIDS will have one of a number of different illnesses, depending on the opportunistic infection they develop. This is why AIDS is not considered a disease, but a syndrome – a collection of different signs and symptoms, all caused by the same virus, HIV.
Since the development of effective treatment, as long as people with HIV are diagnosed in time, it is very unlikely that they will develop AIDS. With treatment, even if someone has AIDS, health can be restored and the long term prognosis can be excellent.
Primary HIV Infection
Seventy to ninety percent of people will experience for a short period, symptoms of early HIV infection known as ‘primary infection’. This usually occurs around 10 days after transmission and can present as a combination of symptoms, such as fever, sore throat, rash, fatigue, headaches, diarrhoea and loss of appetite. These symptoms are unusual in otherwise healthy people and should be identified as potential signs of primary HIV infection if they occurred soon after a sexual risk incident. Primary HIV infection is when a patient is most infectious and likely to pass the virus on so it is important that they get tested and diagnosed early.1
Symptoms of primary HIV infection last usually between 10 days and three weeks and then disappear as the individual enters the chronic, asymptomatic stage of HIV infection which can last for many years.
HIV in the UK
At the end of 2012, there were nearly 100,000 people living with HIV in the UK.2 Gay and bisexual men and black African men and women continue to be disproportionately affected by HIV. These two groups together make up over three quarters of people with HIV in the UK.
In 2012 in the UK:
- 1 in 26 black African men and women are living with HIV
- Almost 1 in 20 gay and bisexual men are living with HIV (rising to 1 in 12 in London)
- 1 in 100 injecting drug users are living with HIV (these rates are relatively low compared to other parts of the world due to effective harm reduction measures in the UK)
- 1 in 258 black Caribbean people are living with HIV.
Around 15% of people living with HIV in the UK are not from any of these groups.
Out of the 100,000 people currently living with HIV, approximately 1 in 5 are unaware of their status which has huge individual and public health consequences.
The majority of people with HIV in the UK live in England (92%), with 44% of people living with HIV in London.
How can HIV be transmitted?
Only 30% of adults in the UK can correctly identify all the ways that HIV can and cannot be transmitted. A lack of understanding around HIV transmission has meant myths about the routes of transmission are still widespread.3
Scenarios where there is no risk of HIV transmission
HIV cannot be passed on through contact with bodily fluids such as saliva, urine, faeces or vomit. You cannot get HIV from:
- social contact such as touching, kissing, superficial scratching, coughing, sneezing or sharing toilet seats, handling or lifting someone, sharing or using toothbrushes or cutlery.
- You also cannot get HIV when you come into contact with infectious body fluids so long as your skin is intact.
Routes of HIV transmission
HIV is most commonly transmitted by sex without a condom. 96% of all new diagnoses in 2012 were from sex without a condom, either between two men or between a man and a woman.4
- Anal or vaginal sex without a condom is the main route of transmission.
- Unprotected oral sex has a much lower risk, but is also a possible route of transmission.5
Other routes of infection include:
- Sharing infected needles, syringes or other injecting drug equipment.6
- Blood transfusion or organ transplantation – there have been no reported cases of HIV transmission via this route since 2002 in the UK, although transmission via this route does occur in other parts of the world.7
- From a woman to her baby during pregnancy, delivery and breastfeeding. However, with appropriate medical interventions, the risk of mother to child transmission of HIV can be reduced to less than 1%.8 Over 95% of pregnant women accept an HIV test in antenatal clinics and in 2012 there were only 4 identified cases of mother-to-child transmission (MTCT) in the UK.9
Rare and theoretical ways of transmitting HIV
There are some situations where there may be a theoretical risk of HIV transmission but the risk is extremely low or may not exist at all. Rare or theoretical ways of transmitting HIV in the UK include:
- Needlestick injuries – there are no known cases of a member of the public contracting HIV through contact with a discarded needle or syringe. There have been five cases of occupational transmission of HIV through a needlestick injury in healthcare settings in the UK, but none since 1999.10 For more information please go to section two of this resource.
- Blood in eye –There is an extremely low risk of HIV transmission from blood which comes into contact with a ‘mucous membrane.’ There are no known cases of HIV transmission from blood in the eye.
- Biting – while considered theoretically possible in exceptional circumstances, there have been no cases of HIV infection from a bite in the UK.11
It is important that you recognise the symptoms of HIV and understand the ways in which HIV is transmitted so you can offer a HIV test to someone you think may be at risk. A fifth of people living with HIV in the UK are still unaware of their infection.12 Research indicates that more than half of new HIV infections come from someone who does not know they are HIV positive,13 and far too many people with HIV are being diagnosed late (after the point at which treatment should have commenced).
The UK National Guidelines on HIV testing recommend that any trained healthcare worker can obtain consent for and conduct an HIV test. There is no need to conduct pre - test counselling before the offer of an HIV test although it is important to discuss with the person the benefits of testing and the details of how the result will be given beforehand.
If you are recommending a patient has an HIV test, they can get this done in a variety of clinical or community settings including any walk-in sexual health clinic, GP surgery and some pharmacies. There are different types of HIV test. Most HIV tests in the UK involve taking a blood sample which is sent to a laboratory for testing. There are also Point of Care tests (POCT) which use a finger-prick or saliva sample to test for HIV.
Home sampling kits (where someone takes a saliva or blood sample and posts it to the lab themselves) are another testing option available to buy online and may be provided by some local authorities as part of their HIV prevention work.
From April 2014 it became legal to sell and advertise self-testing kits.14 Self-testing kits are different from home sampling kits as they allow the individual to take a sample of their blood or saliva and analyze the results themselves. Please see NAT's factsheet for more information.15
HIV can be detected four weeks after an exposure incident if the most up-to-date laboratory tests are used (available in all sexual health clinics). HIV is not detectable immediately after transmission and this short initial period, known as the ‘window period,’ is the time in which a laboratory test would not detect HIV. Someone may be recommended another test after three months if the test result is negative.
Test results can be available soon after the test but waiting times are dependent on the type of test. If a blood sample is sent off to the laboratory, the results can take up to 2 weeks, but are very often available sooner (the recommended target is to provide test results within 48 hours). POCT can return results in less than 15 minutes. Some POCT can provide an immediate result.
The UK National Guidelines on HIV testing recommend who should be offered an HIV test. You can download the lists provided in this document of who should be routinely offered a test.
Health and Safety
Universal precautions and risk management
The Department of Health Guidance16 on occupational exposure to HIV in a healthcare setting notes that the risk of transmission is low, with a transmission risk of about 3 per 1,000 in percutaneous injuries such as needlestick injuries involving someone known to be HIV positive. There have been no reported cases of HIV transmission in a social care setting.
Notwithstanding the very low risk of HIV transmission in a health and social care setting, it is important that you have the correct information to protect yourself and others from HIV at work.
Routine procedures should involve using universal precautions such as wearing gloves when taking blood or when handling other bodily fluids and making sure any cuts or skin infections are properly covered. The General Medical Council’s (GMC) guidelines17 outline how universal precautions are all that are necessary to protect yourself from HIV transmission when you are in contact with someone living with HIV, even when conducting more invasive procedures or surgery. There is no need to use extra precautions.
It is vital that you do not overstate the risk of HIV transmission when someone known to be living with HIV is in your care or act in a way that would be discriminatory by using ‘extra’ precautions that you would not use for an HIV negative person. Please see section four and five for more information on how to treat a service user living with HIV.
If someone’s HIV status is known they are likely to present a low risk. This is because people with diagnosed HIV are likely to be on effective treatment. Treatment significantly reduces the amount of the HIV virus in the blood stream (viral load) and this reduces infectiousness to an extremely low level.18 However, currently 1 in 5 people living with HIV are unaware of their status and are more likely to be infectious. It is therefore important that universal precautions are used at all times to protect yourself from undiagnosed HIV or any other blood-borne virus (BBV) a person may have.
If you are concerned that you have been exposed to HIV, you should seek medical advice straight away. If an assessment indicates a significant risk of HIV exposure, post-exposure prophylaxis (PEP) will be recommended. PEP is a month-long course of anti-retroviral treatment taken to prevent HIV infection following exposure to the virus.
If PEP is needed it should be started as soon as possible – within hours of exposure – and certainly within 48 - 72 hours of exposure. PEP will not normally be recommended after 72 hours as it is much less likely to be effective after this point. PEP is available from A&E departments and sexual health clinics.
PEP can have side-effects, so health and social care workers will be advised to take it only when there is a real risk of occupational exposure. You can read the full guidance on PEP for more information.19
The reality of living with HIV
What is it like to live with HIV today?
Since the 1980s, treatment for HIV has improved substantially and the majority of people diagnosed today go on to have a normal life expectancy, lead active lives and do not develop AIDS.
Effective treatment means for example, there is no reason why someone living with HIV cannot have children and the transmission risk between mother to child when the mother is HIV positive and on treatment is 0.5%.
There is also no reason why someone living with HIV cannot expect to have a full working life. Research has shown that the majority of people living with HIV in work say that their HIV has no impact on their job.20
People living with HIV work in a wide range of professions. The only job they cannot do is working in frontline roles of the armed forces. This is due to concerns over access to HIV medication when in combat.
The ban on people living with HIV working as a Dentist, Midwife or Surgeon (professions which involve ‘exposure prone procedures’), has recently been removed, although someone living with HIV has to have a low viral load (<200 copies/ml) before they are able to perform exposure prone procedures. For more information on the requirements, please see NAT’s briefing on the changes to occupational restrictions for healthcare workers with HIV. There are no such requirements for people living with HIV working in any other health or social care profession.
HIV as a long-term condition
Although many people living with HIV report no significant health problems, some people have ‘flash points’ when HIV impacts more on their life. The physical and psychological impact of living with HIV can be felt more greatly when someone is first diagnosed or is changing treatment.21
The fluctuating nature of HIV means that people can experience at different times symptoms or treatment side effects such as fatigue, depression or anxiety, gastro-intestinal problems or insomnia which can impact on their daily life.22 At these times people may need additional support from social care and community services.
Many people living with HIV also experience mental health problems. Depression is thought to be around twice as common in people with HIV as in the general population and the overall prevalence of psychological and psychiatric problems among people living with HIV is also substantially higher.23 Poor mental health can be linked to the complex and long term nature of HIV, HIV-related stigma and stress around diagnosis and the side effects of some anti-HIV medications.
The Standards for psychological support for adults living with HIV provide more information around the psychological support people should receive. This support can make a considerable difference to the long-term health and well-being of someone living with HIV.
Stigma and discrimination
Many people living with HIV continue to face stigma and discrimination in the UK today. In a survey of people living with HIV in East London, nearly one third of people said they had experienced HIV-related discrimination.24 Significantly, half those respondents said the discrimination had involved a healthcare worker.
HIV discrimination can be linked to misunderstanding about how HIV is transmitted. In an Ipsos MORI survey of attitudes amongst the general public to HIV, 65% agreed or strongly agreed that there is still a great deal of stigma in the UK today around HIV. Improving awareness of the realities of living with HIV and how the virus is transmitted should help reduce stigma and ensure people living with HIV are treated fairly and with respect.
How to treat a service user with HIV
The dos and don'ts
When caring for someone with HIV, it is important that you give them access to the same treatment and services as someone who is HIV negative. It is unlawful under the Equality Act 2010 to single out someone living with HIV for different treatment or decline to offer goods or services to them (for example health and social care).
In particular, you should not:
- Give someone living with HIV an appointment at the end of the day because of a supposed infection risk. Universal precautions should be used at all times (over 20% of people living with HIV are undiagnosed).
- Dispose in a different way of something that has been in contact with someone living with HIV. There is no need to specially disinfect equipment just because it has been in contact with someone living with HIV. Usual disinfecting processes are sufficient.
- Use additional precautions when dealing with someone living with HIV as this can be stigmatising and discriminatory. For instance, you should not double glove when taking blood from someone who is HIV positive.25
- Operate a blanket policy of denying someone living with HIV surgery because of surgical or post procedure complications. The health of someone living with HIV should be assessed individually on a case by case basis as with anyone else undergoing surgery. There is no evidence to suggest that someone living with HIV is more susceptible to surgical or post surgical complications than an HIV negative patient.
- Ask someone living with HIV how they got the virus. This is an invasion of personal privacy and can make people feel uncomfortable. It is completely unnecessary outside of the sexual health clinic to know how someone acquired HIV when giving care and treatment to a patient.
You should always:
- Understand the rules around confidentiality and in what circumstances you should/should not share the HIV status of a service user.
- Ensure someone living with HIV has access to HIV treatment they are taking.
- Ensure any drugs you prescribe do not interact with any HIV medication a patient is on.
- Treat someone living with HIV with dignity and respect.
If someone is in your care and has disclosed their status, it is important to find out if they are on treatment. If they are, you should make sure they can access their treatment as strict adherence (taking medication exactly as prescribed) is vital to its success. HIV medication has to be taken at least once a day. Even missing one dose in a month can risk the treatment becoming ineffective (good adherence is considered to be taking medication as prescribed at least 95% of the time).
If the person is in a care home or an inpatient ward for instance, you will to need to make sure they can access their medication. If you need to discuss their need for medication with another member of staff, first seek consent from the person living with HIV that they are happy for you to disclose their HIV status. It is also important to know whether someone is on HIV treatment so that if you need to prescribe medication you are aware of what drugs could interact with that treatment. For more information on HIV drug-drug interaction please see http://www.hiv-druginteractions.org/
If you are directly providing health or social care to someone living with HIV, it is crucial that you recognise their right to confidentiality.
Very often in a health and social care setting, implied consent is assumed when sharing a patient’s confidential information with other health and social care professionals involved in their direct care.
It is a good idea, however, to explain to a patient how their HIV status will be shared and to make sure the patient is happy for this to be done.
Explicit consent must always be sought before sharing someone’s HIV status with anyone who will not be involved in their direct health or social care. You should not:
- Assume that someone's family or household are aware of their HIV positive status and must not disclose any information to them without the service user’s permission.
- Assume that the sexual partner(s) of someone with HIV knows about their HIV status. It is a serious breach of confidentiality to inform a sexual partner without a service user’s consent. Partner notification is the responsibility of the patient’s HIV/sexual health clinic.26
- Discuss openly the HIV status of a patient with other colleagues not directly involved in their care or in earshot of third parties, such as at the reception desk in a practice or ward.
How to treat a colleague with HIV
Equality Act 2010
It is important to remember that people living with HIV are able and entitled to work just like anyone else. There is no risk of HIV transmission through everyday work contact for either colleagues or the public (please refer to sections one and two).
People living with HIV in work are protected from discrimination under the Equality Act 2010 (HIV is defined as a disability from the point of diagnosis in this legislation). For more information about the different types of discrimination and how to avoid acting unlawfully please see HIV@work: Advice for employers.
The Act also prohibits the use of pre-employment health questionnaires - this means it is unlawful to ask any questions about a candidate's health or disability prior to making a job offer. There are exceptions to this requirement if a job involves carrying out ‘exposure prone procedures’ in a healthcare setting, for example being a Dentist, Midwife or Surgeon, where people will be asked to disclose their HIV status. All new healthcare workers employed or starting training (including students) in professions which involve exposure prone procedures will undergo standard health checks after they have been offered a position which will include being offered an HIV test.27
Someone living with HIV who faces discrimination has the right to report this to their line manager where appropriate disciplinary action should be taken. If the issue continues to be unresolved, they can take their case to an Employment Tribunal.
You should be aware of the Equality Act and how it applies to people living with HIV, including how to treat someone with HIV fairly and with respect.
Employers must ensure someone living with HIV has access to ‘reasonable adjustments’. Reasonable adjustments make it easier for disabled people to continue to work. They may help a person with HIV to attend clinic appointments, take medication at set times or adjust to treatment side-effects. To get reasonable adjustments someone must first disclose their status.
If someone does disclose their status to you, for example so they can access reasonable adjustments, it is vital that you keep this information confidential as HIV is still a stigmatised condition. The Data Protection Act 1998 specifies that written consent is needed for personally sensitive information to be passed on.28 You should not assume that anyone else in the workplace knows about someone’s HIV status.
Confidentiality breaches in the workplace remain a common problem and fear for many people living with HIV. It is therefore important to reassure anyone who discloses that you will respect their confidentiality and support them to manage their condition at work.
Further information and reading
If you want to know more about HIV, you may find the following websites useful:
- All the key facts about HIV: www.hivaware.org.uk
- NAT (National AIDS Trust): www.nat.org.uk
- BHIVA (British HIV Association) www.bhiva.org
- NAM: www.aidsmap.com
- THT (Terrence Higgins Trust): www.tht.org.uk
- Public Health England: http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/HIV/
- Testing has a vital role in prevention as it is estimated 50% of new HIV infections are from people who are unaware of their status. For more information see Marks, G, Crepaz N, Janssen RS. ‘Estimating sexual transmission of HIV from persons aware and unaware that they are infected with the virus in the USA. AIDS. 2006 Jun 26;20(10):1447-50
- PHE. 2013. HIV in the United Kingdom: 2013 report
- NAT. 2011. HIV: public knowledge and attitudes, 2010.
- PHE. 2013. HIV in the United Kingdom: 2013 report
- NAM. 2011. Oral sex. Factsheet.
- PHE. 2013. HIV in the United Kingdom: 2013 report
- HPA. 2011. United Kingdom new diagnoses to the end of June 2011
- NAM. 2011. Mother-to-baby-transmission. Factsheet.
- National Study of HIV in Pregnancy and Childhood (UCL) April 2014 slide set
- HPA. 2008. Eye of the needle- United Kingdom surveillance of significant occupational exposures to bloodborne viruses in healthcare workers.
- NAM. 2009. Biting. HIV transmission and testing.
- Public Health England.2013. HIV in the United Kingdom: 2013 report
- Marks G, Crepax N, Janssen RS: ‘Estimating sexual transmission of HIV from persons aware and unaware that they are infected with the virus in the USA’, AIDS,vol. 20, no. 10, 2006
- 'Modernisation of HIV rules to better protect public'
- HIV ‘self- testing’ kits: Know the facts
- Expert Advisory Group on AIDS. 2008. HIV Post-exposure prophylaxis
- General Medical Council (2009) ‘Confidentiality: disclosing information about serious communicable diseases’ – para. 8.
- BHIVA/ EAGA Position statement on the use of antiretroviral therapy to reduce HIV transmission, January 2013
- Expert Advisory Group on AIDS. 2008. HIV Post-exposure prophylaxis
- NAT. 2009. Working with HIV.
- NAT. 2011. Fluctuating symptoms of HIV
- Ciesla JA & Roberts JE (2001) Meta-analysis of the relationship between HIV infection and risk for depressive disorders. Am J Psychiatry 158:725-730. World Health Organization (2008) HIV/AIDS and Mental Health. EB124/6 20 November 2008.
- J Elford et al. 2007. HIV-related discrimination reported by people living with HIV in London, UK. AIDS Behaviour.
- Please see recent BHIVA report on medical students behaviour and attitudes towards people living with HIV: Jarrett, P and Sukthankar, A (2013) 'Positive perspectives: an inter-university study of UK medical students on their attitudes to and knowledge of HIV' HIV Medicine, Vol 14 (2): 12-77
- For more information please see the GMCs guidance (2009) Confidentiality: disclosing information about serious communicable diseases
- PHE (2014) The Management of HIV infected Healthcare Workers who perform exposure prone procedures: updated guidance, January 2014
- Data Protection Act 1998