HIV: A Guide For Care Providers - National AIDS Trust

1SECTION 1: WHAT EVERYONE SHOULD KNOW ABOUT HIVWith the changing age profile of people living with HIV, providersof residential and domiciliary care are more likely to come intocontact with people living with HIV. It is therefore essential that careworkers and other staff have a basic understanding of the virus.This section provides the facts about HIV people needto know. It should be used for staff training and inductionand to inform relevant policies. Providing accurateinformation will reduce anxiety about HIV transmissionand ensure that staff support people living withHIV appropriately. More detailed information onHIV transmission is provided in section four, HIVand infection control.What is HIV?HIV (Human Immunodeficiency Virus) is a virus thatattacks and damages the body’s immune system. In theUK, HIV is no longer a death sentence, but a long-termmanageable condition. If diagnosed on time and ontreatment, most people living with HIV will have a normallife expectancy.What is the difference between HIV and AIDS?Sometimes the terms 'HIV' and 'AIDS' (AcquiredImmunodeficiency Syndrome) are used interchangeably.This is incorrect and misleading. HIV if left untreated canlead to the development of AIDS, which is a collectiveterm for one or more conditions (for example pneumoniaor some types of cancer) which occur when someone’simmune system has been seriously damaged byuntreated HIV.If people with HIV are diagnosed and start treatmentwhen they need to, it is very unlikely that they will developAIDS. Even if someone is diagnosed late with an AIDSdiagnosis, improvements in treatment mean that theymay well return to good health.AIDS is not a term that is used very much now in the UKand some people living with HIV find it stigmatising.Key pointsdd There are over 100,000 people living with HIV inthe UK.2dd Black African men and women and gay andbisexual men are the groups most affected.dd 1 in 4 people accessing HIV care are over 50.People living with HIV are likely to experienceproblems associated with ageing at an earlierstage and are more likely to have mental healthproblems.dd Over 95% of people are infected through sex.dd You cannot get HIV from everyday care8 NAT HIV: A guide for care providersprocedures, for example washing or movingpeople.dd HIV treatment is now extremely effective andmost people diagnosed on time can expect tohave a normal life expectancy.dd Most people on HIV treatment have a very lowlevel of HIV in their body - this means they areeffectively non-infectious.dd A third of people living with HIV have experiencedstigma and discrimination, half within a healthcaresetting. Stigma remains a key concern for manypeople living with HIV.

1SECTION 1: WHAT EVERYONE SHOULD KNOW ABOUT HIV“Staff are given trainingfrom the HIV nurse at thelocal HIV clinic. Althoughsometimes some staff havehad reservations about caringfor people living with HIV, assoon as they are given propertraining, these disappear.”Care ProviderHIV in the UKThere are over 100,000 people living with HIV in the UK.One in four people living with HIV are undiagnosed anddon’t know that they have the virus.The two groups most affected by HIV in the UK aregay and bisexual men and black African communities.These people can face multiple prejudices related to theirethnicity, sexual orientation and HIV status.The number of people living with a diagnosed HIVinfection who are aged 50 and over has increased inrecent years. In 2013, one in four adults seen for HIV carewere 50 years of age or older.HIV transmissionMyths about how HIV can be passed on are stillwidespread causing unnecessary fear.HIV is passed on through infected semen, vaginal fluids,rectal secretions, blood or breast milk. However, youcannot get HIV when you come into contact with thesefluids if your skin is intact.The most common ways HIV is passed on are throughsex without a condom, or sharing infected needles,syringes or other injecting drug equipment. In the UK,over 95% of people are infected through sex.Treatment and infectiousnessIt is important to understand the impact of HIV treatmenton infectiousness. If someone has been diagnosed withHIV and is doing well on treatment it is extremely unlikelythey can pass the virus on. This is because treatmentsignificantly reduces the amount of HIV in the body andthis reduces infectiousness to a very low level.Clinics can measure the amount of virus in someone’sblood, and when this falls to below 50 copies per millilitrethey are said to have an ‘undetectable viral load’ and areeffectively non-infectious. The vast majority of people ontreatment in the UK have an undetectable viral load.Stigma and discriminationHIV remains a stigmatised condition, often becausepeople misunderstand the way it is transmitted and havemisplaced fear about contracting the virus.One study found that a third of people living with HIVhad faced discrimination, half of which occurred in ahealthcare setting.3 Because of this many people livingwith HIV have concerns about residential and domiciliarycare and what prejudices they may face.For this reason it is particularly important that careworkers are given the knowledge and training to treatpeople living with HIV confidently andwith respect.HIV cannot be passed on through contact with bodilyfluids such as saliva, urine, faeces or vomit. You cannotget HIV from social contact such as touching, kissing,coughing or sneezing. You cannot get HIV from caringfor someone, for example when moving them or washingor dressing them. Nor can people get HIV from sharingfacilities or equipment, for example sharing toilet seatsor cutlery.HIV: A guide for care providers NAT 9

1SECTION 1: WHAT EVERYONE SHOULD KNOW ABOUT HIVTesting for HIVHIV treatmentHIV can be detected four weeks after an exposureincident if the most up-to-date laboratory tests areused (available in all sexual health clinics). HIV is notdetectable immediately after transmission and this shortinitial period, known as the ‘window period,’ is the timein which a test would not detect HIV. If someone hasbeen at high risk of infection they may be recommendedanother test after eight weeks if their initial test resultis negative.HIV treatment has improved beyond recognition in recentyears and is now extremely effective. Many people nowonly need to take one or two tablets a day althoughadherence to treatment (taking it as directed, whendirected) is extremely important. Even missing one dosea month can impact on its effectiveness. Some peopledo experience treatment side effects but these areusually moderate and can be effectively managed.For more information about managing treatment seesection five.You can get a free HIV test in a variety of clinical orcommunity settings including any walk-in sexual healthclinic. You can find out where you can get a test nearyou by entering your postcode in the service finder here:www.aidsmap.com/e-atlas. Self-tests you can buyand use at home are now also available. Waiting times fortest results depend on the type of test, with some testsproviding an immediate result.10 NAT HIV: A guide for care providers

Section 2.Caring for someoneliving with HIV

2SECTION 2: CARING FOR SOMEONE LIVING WITH HIVWhen caring for someone living with HIV it is important to knowhow to treat them in a supportive and responsive way. This sectionattempts to answer the basic questions care workers or providersmay have when supporting someone living with HIV for the first time.How and when to talk about HIVYou may be aware of someone’s HIV status but if they donot mention it, there is no need to bring it up unless it isnecessary in relation to their medical care.Many people living with HIV have experienced stigmaand discrimination and so may feel uncomfortable ornervous talking about their status. They may just feel thatit isn’t relevant to their care.It is also important not to ask someone how theycontracted the virus. How they got HIV (in this casepotentially many years ago) is not relevant to theircurrent care needs and they may not want to share thisinformation with you. Respecting confidentiality is vitaland this is covered in more detail in section three."I am personally committedto making sure our care isappropriate for people livingwith HIV. Residents living withHIV are treated both equallyand as individuals, with nounnecessary additional ‘healthand safety’ procedures orseparate facilities."Care Home ManagerSome people living with HIV will want to disclose andtalk about their experiences. If they do, it is importantto listen to them and give them a chance to speak, notto try to change the subject out of embarrassment orawkwardness about how to respond.To help create a supportive environment, use languagethat will make them feel comfortable. It is usually moreappropriate to talk about HIV rather than AIDS, as thanksto the huge advances in treatment, very few people inthe UK will develop AIDS. Many older people living withHIV will be gay or bisexual men. The term ‘homosexual’Key points for care workersdd There is no need to discuss someone’s HIV statusif they do not wish to do so, unless necessary formedical reasons.dd If someone wants to speak about their status,listen and give them space to do so.dd Always use appropriate language when talking12 NAT HIV: A guide for care providersabout HIV and never ask someone how theyacquired the virus.dd There is no risk of HIV transmission from everyday care procedures – you do not need to useextra precautions when caring for people livingwith HIV.

2SECTION 2: CARING FOR SOMEONE LIVING WITH HIVis now considered out-of-date and can cause offence.Instead, ‘gay and bisexual’ is more accepted. Listen tothe language the individual uses themselves and takeyour cue from them. In addition, make sure that thelanguage you use and forms you provide do not assumethat everyone is heterosexual – so rather than askingabout somebody’s wife or husband, speak about theirpartner.Creating an environment where people living with HIVfeel safe and comfortable is very important. If residentialcare providers are aware of staff or other residents usinghomophobic, racist or stigmatising language they shouldtake steps to address this immediately. Developinga policy on how to handle this situation will ensure aconsistent approach and that all residents can enjoya tolerant atmosphere. Stonewall and Age UK haveguidance on this listed in section 12."I know because of my HIVstatus they were reluctant tohelp me with the shower. Iwould keep asking but theywould just leave me, I keptreminding them but they werereally reluctant."Care Home ResidentWhat do I need to do differently?The answer to this is very little. Of course everyone isdifferent so when providing care to anyone it is importantto consider their individual needs. And there are somespecific requirements around HIV and diet, medication,confidentiality and psychological support that arecovered later in this guide. But in terms of essentialeveryday care there is no need to treat someone livingwith HIV any differently to any other resident or client.This is because there is no risk of HIV transmission fromthe day-to-day activities that take place during residentialor domiciliary care.In fact to do these things would be discriminatoryand an infringement of someone’s rights. For moreinformation about the law and protecting people’srights see section 10.For example, if it isn’t general practice for everyone,people living with HIV should not be given separate ordisposable cutlery or bedding, nor should things they usebe labelled as there is no risk of HIV transmission fromcontact with everyday possessions.When moving, washing, changing dressings or takingsomeone's temperature there is no HIV risk andsomeone living with HIV should be treated in the sameway as anyone else.When cleaning someone's room, bedding or bathroomfacilities no additional steps are required. And there isno need to dispose of things in a different way if theyhave been used by someone living with HIV. Whensomeone leaves or dies, a room does not need to bespecially cleaned or disinfected just because someoneliving with HIV may have occupied it. Sometimes careworkers bathe people living with HIV last so that they canclean the bath thoroughly afterwards. This is completelyunnecessary.Key points for managersAct quickly if staff or residentsare discriminating againstsomeone living with HIV andmake sure you have a policy inplace to deal with this.HIV: A guide for care providers NAT 13

2SECTION 2: CARING FOR SOMEONE LIVING WITH HIV“When I raised my concerns,the manager reacted straightaway and I know now thesame thing won’t happenagain.”HIV Social Worker14 NAT HIV: A guide for care providers

Section 3.Confidentiality

3SECTION 3: CONFIDENTIALITYThe use and storage of personal data to support an individual'scare is an important part of any care provider’s role. Careproviders in both residential and domiciliary settings will haveconfidentiality policies and procedures, based on the DataProtection Act 1998 and related social care guidance andregulations. This section explains why confidentiality is so importantto people living HIV, and how to avoid unintentional breaches.Confidentiality and HIVConfidentiality is important for people living with HIVbecause of the impact breaches can have. Many peoplerespond well if they find out someone has HIV, but thisis not always the case. A breach of confidentiality canlead to unpleasant gossip, negative and discriminatorycomments and information being shared without theconsent of the person living with HIV. HIV remains ahighly stigmatised condition and people living with HIVmay have faced stigma or discrimination in the past.NAT’s recent report on confidentiality in the NHS showedthat healthcare settings are one of the main places wherepeople face discrimination, and this may affect how theyfeel about disclosing their status to organisations or"Things got off to a bad startas all the staff at the homewere informed of my client’sHIV status, although this wascompletely unnecessary. Whenhis neighbours came to visit,the care assistant advisedthem not to let their child seehim because he had HIV."HIV Social Worker16 NAT HIV: A guide for care providersindividuals providing care.4 For this reason, if someonediscloses their HIV status it is important that this is notdisclosed to a third party without their consent.Explaining confidentiality policiesIt is important to discuss confidentiality policies andprocedures with a resident or client so they understandhow any information they provide will be used. Peopleshould be reassured that the information they provide,including their HIV status, will not be shared with anyonewho is not involved in their immediate medical carewithout their consent and there should be a sharedunderstanding of how it will be used. People living withHIV will then be able to make an informed decision aboutwhether and to whom they may wish to disclose their HIVstatus.GPs and disclosureWhilst people living with HIV will have disclosed theirstatus to their HIV specialist clinic where they arereceiving care, they may not have disclosed to othermedical professionals involved in their care.They may have disclosed to their GP but this is notalways the case. Some people can be more reticent ifthey live in a small community where GPs or practicestaff may know their friends or family or if they havepreviously had a bad experience when disclosing to ahealthcare worker. Whilst it is generally advisable fora GP to know someone’s status because of potentialtreatment interactions, it is up to each individual to decideif they disclose. Do not assume that a GP will know abouta patient’s HIV status and never disclose to a GP withoutsomeone’s consent.

3SECTION 3: CONFIDENTIALITYWho needs to know?Care staff that are not directly involved in meeting themedical care needs of someone living with HIV do notneed to know someone has HIV. Sometimes peoplethink that if they are working with someone living withHIV, they have a right to know their status because ofa perceived transmission risk. There is no transmissionrisk and sharing this information would be a breach ofconfidentiality.Staff involved in more general care that does not involvesupervising medication or clinic appointments do nothave any reason to know someone’s HIV status. Thereis absolutely no reason why cleaners, cooks and othergeneral staff should be informed about someone’s HIVstatus and to inform them without someone’s consentwould be a breach of confidentiality.There may be circumstances when a care provider willneed to share someone’s confidential information with acolleague who is, or is about to, provide them with directclinical care to make sure they get the best possibletreatment. However only information which is relevantin that instance should be shared and only if the personliving with HIV consents (either explicitly or throughimplied consent).5 In cases where someone does nothave capacity to consent, this is more complex, but theindividual’s partner or relative or someone who has beengiven power of attorney could provide consent in thesecircumstances.Whilst some administrative staff who deal with recordmaintenance or arranging medical appointments mayneed to know about someone’s status, the samestandards of confidentiality apply to them as to otherstaff. All administrative staff who have access to recordsshould receive training on confidentiality and the samestrict expectations of confidentiality should apply to themas to other health and social care workers."The person living with HIV isin control of their information.Apart from their care manager,nobody else has access to theirfile. The care manager has toget written consent from theperson living with HIV beforesharing this information. Itis then up to each individualwhat information they chooseto give to the care workerswho come to their home."Home Care ProviderSome people will feel comfortable talking about theirHIV status with other residents or with care workers whocome to their home. However, disclosing this informationis entirely up to the individual concerned. It wouldnever be appropriate for all residents to be informedof someone’s HIV status. Don’t assume that becausesomeone was happy to tell you about their status, thatthey would be happy for you to tell others.Keeping records confidentialProviders will obviously need to keep records forpeople they provide care for and so it is important thatappropriate processes are in place to safeguard people’sconfidentiality. There should be a clear policy on who hasKey points for care workersdd Do not assume that other care workers, theGP, friends, family or neighbours know about aperson’s HIV status – always check with the clientbefore discussing it with a third party.dd Make sure people’s treatment and medicalappointment are managed appropriately so asnot to disclose their status to others.dd Make sure you understand your employer’sconfidentiality policy and what this means interms of storing records securely.HIV: A guide for care providers NAT 17

3SECTION 3: CONFIDENTIALITYaccess to records and records should never be left out oraccessible on a computer for others to see. This includesrecords kept in an individual’s home – care should betaken so they are not left somewhere visible to visitors.In many cases, an individual’s care plan may not needto include any reference to their HIV status. If the careprovided simply relates to assistance with washing anddressing or food preparation there is no need to includeany details of the individual’s HIV status.Confidentiality breachesConfidentiality can be difficult to manage. Sometimesconfidentiality breaches occur when people are actingwith the best of intentions. For example when someonethinks they are doing the right thing by tell

HIV: A guide for care providers NAT 3 Contents Introduction 06 Section 1: What everyone should know about HIV 07 Section 2: Caring for someone living with HIV 11 Section 3: Confidentiality 15 Section 4: HIV and infection control 19 Section 5: Medical care 23 Section 6: Psychological support 26 Section 7: Relationships and sexual health 28 .