HIV, the Human Immunodeficiency Virus, infects and gradually destroys an infected person’s immune system, reducing their protection against infection and cancers (Terrence Higgins Trust, 2009a). The General Medical Council, GMC (2009), classifies HIV as a ‘serious communicable disease’ as it capable of causing significant harm and death. It has been estimated that 83,000 people are infected with HIV in the UK of whom 27% are unaware of their status (HPA, 2009, pp. 2). I had the opportunity to meet two community visitors to understand the implications of HIV. Dr. A, a healthcare professional works in a HIV clinic and Mr. Y was diagnosed as HIV positive in February, 2000 following a blood test. Firstly, I will explore the various social and health services available for HIV patients in London which are now more pertinent than ever before as the HPA (2009, pp. 7) report also noted that prevalence of HIV was highest in London. Secondly, I will discuss the range of socioeconomic and psychological barriers that might prevent people from using these services. Thirdly, I will consider methods to overcome these barriers.
Within London, there are many health and social support services available for people with HIV. Firstly, there are primary and tertiary NHS healthcare services. Some patients may use their general practitioner (primary care) as their first port of call who will then refer them to a sexual health clinic (tertiary care). However, people can visit a sexual health clinic or a GUM clinic (genito-urinary medicine) without a referral. There are over thirty GUM clinics in London for a wide variety of patients (GMFA, 2009). GUM clinics ‘deal with the male and female sexual organs’ and health conditions related to them such as HIV and other sexually transmitted infections. They offer advice, testing and treatment amongst other services (NHS choices, 2008). For instance, the Bloomsbury Clinic in central London is ‘open access’ and offers free outpatient services for people with HIV and ‘inpatient services at UCLH’ for specialist treatment. It even offers an emergency clinic for out of hours support (NHS Camden Provider Services, 2009).
Providing multiple health and social services is typical of some GUM clinics in London. For instance, Dr. A’s clinic offers HIV testing and treatment, psychiatry and counselling, social services to help patients with immigration and housing matters, the citizen’s advice bureau as well as specialist HIV pharmacists, nurses, reflexologists and dieticians. I believe this is an excellent model for patients as they have access to all the resources they may require in one location. GUM clinics may run special clinics at specific times for different sorts of people. Dr. A, for example, works mainly with thirteen to eighteen year old adolescents who acquired HIV as a result of vertical transmission, which is the spread of infection from the mother to child in the uterus. A GUM clinic in Ealing operates a ‘gay and bisexual men’s clinic’ on Wednesday evening from six to eight o’clock. Furthermore, the ‘Working Men’s Project’ clinic in Paddington is only for ‘men who work in the sex industry’ (GMFA, 2009). This is also a feature of charity based events. ‘Africa Days’ is an example of a targeted peer mentoring scheme at Lighthouse West London (Terrence Higgins Trust, 2008). These specialist clinics, in my opinion, may help to make the target population more willing to become better informed.
GUM clinics do not function autonomously and are well coordinated with various charitable organisations across London. Dr. A’s clinic works in cooperation with the Terrence Higgins Trust, the UK’s national HIV/AIDS charity. The Terrence Higgins Trust is a valuable asset for people with HIV as it offers mentoring, legal advice, support groups, help with accessing treatment including post exposure prophylaxis (PEP), and educational publications to name a few (Terrence Higgins Trust, 2009b). In essence it is a patient’s advocate group and a hub for information. They directly provide services such as HIV testing but also indirectly advice people about other charities available to support them.
Body and Soul is a London based charity supporting children and families living with or closely affected by HIV. It offers weekly support sessions and counselling and various other activities (Body and Soul, 2009). It has the benefit of being age appropriate for the patients at Dr. A’s clinic and a lot of them have reported enjoying this charity’s facilities. For homosexual HIV patients, GMFA, the gay men’s health provides counselling support and informative leaflets (GMFA, 2009). Mainliners, a London based company seeks to ‘improve the quality of life for people affected by drug use and the spread of blood borne viruses’ by providing educational publications and courses. Their ‘SMART Service’ aims to reduce transmission by offering a clean needle exchange programme (Mainliners, 2008).
Furthermore, some London councils have combined their resources to create social services for HIV/AIDS patients. The South London HIV Partnership (SLHP) is a consortium of ‘a range of organisations in South London working together’ to make it easier for HIV patients to obtain information, advice and support (SLHP, 2009). They offer free ‘reliable’ and ‘confidential’ services. They even make ‘home visits’ in exceptional circumstances. Councils are able to offer social services such as ‘meals on wheels’ and can provide benefits such as ‘income support’ for HIV patients and carers as well (Greenwich Council, 2009).
There are a number of socioeconomic and psychological barriers that prevent people from using the services available to them. Patients may encounter rampant stigmatisation, communication barriers, a conflict of cultures, beliefs and values, of HIV and a lack of information amongst other individual barriers.
Dr. A and Mr. Y both mentioned that HIV is a highly stigmatised condition. According to UNAIDS (2008, pp. 78), ‘HIV-related stigma’ is the ‘process of devaluation of people living with or associated with HIV’. Scrambler (2008, pp. 211-212) noted that ‘a persistently negative societal reaction has continued to play a vital role in the experiences of individuals with the [human immunodeficiency] virus’. Stigma exists because it connotes behaviours such as homosexuality, prostitution and drug abuse (Avert, 2009). I think this displays extreme prejudice and ignorance is exacerbating the problem of socially isolating HIV patients. HIV-related stigma is detrimental for both the individual patient and public health and Mills (2006, pp. 498-503) has shown that ‘HIV-related stigma’ has a significant affect in preventing patients from accessing care. They may be worried about being discriminated against or being shunned by friends and family. Mr. Y commented that he is ‘angry at the stupidity that some people display [towards HIV]’ and that he fears ostracisation. This stigma has been noted in practise. Dr. A explained that her clinic has several single locked rooms where patients will wait to be seen without fear of recognition as they feel humiliated in common waiting rooms. Some make long journeys to prevent being identified by anyone they might know.
Criminalising HIV has certainly not helped to reduce stigma. There have been numerous cases throughout the world where people have been prosecuted for transmission with great disparity in the application of law (Cameron et. al, 2008). This includes a HIV positive homeless person who was jailed for thirty five years for spitting in a police officer’s face as he used a ‘deadly weapon’ which was his ‘saliva’ (Kovach, 2008).
According to Dr. A, communication is a crucial barrier for patients who do not speak English as a first language. Almost ninety percent of her patients are from sub-Saharan Africa and those who have recently migrated to the UK in particular find it difficult to access HIV services in London due to the language difference. She uses an interpreter during her consultations but hinted that it is possible that relevant pieces of information may be missed. I believe this is a crucial obstacle as direct translation, or the lack of it, from one language to another could result in omission or substitution of crucial words which could affect her service delivery. Dr. A’s clinic has attempted to resolve this issue by employing a doctor who speaks French who is better suited to treating people from the Ivory Coast. Counselling services in her clinic have been supplemented through the provision of an African counsellor.
Interestingly, Mr. Y believes that doctors lack adequate listening skills. He believes that in ‘conventional medicine’ as he describes it, doctors are not willing to understand the patient as a whole, and he remarked that ‘patients are just facts and numbers’. It should be noted that Mr. Y is an alternative medicine practitioner for the past fifteen years and I believe this has most likely biased his views as both types of medicine adopt different techniques to manage and resolve disease. However, in general, Mr. Y’s opinion raises an interesting point. Some people may have a fear or dislike of doctors and this could prevent them from seeking treatment.
Dr. A mentioned that a significant majority of her patients are asylum seekers from sub-Saharan Africa. Currently, almost a quarter of HIV patients in London acquired the infection in Africa (HPA, 2009, table 3). The UK government aims to remove failed asylum seekers from the country as it believes that their country has antiretroviral drugs even if the patients are personally not able to access them. The fear of deportation and cost could deter patients from coming forward and seeking help. Cost recently became a barrier following an appeal in the case of R v Secretary of State for Health  EWCA Civ 225 whereby failed asylum seekers are no longer entitled to free treatment from the NHS. Based on Dr. A’s experience, some of her patients from Africa consider HIV as a secondary problem and are more interested in immigration and housing, a problem compounded if they children.
I think that are a few barriers on an individual level which were raised in my discussion with both Dr. A and Mr. Y. Religious beliefs may prevent people from seeking treatment or advice and in an interesting debate, it was argued that Catholicism has ‘beliefs contrary’ to effective management and prevention of HIV such as the use of condoms (Rodriguez et al., 2008). Some of Dr. A’s patients refused treatment as they thought it was ‘God’s will’. I believe other barriers could be issues such as a lack of knowledge of available services and general misconceptions about the condition. This is further complicated for people who may be new to the country.
It is now important to consider the methods health and social services can use to overcome barriers. Current guidelines for the clinical management of HIV emphasises the need to ’empower’ patients and understand the ‘social exclusion and stigma’ associated with HIV (MedFASH, 2003, pp. 9-10). I believe that stigma stems from a lack of knowledge. There needs to be greater public awareness of HIV
Service delivery needs to account for the extremely sensitive nature of HIV. Doctors can reaffirm the patient’s right to confidentiality.
This is an ideal approach as partnership between care providers and the patient will ultimately benefit the patient in overcoming social exclusion.
Dr. A’s clinic advocates a patient’s forum where people have a voice. Patients can obtain more information about the extended services available to them as well as having a playing in the ways in which the existing service could be improved. However, Mr. Y, as a patient believes he does not have a voice in the current system and has instead created a personal creative outlet to express his feelings in the form of artistic therapies.
The services discussed are just a brief glimpse of the entire range on offer in London and as per Dr. A are ‘among the best in the UK’. Availability of healthcare services means very little if people are unwilling to use them. Even though HIV has received mass media coverage and support, World AIDS day for example, it is true to say that a crucial barrier in service delivery is stigmatisation. I believe through greater public awareness, education and tolerance, there will be a reduction in HIV-related stigma. To quote AIDS advocate Dame Elizabeth Taylor, ‘it is bad enough people are dying of AIDS, but no one should die of ignorance’.