NASS Policy Bulletin [August 2005]

Response from the British HIV Association (BHIVA) to the consultation process

The British HIV Association (BHIVA) is a national organisation committed to excellence in the care of HIV-infected individuals. Membership is multidisciplinary and includes doctors from a wide range of specialities involved in HIV/AIDS, pharmacists, clinical psychologists and other professions allied to medicine. BHIVA has partnerships with the Children’s HIV Association of the UK and Ireland (CHIVA), National HIV Nurses Association (NHIVNA), HIV Pharmacy Association (HIVPA) and the Dieticians HIV Association (DHIVA). Patients and patient organisations are also represented within the Association. BHIVA’s activities include educational conferences, provision of national clinical treatment and adherence guidelines, clinical audit, and publication of an academic journal, HIV Medicine.

Members of BHIVA work directly with people who fall within the scope of the proposed policy bulletin and have extensive experience of the needs and concerns of people affected by and infected with HIV.

BHIVA welcomes the recognition by NASS that there are specific and complex healthcare needs that must be properly addressed within the dispersal process, and is particularly pleased to see that HIV infection and tuberculosis (conditions that are often closely linked) are being given particular attention. The policy document makes a start on the issue but it is relatively superficial and misses out on certain key elements.

Although HIV remains incurable, treatment advances have now made it a medically manageable condition and life expectancy has dramatically improved in the UK. The rates of transmission of HIV from pregnant women to their offspring have also fallen spectacularly with appropriate intervention. Key factors underpinning these substantial gains are the long-term engagement by people who are HIV positive with specialist, confidential medical care, very high levels of adherence to drug therapy and an early HIV diagnosis. The long-term relationship that is built up between doctor and patient are uniquely important in HIV medicine and a crucial aspect of successful management. There is substantial evidence that clinical outcome is directly related to HIV expertise. Patients cared for in hospitals with substantial HIV knowledge consistently fare better than those cared for in units with less experience.

All these factors will be directly affected by dispersal policies, impacting both on patients and on the clinical services caring for them in dispersing and receiving regions.

1. Interruption of antiretroviral drugs is a key determinant in both treatment failure and the development of long term drug resistant HIV. If doses are missed or supplies of medication run out not only are the beneficial effects lost but there is a real threat that future treatment options will be jeopardised by the development of drug resistance. For some of the drugs used in HIV missing as few as one or two doses can be a significant risk. Adherence – the ability of patients to take their medication exactly as prescribed - is highly emphasised in HIV care to maximise treatment benefits and reduce the risks of resistance. Disruption of daily routine has the potential to upset this crucial aspect of care.
2. The drugs have their own limitations – for maximum effectiveness some need to be taken with regard to meals, which requires a daily routine. Some require refrigeration if they are not to deteriorate. Side effects are not uncommon and may include for example diarrhoea and nausea, which make access to a bathroom particularly important.
3. Adjustment disorders and other mental health issues are frequent in people with HIV infection and also in many asylum seekers. HIV infection carries a high burden of uncertainty, which is compounded by the process of moving from place to place and the loss of social networks and structures. Development of mental illness – depressive and anxiety related conditions in particular- may be precipitated or exacerbated by relocation and these medical conditions will in their own turn compound difficulties of engagement with appropriate medical care and adherence to medication.
4. HIV care in pregnancy is particularly complex. Swift treatment decisions and a planned, well coordinated delivery, frequently by caesarean section, with the input of a specialised midwife, obstetrician and paediatrician are central to the good care of the woman and the prevention of transfer of HIV to her child. The baby requires 3 post natal blood tests to clarify its infection status and these are best done by the team that the woman has known through her pregnancy. If the woman is not married dispersal may mean that she is separated from the father of her child, often one of the few people on whom she may depend. Transfer of care and new housing arrangements in the midst of such intricate psychological and physical processes can be especially traumatic.
5. People with HIV face a range of associated medical problems and co infections, including hepatitis. HIV infection leads to progressive weakening of the individual’s ability to counteract an array of complex life threatening infectious and malignant conditions. Although treatment for many of these complications is available, it is often protracted and requires input from a variety of specialists, which may not be universally available.
6. Good HIV care needs to address the medical problems in their full social context. Many newly arrived people in the UK, especially those fleeing persecution, have particularly complex problems, including a lack of familiarity with western biomedicine. There may be language difficulties and an array of cultural sensitivities that require additional support.
7. High levels of stigmatisation and fear about HIV exist in many communities leading to a reluctance either to test for HIV in the first place or to disclose the diagnosis to others, in particular those who may have special authority over an individual’s future in the UK. For those in cramped, multiple occupancy accommodation this can be a particularly problematic.

1. HIV services are not the same across the UK. London has the largest concentration of expertise followed by other large cities. Although some areas in the UK operate within managed clinical networks (smaller clinics receiving support from larger centres in big cities) this is not universal and there are still many small clinics with limited resources.
2. Appropriate medical care for HIV increasingly requires the input of other specialist skills outside but associated with HIV – for example liver experts to manage co existing hepatitis B and C - which means that it may not just be HIV care that is required at dispersal site. Care of HIV infected children is a particularly specialised branch of medicine, with limited facilities for family care outside the larger clinical centres.
3. People with HIV may be taking part in research trials investigating either new therapies or better ways of using existing treatments. These studies are often specific to a particular centre and equivalent care cannot be given elsewhere.
4. Doctors and other staff have often worked long and hard with patients to establish the drug routine and individual support necessary. Unanticipated relocation may jeopardise this provision and also threaten the patient-doctor relationship.
5. No matter where the clinical service, provision of adequate levels of care to such complex patients requires forward planning and even small numbers of dispersed asylum seekers with HIV arriving with no or very short notice can put a considerable strain on clinical services.
6. To make the situation viable for both patients and service providers advance warning of the dispersal of complex patients with adequate time is required to ensure that appropriate services are in place (e.g. specialist translation). Clinicians regularly transfer patients between centres and given proper information such as the address to which a person is going and adequate time safe transfer of care can be organised. This is more problematic in the case of people in the midst of an acute complication and any transfer of care should be delayed until the patient is in a stable situation.

1. HIV should be added to the list of conditions for which delayed dispersal is considered in the policy document section 6.1, bullet point number 7.
2. NASS should be aware of and actively promote the key services within the NHS that are able to provide information and voluntary sexual health screens including HIV testing (Policy document, section 8.1).
3. Asylum seekers living with HIV should only be dispersed to areas that can provide a full range of services and support.
4. The clinician caring for the patient prior to dispersal should be actively engaged in transferring specialist medical care to an appropriate colleague or service at the dispersal destination. 3.5. People with HIV and their treating clinicians must be given adequate warning of proposed dispersal and details of the intended destination. To make proper arrangements for continuity of therapy and care and also to adequately prepare the patient psychologically for the losses that will flow from dispersal at least 6 weeks notice should be given and an exact location provided to the treating clinician by NASS.
5. People with HIV who are to be dispersed should be medically stable, with no active complications.
6. No patient with HIV should be dispersed until the treating physician has been consulted and has specifically confirmed to the NASS team that all necessary arrangements are in place.
7. Women who are HIV positive and pregnant should not be dispersed until their baby has been born and has been investigated to clarify if the baby is HIV infected or not. This usually takes 3-6 months following delivery.
8. Families with HIV infected children should only be dispersed to areas that have relevant expertise and can provide an appropriate level of specialised care.
9. NASS must make additional efforts to ensure that their entire staff fully understands the need for confidentiality and to reiterate this stance to their clients. This may require additional training.
10. NASS should work to ensure that asylum seekers understand that disclosure of an HIV diagnosis will not confound their immigration process. This is a major concern for many and leads to late disclosure of significant medical information causing difficulties to NASS and to both treating and receiving clinical teams.

BHIVA would be happy to work further with NASS in the development of good practice guidelines for the safe dispersal of asylum seekers with HIV infection.

Yours sincerely

Dr Jane Anderson, Honorary Secretary, BHIVA