4. Complex HIV care

HIV-positive people presenting with complications of HIV can be critically ill with life-threatening conditions and require complex care including intensive care. Management for these patients should be provided by an HIV specialist consultant-led multidisciplinary team, frequently in collaboration with other medical specialties. According to Public Health England of the 6095 people diagnosed with HIV in 2015, 39% were diagnosed at a late stage of the infection. People diagnosed late are at increased risk of developing an AIDS-defining illness and continue to have a ten-fold increased risk of death in the year following their diagnosis, as compared with those diagnosed promptly (31.5 per 1000 compared to 3.6 per 1000). One-year mortality was particularly marked among people aged 50 years and over, where one in 16 diagnosed late died within a year of diagnosis. If appropriately managed, people presenting with severe HIV-related complications should expect a good long-term prognosis. Best clinical practice or the management and treatment of HIV-associated opportunistic infections and cancers is outlined in national and international guidelines.

The spectrum of illness seen in HIV-positive patients has changed over the last decade. The use of effective ART in people known to have HIV has led to fewer people requiring inpatient care for immunosuppression-related complications of HIV. To ensure optimal management of these conditions, service provision will need to be delivered via formal networks across geographical areas to ensure that inpatients with advanced HIV have equitable access to best-quality care and advice. Network arrangements will ensure that HIV services maximise critical mass in order to provide adequate experience to achieve optimal outcomes and support training in inpatient HIV care. In addition, long-term survival has led to an increase in a number of malignancies and other end-organ disease. There will be a need for a network to develop agreed pathways for integrated care for those conditions requiring specialist input, such as lymphoma, multicentric Castleman’s disease, co-infection with hepatitis B and C, and end-organ liver and renal disease.

HIV-positive people are living longer and are often admitted to hospital for non-HIV related problems. During hospitalisation they may be seen by a wide range of healthcare staff, some of whom may have limited experience in providing care for people living with HIV. Issues that can negatively impact on patient experience during their stay include fear of breach of confidentiality, fear of stigma and fear of drug errors with HIV medication.

Providers of outpatient HIV care must have documented, agreed pathways to appropriate inpatient services. It is accepted that not all HIV-positive people with proven or suspected complications of HIV require transfer to an HIV specialist unit and they may be cared for safely and effectively locally. They must, however, be supported by immediate and continued engagement with specialist HIV expertise and advice, allowing for early transfer should the complexity of care escalate. Specialist HIV inpatient services must also be in a position to provide support and advice to acute medical services when a patient is clinically unsafe to transfer.

Treatment

• People living with HIV requiring admission to hospital should receive the best care and treatment, as defined by nationally recognised guidelines for all patients but also according to the guidelines for the treatment of HIV and its complications.

• People living with HIV should expect that when hospitalised with a suspected or proven AIDS-defining opportunistic infection/cancer and/or with severe immunosuppression, their care is supervised by or discussed with a clinician experienced in the inpatient management of HIV disease. This clinical engagement should be immediate and continuous. In low-prevalence areas their care should be discussed with the designated inpatient unit within the network.

Care pathways

• People who require admission or transfer to an acute HIV specialist inpatient unit, or who require access to specialist HIV inpatient expertise and advice, should be able to access these services within 24 hours of referral/request.

Confidentiality, privacy and dignity

• People living with HIV who require inpatient admission should experience high standards of confidentiality, privacy and dignity in line with the law, GMC guidance, Nursing and Midwifery Council (NMC) code of conduct and national standards. People living with HIV have the right to expect that their care is provided in a safe environment and that they are treated with dignity and respect regardless of race, gender or sexuality.

Communication and discharge planning

• People living with HIV who require admission to hospital should experience effective rehabilitation and discharge planning to ensure timely length of stay, appropriate arrangements for ongoing care and safe discharge.

• Healthcare professionals involved with the ongoing care arrangements of patients discharged from HIV specialist inpatient services should be in receipt of a summary of the treatment and care received and plans for ongoing care within 24 hours of the patient’s discharge.

Infection control

• People with advanced immune deficiency and who are admitted to hospital should be protected appropriately from hospital acquired infection. Service arrangements should be in place to reduce and avoid the risk of hospital acquired infection and to ensure immediate access to appropriate isolation facilities, when needed.

Care arrangements of HIV inpatient units

• Arrangements for care in specialist HIV inpatient services must ensure there is:
  - Provision of 24-hour access for acute care
  - Co-location with high dependency unit (HDU) and intensive therapy unit (ITU) services with appropriate escalation of care to HDU and ITU when indicated
  - 24-hour availability of pharmacy services and access to specialist HIV pharmacist advice
  - An HIV specialist consultant physician-led multidisciplinary team
  - A nursing team with HIV specialist nursing skills and expertise
  - 24-hour availability of HIV specialist inpatient consultant advice and expertise (locally or via a network)
  - Access to diagnostic laboratory services as required
  - Access to other medical and surgical specialty advice and services when required
  - Access to psychosocial and welfare advice and support, including peer support
  - Access to dietetic, physiotherapy, occupational therapy and speech and language services, including assessment and provision of inpatient rehabilitation
  - Provision of 24-hour access to and use of on-site negative pressure units or an agreed pathway in place to nearby facilities
  - Access to a full range of on-site imaging services

• Arrangements for inpatient care should ensure that access to the above services, advice and provision of results is not delayed.

• Proportion of people admitted to a specialist HIV inpatient unit within 24 hours of request for transfer (target: 90%).

• Proportion of specialist HIV inpatient services with documented evidence that they provide 24-hour HIV specialist consultant cover for the management of HIV disease within a designated network including provision of advice to other units within the network.

• Proportion of inpatients presenting with an AIDS-defining condition or serious bacterial infection and CD4 count <350 cells/mm³ started on, or maintained on, ART within 6 weeks (target: 90% of those surviving).

• Proportion of all patients discharged from an HIV specialist inpatient unit (with an HIV-related problem) seen in HIV outpatient services within 1 month (target: 90%).

• Proportion of all deaths of HIV patients with documented evidence of review of the death, including those admitted to an inpatient unit (target: 95%) (see Standard 8b).