From Kenya to Kennington

Jackie Ayugi, NAM’s Communities Engagement Officer, reflects on her six months in post, and on the differences – and not-so-differences – between HIV in Kenya and London.

Where I’m coming from…

I used to live and work in Kenya. Some of the key factors that contribute to the spread of HIV there include high unemployment and poverty, cultural and religious practice, failing health systems and a shortage of skilled healthcare workers. Political leaders have, at times, lacked the political will to ensure that everyone infected with HIV gets treatment.

Poverty, to a person living with HIV in Kenya, means lack of proper medical care and lack of proper diet, essential to withstand HIV. Most people there live on less than one US dollar a day, making it hard to prioritise health and medicine. Poverty makes living with HIV in Kenya difficult and challenging, and sometimes people are forced to sell their limited resources to seek medical care, which is not free at the point of delivery. Although antiretrovirals (ARVs) are free from government facilities, they are not always readily available so people are sometimes forced to resort to the private market.

Stress and depression are common amongst vulnerable groups, particularly young girls and women; some are driven to prostitution or take other sexual risks in order to sustain themselves.

Stigma and discrimination play a critical negative role in access to care. Some people feel dirty, ashamed or guilty because of their HIV status. Many lead secretive lives, which may perpetuate the further spread of HIV, while some end up with alcohol and drug abuse problems.

In rural areas with poor infrastructure, people sometimes have to carry their ill relatives on bicycles, on their back or on wheelbarrows. Only a very few and scattered local health facilities have the specialist equipment needed for CD4 counts, viral loads or drug resistance tests.

My experience in my country gave me a passion to be involved in HIV prevention, care and support work. I came to England in 2008 and joined NAM in August 2010, taking on a new role with the organisation. At the heart of NAM’s mission is a commitment to supporting all communities affected by HIV. Historically NAM’s efforts to provide information for the African community were not always consistent or effective. Funding from the Big Lottery and the Henry Smith Charity enabled NAM to create a Communities Engagement Officer post, in order that NAM can better understand the information needs of these diverse groups and develop resources that are useful and relevant to them. This post represents a sustained commitment to this area of work. In taking on this new role, I’m tasked with identifying and developing relationships with African communities and related organisations in London, working with them to make our information resources more known and available, and gathering feedback on their relevance, usefulness and acceptability within the African communities in the UK. Since coming to NAM I have found great motivation in working within an organisation that raises awareness, and supports those infected or affected by HIV.

The same but different

Africans in the UK are a diverse group. In the course of my work, I have met service users originally from 15 different sub-Saharan African countries ranging from South Africa to Somalia and Nigeria. My work has highlighted some similarities in issues in both Kenya and the UK.

Living with HIV is a challenge in both places, not only in terms of living with a long-term condition, but also overcoming socioeconomic barriers. These Africans are faced with a myriad of issues and challenges. The similarities that stand out include late diagnosis of HIV (often when HIV is already causing illness) and late treatment uptake. Africans in both countries are faced with high unemployment, housing problems and poverty, and experience fear of disclosure, stigma, discrimination and isolation.

Although, to a certain extent, there is still a strong support system from families and communities, both still hold the same cultural and religious beliefs, values, myths and misconceptions about HIV. During a discussion I attended with an HIV specialist and people living with HIV, one lady said: “I still believe that I was cursed by God, because since my husband died I had never had sex with another man.” Some Africans pass blame to others when it comes to HIV and do not want to be associated directly with it. Over there and over here, people still find speaking openly about sexuality with children and peers shameful and taboo.

There are similar attitudes towards people in authority too. People in authority are regarded as godlike, and their decisions and actions never questioned. During one forum a lady commented: “Whenever I visit my HIV specialist I never ask questions or interrupt him. I know that everything that he says is true, so I don’t need to read up on his decisions. After all, he is very educated and knows what he is doing. I just listen and comply.”

The differences between Kenya and the UK were eye-opening though. I was amazed at the services offered in London by African community organisations: drop-ins, lunches, complementary therapies, transport reimbursement, social and outdoor activities, volunteering, IT training, dancing, yoga… all geared towards getting the HIV-positive person moving forward with their lives and becoming more self-reliant. Community organisations here take people with HIV on as volunteers, in some cases enabling them to become permanent members of staff. One service user told me: “Because of the training I have received, such as power speaking and advocating for positive people, I am now a fully-fledged positive speaker attending parliament sessions; I’ve addressed MPs on policy issues affecting HIV-positive Africans living in London”. I believe this is the way to move the HIV-positive African in from isolation and help people give back to their own community. That’s how a community develops and is able to tackle, as a community, its own issues.

I must applaud the treatment services here in the UK. Clearly the monitoring and regular care are superior to that in Kenya, but one thing I was especially impressed by is that patients can also be referred to mental health specialists and psychiatrists. This is something very rare in Kenya because psychiatrists are far too expensive to be consulted. UK clinics even have home-delivery of patients’ drugs. One support group participant told me it hadgiven her peace of mind because she was afraid she would meet a friend or relative whilstcarrying her drugs.

Yes, in both countries HIV services are under increasing pressure, and one issue facing both Kenyan and London clinics is trying to serve a large number of HIV-positive patients within a limited period of time. One lady commented: “I used to get a lot of support from my HIV specialist and sometimes could just call her when I was very sick and ask for advice. But now you only get to see your HIV specialist every three months.”

Despite all the HIV-related services available in London, a significant number of Africans here are not able to fully benefit from them. Faced with language difficulties, housing problems, joblessness and poverty, uncertain immigration status and fear of stigma, many do not prioritise learning more about HIV and their health options.

Some people end up with jobs that they do not like or they are over-qualified for because qualifications obtained from their countries of origin are not always recognised by the British system. During one community support group I attended, a gentleman aired his frustrations. “I have a Masters degree in administration back home in Nigeria,” he said, “but for the last ten years I have had no job that tallies with my qualification. I have been working in an old people’s home for the last seven years to be able to pay my bills and send money home. I am just glad that my relatives back home do not know the kind of work I am doing; it’s too shameful for a man of my status to be washing people’s bodies.”

He also had constant fear about his HIV status being revealed: “I have to make false excuses to be away from the office. I never say I am seeing the doctor, for fear my employer might think I am not well enough to work. He might ask me to do a medical examination, as he had done before with other African employees who kept missing work. All these lies make me sick.”

Just under two-thirds of the half-a-million Africans living in the UK are first-generation migrants from Africa.¹ They tend to have strong attachment to values such as family dignity, honour, and respect for the authority of men and of elders. Open discussion of sexuality in public, or in mixed social settings is a taboo for most of them. For this reason, many African parents tend not to offer information about sex to their children. This responsibility passes (formally or informally) to others, including teachers. As a result, second-generation Africans in the UK may be left feeling confused by the silence at home regarding sex education, yet being taught in school about sex and relationships. The confusion is worsened by the sexual freedom displayed in the media – to which they have easy access – as well as in British culture.

Issues facing the African HIV sector here

My job has involved meeting many people, including HIV-positive Africans, HIV clinicians, social workers and community mobilisers, and attending conferences, meetings and peer-support group sessions for Africans with HIV in the UK. The more meetings I go to, the more certain issues stand out. These include:

Late diagnosis. Some Africans are reluctant to seek care or treatment due to fears of further stigmatisation; twice as many non-pregnant women and more than twice as many heterosexual men are diagnosed with a CD4 count of under 200 compared to gay men, and most of these are sub-Saharan Africans.² 

Some Africans who do seek treatment do so outside the borough where they live to reduce the chances of meeting friends, neighbours or relatives and, blaming themselves for their illness, try as much as possible to live very secretive lives. Some told me of gossip, distancing and harassment from friends, family and even previous partners after disclosing their HIV status.

Testing. For the same reasons, I found a lot of fear regarding HIV testing. People feared that if they went for an HIV test and were found positive they would be deported back to their countries of origin. Some service userslacked awareness about where to go for testing;somehad little knowledge about HIV and how to prevent it; and some did not know who was eligible to receive HIV treatment in the UK without paying for it.

Safer sex. I found a lack of awareness of the implications of being in a serodiscordant relationship (where one partner has HIV and the other does not), and some people lacked the skills they need to communicate openly with their sexual partners about HIV and to negotiate safer sex without threat of force. Some feared being criminalised if they infected another person.

Employment discrimination. Some Africans also highlighted problems with immigration and not being able to secure a job. Others thought that being HIV-positive meant they were not entitled to work. Some feared employment discrimination, hearing of cases where people might be required to have a medical check to secure a job. Some also feared that, once in employment, they might lose their jobs if their HIV status became known.

Other key issues. I’ve visited community organisations offering an impressive range of services. In terms of what organisations can do to support their service users better, certain other key issues also stood out from the discussions I have had with service users and service providers as things African community organisations can do to support their service users:

• Holding more awareness and prevention campaigns (for example, UK Africans, especially men, strikingly lack education on the importance of consistent condom use).
• Providing more information on and education about available services.
• Creating better referral systems within and between organisations.
• Involving HIV-positive people in designing interventions to reduce stigma and discrimination and to help halt transmission.
• Working with faith leaders to reach wider audiences: training has been offered to some religious leaders (see Faith in the Community, in HTU 190).
• Developing more awareness of same-sex relationships, and tailoring their services to be more sensitive towards gay members of the African community.

Funding and the future

In my time so far as NAM’s Communities Engagement Officer, I have found that African community organisations are hampered by a lack of infrastructure – both within the organisations and in allied services that might support and shore up their work – and a lack of funding. Some have been forced to merge while others, chasing grants, are broadening their area of services to general health, domestic violence, early pregnancy, female genital mutilation and other issues.Reductions in the number of paid skilled workers, due to budget cuts, sometimes lead to poor delivery of services.

When funding is provided, it is often only for certain boroughs and so organisations are often forced to turn away patients from other boroughs. The lead co-ordinator of one organisation told me: “Our charity used to serve clients from any borough but we now have no option but to send people back to their own boroughs. This I find difficult to deal with because some patients mention that they are afraid of been seen by their neighbours or friends at support groups.”

I worry that the African HIV sector in the UK is under real threat of collapsing or being overwhelmed. For the future benefit of the sector there needs to be better collaboration and more partnerships between organisations to reduce duplication of work. Although there are some efforts to unify them through initiatives such as the African Health Forum (AHF), the National African HIV Prevention Programme (NAHIP) and the African Health Policy Network (AHPN) a united voice is still needed to represent the African community. We need to share together our strength, expertise and experience.

One area in which African community organisations could make a big difference would be in helping to develop better communication and understanding between health professionals and community members, to be able to provide services that are more appropriate and relevant to the African communities needs. 

The diverse African communities in London and throughout the UK need more information about HIV. For this to happen there needs to be better communication and trust between them and within them. I see my task as listening, learning and fostering this so-much needed trust in order to reduce the impact of HIV on people living with HIV. I believe it is time for Africans in the UK to take control of their own lives and health in order to make informed choices for their own future.

Those who access information resources such as those produced by NAM attest that they have benefited greatly in their overall quality of life and improved healthcare management. Their knowledge around adherence and health monitoring improves and they tend to cope better with their condition and their daily lives.

NAM is working in partnership with organisations and networks such as AHPN and NAHIP, and with other key African stakeholders, to guide UK Africans with HIV by utilising their strength, expertise and experience. We believe our support will contribute to building stronger African communities with more active citizens working together to tackle HIV and health problems.

New publication coming soon

I would also like to take this opportunity to introduce a forthcoming new resource, produced jointly by NAM and AHPN. In developing HIV and UK African Communities, we aim to provide a thorough mapping of existing HIV and related services for Africans in the UK, as well as to explore some of the key issues affecting people from these communities. We hope this resource will assist those working in the HIV sector, or with people of African origin, to find existing services, to identify gaps in provision, and to make better links between general health, HIV-specialist and non-medical organisations, to develop and improve services, referrals and support for African people living with HIV in the UK.

Contacts

You can find out more about our publications, send us feedback and find out about services local to you on our website or you can email us at info@nam.org.uk or call us on 020 7837 6988.

For more information on the organisations and networks mentioned in this article, visit their websites:

African Health Forum: www.africanhealthforum.org.uk

African Health Policy Network: www.ahpn.org

National African HIV Prevention Programme: www.nahip.org.uk