Late diagnosis continues to be a problem in HIV care. Establishing which groups need to be targeted and how to reach them is a challenge for community nurses.
HIV continues to be one of the most important communicable diseases in the UK. It is an infection associated with serious morbidity, high costs of treatment and care, significant mortality and high number of potential years of life lost. Each year, many thousands of individuals are diagnosed with HIV for the first time. The infection is still frequently regarded as stigmatising and has a prolonged ‘silent’ period during which it often remains undiagnosed. Highly active antiretroviral therapies (ART) have resulted in substantial reductions in AIDS incidence and deaths in the UK.1 However, these sophisticated drug regimens are not a cure, and do not eradicate the virus.
The UK AIDS statistics from the Health Protection Agency1 show that of the 91,500 people living with HIV in the UK at the end of 2010, approximately 24% were unaware of their infection.
I am currently the team leader of a well-established HIV specialist community nursing team, and undertake targeted outreach testing in a variety of settings. In order to make an impact on reducing onward transmission of HIV, and identifying undiagnosed HIV in the UK, we need to familiarise ourselves with the current national guidelines, and look at ways we can incorporate them into practice.
The British HIV Association BHIVA,2the British Association for Sexual Health and HIV (BASHH), the British Infection Society (BIS), currentHPA guidance,1 and NICE (2011) guidelines3 state that there should be an increase in the uptake of HIV testing. Early diagnosis vastly improves outcome. Late diagnosis is more costly not just to the individual, but the NHS. Medical advances in antiretroviral drugs mean fewer people are dying. However, the 2011 House of Lords select committee4 report warns this is putting "increasing pressure on the health service".
The cost of managing the condition has gone from £500m in 2006-07 to £760m in 2009-10.
"This is not a case for cutting back on treatment," the report said, "it is a case for investing in prevention."4
Paul Ward from the UK’s biggest HIV charity Terrence Higgins Trust,5 stated: "We do not have to accept rising costs as inevitable. By renewing our approach to HIV prevention in the UK, by properly involving communities, businesses, charities, individuals and the state we can turn this epidemic around. The ways in which we can diagnose and treat HIV have advanced a great deal in 30 years, and making a similar step-change in prevention is well within our grasp."
If we refer to the NICE guidelines which were published last year, they look to target MSM (men who have sex with men), and Black African communities. However, because HIV remains socially stigmatising, my opinion is that there can be difficulties in promoting HIV testing as a completely normal diagnostic test. This can be one of the biggest challenges to any service working towards increasing uptake.
My experiences have been different in various settings and by sharing those experiences with you, I hope to enhance the services you provide when implementing the guidelines.
The testing activity for our service is two-fold. Anyone who feels they have put themselves at risk from acquiring HIV can self-refer for a test. They can come to our base, which is a regular community clinic. The patients like the anonymity they experience, as they could be anybody - not necessarily a patient - coming to see us. If someone perceives themselves as having been at risk, we would advise them to attend local sexual health services for a full screen. We have found that many patients wish to have their HIV test done separately because of the more serious implications. We would explain that choice to them. An alternative testing site would be at an HIV-specific voluntary organisation called Sahir House, which is located in the city centre. We provide a drop in session there once a week for existing patients, but can also carry out tests if anyone requests it.
The other testing activity we undertake is targeted outreach. This can be in the form of domiciliary testing. An example of that would be maybe a female asylum seeker who has come from an area of high prevalence, who is unlikely to present at any healthcare setting. Such a case may be referred in with the patient’s consent by anybody that is involved in such a case. Lack of engagement may be due to language barriers, trauma, depression, or immigration issues. Once a week we visit another charitable organisation called Asylum Link, where asylum seekers attend for a variety of reasons. We try to gather people in small groups and impart very simple, basic information about HIV such as transmission, and how to access a free confidential test. We sometimes use peer support to interpret if language is a problem. It is difficult to arrange an interpreter, as we never know which language we need until the clients turn up. We devised information leaflets some time ago, which have been interpreted in to 9 different languages. The leaflets contain graphics which use a “traffic light” system to explain which activities are safe and ones are not. These work well if used as a framework to ensure appropriate information is imparted. We can also see patients on a one-to-one basis using language lines to assess risk and offer support and carry out the test. We can offer testing at Armistead centre which is a lesbian, gay, bisexual and transgender (LGBT) organisation based in the city centre. The latter two sites fulfil the NICE guidelines relating to MSM and African communities. Sometimes nobody comes forward for a test on a particular day, but the opportunity to provide factual, basic information about transmission, and dispel some myths, and preconceptions about HIV is priceless. This model works very well in this kind of sensitive outreach work, and is one that is transferable to other settings.
There have been a few news items recently relating to the role faith plays in HIV prevention, management and testing. We have had experiences of some HIV positive patients stopping their life-sustaining medication after believing they had been reborn without HIV. Some have said that God will cure them, look after and keep them well. These ideas most often originate from churches of African origin. This has been a challenge to us. During the World AIDS Day (WAD) testing events last year, we approached a Kenyan church leader, who was happy for us to offer a testing session at the church. Nobody came. We know now that a more effective strategy would have involved more mobilisation of individuals within that community to work with and encourage people to attend in a culturally sensitive way. A “person in the middle” approach. Offering education and facts to key people such as faith/church leaders, Doctors, nurses, anyone who can influence or champion HIV testing is the best way forward. This also applies to targeting MSM and intravenous drug users. A multi-agency approach works well. Find out who are the key people or groups that can promote testing, explain the benefits and reassure that the test will be free and confidential. This will be most effective when undertaken before the patient presents for a test.
From September 2009 to May 2011, the service took part in a collaborative study, lead by the Liverpool School of tropical medicine (LSTM), MacPherson P. et al 2011.6 This was funded by a pharmaceutical company. The project examined the feasibility of Point of Care Testing (POCT) in outreach settings in Liverpool communities, and within the Liverpool centre for sexual health (LCSH) using fourth generation POCT. The outreach settings were, Addaction (drug services), Armistead centre, Sahir House, community clinic and homeless services. These are all existing services which expressed an interest to incorporate POCT into their routine work. Our service was involved in the training and supporting services through the pilot, which included a 3-day event to coincide with world AIDS day. We continued to use POCT through 2010, and delivered another 3-day event around WAD that year. The results of that study were very favourable. Both patients and operators found it user-friendly. The main benefits in outreach settings were, depending on the window period, the quick results without the need for a further appointment. This saved nursing time, and prevented time-consuming chasing of patients who did not return for results. Also, capilliary sampling is less invasive for patients and safer for nurses preventing the need for venous samples. The test strip is easy to read and can be verified by the patient. I have found that this gives patients ownership of their test instead of the sample being sent off to a lab never to be seen again!
I believe that by using POCT it is an easier task to encourage generalists to feel more confident in offering and undertaking HIV tests in outreach settings. This is particularly important when looking to build capacity in the workforce, especially in the current economic climate. One reason for this is because the result is given as either non-reactive, or reactive, the latter needing a confirmatory test with a venous sample, rather than “positive” at that point. If the confirmatory result is positive, then specialists can be approached to offer support to both the staff member and the patient. This is certainly something my team offers.
Unfortunately, POCT still has not been commissioned in a community setting in Liverpool as yet. So currently we are back to taking venous samples. We still use the same model, but have to put on another session for results. The turnaround time is usually less than 1 week, however we have a good relationship with our Virology lab and can obtain results quicker if needed.
In summary, offering HIV testing in outreach settings within our communities is essential if we are to begin to reduce the number of late diagnoses and HIV-related deaths. Services need to work in a multidisciplinary way to engage with “hard-to-reach” members of society who may have been exposed to HIV. My advice would be to persevere! It takes time to build relationships with vulnerable or marginalised communities. Be flexible, approachable, sensitive and respectful. Try to forge links with the statutory and voluntary agencies that support these groups, phone them, email them, and visit them until you get a response! Look to commissioning bodies and try to influence decision makers in service provision to meet the current HIV testing guidelines. Research, contact and ideally visit other areas across the country to look at best practice and how different areas with varying socio economic profiles address this sensitive issue. Good luck!
3. National Institute for Health and Clinical Excellence (NICE). Increasing the uptake of HIV testing among black Africans in England. London: Nice; 2011.
4. Select Committee on HIV and AIDs in the United Kingdom. First Report:
No vaccine, no cure: HIV and AIDS in the United Kingdom. 2011. Available from: www.publications.parliament.uk/pa/ld201012/ldselect/ldaids/188/18802.htm
5. Terrence Higgins Trust. Tackling the spread of HIV in the UK. 2011. Available from: www.tht.org.uk/Content.aspx?ciid=39072
6. MacPherson P, Chawla A, Jones K et al.Feasibility and acceptability of point of care HIV testing in community outreach and GUM drop-in services in the North west of England. BMC Public Health. 2011;11:419.
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