Standards of care for people living with HIV

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  • This Guidelines for Nurses summary covers the key points for primary care. Please refer to the full guideline for the complete set of recommendations, measurable and auditable outcomes, and rationales for each standard

1. Testing, diagnosis and prevention

2. Person-centred care

3. HIV outpatient care and treatment

4. Complex HIV care

5. Sexual and reproductive health

6. Psychological care

7. HIV across the life course

8. Developing and maintaining excellent care

 

1. Testing, diagnosis and prevention

1a. Testing and diagnosis

  • People attending healthcare services (primary, secondary, and tertiary care) should be offered diagnostic tests for HIV in accordance with current national guidance

Quality statements

Testing

  • Routine offer of HIV testing should be made by competent healthcare professionals to all attendees in the following settings and clinical scenarios:
    • contraceptive and sexual health services
    • abortion services
    • drug-dependency programmes including:
      • injecting equipment providers, i.e. needle exchange services, opiate replacement treatment services
    • antenatal services
    • services for tuberculosis (TB), lymphoma and hepatitis B and C
    • all people:
    • with symptoms consistent with primary HIV infection
    • presenting with a clinical indicator condition specified in the UK National HIV Testing Guidelines
    • entering or transferring between prison services
    • at reception into immigration removal centres
  • All those who present to medical and mental health services with identifiable risk factors (behavioural and geographical) should be offered an HIV test in accordance with national guidance
  • Annual testing should be offered to people in groups or communities with a high rate of HIV, and more frequently if they are at ongoing high risk of exposure (e.g. men who have sex with men [MSM] and people who use drugs). MSM should have HIV and other sexually transmitted infection tests at least annually, and every 3 months if they are accessing pre-exposure prophylaxis (PrEP) and or having condomless anal sex with new or casual partners. People who use drugs should also have HIV tests at least annually, and every 3 months if they are currently sharing injecting equipment
  • In areas where the prevalence of diagnosed HIV is 2:1000 or greater, all adults admitted for secondary general medical care, including emergency departments, intensive care units and mental health services should have routine, opt-out HIV testing included in their initial health checks and medical work-up
  • In areas where the prevalence of diagnosed HIV is 2:1000 or greater, all adults registering with a general practice should have routine, opt-out HIV testing included in their initial health checks and medical work-up, and subsequently all those having a blood test at their general practice should be offered an HIV test if they have not had one within the last year
  • All local authorities’ commissioning services should take into account the demographic of their local HIV epidemic in planning services, particularly ensuring that high-risk groups who do not routinely access NHS services have outreach and community-based services funded for testing appropriate for their needs
  • Where an HIV test has been recommended and declined, this should be recorded in the medical record. Reasons for declining a test should be explored. Written information about HIV testing and alternative testing options can be given to the patient and testing should be re-offered at the next earliest opportunity
  • Point-of-care testing may be appropriate in a number of scenarios:
    • at community testing sites
    • in clinical settings where a rapid turnaround of test results is desirable
    • for urgent source testing (e.g. following a needlestick injury)
    • in situations where it would be difficult to give people their results (e.g. if they are unwilling to leave contact details)
    • if a person declines a venous blood sample
  • At the time of a point-of-care test, people should be informed that confirmatory serological testing and contact information will be needed if the test is reactive
  • Self-sampling and self-testing kits should be offered as an additional approach to HIV-testing services. Validated tests should only be available with appropriate support and access to clinical care
  • When primary HIV infection is a potential diagnosis, diagnostic HIV assays that can simultaneously identify both antibodies to HIV and HIV p24 antigen (fourth-generation assays) should be used in addition to an HIV viral load
  • The time between performing an HIV test and the results being available to the patient should be reduced to a minimum, preferably within 48 hours, compatible with the assays available and the context in which the test is carried out

Children

  • All children (defined as those who have not yet reached their 18th birthday) born to people living with HIV should be assessed for risks of vertical transmission
  • Testing children at risk of HIV acquisition should be discussed with at least one of the child’s parents or legal guardians, and appropriate testing and follow-up organised with paediatric colleagues

Diagnosis

  • Services that offer diagnostic testing for HIV should have an agreed pathway into specialist HIV care for people who are diagnosed HIV positive
  • People who have a new diagnosis of HIV should expect to have their HIV status fully assessed by appropriately trained staff within 2 weeks of receiving an HIV-positive test result (see Standard 8a)
  • People who have a new diagnosis of HIV and have symptoms and/or signs potentially attributable to HIV (including those of primary infection) should be referred for urgent (within 24 hours) specialist assessment
  • People who receive their diagnosis within a hospital setting should expect to be reviewed by appropriately trained staff within 24 hours if their admission may be HIV-related, or within 2 weeks as an outpatient if unrelated to HIV (see Standard 8a)
  • Partners of people who test positive should receive a prompt offer and recommendation of an HIV test through partner notification procedures

1b. Prevention

  • All sexually active people should be made aware of, and have access to, a tailored and comprehensive package of HIV prevention options. This should include condoms, open access to free HIV and sexually transmitted infection (STI) screening, STI treatment, partner notification, behavioural interventions and the use of ARVs as post-exposure prophylaxis (PEP) and PrEP and treatment as prevention, where appropriate

Quality statements

  • People at high risk of HIV acquisition (e.g. MSM, people who use drugs) and those living with HIV should be made aware of the range of interventions that has been shown to reduce the risk of HIV transmission, including the risks and benefits
  • An assessment of the risk of transmission to others should be made at HIV diagnosis and subsequent visits. People who are assessed as being at risk of transmission to others should be offered one-to-one risk reduction (see Standard 5a)
  • HIV services should promote condom use as a safer-sex strategy and ensure that a range of condoms (male, female, various sizes and types) and lubricants is provided and available for people living with HIV
  • HIV services should raise awareness of the role of STIs in the context of HIV transmission and acquisition
  • People living with HIV should be made aware of the evidence that the risk of HIV transmission from a person living with HIV, who is on antiretroviral therapy (ART) and has achieved an undetectable viral load in their blood for at least 6 months is negligible
  • Pre-exposure prophylaxis (PrEP) should be considered in all HIV-negative people on a case-by-case basis, based on the BHIVA PrEP guidelines
  • PrEP should be delivered as part of a comprehensive package of HIV/STI prevention interventions, based on an individual’s circumstances. These might include condoms and lubricant, safer-sex counselling, frequent STI check-ups and treatment, and regular HIV testing

2. Person-centred care

2a. Stigma—equitable and non-discriminatory care

  • All people living with HIV should be provided with equitable and non-discriminatory care across all healthcare settings including those outside sexual health and reproductive services

Quality statements

  • Staff across all health and social care services, including general practitioners and dentists, mental health, social care workers, employees of housing and support services, should receive basic information and training on blood-borne viruses (BBV) and access to resources on treating people living with HIV, including trans people and people who use drugs
  • Staff across all healthcare services should be provided with training on how to identify the impact and effects of stigma, including what it is, how it is manifested, the consequences on mental well-being and behaviour, as well as how issues can be addressed practically
  • Staff involved in HIV testing, diagnosis and treatment should have access to training and information that explicitly addresses the stigma and prejudice faced by people in key populations, in particular on the specific needs of trans people and people who use drugs, designed to challenge preconceptions and stigma still experienced by members of these groups
  • Healthcare services should ensure that staff members are aware of the confidential nature of people’s medical records, including their HIV status
  • People living with HIV should be made aware of how they can raise concerns if they are unhappy with their care or have experienced stigma and should be supported in doing so. They should be reassured this will not affect access to or the standard of their care

2b. Self-management and peer support

  • In keeping with the management of other long-term health conditions, people living with HIV should be enabled to optimise self-management and access peer-support opportunities to promote their physical and mental health, and overall well-being

Quality statements

  • People living with HIV should have equitable access to services that promote self-management of HIV including provision of support and information:
    • about HIV, treatment, healthy living with HIV, diet and lifestyle, and optimisation of general health including rehabilitation services
    • on maximisation of entitlement to health services and support
    • to enable people to optimise their entitlement and access to financial and housing support, and to optimise their ability to maintain/gain/regain employment
  • HIV services should maximise the use of peer support as set out in the National Standards for Peer Support in HIV

2c. Participation of people living with HIV in their care

  • People living with HIV should be actively involved in decisions about their own health and social care. People who use HIV clinical and support services should be actively involved in the design, planning, delivery and review of these services. Ensuring active engagement in decision-making may require support and resources for both people living with HIV and service providers
  • Service providers should be able to demonstrate their commitment to participation through identification of strategies, pathways and resources for both individual engagement in decision-making and community engagement in service provision

Quality statements

Decisions about individual treatment and care

  • Services should place the patient at the centre of decision-making and ensure that assessment and delivery of care addresses both clinical and patient-reported outcomes and priorities
  • Services should ensure that decisions made together by people living with HIV and practitioners follow national guidance and professional standards for shared decision-making in all aspects of care
  • Services should ensure that people living with HIV have access to written information about investigations, ART and other aspects of their HIV treatment and care, or are able to provide the equivalent orally if this is preferred or necessary. At a minimum, services should ensure access to written information about:
    • the purposes and methods of monitoring CD4 count and viral load, the frequency, and what these tests mean
    • how ART works, including the importance of adherence and the risks and benefits of treatment
    • the choices for ART, including potential side effects from individual drugs and how these will be managed if they occur
    • information about the importance of drug interactions, particularly in relation to comorbidities and other long-term conditions
    • information about improving general health outcomes
  • People living with HIV should expect information to be available in a language that is understandable and in a format relevant to individual needs, including age and literacy level
  • Developing capability for shared decision-making should be encouraged and facilitated in clinicians, people living with HIV and the community sector, in particular for those whose background circumstances may compromise their full participation in evaluating options for treatment and care
  • Developing capability for shared decision-making should recognise the structural disadvantages experienced by some groups of people living with HIV (e.g. people who use drugs, those with uncertain migration status or those with communication challenges). Developing tools to address this disadvantage should be a priority for services providers

Planning services

  • To ensure that services are fit for purpose and responsive to users’ needs, opportunities (formal and informal) should be available for people living with HIV, individually or through the community sector, to be involved in service design, planning, delivery and review. Opportunities for service-user involvement should be multiple, varied and widely publicised
  • People living with HIV should expect to be able to provide feedback, ranging from comment on individual consultations to involvement in service commissioning, as well as the chance to give named and anonymous input into service design, delivery and performance review at local, regional and national level. Their involvement should remain incorporated in national guidelines
  • Information related to consultations about service planning and delivery should be published in appropriate physical (e.g. public notice boards) and virtual (e.g. service provider’s web site) locations
  • Formal structures for service design and review should always factor in adequate time for meaningful service-user input and include community representatives who should, as far as is practical, reflect the diversity of the population served. There should be transparent mechanisms for selection of community representatives and for the wider involvement of people living with HIV in these structures
  • Practitioners and managers within HIV services should be supported to acquire the skills and resources needed for genuine and meaningful engagement and consultation with service users. There should be due recognition that people living with HIV are also part of the clinical, social care and service workforce

2d. Well-being

  • Well-being is specifically that aspect of health that is concerned with the psychological, social and physical resources an individual can draw on to meet their life challenges and to increase their happiness and quality of life. People living with HIV should receive care that takes account of and enhances their well-being beyond their physical health and life expectancy

Quality statements

  • Services should ensure that:
    • issues of well-being continue to be incorporated into clinical and care practices in transparent ways
    • a person-centred approach is taken in providing care to ensure that well-being for each person is holistic and meaningful
    • well-being is a consideration when developing, delivering and assessing services and policies in health and social care for people living with HIV
  • Pressure on the cost and time available to provide clinical services does not result in the erosion of well-being initiatives or considerations
  • Best practice service provision that incorporates concerns of individual and community well-being should be broadly communicated

3. HIV outpatient care and treatment

3a. Access to and retention in care

  • People newly diagnosed with HIV, wherever they are tested, should be offered a full assessment, carried out by an appropriately trained practitioner with specialist expertise in HIV, at the earliest possible opportunity and no later than 2 weeks after receiving a positive HIV test result
  • Services should have mechanisms in place to ensure all people living with HIV are retained in specialist care

Quality statements

Access

  • People newly diagnosed with HIV should have the initial investigations and assessments recommended in BHIVA guidelines and be able to access psychological and peer support within 2 weeks of receiving their HIV positive result
  • People newly diagnosed with HIV should be informed of their CD4 count and have the opportunity to discuss management, starting ART and opportunistic infection prophylaxis (if indicated) within 2 weeks of this initial assessment (i.e. within 1 month of initial diagnosis)
  • People living with HIV should expect to have access to appropriately trained HIV specialist professionals for opportunities to discuss emotional, psychosocial and partner notification issues, as well as access to community support, especially when newly diagnosed with HIV (see Standard 8a)
  • HIV outpatient units should have an agreed pathway to enable access to peer support
  • HIV outpatient units should have an agreed pathway to enable access to financial and housing advice and support

Retention

  • HIV services should have mechanisms to identify and follow up people registered with their service, who become disengaged from care, who miss appointments or run low on medication
  • HIV services should have mechanisms in place to explore the reasons for disengagement when people living with HIV re-engage with services and where possible address identified reasons for disengagement
  • People living with HIV should expect to have access to peer and psychological support when required, particularly when facing a significant life event such as starting/changing treatment, major illness, pregnancy and menopause
  • If a patient is dissatisfied with the care provided by an individual clinician, an alternative should be offered (including referral to another centre if necessary or the dissatisfaction is with the service in general) after exploration of the basis for concerns and addressing as appropriate
  • HIV services should have agreed processes for the safe transfer of care, both from the sending and receiving clinical services, with timely transfer of appropriate information between teams:
    • patients who transfer their care to another centre should have a full clinical summary provided from their former to their new treatment centre within 2 weeks of this being received by their former centre of care. This summary should contain, as a minimum, the information outlined in the BHIVA investigation and monitoring guidelines
    • the transferring centre should ensure the provision of adequate medication to cover the transfer period

3b. Outpatient care

  • People living with HIV attending an outpatient HIV service should have their HIV monitored and treated safely in accordance with national guidance

Quality statements

  • People living with HIV attending specialist HIV outpatient services should receive care that follows national guidelines for the diagnosis, treatment and monitoring of HIV and its complications
  • People living with HIV should receive care in appropriate designated facilities that guarantee privacy and confidentiality
  • Specialist HIV outpatient services should provide easy access to multidisciplinary support, in particular: specialist nursing; sexual health services; specialist adherence support; specialist HIV pharmacy advice; dispensing services; dietetics; mental healthcare; counselling; and peer and advocacy support. There should be ready access to, or information about, services that can provide advice about social care and benefits entitlements
  • The standard of care delivered to people living with HIV should be the same, whatever their circumstances. People in prisons or in other closed settings, such as detention centres have the right to the same quality of care as other people living with HIV. Services should seek to provide flexible care arrangements for particularly vulnerable people (e.g. homeless people and people who use drugs)
  • People living with HIV should have ready access to health promotion and screening services as for the general population, but providers must recognise and act where more frequent screening is recommended in national guidelines
  • People living with HIV should have access to services to safely manage comorbidities, in collaboration with primary care and/or the appropriate non-HIV specialist team. Services should seek to agree local arrangements for the management of comorbidities where the roles and responsibilities of different agencies are clear, and lines of communication are robust. Clear, agreed pathways should exist for entry into more specialist services where people have less common or more complex problems
  • Services providing HIV outpatient treatment and care should have a designated HIV inpatient unit(s) to which patients requiring admission to hospital with serious HIV-related pathology can be referred and where advice can be obtained 24/7
  • Where antiretroviral treatment choice is affected by resistance, drug interactions or comorbidities, this should be recognised and discussed at the appropriate specialist level, including representation from the relevant professional disciplines as specified in national guidelines. These arrangements may be physical or virtual
  • There should be evidence that patients have been offered a copy of letters and that this was sent to those who wish it

3c. Antiretroviral prescribing

  • People living with HIV should be prescribed antiretroviral drugs by an appropriately qualified clinician and receive treatment with such drugs and monitoring that follow current national guidance

Quality statements

  • ART should only be prescribed by an appropriately qualified practitioner (see Standard 8a)
  • ART should be prescribed in line with national guidance and best available evidence, in partnership with each patient, taking into account their wishes and concerns to inform shared decision-making
  • People living with HIV should have access to adherence support, which should be provided by staff with appropriate skills, when starting or switching ARVs and at any time when viral rebound or suspected low adherence occurs. There should be evidence of adherence assessment as per national guidelines. Any patient reporting missed medication or experiencing viral load rebound should receive adherence support, noting the evidence of the contribution of psychosocial factors to adherence and the potential benefit of peer support
  • Information relating to past ART prescribed should be recorded in the patient’s clinical records. This information, including reasons for previous treatment changes should be as accurate as possible. When patients transfer into the service, there should be evidence of an attempt to obtain this information from the previous care provider as well as baseline and any further resistance tests
  • A drug history should be undertaken and documented each time ART is prescribed by either the prescriber or an HIV specialist pharmacist. Clinical records should include details of all prescribed medication from primary care, the HIV service, any other specialist service, over-the-counter medication, herbal medication and recreational drugs, with an assessment for drug—drug interactions
  • Prescribers of ART should be able to readily access and use web-based information and decision-support tools to support best prescribing practice, and to help reduce medication errors. Patients should be encouraged to access the same or similar tools to be able to check and monitor their own medications
  • Antiretroviral prescriptions should be clinically verified by an HIV specialist or an adequately trained pharmacist, prior to dispensing, with respect to appropriateness with other prescribed medication and comorbidities
  • Mechanisms should be in place to alert primary care to potential drug—drug interactions and for primary care to verify non-HIV-related prescriptions issued to people living with HIV
  • HIV services should provide pharmacist- and nurse-led interventions, including outreach in the local community, to provide flexible care arrangements supporting ART prescribing for patients who have difficulty attending clinic appointments
  • People in prisons or other detention facilities should have a regular and continuous supply of ARVs alongside adequate access to an HIV specialist, and continuity of both treatment and access should be maintained when being moved between facilities. On leaving these facilities they should be provided with at least 1 month’s supply of medication to allow continued adherence while making their own arrangements for a further supply and a booked follow-up appointment with an HIV provider
  • HIV services and patient representatives should work in partnership with commissioners/health boards to develop strategies to maintain cost-effective prescribing
  • HIV services have a duty to participate in regular monitoring of efficacy and safety of ARV prescribing locally, regionally and nationally

4. Complex HIV care

4a. Inpatient care

  • People with proven or suspected complications of HIV or its treatment who require admission to hospital should receive equitable and rapid access to care by appropriately trained staff either within a consultant-led HIV specialist multidisciplinary team or, when not feasible, within an acute medical team supported by immediate and continued engagement with specialist HIV expertise and advice
  • Please refer to the full guideline for the quality statements

4b. Comorbidities, co-infections and cancers

  • People living with HIV should be able to access a comprehensive range of specialist services to manage comorbidities, co-infections and cancers as required. Establishment of clear protocols and agreed pathways for care between primary and secondary care are essential for safe delivery of services

Quality statements

Comorbidities

  • People attending HIV outpatient clinics should undergo regular screening, as set out in the BHIVA guidelines in order to detect cardiovascular, renal, liver, bone and other comorbidities
  • People living with HIV should have timely access to diagnostic tests required for the detection and investigation of comorbidities
  • People living with HIV should have access to services to manage comorbidities safely and effectively either within the HIV service or in primary care and/or non-HIV specialist teams where appropriate
  • Clear, agreed pathways should be developed to facilitate referral to local or regional services for those with complex and/or less common comorbidities

TB

  • People with newly diagnosed HIV should undergo full clinical assessment to exclude active TB
  • People living with HIV who are from high and medium TB incidence countries should undergo testing for latent TB
  • Access to rapid TB diagnostic tests and drug sensitivity testing should be available
  • Intensive partner notification services should be available
  • People being treated for HIV and TB should be cared for by a specialist multidisciplinary team that has experience managing TB/HIV co-infection. Best practice infection control should be in place
  • People with rifamycin-resistant/multidrug-resistant TB should be managed in conjunction with teams with expertise in the management of drug-resistant TB
  • People with TB co-infection should be managed according to BHIVA guidelines for the management of TB/HIV co-infection in adults

Hepatitis B and C

  • People newly diagnosed and those living with HIV should be screened for co-infection with hepatitis B and C as per BHIVA guidelines
  • People who are co-infected with either hepatitis B or C should be managed according to national guidelines
  • People co-infected with hepatitis C (HCV RNA positive) should be referred to a specialist viral hepatitis clinic for further investigation and treatment with direct-acting antivirals (DAAs)
  • People with cirrhosis should be referred to a hepatology clinic for long-term monitoring and management

Cancer

  • People who are diagnosed with a malignancy should be referred to a centre with expertise in its management
  • Management of people living with HIV who are diagnosed with a malignancy should be in line with the BHIVA Guidelines
  • Clinical networks supporting regional centres of excellence for the treatment of both AIDS-defining and non-AIDS-defining cancers should be developed
  • People with AIDS and non-AIDS-defining cancers should be offered the standard of care given to HIV-negative patients
  • Potential interactions between ART, opportunistic infection prophylaxis and cancer therapy should be considered
  • Those patients with a poor prognosis should be referred to the palliative care team (see Standard 7d)

4c. Supporting people with higher levels of need

  • There is evidence that people living with HIV are more likely than the general population to have multiple long-term conditions, to have poorer mental health, poorer sexual health and to have problems with alcohol and substance use. These issues can lead to an individual having a collection of diagnoses that might be seen as a marker of complexity or increased need
  • Please refer to the full guideline for the quality statements

5. Sexual and reproductive health

5a. Sexual health

  • People living with HIV should be:
    • supported in establishing and maintaining healthy sexual lives for themselves (and their partners)
    • supported to protect themselves (and others) from acquiring new STIs, with access to regular screening and prevention interventions for all STIs
    • offered support from staff competent in partner notification with expertise relevant to their individual circumstances. This should enable their personal contacts who are at risk of HIV, including their children, to access timely HIV testing with appropriate consideration of confidentiality and safety
  • People living with HIV who may be at risk of drug use associated with sex (including chemsex), infectious hepatitis, and sexually transmitted enteric infections (STEI) should be identified and offered support, advice and interventions

Quality statements

Sexual health

  • People living with HIV should have easy access to sexual and reproductive health services offering STI screening, treatment and advice according to national guidelines. If this is not provided within the HIV service there should be clear, agreed pathways to sexual health services, ideally with rapid access to facilitate testing and treatment
  • Sexual health assessment should occur at least annually for people living with HIV
  • Syphilis serology should be included in the baseline investigations at the time of initial HIV diagnosis and at regular intervals according to risk thereafter (3–6-monthly or annually, depending on risk)
  • People living with HIV should be:
    • able to access preventative vaccines for hepatitis A and B, and HPV according to national guidelines and commissioning arrangements, as well as for other STIs, as they become available, and this should be documented
    • made aware of the range of interventions that has been shown to reduce risk of onward HIV transmission
  • People who are not on effective ART (for whatever reason) or not yet undetectable should be made aware of the effectiveness of PrEP and PEP for HIV-negative sexual partners according to risk factors

Contacts at risk of HIV

  • The need for partner notification (PN) support and guidance should be assessed and offered at the time of HIV diagnosis, and if HIV viral load is >200 copies/mL. This should be provided via sexual health services or within the HIV service by those with sufficient expertise, in line with ‘HIV partner notification for adults: definitions, outcomes and standards’
  • People living with HIV should be offered written and verbal information that is both culturally and age-appropriate about prevention of HIV transmission, including mechanisms for partners to access PrEP and PEP if relevant
  • The risk of onward transmission should be assessed and discussed with people living with HIV, and where necessary risk-reduction interventions based on a theory of behaviour change, such as motivational interviewing and/or a risk-reduction support group should be offered (this includes all those at high risk of STIs)
  • People living with HIV should be aware of the importance of avoiding future STIs to which they may be more susceptible, and if acquired may make them more infectious to others in the context of underlying HIV
  • People who have been diagnosed HIV positive should be made aware of the legal position in relation to HIV transmission and how to protect themselves from prosecution; this should occur (and be documented) at the time of their initial diagnosis and subsequently as indicated

5b. Reproductive health

  • People living with HIV should be able to access expert advice and services to enable safe reproductive health, an integral part of HIV care: these include contraception, pregnancy planning and spacing, fertility services, access to abortion services (or referral and support to attend if services are unavailable) and specialist multidisciplinary obstetric services to ensure a healthy infant and woman. Additionally, as women approach the end of their reproductive lives, it is crucial that issues related to the menopause and post-reproductive health are managed to maximise health and minimise the risk of cardiovascular and other adverse events

Quality statements

  • The reproductive health needs of people living with HIV should be addressed by the availability of expert counselling and support within HIV services
  • People living with HIV should have access to accurate information about the full range of contraceptives and pregnancy choices, including specialist advice on potential drug interactions. This should be available within the specialist HIV unit, and pathways should be developed with dedicated local contraceptive services (with knowledge of the issues pertaining to HIV) for provision of contraception
  • In accordance with the BHIVA/BASHH/FSRH sexual and reproductive health guidelines, management of menopause should be in primary care wherever possible, with close liaison with HIV services. Pathways with specialist menopause services should be established for complex cases
  • People living with HIV should have access to accurate information about the menopause (including symptoms and management options) within the clinic
  • People living with HIV should have access to accurate information and support for:
    • safe conception, including pre-conception advice for themselves and their partners within their specialist HIV unit
    • pregnancy choices, including abortion, within their specialist HIV unit
  • People living with HIV who require investigation and treatment for infertility should be able to access local or regional fertility/conception services through agreed pathways
  • Centres with obstetric units need explicit, agreed pathways both to ensure access to immediate HIV testing for labour presentation, the appropriate handling of HIV serology results identified through the antenatal screening programme and to enable those with HIV-positive results rapid consultation with the HIV and pregnancy multidisciplinary team (outlined below)
  • Appropriate timelines for review by the HIV and pregnancy multidisciplinary team are:
    • within 10 working days from the date of the initial HIV-positive result: for an asymptomatic pregnancy, newly diagnosed HIV positive, booking before the end of the first trimester
    • within 5 working days of the initial HIV-positive result: for an asymptomatic pregnancy, newly diagnosed HIV positive, booking after the end of the first trimester or if any interventional diagnostic procedures are planned
    • on the same day: for a pregnant woman, newly diagnosed HIV positive, who has HIV-related symptoms, or is within days of the expected delivery date
    • immediately: for a pregnant woman, newly diagnosed HIV positive, or with a new reactive point-of-care test in labour
  • The management of pregnancy, childbirth and the immediate postnatal period should be in line with current national guidelines and undertaken by a specialist multidisciplinary team (to include obstetrician, HIV specialist physician, specialist midwife, specialist HIV pharmacist and paediatrician and ideally peer support where available) with expertise in HIV and pregnancy. Designated individuals within an organisation or network should be identified
  • People living with HIV should have access to accurate information on the full choice of postpartum contraceptives, recognising that barrier methods will also protect against STIs, and these should be accessible immediately postpartum
  • Provision of ART in pregnancy is within the scope of an outpatient HIV unit, but birth plans and plans for paediatric care should be managed in collaboration with obstetric services and local/regional paediatric HIV teams
  • Services should ensure that information on ART and its risks and benefits supports the key decision issues of whether to start, change or cease treatment, using ART during pregnancy, and the impact of treatment to protect sexual partners (see Standards 2b, 3c and 5a)
  • People living with HIV should have access to the full range of interventions that has been shown to reduce the risk of onward HIV transmission to their child, including provision of free infant formula milk for those who are unable to afford it
  • Appropriate counselling, monitoring and support, as per current national guidelines, should be available for people making an informed decision to breastfeed their infants
  • People living with HIV who have children with HIV should be offered the option of combined outpatient family care, allowing treatment of adult(s) and children in the same visit
  • People living with HIV should have access and/or referral to peer support as outlined in ‘National Standards for Peer Support in HIV’, particularly during pregnancy

6. Psychological care

  • People living with HIV should receive care and support that assesses, manages and promotes their emotional, mental and cognitive well-being and health, and is sensitive to the unique aspects of living with HIV

6a. Emotional well-being

Quality statements

  • The potential burden of living with and managing a chronic illness should be routinely monitored for people living with HIV
  • All people living with HIV should have access to peer and psychosocial support, and advice according to national standards. There should be agreed pathways in place for those with more serious psychological or cognitive difficulties, which ensure early detection of the problems and prompt referral to appropriate services
  • Peer support should be discussed and made available to all people living with HIV, and form part of their clinical care pathway options

6b. Mental health

Quality statements

  • The mental health needs of people living with HIV should be screened on an annual basis and following potential trigger events, including a review for any symptoms of: depression, anxiety, post-traumatic stress, sleep difficulties, addictions, self-harm and suicidal thoughts, with timely referral to appropriate services as required
  • Referral pathways between HIV and mental health services (including addiction services) should be clearly defined, with clear and effective communication to coordinate care, with the person living with HIV included in this whenever possible
  • The mental healthcare professional working with someone living with HIV should provide evidence-based care for the problem(s) identified in a way that maximises the person’s choice
  • The mental healthcare professional working with someone living with HIV should have up-to-date HIV-specific knowledge and cultural competencies (including lifespan and demographic variables, and antiretroviral psychotropic side-effects and interactions), access research literature, training, supervision or consultation as necessary

6c. Cognitive function

Quality statements

  • People living with HIV should be questioned annually for symptoms of cognitive or memory decline
  • If cognitive functioning symptoms are reported, and other likely causes such as depression excluded, then further screening and potentially full neuropsychological assessment by a qualified practitioner should be offered
  • If cognitive difficulties are identified, then a detailed HIV-neurology review should be considered, and rehabilitation strategies/services should be offered

7. HIV across the life course

7a. Young adults and adolescents living with HIV

  • Adolescents, as defined by WHO, include all young people aged 10–19 years, and all young people aged 20–24 years. The Standards refer to young adults and adolescents living with HIV, regardless of mode of transmission route and cared for within adult services or transitioning. For adolescents within paediatric care, please refer to the Children’s HIV Association (CHIVA) Standards, which should also be used for transition

Transition of care from paediatric to adult services

  • Young people should have access to a formal transition process as they move from children’s to adult HIV services and this should occur over a period of time and take into consideration the young person’s needs, development, maturity, any specific learning or physical disabilities and psychosocial needs

Access to care

  • Young adults and adolescents living with HIV should have access to HIV care and additional support that is accessible, young-person friendly and meets ‘You’re Welcome’ accreditation standards

Sexual health

  • Young adults and adolescents living with HIV should have easy access to sexual healthcare and contraception services including the provision of long-acting reversible contraception (LARC)

Management of ART

  • ART should be individualised to take into account the specific needs of young adults and adolescents with respect to their physical and neurocognitive development and psychosocial needs

Quality statements

Transition of care from paediatric to adult services

  • All young adults and adolescents living with HIV should have an individualised transition plan in line with national guidance
  • Services caring for adolescents living with HIV require a named lead for transition in both paediatric and adult care
  • Adolescents living with HIV should meet their adult healthcare providers prior to transfer
  • Prior to transfer each adolescent requires a comprehensive medical and psychosocial summary

Access to care

  • Clinics providing care to young adults and adolescents living with HIV should meet ‘You’re Welcome’ accreditation standards
  • Clinics should be provided at convenient times, including clinics after school, college or work, and in easily accessible locations if possible
  • Feedback about the service should be actively sought and should be acted on
  • Young adults and adolescents living with HIV should have access to mental healthcare including psychological support
  • Young adults and adolescents living with HIV should have access to peer support, whether directly provided within clinic or through referral to external agencies

Sexual health

  • Young adults and adolescents living with HIV should have access to sexual health and contraception services within clinic or via agreed referral pathways to these services
  • Young adults and adolescents living with HIV should be assessed at least annually for signs of sexual exploitation and other vulnerabilities in line with above recommendations
  • Young adults and adolescents should be taught how to protect themselves and others from acquiring STIs. This should include discussions regarding ART as prevention, including discussion that the risk of HIV transmission from a person living with HIV, who is on ART and has achieved an undetectable viral load in their blood for at least 6 months is negligible (see Standard 1b)
  • Young adults and adolescents should be informed about the indications for PEP and PrEP in sexual partners, for example, where adherence is suboptimal or viral load is detectable
  • Young adults and adolescents living with HIV should be made aware of the legal position in relation to HIV transmission, and how to protect themselves from prosecution, this should occur (and be documented) at the time of their initial diagnosis and subsequently as indicated

Management of ART

  • Young adults and adolescents living with HIV require optimisation of bone health with vitamin D measurement and supplementation and substitution of tenofovir with abacavir, if HLA-B5701 and resistance assays allow, or with tenofovir alafenamide (TAF) as per NHS England guidance. Young adults and adolescents living with HIV require optimisation of mental health and avoidance of ARV agents associated with CNS toxicities is recommended
  • Regimens with high a genetic barrier to resistance should be considered for young adults and adolescents living with HIV initiating or restarting therapy
  • Young adults and adolescents living with HIV should have documented adherence assessment at each clinic and access to adherence support

7b. Early to middle adulthood

Quality statements

  • Adults with perinatally acquired HIV are at risk of poor health outcomes that differ from those who acquired HIV as adults. Services should be able to assess and manage the full range of conditions that can present
  • For those aged 25–65 years, education, training and employment are key elements of health and well-being. It is important that the impact of HIV on these is assessed especially at critical points such as at HIV diagnosis, ART commencement, inpatient care, co-infection diagnosis or treatment
  • Where appropriate, continuity with education, training and employment should be supported, especially through periods where people living with HIV have increased vulnerability
  • Where continuity is not appropriate, care providers should provide support to help people maintain adequate income, housing and social support. This support will include providing timely care summaries detailing health status as well as linking people to community and other support services
  • Care providers should support people living with HIV and act as their advocates if there is evidence that they are being discriminated against in education, training or employment on the basis of HIV
  • The majority of people living with HIV in these age groups are in employment and have good health. Services should be structured in such a way as to minimise the time that people need to take off work to undertake their routine care. Important features of such care for stable patients includes 6-monthly visits (including 6-monthly ART prescriptions), and where possible remote access (such as through internet, telephone) for booking, results and results management, and emergency prescription requests
  • Services need to be responsive when people on a stable, non-complex pathway develop one or a number of complexities. Competent assessment and management needs to be available either in-service or by established referral pathways
  • Compact (including single tablet) regimens are reported to support adherence in some people in some settings including in those undertaking frequent work-related travel, and those sharing accommodation where HIV status has not been disclosed. Commissioning guidance that allows some flexibility to individualise regimens where there is indication of benefit should be available
  • Supporting healthy lifestyles through the young to middle adult years is especially important and potentially has an important impact on health in later years. Key elements relate to smoking, drug and alcohol use, sex, diet and exercise. These parameters should be regularly assessed, and people supported to modify behaviours that improve their health. Support will range from providing information through to short interventions (e.g. motivational interviewing), and referral to specialist services (e.g. smoking cessation, drug and alcohol services and dietetics)

7c. Older age

7d. Palliative care

  • Palliative care is a core component of any health service, ensuring that we optimise quality of life and relieve distress in the face of serious, advanced illness. There is never ‘nothing we can do’– palliative care ensures that the individual and their family are supported, receive appropriate care that meets their needs and preferences, and do not experience unnecessary suffering

Quality statements

Communication

  • Information should be shared in a manner and at a pace in line with patient preference
  • Communication should be recognised as an ongoing process as needs, preferences and priorities change
  • The specific information that has been shared should be recorded to ensure the whole team understand patient insight
  • Clarity should be sought from the patient on confidentiality and sharing of information

Timeliness

  • Clinical uncertainty should be recognised (i.e. treatment, prognosis or recovery are complex or unpredictable)
  • Palliative care should be included as part of whole-patient management from the point of diagnosis of a life-limiting condition

Management

  • All clinical staff should be able to provide basic assessment and delivery with respect to palliative care
  • Ongoing, holistic, person-centred assessment care planning is required
  • Relationships should exist between HIV teams and specialist palliative care teams who can manage apparently refractory problems
  • Complex pain cases should be referred to a pain clinic
  • Assessment and monitoring of person-centred outcomes should underpin routine practice
  • Pain and symptom control should be at the heart of care plans and delivery
  • Palliative rehabilitation should be provided to optimise engagement, function and performance
  • Care should address the symptoms and concerns of both the patient and their significant others

Planning

  • Practice will require plans to be in place for exacerbations, palliative care emergencies and when an unplanned admission is a potential risk against individual wishes
  • Teams should establish preferences for end of life and should offer advance care plans and advance directives, which should be reviewed and be readily available to all team members
  • There should be regular revisiting of wishes as this will be required as disease progresses
  • Clarity and documentation in the medical record is needed on who should be involved in care planning and provision in the case of reduced capacity
  • Discussion and information about death and dying should be offered at appropriate times at a pace that is in line with patient preference
  • Death certification should follow GMC guidance which states that HIV (as a serious communicable disease) must be disclosed on the death certificate if it contributed to the death

8. Developing and maintaining excellent care

8a. Knowledge and training

  • People living with HIV should receive care overseen by a consultant physician specialist in HIV and provided by practitioners with appropriate competencies within suitable and recognised governance and management structures. It is also important that other non-specialist health and social care workers have core HIV knowledge

Quality statements

  • HIV remains a stigmatising condition that affects people who often are already vulnerable. For example, because of single or combined factors relating to gender, sexuality, age, race, income, education, drug and/or alcohol use or other medical and social history. All staff in HIV services should have appropriate training regarding the diversity of affected communities and important social and health influences
  • Ensuring healthcare workers have core knowledge about HIV is a key element in combating stigma within the NHS and it is recommended this teaching is included in the mandatory training undertaken by all employees
  • Ensuring this core HIV knowledge is also important for other staff working with vulnerable and/or affected groups including social care providers
  • All healthcare professionals engaged with provision of specialist HIV services are required to maintain their competencies to encompass the most up-to-date national guidelines, recommendations and advances in care
  • Healthcare professionals should be supported to disseminate their expertise through teaching, training and sharing of best practice
  • Where healthcare professionals are undertaking a specialist HIV role it is important that HIV care is specifically addressed in continuing professional development and appraisal
  • Curricula are an important structural component of training. Meaningful involvement of people living with HIV in the development of these, particularly specialist training curricula, is recommended

8b. Monitoring and audit, research and commissioning

  • Services should participate in national and local audits, reviews and quality improvement and share results with service users and commissioners
  • Service providers should embed mortality and morbidity reviews into governance structures to enable learning from serious incidents, deaths and late diagnoses
  • People living with HIV should expect to be informed of opportunities to take part in ethically approved research and public health activities that are relevant to their health and care
  • Please refer to the full guideline for the quality statements

8c. Public health surveillance, confidentiality and information governance

  • Services delivering HIV care should actively provide data to national surveillance programmes
  • People living with HIV should be informed and given choices about how their personal clinical information is shared with clinicians involved in their overall care outside HIV services
  • All patient-related information, whether clinical, pseudonymised or anonymous, should be held securely in compliance with information governance standards and national legislation
  • Please refer to the full guideline for the quality statements

full guidelines available from…

British HIV Association, 1 Mountview Court, 310 Friern Barnet Lane, London, N20 0LD (Tel – 020 8369 5380)

http://www.bhiva.org/standards-of-care-2018.aspx

British HIV Association. 2018 Standards of care for people living with HIV. London: BHIVA; 2018.

First included: February 2014, updated May 2018.