Far Away From Home: HIV and Migration by Positively UK

UK Far Away From Home: HIV and Migration

In this issue... 3

Interview With Bisi Alimib

6-7 Free HIV Treatment in England From October 2012

The Impact of the Cancellation of Global Fund Round 11 Funding – Where Are We Now?

The Legacy of Violence Against Women With HIV

10-11 The Polish

Connection

12-13 Health Tourism 14-15 All change! 16-19 Double jeopardy:

ilv S r e t t e L ’s Guest Editor

immigration removal centres and HIV

20-21 Let’s Talk... Pregnancy 22-23 Immigration and HIV 24

George House Trust – Service User’s Story

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in the North West and Manchester

Support Positively UK

12 Practical Ways to Make the Most of Your GP

Positively UK Summer 2012

27 I Want Great Care 28-29 British HIV

Association (BHIVA) Spring Conference, 2012

British HIV Association (BHIVA) Guidelines

31 Positively Policy 32 Recently at Pos UK 33 This is my farewell... 34-35 What’s Happening Around the UK?

Dear Readers, Welcome to this edition of Positively UK magazine which is dedicated to the theme of migration. When I tell people that I was born in Rome they often ask in disbelief: “Why did you move to the UK? Rome is so beautiful and sunny and the food is so good…’’ I have often wondered if I would have made London my home if I didn’t have HIV. Here I have found not only a great health service, God bless the NHS, but incredible social support, led by people living with HIV. This support has changed my existence and allowed me to live a healthy and fulfilling life with HIV. As you will see from many of the stories in this edition, moving from your home country is never an easy decision; it is hard to leave your loved ones and the familiarity of the environment you grew up in. You will also see that this can be even harder for people outside the EU as they can face incredible challenges which range from accessing health services, to homophobia and even detention. The people who have contributed to this issue have gone through these difficulties on top of having HIV and, in some cases, running away from war or terrible human rights abuses. These stories show that the incredible challenges many of us face can serve to bring out our strength and resilience. I hope this edition will also showcase the incredible commitment of organisations like George House Trust in Manchester, the National AIDS Trust, NAM, UKCAB and BHIVA who, alongside Positively UK, have tirelessly supported people living with HIV and campaigned with us for our right to health and social care. As the NHS is being radically transformed by the present government, the collaborative work of these organisations is going to become even more important in order to continue having high quality health services for us all. Silvia

Interview With Bisi Alimib By Silvia Petretti

My name is Bisi Alimi and I have many hats. I have recently started a project for African Men who have Sex with Men (MSM) which aims to provide sexual health support, peer support and encourage community engagement. In my freelance work I do training and public speaking about being HIV positive, being black and being gay.

Wow, that’s amazing. So, what was it like, growing up in Nigeria as a gay man? It was, and still is, a big challenge being gay, lesbian or trans in Nigeria. It is not accepted at all. We should not forget that people who are considered to have ‘Free Will’ in Nigeria are less then one percent. If you go to the North of the country over 90% are Muslim and in the South more than 70% are Christian. Often they are very fanatical and for them the way a person lives their life is a binary: they are either good or bad. So there is no space for you if you do not conform to what society expects. So for me, and people like me, it is difficult to find yourself and find a space to be yourself.

So how did you cope? What helped you?

What can you do? It is better to choose your friends than to stick to a family that doesn’t support you... Exactly, the unfortunate thing is that I cannot choose my family.

What do you think the experiences of African gay men who live in the UK are like? Things are not that far removed from what it is like at home. People shouldn’t forget that the African community is very protective of their religious beliefs when they are out of Africa. Living here they are confronted by the dynamics of UK culture: freedom of speech against religion and freedom to openly express your sexuality. African families feel threatened and protective of their children so when people like me actually come out and talk I am seen as corrupt. Even though the law is very protective and there is a degree of acceptance in the UK many African MSM live in the closet and in isolation as they still have the African mentality of rejection, stigma and discrimination. At our last African MSM support group meeting one person opened up and said “three times since I have been in the UK I have attempted suicide. I am a Christian so I do not

Knowing I was gay was tough but I grew up learning to take care of myself . In my family I was technically the ‘unwanted’. Because my brother was the first, everybody loved my brother and my mother used to say she was not expecting another boy to come along. So it was like “Oh the boy we never wanted…” I know for many people that would kill them, but for me it meant that I had to go into myself and find my own strength.

How is the relationship now with your family and you community? Have they accepted you? Have they started to understand you a little better? In December I had a conversation with my mother about having a boyfriend and being gay. She told me point blank that she never wanted to talk to me about it. I don’t see my dad anymore because he has told me clearly that if I am not ready to marry a woman I should not talk to him anymore. So I wouldn’t say I have a good relationship with my family. It is not as strong as the relationship I have with some of my friends, which is very disappointing.

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Hello Bisi, would you like to introduce yourself and the work you do ?

want to disappoint my family but I do not want to deceive anybody by getting married. I just feel my life has come to a stop.”

My background is in Social Anthropology and I have studied many traditional African religions and cultures, and my understanding is that many African ‘traditional’ cultures are much more understanding and accepting of homosexuality and diversity. So I am not sure if it is true when people refuse gay African people on the notion that it is not part of African ‘values’ or African ‘culture’. It is interesting that you raise this issue. Recently I was in Antwerp at the Institute of Tropical Medicine where I was a guest lecturer. After I talked there was a young man from Ethiopia who came to have a conversation with me. He said ‘When you talk about African Culture the African culture you are talking about is that of my grandfather and great grandfather. The African culture of my generation has been diluted by religion’. The problem is we are not really teaching younger people what exactly is African. We don’t know what is ‘African’ anymore. We do not know what makes us ‘African’ what makes us unique. We have been diluted with western cultures.

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Islam and Christianity, the religions that play a big role now, arrived in Africa quite late, but their values are now used against gay people.

Yes exactly. I am from the Western part of Nigeria, where we have our own gods, our own cosmology and our own mythology about the creation of the world. This is considered to be evil and demonic by Christians and Islam: their view is, if you practice this you are not going to heaven. These religions came quite late but they have taken over and the west has been very pragmatic in spreading this divisive agenda of religion. The interesting thing is that the growing argument against homosexuality is that ‘it is not African, it is not part of our culture’. But these same people do not question if Christianity is part of our culture, even though Christianity is not. This is the irony of the argument. When you put that on the table people keep quiet, because they do not know how to respond. OK, they do not accept homosexuality because it is not ‘African’. Well, is Islam “African?’ is Christianity ‘African”’?

Well said! What do you think could be done to address these issues? Positively UK Summer 2012

“... my understanding is that many African ‘traditional’ cultures are much more understanding and accepting of homosexuality and diversity.”

Wow this is very inspirational. Do you have a message to other people living with HIV? Yes I do. One of the first times I talked about my status publicly was in Ethiopia for the international conference on AIDS in Africa last November. It was very difficult for me to open my mouth and say ‘‘I am HIV positive’’. Afterwards so many people started to approach me and send me emails saying things like ‘‘I am also HIV positive. I am going thought this I am going through that. I cannot be as bold as you.” So this started a new agenda in my life: I adopted a different perspective and embraced my status. I had always found my HIV very difficult to talk about. I was diagnosed in 2004 and I remember I wept all day. Afterwards I made sure I never discussed my status with anybody. There were signs that many things were wrong with me and, to be honest, I was waiting to die but I wouldn’t do another HIV test and go on medication because I just couldn’t face the shame. I still think we, the community, are not doing enough to engage with people who are opting out of testing because they are scared. When I finally got tested my CD4 count was less than 200 and my viral load was really high so I started treatment straight away. Treatment is working for me, my Viral Load has become undetectable and everything in my body is working, but if I had started earlier I may be doing better as my CD4 count is still just above 200 and is struggling to recuperate. This is the price I have to pay for living in silence and not facing up to my HIV. This is why I feel it is important to go around and tell people this story; I don’t want anybody else to go through what I went through. This is one of the reasons why I have set up the African MSM project, to tell people ‘‘it is good for you to test if you are positive, there is support there.’’

This is fantastic work Bisi, and you are so brave. I became open about my status in 2005 and, for me, it is a political statement. Every time I introduce myself I say ‘‘I am a woman living with HIV’’

because the visibility is so important. Every time I say it there is likely to be somebody in the audience who is HIV positive but hasn’t told anybody, but the moment that they hear it, it liberates them: You are liberating yourself and in the process you are also liberating other people. Yes, I am very strategic about it when I stand up I say: I am black, I am gay and I am HIV positive.

And this is a political statement! It is not that you want to say your own personal business, you want to create visibility. It is very important so thank you - it takes a lot of balls! What is your source of inspiration? There are so many things that have been a source of inspiration to me. In a non- patronizing way, I look at the stories of so many fantastic women in my life. The very first time I saw Winnie (Sseruma) I was like, ‘‘where is this woman from!?’’ She just blew me away! Then I met Eunice, Memory, Angelina and you. I look at what you are all doing I think; if these women can do it, I can do it. I asked myself: ‘‘how many African men in the UK are open about their HIV statuses?’’ And I felt that there was a need for somebody who is open and when it comes to issues like this I don’t mind being controversial, I was the first person to be openly gay in Nigeria. I felt I needed to do something, to put a face to this issue. It has taken me such a long time but it is important for me to let others know that they do not have to wait as long as I waited. The African community of MSM in the UK is also an acute source of inspiration for me; at the moment the number of people who turn up to the meetings is small but the dedication is inspiring. The HIV community in the UK is amazing, the kind of support you get from people. But above all you women, big time source of inspiration! I do owe it to all of you.

Thank You! So, last question: What are your plans for the future? To see more and more African MSM, not just in Europe and America, being very confident, driving the wheel of change and standing up to speak. I hope it won’t be just my face any more; someone else will come along and will inspire even more people to speak up. In my personal life I hope to settle down with my boyfriend and have children, one or two, move to the countryside… and relax!

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I see a new trend of engagement on the continent of Africa. The gay agenda is not driven by the west anymore; there is an increase in visibility. African LGBT are standing up and saying “We are here! We are gay and you have to see us. I am your brother I am your sister, you are my uncle: I cannot run away anymore.’ And we have moved away from the aggressive advocacy of saying “ if you are not listening to us we are not listening to you” we are having a conversation and it is working because we are now seeing very pro-active visible religious leaders in Africa saying: “Hold on… I do not want to discriminate against gay people, I have listened to them and I think we should start engaging with them’. I think it is because we have moved away from the militant homosexuality agenda to a more compassionate approach: discussion, dialogue…

Free HIV Treatment in England From October 2012 In February the Government announced that HIV treatment would become freely available in England to all patients on the NHS from October 2012, regardless of their residency status. This follows years of campaigning and is great news for migrants living with HIV and their communities.

The Current NHS Rules At present, some migrants will be charged for accessing secondary care from the NHS. Secondary care means treatment and services from hospitals and specialist clinics, including HIV clinics. The NHS charging rules set out which services may be charged for and who will be charged. The rules state that any migrants living in the UK are entitled to access all NHS services for free, but people on visitors visas, refused asylum seekers, visa overstayers and undocumented migrants are likely to be affected by the charging rules.

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Under the existing charging rules, sexual health services are provided free of charge but HIV treatment is not. Likewise, while some serious communicable diseases like Tuberculosis are treated for free, HIV is not.

Chargeable migrants are still able to receive HIV treatment, as it is considered ‘immediately necessary’ as defined by the NHS rules. However, they will receive a bill for their treatment, which often adds up to thousands of pounds. This, of course, creates an effective barrier to seeking HIV treatment for this group. Charging for treatment has also been a barrier to people opting to get tested for HIV (which is free for everyone), as the benefit of knowing you are HIV positive is much reduced if you are unable to afford the treatment you need. In addition to this, because the NHS rules are complicated, even migrants who are not going to be charged for HIV care sometimes avoid testing or accessing treatment because they falsely believe they are not entitled.

Behind The New Policy From October 2012 HIV treatment will be included on the list of NHS services which are exempt from charging in England. This means that anyone who needs to access treatment will receive it for free, regardless of their immigration status or how long they have been in the country.

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The change in policy was officially announced in a parliamentary debate on an amendment that Lord Norman Fowler had tabled to the recent Health and Social Care Bill, but it represents the culmination of eight years of campaigning by HIV organisations, doctors and migrant rights groups. Such groups, including the National Aids Trust, are concerned for the human rights and welfare of migrants living with HIV and, as such, we have consistently emphasised the individual health impact of the rules, arguing that charging dissuades people from getting tested and accessing the life-saving treatment they need. We have also pointed out the effect on communities. Rates of late diagnosis and undiagnosed HIV have been shown to be unacceptably high. Around a quarter of people who are living with HIV in the UK today don’t know they have it. And, of those who have been diagnosed, half found out after they should have already started treatment. Rates of late diagnosis are particularly striking in black African and Caribbean communities. For example, in 2010, 66% of African men and 61% of African women who were diagnosed as being HIV positive had a late diagnosis. This means they are not able to fully experience the benefits of the treatment that is available and they are more likely to experience poor health in the short and long term. We also know that people who are not diagnosed or on treatment are more likely to pass on HIV to others. Judging from the Government statement on the change of policy, it was this public health argument that had the most sway in final decision. In particular the 2010 HPTN 052 study, which showed that taking HIV treatment could lead to a 96% reduction in transmission, was immensely influential. In fact, the public health argument was so strong that the Government went even further in their final policy change than Lord Fowler was proposing with his amendment. The amendment as laid required that someone was present in the UK for six months prior to accessing treatment for free. Under the new rules, there is no time requirement. This will, of course, lead to more people benefitting from treatment sooner.

Future Challenges The new rules only apply to England. This is because health is a devolved responsibility and therefore Scotland, Wales and c

c Northern Ireland can decide independently whether to charge for HIV treatment. On the whole, HIV treatment charges are not levied or actively pursued in these nations. However, the next step is now to call for an equivalent change in the law in Scotland, Wales and Northern Ireland. Despite the great success with HIV treatment charges, there are aspects of the NHS charging system which will continue to affect people living with HIV. People with HIV are more likely to need to access other secondary care (for example, cancer treatment), and some migrants will still be charged for this. And until October 2012, HIV treatment remains chargeable. The Government has also brought in new immigration restrictions which affect migrants with unpaid NHS debt. We should celebrate the progress that has been made, but there is more work to do to ensure that all people living with HIV have access to the healthcare they need.

From October 2012, HIV treatment will be provided free by the NHS to everyone who needs it in England.

There will be no minimum residency requirement for access to HIV treatment. The same applies to treatment for other STIs or TB.

Until October, NHS charging rules may apply to some migrants.

NHS charging rules are slightly different in Scotland, Wales and Northern Ireland.

If you are worried you may be affected by charging rules, talk to your HIV support organisation or call THT Direct on 0808 802 1221.

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New NHS charging rules â&#x20AC;&#x201C; what you need to know

NAT www.nat.org.uk

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The Impact of the Cancellation of Global Fund Round 11 Funding - Where Are We Now? Last year, as World AIDS Day 2011 was approaching and UNAIDS was highlighting the major advances in the HIV response and the potential end of the AIDS crisis, a dramatic announcement was made â&#x20AC;&#x201C; the Global Fund to fight AIDS, Tuberculosis and Malaria had cancelled its round 11 funding. Some countries had either reduced or cancelled their pledges to the global fund, leaving it unable to meet its financial responsibilities.

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This set the global HIV community scrabbling and deflated. It was a reality check for governments and many organisations dependent on this funding. The Global Fund has been a lifeline, provided crucial funding for the treatment of HIV and AIDS.

It was set up in 2002 and is like no other initiative as it is a partnership between civil society, the private sector and governments. According to a recent report by the International HIV/AIDS Alliance titled Donâ&#x20AC;&#x2122;t Stop Now: How underfunding the Global Fund to Fight AIDS, Tuberculosis and Malaria impacts on the HIV response, the Global Fund, which has made direct investments in 150 countries, provides about one-fifth of total international funding for HIV services. Additionally, it has been a powerful force in advancing human rights and placing people living with and affected by HIV on decision making bodies. As of December 2011, the Global Fund estimated it had saved almost 100,000 lives every month, prevented thousands of new HIV, malaria and TB infections, funded HIV treatment for over 3 million people and supplied over one million mothers to receive treatment that prevented transmission of HIV to their infants. With the Global Fund running out of money, many lives were going to be affected and the HIV response was in danger of regressing. To combat this, instead of round 11 funding, the Global Fund indicated it was to provide transitional funds to countries facing disruption of programmes before 2013. These countries would be able to apply for funding covering the most necessary needs. For people living with HIV who were already on treatment, transitional funding would be available but there were no funds for scaling up treatment. For some countries, it meant not being able to abide by the WHO (World Health

Positively UK Summer 2012

Winnie Ssany

u Sseruma

Organisation) guidelines on starting HIV treatment earlier, which put many lives in jeopardy. For its 10th anniversary in January 2012, the Global Fund announced major structural and leadership changes to make it a more viable institution. Many non - governmental organisations and other institutions decided that the anniversary would be a good opportunity to call upon governments and the private sector to increase or honour their pledges to the Global Fund. This structural overhaul has put the Global Fund on better footing. HIV is still a challenge and increasingly more people are going to need treatment in the future but many governments are still not able or willing to invest in their national HIV responses. The global financial situation is still very shaky and many countries are increasingly looking inward with little appetite for supporting any external initiatives. We need to come together and advocate that the Global Fund to fight AIDS, tuberculosis and Malaria be sustained. This article was compiled by Winnie Ssanyu Sseruma who works for Christian Aid as Advocacy & Networks Officer on Community Health & HIV To sign a petition to support the Global Fund please visit www.womenineurope.net/indexphp/page/global_fund_ petitiontog8/en

The Legacy of Violence Against Women With HIV

A study in Tanzania reported that women with HIV are ten times more likely to experience gender-based violence than those without. Anatomically, women are more vulnerable to contracting HIV than men, especially if forced or coerced into sex, and distorted power structures in relationships often result in women being unable to negotiate safer sex practices. Violence may also impair access to testing, treatment and medication. However, few formal research reports have been published to determine whether the experiences of women living in the UK mirror those of women globally. To raise awareness of the interaction between GBV and HIV, Positively UK, working alongside Sophia Forum, PozFem, Salamander Trust and WECARe+, presented a poster at the recent British HIV Association conference highlighting the issue and proposing recommendations for policy and research. The data were elicited during a focus group discussion with six women living with HIV in the UK. Each participant had experienced GBV, either from partners, family members, neighbours or service providers. The discussion found that violent relationships often became more violent following HIV diagnosis, while the complex emotional bonds with persecutors combined with the stigma around both HIV and GBV, made women reluctant to seek help.

This is particularly significant when immigrant women are legally, financially and psychologically dependent on perpetrators of violence because their residential status is tied to their partner’s. One of the participants described how her husband exploited her ignorance of the UK: ‘‘He applied for DLA (Disability Living Allowance) and in arrears got £3,000, which I said should go towards bills. He said, ‘No, I have to give at least half of that to the

Violence against positive women is any act, structure or process in which power is exerted in such a way as to cause physical, sexual, psychological, financial or legal harm to women living with HIV. Hale & Vazquez, 2011

person who sorted it out.’ I thought, ‘fine’ because that’s the sort of thing that would happen at home, but it was complete nonsense!’’ Moreover, women coming from countries where violence against women is perceived differently may not even recognise that they are experiencing discrimination. Another participant explained that ‘‘if someone asked me, ‘have you faced abuse?’ I’d say ‘no’. It took me a long time to actually say, verbal abuse is also violence. A lot of women, especially African women, suffer in silence because these definitions aren’t clear.’’ The focus group used an empowerment approach in its discussions, with strict ethical guidelines ensuring the security and safety of participants. They called for ‘‘a world where women with HIV feel safe, respected and secure; where they can experience physical and psychological wellbeing and fair treatment: a world where power is shared.’’ They want the government to formally recognise the link between GBV and HIV and for healthcare professionals to be better trained in identifying signs of violence. They also observed that HIV and GBV advocacy organisations should work collaboratively to ensure that women living with HIV no longer face the double burden of illness and violence. To view the poster online, visit: http:// sophiaforum.net/march-2012,newsletter-7/poster-on-links-betweengender-based-violence-and-womenwith-hiv.html Article by Kate Seeley, Research Associate at Sophia Forum May 2012

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The lack of research into violence against women living with HIV in the UK has meant that its impact is largely underestimated. While international studies have reported links between gender-based violence (GBV) and HIV, the UK is yet to recognise these links.

The Polish Connection The 2001 UK census recorded 60,711 Polish-born residents in the UK. Since then, with the migration that has followed Poland’s accession to the EU, this figure is estimated to have risen to 515,000 in 2010 and currently be more in the range of 1,000,000.

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Tom, who was born in Wroclaw, is HIV positive and has lived in London for nearly a decade. He first came here as a student some years ago and, after returning to Poland for two years, decided to come back. It was during this time that Tom was diagnosed: “It happened three years ago when I was 30, at that time I had been living in the UK for nine years. I was fortunate to get really great medical care in the UK and I am really grateful for that.’’ On the difference between the HIV services in the UK and Poland he comments: ‘‘20 years ago HIV was not as widespread in Poland as it was in the UK, so Poland has definitely had less experience in developing care and support for people with HIV. However, now in Poland, from what I understand, HIV care is of a similarly high standard to the UK and is available to everyone free of charge.’’

Often, reports in the UK give the impression that homophobia is prevalent in Poland. An example of this is the 2005 gay pride celebrations being forbidden by local authorities. However, on a personal level Tom hasn’t experienced any of this: ‘‘In Poland I didn’t experience this dramatic homophobia, though perhaps this is because I was careful or maybe it is because I do not look or act like people expect a gay person to act. There’s not a shadow of homophobia amongst my Polish friends, I have been made very welcome by them. Also, when I told my parents recently they didn’t mind. I told them that they had to decide if they would tell their friends and they said they would.’’ Likewise, at a national level and within Government in Poland the situation has certainly changed for the better:

Positively UK Summer 2012

“In the Polish parliament right now we have one openly gay person and one transsexual lady. Compare this to Poland say, 20 years ago and it’s a massive improvement. Also, I think right now in Poland, it is really fashionable to have a gay friend. When you disclose to someone, they’re like ‘that’s cool’. That is the reaction I’ve come across but maybe this is because of the type of people I am surrounded by in Poland and because I don’t mix with the homophobic crowd. But yes, things are definitely improving a lot in Poland.”

HIV Poland has a population of 38 million and just under 27,000 people in Poland are living with HIV (UN AIDS). This shows that HIV prevalence is low compared to other European countries, including the UK. But the numbers of people being tested and diagnosed are on the increase and there were nearly 1,000 new cases of HIV diagnosed in Poland last year.

“I was fortunate to get really great medical care in the UK and I am really grateful for that.’’ Tom comments that: ‘‘what really worries me in Poland right now is there’s this fashion; maybe I shouldn’t use this word, but this fashion for people to have sex without condoms. I just feel there’s less education, and this worries me. I haven’t come across this in London, everyone’s much more aware of HIV. Everyone,

well lots of people, use condoms. Also, condoms are available everywhere, like in the clubs. In Poland there’s less health promotion, there should be condoms in every club but there are none.’’ From 2000 to 2010, the highest rates of new diagnoses in Poland were with intravenous drug users. However, since 2010 the numbers of drug users has dropped substantially while, amongst the gay and MSM community, HIV diagnoses has risen by over 300%. “When I go out to a club in the UK, and I know this kind of club is the place you can have sex, I would get a pack of condoms straight away. Here in the UK if you go to any club you’ve got condoms left and right so if you really want to have sex, there’s no reason you wouldn’t have a condom unless you decided not to get one. In Poland it’s not like that’’. The highest rates of HIV in Poland are found in Mazovia, which is the region in East central Poland which encompasses the capital city, Warsaw. This area also holds the largest gay community on Poland. Around the time of 2005, two thirds of the Polish population living with HIV did not know their status. In the UK at this time the situation was the reverse of this, as a third of people with HIV were undiagnosed. Poland’s sexual health strategy produced in 2007 recognised that “The HIV/AIDS epidemic has created an entirely new situation in Poland”. The strategy also recognised the need to engage people living with HIV and voluntary support agencies in tackling HIV. Tom talks about the civil movement in Poland:

“In Poland NGOs are not as strong as they are in the UK. Here NGOs are quite powerful and influential but this is not the case in Poland. Until 1988 lots of initiatives were state controlled and subject to restrictions by the Government. Since Poland became democratic 23 years ago it has been developing rapidly and going in a good direction, so give us some time and we’ll probably get it’’.

Diagnosis Tom was diagnosed with HIV here in the UK in 2011: “When I was sero-converting, I went to a GP and they said it could be flu. After a week, when I did not feel any better, they said it was too strong to be flu and suggested I went for an HIV test because I had had unprotected sex a few weeks before when I was on holiday. My flatmate knew about this and, when I came back from hospital he asked for my results. I told him I was HIV positive and he told me not to worry and that he had had it for two years. That helped me a lot. If I had never told him then he would

never have disclosed his HIV status and I may not be as confident as I am about my HIV status at this moment.’ So, if someone was moving to the UK and were HIV positive what steps should they take to manage their health? Tom offers this advice: “Firstly, getting good health care is key to maintaining your health condition and ensuring you’re stable on the treatments you’re on. I go to St Thomas’ Hospital and I am really happy there.’’ ‘‘Second, I would say, disclose your HIV status to your GP. That will help a lot. Thirdly, join a support group so you can find some HIV positive people around you. This will help break the isolation you may feel, it reminds you that you are not the only one who has HIV. Then, get involved and return what you have received! Help others and make yourself useful.’’ ‘‘When I was diagnosed, I had my flatmate next to me, answering all my questions. Then a year after I was diagnosed, I thought I would like to help someone who had just been diagnosed, and help answer all of their questions. I just thought it was be a good idea, a way of repaying the debit. That is how I joined Positively UK.’’

‘‘Volunteering is good. It gives me the feeling that I am doing someone useful with my time. It’s rewarding in the sense that you can see how your mentees are progressing from being quite vulnerable to completely self-sufficient. And I hope, one day, they too will become mentors and help others.’’ For many people, like Tom, moving to a new country can be an adventure. For others it’s a means of escaping abuse or oppression. The decision to stay or return to the place of one’s birth can be a difficult one, particularly where family are involved. “From time to time I consider going back to Poland and I wonder if I really want to stay in the UK. I really like it here, it’s a great country but life in Poland has its pluses as well. My family are there, life is slightly slower, and it’s warmer. I was just thinking how HIV has impacted upon my chances of going back to Poland and I’m not sure about that. I was talking to my doctor and he was saying that to his knowledge, medical care is a very high over there, and treatments are available in Poland, so HIV would not be an obstacle to going back to Poland. But right now I met a cute guy and year ago and we feel really good together. So I’ll stay here for a while!

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“Non-Governmental Organisations (NGOs) are getting better. In February last year the first website for PLHIV started, it’s called positively.net and is run by a community of people who are HIV positive.

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Health Tourism Often, news stories about ‘health tourism’ (the act of travelling abroad for the specific purpose of receiving medical treatment) focus on UK residents flying to foreign shores for private clinical treatments, that are either less available in Britain, or cheaper overseas. However, as you might expect given that the NHS is one of the most renowned suppliers of free health care in the world, there is another side to this coin. Britain itself is, according to some, a hotspot for health tourism, with people from all over the globe allegedly coming to seek medical treatment here.

Given the huge strain that has been placed on public resources of late, it is no surprise that certain voices are calling for action to be taken to try and prevent foreign citizens, who haven’t made any tax contributions towards the funding of the nation’s hospitals, from receiving treatment in them.

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This is a contentious issue and much of the controversy lies in the fact that, in many cases, the decision as to whether or not a prospective ‘health tourist’ actually receives treatment lies with the GP they see. The health minister Simon Burns recently confirmed that the only formal documentation a foreign national would require to receive the care they sought would be a six month visitor’s visa, saying: “A decision on whether to register a foreign national who has a six-month visitor’s visa is currently for the GP to consider.’

Those opposed to the current level of openness argue that the system is being abused. The chairman of the nongovernment affiliated body Migration Watch UK, Sir Andrew Green, for instance, has claimed that: “Once registered with a GP it is, in practice, an easy step to potentially highlyexpensive and long term treatment – all at the expense of the UK taxpayer with little or no prospect of the beneficiaries ever being charged for it.” Visitors are in fact expected to pay for treatments. The only exceptions are A+E cases where immediate action is needed, such as the delivery of a baby, and diseases which are communicable and present a risk of further infections occurring. (Though HIV is a communicable condition, until this year when changes in policy were made, it was excluded from this rule and related treatments still had to be paid for.) In most cases, however, the billing is done after treatment has been given and can be avoided by giving a false address or simply ignoring requests for payment. The fact that public money is being spent in this way and is often not reimbursed has, predictably, provoked ire from the right wing press. The Express, for example, has claimed that “our NHS hospitals are owed at least £40 million in outstanding fees” and “that the average unpaid debt is £230,000”. However, in spite of this, many people dispute that ‘health tourism’ to this country even exists at all, arguing that, though

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many non-UK citizens are treated by the National Health Service every year, this is not due to visitors deliberately seeking to capitalize on any laxness that may be present in the system. Dr Richard Vautrey, deputy chairman of the British Medical Association’s GP committee, for example, has sought to fight the commonly applied label, saying: “It is too simplistic to call it health tourism. The reality is a lot more complex.” Indeed, the term ‘health tourism’ implies that people are coming to Britain with the express intention of making the most of the medical treatments on offer, with a prior knowledge of how they might expect to be treated on arrival. As a result, there has arisen a cliché of health tourist that may well bear no relation to the true state of things...

“There is absolutely nothing in the Project London data to support the idea of large numbers of overseas visitors coming to the UK specifically to seek out free treatment.” In 2006 the organisation Medicines du Monde set up a drop in clinic in London specifically aimed at providing medical care to those outside of the system, including illegal immigrants. They found that many of the patients they attracted had actually lived in the UK for three years or more before going to seek medical help and that, for the most part, despite the project being set up with the overt intention of supplying all possible care, the majority of people wanted help with simple problems, such as headaches and anxiety, that were inexpensive to treat. After the clinic had been running for two years the organisation published its findings. Susan Wright, who directed the project, said of the report they issued: “There is absolutely nothing in the Project London data to support the idea of large numbers of overseas visitors coming to the UK specifically to seek out free treatment.”

Minister made the point that: “[it] will protect the public and brings HIV treatment in to line with all other infectious diseases. Treating people with HIV means they are very unlikely to pass the infection on to others.”

The paper admits that migration patterns have greatly affected the number of people in the UK living with HIV, noting that 35% of all people in Britain who are HIV% where born in Africa, but goes on to note that in a huge number of these cases, the reasoning for moving to Britain is down to a need to “flee persecution, human rights abuses and political unrest.”

As far as health tourism related to HIV goes, this issue of reducing the chance of further transmission is an absolutely pivotal point. HIV positive people move to the UK for a huge number of reasons, so withholding care seems counterproductive as a cost saving deterrent against ‘health tourism’, especially when the financial implication of the virus being spread are considered.

They also pointed to the fact that many immigrants are oblivious to the supposed draw of health tourism, but are instead attracted to Britain as opposed to other countries because “of their country’s historic, particularly colonial links with Britain, the presence of family and friends, and the fact that English is a global language”, evidence which they drew from a Home Office report.

On top of this, creating a situation where the chances of the condition being picked up early are higher could also lead to reduced costs. As Yusef Azad, director of policy at the National Aids Trust says: “If someone is tested and treated early, it is much cheaper than them presenting themselves in hospital with a much more serious, complex condition that can cost tens of thousands of pounds to treat.”

They, like many others, felt that the regulations meaning that, unlike all other serious communicable conditions, HIV would not be treated without charge, were based on false assumptions and irrational fears about the possibility of a wave of health tourism from countries suffering endemics.

Despite these steps from the government, negative attitudes towards the provision of free health care to foreigners are still widespread and, as austerity measures bite, it is easy to see foreign nationals receiving treatment becoming an easy target for those wanting a scapegoat with which to lumber the nation’s deficit.

Thankfully, the situation has changed. It was announced in February that foreign nationals will now be able to access free treatment for HIV. Tellingly, Anne Milton, the Public Health

Will Kerr

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They’ve not been the only ones decrying the claims that ‘health tourism’ is rife. In their 2008 study ‘The Myth of HIV Health Tourism’ the National Aids Trust attempted to dispel the notion that immigrants are moving to Britain with the express intention of benefitting from the NHS.

All change! On the 20th of December 2001 I travelled to the UK from Zimbabwe, the place where I was born, to attend my aunt’s wedding. In Zimbabwe I had a very good job working for a Southern African Non-Governmental Organisation where they paid me an annual bonus in foreign currency, which I had to spend out of the country. What better way to spend it than to come to the UK, go to my aunt’s wedding and visit those fabulous January sales? I had four weeks holiday and planned to enjoy it. The wedding went very well, it even snowed, then Christmas followed and the celebrations just went on and on. But I started feeling unwell after Christmas.

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I thought I had the flu so I tried various over-the-counter medicines which didn’t help at all. Eventually my aunt suggested I get tested for HIV, just in case… I agreed and went to a GUM clinic in North London so I could get it over and done with. They told me I would get my results in 24 hours but I wasn’t worried.

I still remember that cold January morning in 2002 when I found out. I was called into a room with a counsellor or nurse (I can’t remember which) for my test results. Then came the shock! My life changed in a matter of seconds, I was diagnosed as being HIV positive. My number one worry was DEATH… I remember picturing myself like the people I had seen in the media dying of AIDS, just bones and skin. I was so sure I would return to Zimbabwe in a coffin. What would become of my one and only son? I was devastated to say the least. I was referred immediately to the North Middlesex Hospital. My viral load was over 650k and my CD4 count was below 10 so I had to start ART immediately. When I read the enclosed drug leaflets I couldn’t believe I was on treatment for HIV! For a while after this I only managed to sleep about two hours a night and I experienced very vivid nightmares; mainly of fear, fear of the unknown. Two weeks into the treatment I started having terrible side effects and other opportunistic infections kicked in. The doctors suspected Tuberculosis so they started me on TB treatment. I was taking up to 18 tablets a day but I didn’t get any better. Eventually I was hospitalised for over two weeks as I had lost a lot of weight, had high fever and was very anaemic. Also, a scan detected I had polycystic kidneys, which are hereditary in my family. However, to my relief, after three months my test results showed I did not have TB, I had an MAI (Mycobacterium Avium-intracellulare infection) so I was able to stop the TB treatment.

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Mem But my annual leave was running out, I called my boss and asked for a month’s extension sighting a kidney infection. She said it was OK. During this time, worry and I became good friends and worry brought along stress, anxiety, fear and depression to keep us company. However, my cousin took me to Positively UK to attend a support group. The worker who registered me told me she had been HIV positive for 17 years and I didn’t believe her, I thought she just didn’t want me to worry. It was here that my life took a turn for the better! My visitors’ visa was due to expire in June 2002 so a legal aid solicitor sent in my application for leave to remain on compassionate grounds. I then applied to join the Positively UK volunteer training in October 2002, I was depressed most of the time but I also realised I had to do something with my life. I went to NASS (National Asylum Support Service) and applied for accommodation and subsistence. After moving house three times, it was decided that I was to be dispersed to Middlesbrough. I did not and still do not know a soul in that area, my support network was in London, so I had to put up a fight! At the time I was waiting to see a kidney specialist so my HIV consultant had to write several letters of support showing that I still needed close monitoring. Positively UK also sent in their support letters. As each week went by I still didn’t know if I would be staying in London or not. This was a very stressful time, I was constantly anxious about being isolated if I was placed somewhere new. Also, I felt I was in some kind of open prison as I couldn’t work or travel outside the country. After having worked all my life I felt I had lost all the independence I had enjoyed.

In the end, my caseworker at the Refugee Council referred me to a community care solicitor who managed to get Enfield borough to house me. But my immigration matter was still not resolved! I got my first refusal in 2004. Their reason was that my doctor had not mentioned I had full blown AIDS. This is defined as someone with a CD4 count of below 10 at diagnosis and even two years later my CD4 remained well below 200. What bureaucracy... pages and pages of statements with references, just to prove that I had AIDS!!! The Home Office accepted our appeal and we waited for a hearing date, which came two years later in 2006. The first hearing outcome was ambiguous – the judge sympathised with me but couldn’t grant me leave to remain. We put in another appeal but when we finally went for the hearing my case was postponed. After this there was another 18 months of going to court almost every six weeks and getting postponements. The clerks at Roseberry Avenue court used to say to me “nice to see you again” whenever I turned up for a hearing. Note to self: I should go and say hello... they probably miss me! We finally got a hearing on Tuesday 8 April 2008. I had my brother and sister, my manager at Positively UK and my friends with me. The judges were both male and just being there made me very nervous, but I had to fight my corner. I had a superslick barrister and fantastic solicitor and I felt like there was a real support network in the room.

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The hearing went well, my case had been allowed under Articles 3 and 8 of the human rights act. (Article 3 of the European Convention on Human Rights prohibits torture, and “inhuman or degrading treatment or punishment.’’ Article 8 protects your rights in four areas: your private life, your family life, your home and correspondence.) The downside was that the Home Office could appeal within 10 working days and we would have to go back to the beginning if they won... Fortunately for me the Home Office’s appeal was disallowed and they didn’t put in a fresh claim! I was granted 5-year Refugee Status on 12 June 2008, and now a proud owner of a blue travel document (passport to me)! It had been a long journey but finally I could look forward to beginning a new chapter of my HIV life as a ‘normal’ person. I have since been gainfully employed by i-Base as their UK Community Advisory Board (UKCAB) Coordinator, which I love, and have made good friends as a result of living with HIV. I was finally reunited with my son in South Africa in 2011, 10 years after I left, it was a magical moment. He is now a father and I am yet to meet my granddaughter. Eleven years later, I am still in the UK, religiously take my HIV medication, plus the 6 other tablets for my chronic kidney disease. I would love to go back to Zimbabwe, but access there to the right treatment is difficult given that I will soon need a new kidney… any offers? J Mem

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Double jeopardy: immigration removal centres and HIV Evidence has shown that a series of failings in immigration removal centres (IRCs) has compromised the continuity of care for people with HIV. Guest writer Daniel Lombard investigates.

Immigrants who find themselves detained by the Home Office prior to being removed or deported from the UK are sometimes described as the most vulnerable people in society. Detainees with HIV are even more vulnerable, in part because they rely on UK Border Agency staff and private contractors to provide proper access to health care. Campaigners have argued that it is not surprising that mistakes are often made due to the complex system that is in place – the system is overseen by home office officials, who commission services from a network of private-sector security and healthcare contractors who are expected to work seamlessly alongside NHS clinical staff.

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Louise Whitfield is an associate solicitor at Pierce Glynn, a firm involved in challenging the poor standard of HIV health care in immigration removal centres (IRCs) on behalf of detainees. She explains: “The Home Office detains the person, private contractors arrange transport, private healthcare providers are at the removal centre and specialist HIV doctors are at the hospital, and in some cases there are community nurses involved. You’ve got all those people trying to do different things. It’s a very complicated set-up.”

Detainees are held within the UK’s 13 immigration removal centres (IRCs). Under Home Office Detention Centre Rules,1 each IRC must provide health care to detainees; it is generally accepted in law that this should be of the same

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What the Professional Guidance Says

standard of care as that provided to people living in the community. Guidelines produced by the National AIDS Trust (NAT) and the British HIV Association (BHIVA)2 explain that asylum seekers whose applications are rejected and are not awarded humanitarian protection or discretionary leave to remain are expected to return to their country of origin. The UK Border Agency can detain anyone who does not leave voluntarily until it is possible for them to be removed. According to the guidance, more than a third of all asylum seekers come from Africa, the region with the highest HIV prevalence, and a significant number are detained in IRCs at some point during the asylum process. NAT and BHIVA state, therefore, that “there is an urgent need to consider the HIVrelated health and social care needs of asylum seekers and others in detention”. Their guidance contains the following recommendations covering the three stages of the detention process: reception, detention, and removal.3 Reception “Every detainee should be seen for a reception health screening within 24 hours of arrival in an IRC.” An arrangement must be in place between the IRC and the local HIV clinic to obtain antiretroviral medication within 24 hours for an HIV-positive detainee who does not arrive with his or her anti-HIV drugs. Detainees who inform the IRC nurse that they are HIV-positive during the initial

health screening should be given an appointment with the on-site GP within one week, and an appointment with a local HIV specialist should be arranged at the same time. Detention “Those who are newly diagnosed with HIV in IRCs should be referred to an HIV specialist to access appropriate baseline investigations and any necessary treatment.” Detainees with HIV should be allowed to keep their medication with them and be supported to maintain confidentiality. Where this is not possible, IRC healthcare staff must ensure the detainee has the opportunity to take the medication as required. Removal Detainees must not be removed unless they are deemed to be “medically stable and fit to travel”. Final judgement must be determined “on a case-by-case basis and should always rest with the IRC GP in consultation with HIV specialists”. Prior to removal, “IRC healthcare staff should ensure the detainee has been provided with:

A letter for their future treating clinicians.

* *

Three months’ supply of medication. Contact details of trusted HIV support organisations in their destination country.”

Sarah Radcliffe, senior policy and campaigns officer at NAT, says the most

Substandard care – in handcuffs A report produced by Medical Justice, an organisation concerned with the denial of health care to detainees, and published in March this year, laid bare the severe consequences of poor treatment for HIV-positive detainees. It concluded: “The process of detaining people who are HIV positive inherently puts them at risk.” It added that “the British government is willing to deport people who they know will die within a few years” due to limited treatment options available in some developing countries. Failings included disruptions to ARV regimens, exposure to the risk of contracting opportunistic infections, and denying people access to HIV specialists in hospitals, according to the report, Detained and denied: the clinical care of immigration detainees living with HIV. 4 Some people were forced to undergo consultations with healthcare professionals while handcuffed to escorts, while treatment was so detrimental that, in some cases, it “may have left [detainees] requiring complex clinical care for their HIV infection”. NAT has been aware of inconsistencies in delivering health care for HIV-positive detainees for “five or six years”, according to Sarah Radcliffe.5 People often end up in detention after being taken by officers in the middle of the night, without having their drugs on them. In the worst cases, disruption to people’s supply of HIV treatment can cause drug resistance to begin to develop. To combat this, in 2009 NAT and BHIVA published their guidelines in a 24-page advice booklet for healthcare and voluntary sector professionals: Detention, Removal and People Living with HIV aims to share the principles of best practice in this field.6

The Medical Justice report found that, among 35 cases reviewed, there were 79 breaches of the NAT/BHIVA guidelines. A spokeswoman for the UK Border Agency told HTU that the practice of handcuffing detainees for hospital appointments was not routine, and only used in certain circumstances, for example where there is a risk of absconding. But Ben Holden, HIV consultant at Hillingdon Hospital in London, disagrees: “It’s more common to see someone in handcuffs than not, though we have never had anyone try to escape. People have the cuffs kept on in the waiting area and then they are removed in the consultation room.” He adds that the use of handcuffs “simply adds to the upset and worry” for the detainee and other patients.

“The process of detaining people who are HIV positive inherently puts them at risk.” Following one incident in which doctors at Hillingdon Hospital refused to treat a detainee, because a guard refused to uncuff him, UKBA officers installed extra security locks on the windows at the sexual health clinic to prevent anyone from escaping. One of the organisations working alongside healthcare professionals at Hillingdon Hospital is Hillingdon AIDS Response Trust (HART), a local charity supporting people with HIV, including asylum seekers arriving at Heathrow airport. Simon Bellham, manager of HART, says: “The quality of health care for people in this situation is extremely patchy. It depends which detention centre and which part of the country you are in. “The system is geared towards security and the needs of the service, not the

individual. I would like to see an overhaul of the entire system.” A Complex System Primary health care within IRCs is provided by private contractors, which should allow detainees access to HIV treatment and other secondary care, provided by local hospitals. Where medication is concerned, the responsibility for prescribing drugs to detainees lies with primary care trusts (PCTs), but this will change with the ongoing NHS reforms: “It could be possible that this will be done centrally in the future by the [proposed] national NHS Commissioning Board,” NAT’s Sarah Radcliffe says. Professor Jane Anderson, chair of the British HIV Association and HIV consultant at Homerton University Hospital in London, stresses that healthcare professionals in IRCs do their best under difficult circumstances: “The GPs work very hard – I’ve met some of them and know how committed they are – but the healthcare system in removal centres is not set up to provide highquality specialist care.” But the complexity of the system is compounded by a lack of co-ordination between the UKBA and private contractors, as Pierce Glynn’s Louise Whitfield observes: “There have been a number of incidents where transport has been cancelled, because the detaining authorities take the view that a hospital appointment is less important than attending court, for example. That might be the correct decision for a dental appointment, but for an urgent medical appointment, where you could become fatally ill if you miss it, then it is clearly not correct.” In a case brought by Pierce Glynn on behalf of three detainees with HIV,7 even the evidence the Home Office relied on said: “The split of responsibility between community nurses, general practice [in the IRC] and the hospital in Sussex seems extremely bureaucratic and complicated and almost inevitably led to a breakdown in communications.”

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contentious issue is often the provision of three months’ supply of medication. “Some detainees only leave with enough for one month,” she says.

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Home Office detention guidelines8 originally stated that any person with a serious medical condition should only be detained in “very exceptional circumstances”, such as where there are public safety concerns. Following the trial involving the three detainees, however, the Home Office amended this guidance so that the very exceptional circumstances only applied to “those with serious medical conditions that could not be satisfactorily managed in detention” – leaving HIV-positive detainees with weaker legal protection. Psychological Impact

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The psychological impact of living in detention with HIV should not be underestimated. As the NAT/BHIVA guidance states, not only do people have to cope with anxiety associated with HIV, they may also previously have suffered trauma through conflict, rape, torture and imprisonment.

Lorraine Sherr, Professor of Clinical and Health Psychology at University College London (UCL), says the constant stress could cause people with HIV to suffer a mental breakdown and further damage to their immune system: “In detention you are likely to have clusters of stressors. People can stop coping and face depression and if they have chronic exposure to stress their resilience goes down. You get multiple mental health issues, not just depression and anxiety but other conditions such as posttraumatic stress disorder [...] There’s is a direct link between immune systems and mental health, and your ability to fight off infections will be affected by mental health problems.” The Case for Reform Some experts, such as Louise Whitfield, agree with the recommendation from Medical Justice that no one with HIV should be held in detention for immigration purposes. While such a radical change is unlikely to happen, others put forward the following suggestions for improving health care for HIV-positive detainees.

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Outreach services. Instead of transporting detainees to hospitals, HIV specialists should travel to IRCs. Hillingdon Hospital’s Dr Ben Holden says nurse prescribers could provide initial services, adding: “It would be better value for money than the current system that requires three guards per patient.”

Advocacy services. HART’s Simon Bellham would like to see a dedicated worker in each IRC acting as an advocate for the physical and psychological wellbeing of detainees.

Mental health services. UCL’s Professor Sherr says: “Counsellors need to be aware of their limitations and know who they can refer patients to if certain problems are beyond their abilities to address, such as someone with posttraumatic stress disorder.”

Information for people at risk of entering detention. BHIVA’s Professor Anderson says: “If we are caring for people with HIV at risk of being detained, it’s important that they know how to ask for appropriate help and have contact information that they can pass on to IRC healthcare teams.” Better co-ordination between services. NAT’s Sarah Radcliffe says: “It’s about joining the dots between the IRC management and healthcare teams and making health care for people with HIV a priority in amongst all the other pressures involved in detention settings.”

The UK Border Agency has met with NAT and BHIVA to discuss a possible audit of the treatment of HIV by healthcare teams in removal centres, hoped to begin in early 2012. Lisa Power is policy director at the Terrence Higgins Trust. She says this will be an important piece of work, but believes “there will still be problems with the immorality of sending someone away from the country to die”.

The UK Border Agency says that it takes its duty of care to detainees “extremely seriously”. A spokesperson adds: “We provide round-the-clock access to healthcare services in all immigration removal centres which are equivalent to those available in the community [...] HIV treatment is delivered through specialist PCT clinics. Every effort is made to ensure arrangements are in place in advance of detention and all detainees are interviewed by a healthcare professional within two hours of arrival where their care needs are identified and suitable arrangements put in place.” Despite these pledges, Power says THT will keep a close watch on the performance of UKBA and its contractors: “It’s so important that breaches are reported and investigated, and for charities like ours to hold the providers to account.” References 1 UK Border Agency Enforcement Instructions and Guidance (for officers dealing with enforcement immigration matters), amended 2010. See http://bit.ly/gae54D 2

National AIDS Trust and British HIV Association Detention, Removal and People Living with HIV: Advice for healthcare and voluntary sector professionals. 2009. See http://bit.ly/nfISFr

NAT/BHIVA Op. cit.

Medical Justice Detained and denied: the clinical care of immigration detainees living with HIV. 2011. see www.medicaljustice.org.uk/ images/stories/reports/d%26d.pdf

See National AIDS Trust Immigration Removal Centre Responses to HIV and AIDS: Results of a survey of healthcare managers. 2007. See http://bit.ly/qAiFQz

NAT/BHIVA Op. cit.

TN (Vietnam) and others vs the Secretary of State for the Home Department, Queens Bench Division, High Court of Justice, July 2010. See http://bit.ly/nYQ13s

UKBA Op. cit.

This article first appeared in issue 209 of NAM’s HIV Treatment Update, Autumn 2011. For more information on NAM and HTU, or to subscribe to HTU, go to www.aidsmap.com

Case Study: George’s Story

George is now living in rented accommodation in Essex, awaiting judgements on various appeals. Here he recalls his traumatic experiences in Brook House immigration removal centre, near Gatwick. “It’s hard to describe the feeling of being in detention with a serious health condition. All the emotions you go through, it’s something you only understand if you have been there. If someone said ‘I give you £1 million for one year’s detention or I give you no money to be free’, I would be free every time. “I came to London in 1993 to escape civil war in my country. I was refused asylum but appealed, and legal cases went on for a number of years. “I reported to the Home Office as usual on 5 August 2009. I expected it to take five minutes but they told me to stay and detained me. Later I discovered it was because my appeals were exhausted. “Before I was detained the doctor told me I had HIV but said I didn’t need medication, which surprised me. After a month in detention I saw a nurse and HIV consultant who prescribed ARV medication. But I wasn’t able to get this because he needed the file from my previous doctor and it took three or four weeks to arrive. “I went to East Sussex Hospital every couple of weeks, but I missed three or four appointments because there was some

blunder involving the contractor. A couple of times the cab didn’t show up. Another time the person in the detention centre forgot to book transport. “I was worried – if the first line of medication failed, I was in trouble. I was afraid my life was in danger because I could get deported at any time, I was thinking how am I going to deal with this? “I was very frustrated and anxious. I just kept it to myself; the only person I could talk to was my doctor. I could use the telephone but who could I talk to? I lost contact with my family a long time ago. “I missed two weeks of medication and had to be moved to another regimen because I developed resistance. As long as you take the pills you feel you are safe. But when you miss it you think ‘what’s going to happen, am I going to be OK?’ I was afraid I would get AIDS. “I was told three or four times I was being deported. Emotionally it is very difficult. It’s worse than someone beating you up, because then you know someone will stop and you can relax, but in detention it’s like someone is beating you up and it will never stop. The Home Office is totally in control. “I’m very grateful to my lawyer for supporting me and providing a very good defence. “I know my life is going to be difficult if I go back to Africa. I would have to live like a drug addict where you just get enough money to survive and you don’t care about eating or sleeping. I don’t think I would tell my family about my status because in Africa it is a shameful thing to be HIV-positive. “I’m worried I would not have access to the medicine I need. If it is available, it would be very expensive. As far as I know there are no pharmaceutical companies in my country. Even aspirin is imported so they probably wouldn’t have access to complex medication like ARV.”

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George [not his real name], from central Africa, spent nine months in detention from August 2009 to May 2010. He had overstayed his visa and faced removal from the country. He was diagnosed with HIV shortly before entering detention. George was one of three people who challenged their detention on the grounds that “management failures” had made their detention unlawful. During his time in detention he missed several healthcare appointments and ran out of medication for two weeks. This was rejected by the High Court in 2010 but an appeal is being considered.

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Let’s Talk... Pregnancy Are you or your partner HIV positive, pregnant or considering pregnancy? Then read on. Here is some information to get you started on the healthy happy journey from conception to pregnancy, baby and beyond.

“If I’m positive, I’m positive. That’s done, I can’t do anything about it. [.…] I want to tell every woman who’s positive (to) just to go ahead and that she doesn’t need to feel any worries or be scared because challenges in life are everywhere, especially in pregnancy […] For me, HIV is normal. My immune system is still high. I’m not scared of HIV. I want to have more babies. I advise all women to go ahead and enjoy their lives.”

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Stopping transmission

HIV positive women who adhere to their medications and have a managed delivery are 99% likely to have a healthy, HIV negative baby. This is because during pregnancy the risk of transmission is generally low as the placenta protects the baby from HIV. Also, HIV medications, which reduce viral load (the amount of HIV in the body), contribute to the prevention of transmission. A common reason children are being born HIV positive in the UK is that mothers are presenting late to their clinic. As a result of this their viral load is high, their CD4 count is low and they could also be experiencing HIV related illnesses. During pregnancy and birth invasive medical procedures and birthing aids are not advised due to there being a risk of exposure to the mother’s blood. It is also recommended that the baby is born by caesarean section, they are fed formula milk and that they take ARVs (anti-retroviral medication) for the first two weeks. Planning your pregnancy When planning your pregnancy talking to your GP or HIV consultant will help you understand the various options

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available to you. They will also provide you with information about which AVRs are suitable during pregnancy. As with all women who are planning for a baby, your health is a priority. Eating more folic acid is advisable as it has been shown to improve fertility and help prevent serious birth defects. This is found in dark leafy vegetables like spinach and broccoli. It is also important to get a cervical smear test and get tested for all STI’s. Knowing when you are ovulating is beneficial as this is when you are most fertile, your HIV clinic will help you with this or, alternatively, you can buy a test over the counter from a high street chemist. It is also a good idea to stop smoking, drink less alcohol and try and ensure you are not overweight or underweight. Conceiving your baby Your choices on how to conceive is dependent on which one of you, or if both of you, is HIV positive. Your HIV consultant will support and guide you through the options and processes available for safe conception. If both you and your partner is HIV positive you may be able to conceive naturally. This can be done through having timed unprotected sexual intercourse at your most fertile time of the month. This method is advised as regular unprotected intercourse may increase the risk of acquiring other sexually transmitted infections and/or acquiring drug resistant strains of HIV. If you are HIV positive and your partner is HIV negative it may still be possible to conceive naturally if certain conditions are met. These are outlined in a text known as The Swiss Statement, which says:

You must have had a suppressed viral load for at least six months

You must be on HAART and with 100% adherence

You have be regularly tested for and there must be no presence of STIs

You should have counselling and form an agreement with your partner as a couple

This is being recognised more and more. In the UK the National Institute for Clinical Excellence (NICE) set guidelines for standards of healthcare. They are revising their pregnancy guidelines and are currently consulting around adopting the Swiss Statement. So watch this space. Even if the conditions in the Swiss Statement are not met you could consider the use of PREP or PEP. PREP (Pre Exposure Prophylaxis) and PEP (Post Exposure Prophylaxis) refer to anti-retroviral drugs to be taken by the negative partner before or after potential HIV exposure. Another option is to conceive through DIY artificial insemination. This is when the man ejaculates into a pot so the woman can then use a plastic syringe to insert it inside her. You can also undergo assisted conception, including a process called sperm washing. Pregnancy If you are on treatment you will be recommended to remain on these. If you are not on treatment and have a low viral load it is still recommended that you go on AVRs from week 20. However, the details of this will depend on your individual medical circumstances.

Delivery There are two options for delivery: Vaginal (or natural birth) and Caesareansection (or C-section). There are advantages and disadvantages with each: With Vaginal delivery the mother’s recovery time is quicker, however, the birth can be a longer process than a C-section and there can be an increased risk of transmission if interventions such as forceps become necessary. A C-section is quick and has little exchange of fluids. However, this is major surgery and therefore the recovery time can be longer. “I was worried: ‘How can I handle it, the baby, and alone as well?’ But (Positively UK) have taught me a lot: ‘You can do it’, ‘Take the medication and the baby will be alright, ‘Most of the babies, when they’re from positive women, they are okay’. This sort of information…it helps me.”

you cannot afford formula and feeding equipment, you may be able to get it free of charge. Please check with your midwife, doctor or HIV support agency. After the delivery, look after your health! Attend all your follow up appointments, continue to take treatment as advised, use contraception when having sex and eat well. Most of all enjoy being a new parent. You will have your own unique circumstances and questions but always remember: you are not alone! If you would like to talk more talk to: Your HIV Doctor or Nurse: they can advise you on options for conception and managing your health from preconception to post-natal care. Positively UK’s From Pregnancy to Baby and Beyond team: our Mentor Mothers are women living with HIV, and have experienced pregnancy while being HIV positive. All have been trained and are up-to-date with latest options and choices for your pregnancy. Ante-natal results and choices (ARC): a charity providing support should any tests for your child’s health come back positive and you are unsure how to proceed with the pregnancy. Article funded by Abbott with no editorial control or input.

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Tests offered during pregnancy include blood tests, STI tests, external ultrasound and foetal monitoring. There are also tests that should be avoided such as internal foetal monitoring, foetal scalp sampling, percutaneous umbilical cord sampling and any invasive procedure that allows mother/baby blood exchange.

Caring for your baby To ensure that your child does not develop HIV they will have to be given anti-retroviral medication in syrup form for two weeks. Babies will have blood tests the day they are born, again at one month and then again at three months. Negative tests here will provide you with the peace of mind that your baby is HIV-free. There is only a small risk of transmitting HIV through breastfeeding if the mother is on medication and has an undetectable viral load. However, the risk is still there. Therefore, it is recommended that the baby is fed formula milk, this way the risk of transmitting HIV to the baby is zero. If

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Immigration and HIV in the North West and Manchester Lynda Shentall is the director of services at George House Trust, the largest HIV Health and Social Care Charity in the North West of England. Writing for Positively UK, she explains how her organisation deals with issues around immigration and HIV.

Manchester and the North West have a long legacy of immigrants and a rich cultural life built in great part by migrant populations. You only have to visit Manchester to experience this: there is the ‘Curry Mile’ in Rusholme, a vibrant Irish community, a very long-standing Polish community as well as diverse and long standing African and Afro-Caribbean Communities all contribute to a proud, wide-ranging multicultural community. Meanwhile, East Manchester is currently embracing Middle Eastern culture, and takes pride in Sheikh Mansoor bin Zayed Al Nahyan whose ownership of and investment in Manchester City has just helped them win the premiership.

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However, it is fair to say that for some areas and populations the transition to multiculturalism has been more seamless than others, and there have been well-documented tensions in and around Oldham and parts of Lancashire, including the famous Oldham race riots in 2001.

George House Trust (GHT) is a large regional HIV support agency based in Manchester and covering the North West of England. We offer a wide range of services including one to one support, a range of peer support spaces, the Calabash project for African men, African Peer Support, Community Support, money advice, our own welfare fund and a great deal more. Service users who attend GHT come from all over the world and GHT is a point of first contact for many people affected by HIV. At GHT we help people to manage their HIV as well as the challenges they face living in new country. We help them to integrate and embrace life in UK. We organise and facilitate educational workshops intended to empower our service user with the knowledge and confidence to manage their lives without fear or stigma. In order to make our services accessible to people living across the region we pay the travel costs of those on a low income. To find out more about George House Trust’s services then please see our website at www.ght.org.uk. Last year George House Trust supported over 1850 people who were living with HIV. We have a very long history of supporting people subject to immigration control. We have supported a number of anti-deportation campaigns of HIV positive

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individuals and we have, and still do, undertake a great deal of support work for people who have no recourse to public funds and may be destitute. We do this by offering practical support but also by undertaking a large volume of advocacy work that ensures that people get the support they need and are entitled to. What is the current picture for people living with HIV who are either subject to immigration control, are refugees or now have settled status? Before answering this it is first important to state that people living with HIV who are subject to immigration control have a diverse range of situations and circumstances. While some may be asylum seekers or refused asylum seekers, very many are people who came to the UK to work, study or visit and for whom an HIV diagnosis has materially changed their plans in that returning home may mean that they do not receive the good care they need to live a long life. HIV organisations have seen an increase in the numbers of people they are supporting from African communities over the last twelve years. An HIV diagnosis does not mean that someone can make an application for Leave to Remain in the country and there has been an increasing hardening of the ability to make an application just on the basis of HIV over the last 8 years. Now it is incredibly difficult to make such an application unless someone is seriously ill or there are other strong factors. The last five years have seen a general “clearing out” of a backlog of Home Office cases under the legacy case system, which deals with asylum applications made before 2007. For many people this has been a positive move: many have now got their Leave to Remain in the country, often after waiting for a number of years (even, in some cases, a period as long as eight to ten years). Even then the transition to benefits and housing can take months and months, but overall this is a good thing, and means that organisations that help immigrants settle and integrate in the UK – including HIV agencies and charities – now have important work to do. HIV agencies have a role to play at this time not only supporting people on to benefits but also supporting people

ct je b u s le p o e p rting o p p u s f o y r o hist g n lo y r e v ol. r t a n e o c n o i t a We hav r immig

Although HIV agencies can help with this, it is sadly still the case that, for many HIV positive people subject to immigration control in the North West, the picture is grim. While organisations such as the George House Trust can get some people support via social services, accessing and then keeping this support is increasingly difficult. Others who are refused asylum can access Section 4 support – usually this is in voucher form so there is no cash attached. While this is better than nothing, it is hardly a bright prospect. An increasing number of people that GHT are supporting are completely destitute; that is, with no right to any means of benefit or support and no right to work. Right now GHT are supporting about 80 HIV positive people in this situation. We work with an excellent agency called the Boaz Trust in Manchester, who help to house many of the people that we are working with. Sometimes this is in people’s homes, although they also have some houses that they use, and run a winter night shelter. Please see their website for more information (http://boaztrust.org.uk/). In desperate situations we have sometimes given someone a payment from our welfare fund to buy a tent. There is a network of support here, though it is based on the goodwill and strength of people, rather than on outside resources. To give an example; at one time a woman living

with HIV took home another – who she had never met before but who was in reception with nowhere to go that night. She accommodated that woman for several weeks, until the Boaz Trust could house her. Often service users accommodate friends – and can jeopardise their own accommodation in doing so. Sadly, sometimes service users have to stay in much less favourable situations, trading work – or worse – for accommodation. We are also working with and supporting a significant number of people, subject to immigration control, who have been imprisoned as they have been caught working illegally. The immigration system places a great deal of pressure on families, and sometimes the strain can be touch and cause them to break down. Our Calabash Project which works with African men tries to meet some of their support needs and similarly our African Peer Support Project, which has over 25 HIV positive African volunteers, can provide guidance and support. Many of our volunteers are themselves destitute. Destitution is a major issue. At George House Trust we run a food parcel scheme and we also refer those that are eligible to the Red Cross who have a number of food parcel schemes across the North West. So what is the role of an HIV agency, in terms of helping those who face not only issues around their condition, but also issues around immigration and citizenship? The answer is active support to people in very difficult situations. We have seen many people get their status over the years, some against all odds. We need to find innovative solutions, campaign, advocate and influence policy where we can. Although George House Trust, and similar organisations, do valuable work in this area, the range of work that we do shows the range of problems that people can face.

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get access employment opportunities. Often we find that many people take the first job opportunity that comes along and can end up stuck in low paid work, despite the fact that they are skilled workers who could find much better work. Another issue is debt and financial management; it’s important that, once someone has been able to get their citizenship and passport, they have access to reliable and non-exploitative funding sources such as credit unions, rather than accruing disabling amounts of debt.

George House Trust Service User’s Story Bill’s Story My families journey to get the right to remain in this country has been very challenging and distressing. However, through it all we have had such great support from different organisations including George House Trust.

After serving three quarters of my sentence I went home on tag to wait for my first tribunal hearing on the immigration case. When the day came it was incredibly stressful, and we lost the case again, but with the right to appeal.

After ours and our child’s HIV diagnosis we realised how important it was to sort out our immigration status so that we can save all of our lives. Going back home with this condition was not an option.

When we finally got the hearing date from the upper tribunal it was scary as it was our last chance to try and fight for the right to remain in the UK.

However, going through the immigration process proved to be even more stressful than accepting the fact that we were HIV positive. In the process of trying to provide for our family I started to work illegally. This landed me in even more trouble when the UK Border Agency (UKBA) found out and I was arrested on the day that we were given the refusal of our application.

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I was taken to court where every detail of mine and my families HIV status was discussed openly. I was sentenced to up to 9 months imprisonment and the guard decided to tell everybody in the cells about my status, it was also on every bit of my paperwork without my consent. It was painful.

But, to our surprise, the UKBA decided to withdraw the case and grant us leave to remain just the day before our hearing, the feeling was awesome, the best day of our lives. As if the battle with UKBA wasn’t tough enough, getting through the Job Centre process proved to be even harder and more complicated. It ended up taking over 2 months to get our state benefits through and over 6 months for our children’s benefits to come through. During this time we had to survive on the littlest money I have ever known. Even though it took UKBA another four months to release our paperwork we think, as hard as it has been, it’s been worth it, and we are so thankful for the continuing support from GHT, Barnardoes and other organisations.

Charlene’s Story Charlene is an HIV positive woman from Zimbabwe. She came to the UK in 2008 to seek asylum and to escape human rights abuses. Her sister lived here, but sadly she died shortly after Charlene arrived. Despite having visible scars from her torture Charlene’s application to remain in the UK has been refused. She lives in a Boaz Trust house and survives on GHT and Red Cross food parcels. She is an active GHT volunteer. I am HIV positive and I have been applying, without success, for leave to remain in the UK since 2008. HIV is officially classified as a disability but the Home Office does not acknowledge this as they think people can live with it. But living with HIV is not easy, especially when you are going through the complicated process of immigration. When I first applied for asylum I was fit, but since then my health has been deteriorating gradually and I am now suffering from numerous HIV-related illnesses. I feel that this is much harder to deal with because of the uncertainty of my future. I have suffered from fatigue, severe depression, high blood pressure, heart and spinal injury and arthritis, to name a few. I feel that the effects of HIV are unbearable and, on top of this,

being called an asylum seeker is a burden; the term feels so degrading. I feel like I have completely lost my self-worth. Being destitute and homeless is a nightmare and having no access to public recourses has always driven me crazy. For those who have homes it is difficult to perceive what being destitute is like. Another difficulty is reporting to Dallas court, it makes me feel like I am a criminal with no conviction. I wish the immigration law could be a bit lenient to people living with HIV. If it wasn’t for the generosity of organisations like GHT, BHIVA, Body Positive and Positive Catholics I feel that most of us could have died a long time ago. BY C

Positively UK Summer 2012

Support Positively UK

Can you help? £5

a month provides travel costs allowing someone isolated to access peer support in person a month provides an hour’s creche worker allowing a £10 dependent mother to attend a support group us to a run an hour’s group where people can access £20 allows peer support and meet others living with HIV You can do this at www.positivelyuk/donate Positively UK is a registered charity 1007685 w w w. p o s i t i v e l y u k . o r g

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This year Positively UK supported over 1,400 people living with HIV. Next year, with cuts across the statutory sector, we expect numbers to rise. We make a difference by empowering people to come to terms with their condition, build confidence, and establish long-term friendships and support networks. “I am confident in the support I receive from Positively UK in terms of disclosure to my family, continued peer support and my skills around engaging in service providers have increased immensely.”

12 Practical Ways to Make the Most of Your GP 1)

Know how to find your GP. You must register with a local GP – one in your catchment area. To find a local GP visit NHS Choices at www.nhs. co.uk and search for a GP by your postcode - you should have a choice of two or three. Or you can ask your HIV clinic to help you find one.

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Know the names of the medications you are taking. This includes not only your HIV medications, but anything else you may be taking for other health problems. You can also write this list in your note book.

Talk to your GP and explain your situation. If a GP is going to look after your health effectively, they need to know a bit about you. Don’t get annoyed if they ask questions that you’ve told a previous GP, especially if it’s a GP you haven’t seen before. Be ready to ask questions. If something is unclear, you don’t understand or when you are unsure ask for clarification. Don’t hold back – it’s your health. Get the information you need.

Ask about out of hours appointments. If you work full time, find out if your GP practice opens evenings or on Saturdays and book appointments to suit you.

Ask to see the same GP every time if you want. Although you may need to wait a bit longer, if there is a GP you feel more comfortable with in your surgery you can ask to see them for all your appointments.

Plan what you want to say to your GP. Take time to think about what you want to know before you go and write it down. Remember that often a consultation lasts less than 10 minutes.

down what your GP tells you. Your GP may 10) Write suggest things you need to do or refer you to other

your HIV status to your GP. A GP is a doctor, 5) Disclose and will be better able to look after your health if he or

she knows all the facts. This includes your HIV status. If you don’t disclose there is a risk a GP may prescribe a medication that could interact badly with your HIV treatments or vice versa.

Remember GPs and practice staff, including receptionists and practice nurses, are bound by a confidentiality agreement; they cannot disclose your HIV status. Telling a GP can seem like a big step; if you need to, talk it over with someone first, call a friend, support worker, or a peer mentor at Positively UK.

Know your CD4 count and viral load. Keep a note book where you write down all your counts and other medical information.

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agencies. If you write things down you will remember later which will help you to take any action necessary and pass on relevant information to your HIV clinician. answers if a General Practice refuses to register 11) Get you. If you are denied registration, always ask to know the reason why, this will not only give you an explanation, but it will also help you if you need to take any further action. A GP in your catchment area cannot refuse to take you onto their register. If they do you should contact your local PALS www.pals. nhs.uk or Positively UK on 0207 713 0444 who will help take your complaint forward. you are not happy with your current GP you can 12) Ifmake a complaint and/or change. If you need support to make a complaint you can do it with the support of your local PALS (Patients, Advice and Liaison Service) www.pals.nhs.uk or call Positively UK on 0207 713 0444.

I Want Great Care If you are planning to move, or have recently moved, to a new town or country you will need to find a local GP and dentist. Our HIV clinics increasingly need us to tell GPs our HIV status, so that they can safely prescribe other medications which are not going to cause any problems with our antiretroviral drugs. However, the prospect of telling a GP or dentist about your HIV status can cause anxiety for some people. Many of us have heard stories or been in a position where GPs with little HIV-awareness have sent patients back to their HIV clinic because of a lack of confidence in dealing with what may be entirely normal health concerns. Or perhaps have had a dentist suggest you come in for the last appointment of the day to ‘minimise infection risks’ (something which is basically disability discrimination, according to the Equalities Act). In an ideal world every GP and dentist should be well informed and have good HIV knowledge and good communication with their patient’s HIV clinic and doctor, but you can’t always guarantee that in advance.

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That is why www.myhiv.org.uk, which provides members with targeted information on local HIV services and support across the UK, has taken this issue on board and created a new resource. They have teamed up with medical recommendation site ‘I Want Great Care’, so that you can submit anonymous reviews recommending the good healthcare services that you use. Every review that is made via the dedicated link will have a Terrence Higgins Trust logo against it, which then indicates that this service was recommended specifically by someone who is living with HIV. Every recommendation that is made will then help others living with HIV to find local health services that are ‘HIV-friendly’. In keeping with the solution-focused ethos of MyHIV this is a recommendation service and not a place to complain. If you would like to make a complaint about a service please contact your local PALS (Patient Advice and Liaisons Service) in England, Community Health Councils in Wales, NHS board in Scotland or the Northern Ireland Ombudsman. So, if you have accessed services that have a high level of knowledge and good attitude towards HIV please get online and make your recommendations so we can share good practice and help each other find the care we need. The link to use is https://tht.iwantgreatcare.org Garry Brough

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British HIV Association (BHIVA) Spring Conference, 2012 The wind and rain came down upon the International Conference Centre in Birmingham as clinicians, nurses and pharmacologists gathered inside. The event was the British HIV Associationâ&#x20AC;&#x2122;s Annual Conference. Healthcare staff were joined by representatives from pharmaceutical companies as well as from a wide range of voluntary sector agencies. We were all seeking to meet, share latest research and look at what is to come next in HIV, particularly in relation to recent reforms to the NHS and cuts across public spending.

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Single Tablet Regimens

The conference opened with a discussion on single tablet regimens, or STR, for those of you in the know. Currently the only STR is Atripla, containing Efavirenz. This has been found not to be effective for everyone, particularly those with mental health issues or women considering pregnancy. Both Robert Fieldhouse of Baseline (who gave the patients perspective) and Anthony Mills, MD, from California (who provided the clinicians standpoint) presented evidence of how single tablets are better for the patient, arguing that they improve adherence and patients have reported an improvement in their quality of life. However, many drugs are coming out of patent, meaning that companies no longer need a licence to produce them. Efavirenz is an example of this. There is a case that it would be cheaper to produce Efavirenz separately which would mean that each drug that currently makes up Atripla would then be prescribed individually, instead of being combined into one. This may not be good news for patients who find taking their medication in a single drug easier to manage, but it may be opted for due to the need to cut costs. However, there is a ray of light: studies in to STR show that patients adhere better to their treatments when it is in a single tablet form. In fact, it has been shown that there is a 24% lower rate of hospitalisation in single tablet form patients because people are keeping well and not requiring care for acute problems. This is useful information as, in the current climate, presenting this as an economic case may be best option for convincing commissioning authorities to invest in single table regimes.

PositivelyUK Summer 2012

Gender Violence Gender violence, or Intimate Partner Violence, was discussed at the conference in various forms. At present there is little understanding as to how partner violence may affect peopleâ&#x20AC;&#x2122;s access to healthcare. Positively UK, in partnership with PozFemUK, We-CARE, and SOPHIA presented a poster on gender based violence. This built on evidence that HIV increases violence against women. Based on the findings of a focus group, the research found that violent relationships could become increasingly violent following the womenâ&#x20AC;&#x2122;s HIV diagnosis and that such abuse extended into areas such as emotional bullying. It also found that legal systems discriminated against women taking action against their violent partners. Dr Rageshri Dhairyawan from Homerton University presented findings from a study which used 191 female patients who were HIV positive. It found that over half of the women in the survey said they had experienced partner violence in their lifetime and, for one in seven, partner violence had occurred in the last year. One in seven also said the violence had occurred when they were pregnant. Furthermore, violence was higher in those experiencing mental health issues, younger women and some BME (Black and Minority Ethnic) groups. Both the community sector paper and Dr Dhairyawan paper recommended more research be undertaken into the issue of gender violence. It also suggested that work within HIV clinics should be increased to identify and support women experiencing violence.

Pregnancy

Healthcare Reform

Dr Carlotta Modestini from Unversity College London presented research into women presenting late into their pregnancy. As a result, women received less than 14 days medication prior to birth which, in turn, increases the risk of the transmission of HIV to the baby. The study, which included 76 female participants, found that those accessing medications late were those diagnosed during ante-natal screening. Many of the group had presented late to hospitals, hence tests were carried out late into the pregnancy and, in some cases, there was HIV denial. This was notable amongst women of African origin, and it is recommended that actions be taken to improve access to healthcare services for migrant women, including ante-natal care. For those diagnosed prior to pregnancy the main reason was refusal to take treatments. Further research is required to understand why women are refusing treatments in pregnancy.

Candace Imison, Deputy Director of Policy from the Kings Fund, presented on the restructuring of healthcare in England. She stated that the level of reform currently happening is greater than any that has occurred before. The major elements of the changes are to create a ‘level playing field’ between NHS and private providers, making it easier for private firms to compete with NHS organisations (such as hospital trusts) to provide health services. They will also create a greater role for clinical staff, notably GPs, in commissioning as well as delivering services. Local authorities will now be responsible for public health, such as sexual health and HIV prevention. There will be increased independence for those commissioning and delivering services, with less direct control from central government and the Secretary of State for Health.

Stasis: The new structures mirror current arrangements, with new Clinical Commissioning Groups resembling Primary Care Trusts, and weak links between the Groups and Local Authorities.

Market-Based System: Competition leads the new structures with an influx of private providers and private insurance companies

Integration: The new structure lends itself to Clinical Commissioning Groups, Local Authorities and providers working closer together and setting up new joint systems for health and social care

Disintegration: Clinical Commissioning Groups are unable to manage their budgets and they take little interest in public health with poor relationships with Local Authorities.

Young People Caroline Foster from Imperial College London presented on behalf of HYPNet, the HIV and Young People’s Network. This study looked at deaths amongst young people living with HIV over an eight year period. It found that, of 305 children the survey looked at during that time, 11 had died. Causes included infections as a result of the young people stopping medications, and suicide. Further investigation into those who had died identified that all had a history of poor adherence to medications while in the paediatric (children’s) clinic and many also experienced mental health issues. The survey identifies the complexities of supporting young people and stressed that new and creative approaches are require to support this vulnerable group. Another study, presented by Susan McDonald from Imperial College London, looked at using a mixture of financial incentives and motivational interviewing to support young people in adhering to their medications. Financial incentives have proven effective in schemes such as the education maintenance allowance and the study sought to replicate this with HIV adherence. The project found that financial incentives worked, and were the key factor in the initial stages, while motivational interviewing and a focus on the achievement of higher CD4 counts and experience of better health came to the fore later. This project could be rolled out as an effective means of supporting young people to adhere to medications.

Of course the future is likely to be a combination of all of the above, with some parts of the country and some systems working better than others. There are opportunities in increased clinical leadership and better ways of working. Nevertheless the final sombre note was that disruption is likely, and in the process we could see staff demotivated and the quality of services suffering. BHIVA, as always, presented new insights into supporting people around medications, initiatives that could be implemented wider and areas for further investigation. However, this year it was against a backdrop of change and uncertainty, and there will no doubt be stormy times ahead.

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Another study reviewed the use of the drug Raltegravir in pregnancy. Led by Dr Melanie Rosenvinge from St George’s NHS Trust the study looked at women presenting late into their pregnancy and pregnant women with high levels of viral load. A study of 57 women found that Raltegravir caused some side effects such as nausea, which, however, subsided over time. It also found that, from 57 live births to date, only vertical transmission has been reported. Raltegravir could therefore be effective rapidly reducing the viral load of pregnant women.

Despite arguments to the contrary, the Government have refused to publish the risk register, which is an assessment by civil servants into potential threats to services as we move from the current structure to the new one. However, the risk register has been leaked so Imison was able to highlight some of these potential threats including: challenges for GPs in taking on a new role, the need to make these changes against a backdrop of funding cuts and a shifting focus on the restructuring as oppose to service delivery and quality. The future looks uncertain. Imison presented a range of possible scenarios:

British HIV Association (BHIVA) Guidelines The 30th of April, 2012 has seen the long awaited release of the new British HIV Association (BHIVA) guidelines for the treatment of HIV positive adults with antiretroviral therapy. These are crucial documents for our health, they will influence what treatment doctors will prescribe and set up an evidence based context for social-care and policy making. I am pleased to say that towards the completion of these guidelines BHIVA have consulted extensively with the community of people with HIV and have held two consultative meetings, the latter of which was widely attended.

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There are two notably innovative sections in the guidelines: Treatment as Prevention and Patient Involvement in Decision Making.

Treatment as prevention This is ground-breaking as it acknowledges the prevention revolution brought about by the HPTN052 study. This was a study which looked at couples consisting of one negative and one positive partner who did not always use condoms. It showed that people on HIV medications are 96% less likely to transmit HIV. Itâ&#x20AC;&#x2122;s a fact: there are HIV positive people who are not able to use condoms, perhaps because they want to conceive, or because they feel it interferes too much with the pleasure and spontaneity of sex. Obviously the guidelines stress the crucial importance of the use of male and female condoms to reduce the risk of HIV transmission but, importantly, they acknowledge that

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starting treatment in order to avoid passing on HIV to a negative partner is an ethical option. I feel this is an amazing acknowledgement of the reproductive and sexual rights of people with HIV. It also contributes to the reduction of stigma associated with HIV and provides a strong argument to make treatment available to all.

Patient involvement in decision making BHIVA acknowledges that, for treatment to work effectively, people need to have a good understanding of how it works and also be able to discuss the concerns that initiating or changing treatment may bring. They also mention that community advocacy and peer support can be helpful in supporting people living with HIV with worries about treatment. How patient involvement will happen, however, is not spelled out, and many doubts still exist as to what exactly needs to happen for shared decision making to truly take place. At present BHIVA is also working on some new guidelines on Standards of Care for People Living with HIV. BHIVA aims to launch the new Standards of Care on the 1st December, 2012 which is World AIDS Day. To know more about the treatment guidelines see the BHIVA website or follow my blog, were I report on my role as community representative. http://www.bhiva.org/Home.aspx http://hivpolicyspeakup.wordpress. com/2012/03/21/what-reallymatters-to-people-with-hiv-n-1testing/

http://hivpolicyspeakup.wordpress. com/2012/03/30/what-really-matterto-people-living-with-hiv-sexual-andreproductive-health-and-rights-part-2/ Silvia is Community Representative on the BHIVA Board of Directors and writes a blog : Speaking Up The Diary of an HIV+ activist

This is my farewell... For 11 years you have witnessed the changing times of both my life and the life of HIV: from the early days of uncertainty to the more recent years which, due to the continually developing and refining of treatment, have brought with them the possibility of a more meaningful future. You, dear readers, have been witness to many moments that, when I was first diagnosed, I never thought I’d live to see. Through my column you have shared with me moments of sorrow, joy, challenge and change, as I struggled to find my way through the tangled undergrowth of living with HIV and out into the wide skies of life, as one year tumbled into another. You have watched my children grow into adults with children of their own and shared with me the unexpected joy of becoming a grandmother! You have seen me grow through the many experiences that have shaped and formed my understanding and development; the loves, losses, hopes and fears of being a woman living with HIV in our world. But the time has come for me to move on and for this space to be taken up by someone new, with stories of their own to share. I offer you my thanks for your witness as readers and take my leave of you with this last story: There came a point in my journey with HIV when I stopped making friends with others who were HIV positive – you have to remember that my history takes me back to the days when there were no effective treatments and friends were dying in large numbers – I simply got tired of one loss after another, of never truly getting over one death before another friend started dying. I guess I was trying to protect myself from further loss and pain and, whilst I still accessed HIV services and was part of

peer support groups, I didn’t encourage other positive people as friends outside of those settings. This was until World AIDs Day, 2010 when Olivia bounced into my life like tigger with sparkly eyes and a spring in her tail! She was, and is, totally irresistible! Larger than life and full of fun – why wouldn’t I welcome her! At first I was cautious, and jangled with all the ‘what ifs’ that can trip us up and send us scuttling back beneath the duvet to hibernate. The biggest being ‘what if’ I let myself get close to her and she gets sick and dies! I know, I know it sounds silly but there it is, my biggest fear laid bare. The truth was, it was already too late – I loved her, she probably had me at the first hello and I cannot imagine my life without her now. As my friend she brings love, laughter and acceptance in abundance. As my peer she brings a unique understanding that only other positive people can bring us – they walk the same road, just in different shoes. And walk together we do! She has been my companion as I have journeyed into the world of treatments and all the ups and downs of side effects. She has encouraged me through difficult moments, taken me out to play on cloudy days and picnicked on sunny days. But, perhaps more poignantly, she was with me at the clinic recently the day I got the news that my viral load is ‘UNDECTABLE.’ In true girlfriend style she took me out to celebrate, and let me tell you we didn’t do that by halves either! One bottle of wine and two bottles of champagne later we sashayed home swinging our carrier bags of medication between us, laughing and loving life… And ‘what if’ I hadn’t opened my heart to her friendship – I guess I would have been walking home alone to a cheese sandwich and a cup of tea! And so I say to you: “Long live positive women!”

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Ladies and gentleman, this is the final curtain call for your columnist Catie Jacobs!

Positively Policy A round up of what’s been happening in the policy field over the last few months.

Changes to Health and Social Care If you’ve been following the news you’ll know that there are soon to be major changes taking place concerning how health and social care are being commissioned and delivered. Over the next few issues we’ll keep you up-to-date with any changes and how they might affect you as they become known.

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Local authorities will continue to look after social care, but will also now be responsible for public health (which includes sexual health). There will also be new groups established to represent the view of local people and patients. The groups will be called Local Healthwatch and will launch in April 2013. They will have an advisory role with Local authorities as to what their priorities should be and what should be commissioned. These could provide a voice to keep sexual health on the agenda and ensure social care services take account of the needs of specific populations including people living with HIV. We’ll keep you posted but if you want to find out more check out the Department of Health website: http://healthandcare.dh.gov.uk/.

Fertility Guidelines NICE (The National Institute for Clinical Excellence) are responsible for developing health guidelines and best practice in the UK. Their Fertility Guidelines are being revised and were recently put out for consultation. The guidelines cover all aspects of fertility including HIV and had in the past referred only to sperm washing. However, they now also recommend natural conception in situations when the man is compliant with his medications, has an undetectable viral load, no other infections, and restricts unprotected sex to when his partner is ovulating. Positively UK responded to the guidelines. While we welcomed the inclusion of natural conception, we did raise concerns that it only addressed the scenario in which the man is HIV positive. We asked that the guidelines include recommendations for instances when the woman is positive or when both partners are positive. We also asked that in both these cases the same principle follows – If the positive partner is adhering to medications and has an undetectable viral load etc couples may opt for timed intercourse. In our response we also asked that a statement be included promoting the rights of people and couples living with HIV to any support and care

PositivelyUK Summer 2012

available that will aid them in overcoming infertility problems. In the past many people with HIV have been excluded from IVF and other fertility procedures because their HIV status. We believe it is important these national guidelines state the entitlement to the same high quality level of support and care, appropriate to their condition, as in the rest of the population.

Policy Network Want to get involved and not sure where to start? There are a number of forums and groups you can join. For those of you who haven’t yet joined the HIV Activists Network, it’s a great way to get involved via email in NAT’s campaigning work and bring about change in areas such as health, benefits and discrimination. The campaign actions won’t take up much of your time but can make a real difference to the lives of people living with HIV. You can find out more at http://www. lifewithhiv.org.uk/hiv-activists-network. To join or if you have any queries simply email Susan Cole at susan.cole@nat.org.uk

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Recently at Pos UK Marc Thomson We would like to welcome Marc Thomson, who has recently started at Positively UK as our Peer Case Worker. His role will include recruiting, training and managing a group of peer mentors as well as further developing the peer mentoring programme. Marc has been involved in the sector for 20 years and has previously worked for Living Well and Terrence Higgins Trust.

‘I am excited, from a professional and personal perspective, to build on my past experience and do some direct work. I believe that peer work is the future.’ Silvia Petretti

Marc Thomso

Silvia joined the organisation some years ago firstly as a volunteer and then as a case worker. She has been a champion of ensuring the voices of people living with HIV are heard. She is currently the Community Representative at BHIVA and last year presented the UK at the UN AIDS High Level Meeting in New York. As Deputy Chief Executive, Silvia will drive forward Positively UK’s policy and engagement programmes.

Positively UK has embarked upon an exciting period of development. In the last year we’ve developed new services for women in pregnancy, young people and gay men. We’re now looking to build upon these projects, develop our successful volunteer peer mentor programme and diversify our funding to ensure we can continue meeting the needs of people living with HIV for years to come. We are seeking dynamic individuals with the experience or ability to operate at Board level to join our Board of Trustees. As a trustee you will ensure there are robust governance arrangements in place for all our services and operations, and lead on the strategic direction of the organisation.

Silvia Petret

We are particularly keen to hear from people who meet one or more of the following criteria:

* * *

People living with HIV Healthcare staff working in the field of HIV People with experience in managing finances and accounting; human resources; fundraising; marketing and PR; and legal knowledge

For an informal chat and application please contact Allan Anderson on 020 7713 0444 or email aanderson@positivelyuk.org

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Positively UK Trustees

What’s Happening Around the UK? BIRMINGHAM Universal Women’s Group and is on the last Friday of every month. Contact Alex on 0121 622 6471 or email alexbergman@abplus. org.uk Terrence Higgins Trust Birmingham provides support or advocacy services for women living with HIV. Contact Michaela on 0121 694 6440

Bournemouth Body Positive Dorset Women’s support group on the first Tuesday of the month. Contact 01202 297386

BRIGHTON The Sussex Beacon run a Women’s Group and provide oneto-one support in Brighton. The group is run once a month from 10:30am-3:30pm. Contact Paula Evenden on 01273 645698 or e-mail paula.evenden@sussexbeacon. org.uk

BRISTOL

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Terrence Higgins Trust multicultural women’s group. Monthly on Saturdays.

Contact Bonnie on 0117 955 1000 Saturdays 11.30am-4pm

CARDIFF Terrence Higgins Trust. African women last Thursday of every month 1-4pm, women and carers group – 2nd Monday 11am-1pm, parents group. Contact on 02920 666 465

CORNWALL

I Positive run support services for all women living with HIV in Derbyshire and their families. Contact Michaela on 01246 559 431 or email micaela.swallow@ nhs.net

EAST ANGLIA PLP – Support group for HIV positive women. Contact 01502 537 985 or email info@plpea.org.uk Women Living Positively runs a monthly support group for infected and affected women. Contact Joe on 01473 692 616 for more details

East Sussex ‘Positively Social’ a group for both men and women, meets monthly; in Hastings on the first Monday and Eastbourne on the third Thursday of month.

Waverley Care – Offers a number of services providing practical and emotional support to people living with HIV in Scotland and to their partners and families. Contact 0131 661 0982 or visit www.waverleycare.org Positive Help – Practical support for people affected by HIV and AIDS.

Contact on 01872 262221

THT Scotland runs a African women’s group every Thursday 6-8pm.

Contact 01332 204 020

Hertfordshire

Blue Sky Trust runs a group every Tuesday 11am-2pm.

Herts Aid holds a HIV positive women’s support lunch monthly – the 3rd Tuesday of each month from 1pm-3pm. Contact 01920 484784 The Crescent run two support groups for specifically for women: a ladies lunch which takes place every other month and a mother’s support group known as the Fountain Group in Watford, which takes place every month. Contact 01727 842 532 www.thecrescent.org.uk

Sahir House hold a monthly mentor-led women’s peer support group.

Contact Maro on 0131 558 1425 or email fphealth@waverley care.org

GLASGOW

Contact them on 0141 332 3838 Body Positive Strathclyde women’s support group. Weekly, Friday 5-8pm. Contact 0141 332 5010

PositivelyUK Summer 2012

Contact 0261 882 2200

Newcastle

EDINBURGH ISIS – a group for women living with or affected by HIV – continues to meet every Tuesday from 1.00-3.30pm at Waverley Care, 1-3 Mansfield Place, Edinburgh EH3 6NB

Body Positive North West runs an African Women’s group on Thursday mornings.

Contact 01252 345 019 or email info@positiveaction.org.uk

LIVERPOOL

Contact on 0131 558 1122

Derbyshire Positive Support runs a women’s group on the first Wednesday of the month.

Monthly Support group for women infected or affected by HIV/AIDS

Contact 01323 649 927

Kernow Positive Support (KPS) runs a monthly women’s support group, dates and times now vary.

DerbySHIRE

HAMPSHIRE

Contact Serena on 0151 237 3989 or email info@sahir.uk.com

LUTON/ BEDFORDSHIRE Bbpositive HIV positive women’s support group. Wednesdays 4-6pm. Food and refreshments available. Visit www.bbpositive.com Psychological Support now available at CAFPH. For people living with HIV Contact CAFPH on 01582 726 063 or email: info@cafph.org

MANCHESTER George House Trust HIV positive women’s support group and African Service. Alternate Tuesdays. Contact Lynda on 0161 274 4499 Body Positive North West women’s support group. Weekly, Friday mornings. Contact 0161 8820 2202

Contact 0191 281 5200

Sheffield SHIELD run a evening session on Thursdays 12-3pm except last of month. Contact 0114 278 7916

SOUTHAMPTON Positive Action run a monthly support group for women affected by HIV. Contact 0238 022 5511 or email info@positiveaction.org.uk

STOKE ON TRENT Esprit runs a women›s group every two months. Contact Rosie 01782 201 251

SURREY Monthly Support group for women infected or affected by HIV/AIDS Contact 01252 345019 or email info@positiveaction.org.uk

SWANSEA AIDS Trust Cymru runs a women’s support group on the last Wednesday of month. Contact 01792 461 848.

west SUSSEX HIV Peer and Advocacy Service (SHIVPASS) offers: A confidential monthly support group for Women Living with HIV. One to one support for families affected with HIV. Contact: BME Community Services, Worthing, West Sussex on 01903 211033 or confidential helpline 074234 32924 or email info@bme-cs.org.uk or visit www.bme-cs.org.uk

What’s Happening Around the UK? WOLVERHAMPTON

Woking

Terrence Higgins Trust – Support for African women who’ve been diagnosed HIV positive, monthly on Thursday afternoon.

THT South runs a Women of Courage group, once a month on the last Saturday of the month from 12.30.

Contact Jane on 01902 711 818

Contact 01483 263 163

man@positivelyuk.org 020 7713 0444 or email los ll Ca . ed lud inc be can t e tha know of a group or servic Please get in touch if you

London - Positively UK’s Services Cara – Ladbroke Grove

Monthly support groups:

Weekly groups for HIV positive women. Every Thursday 11am-3pm

Call 020 7243 6147 for details

Positively UK – Islington

HIV positive women’s group every first Wednesday of the month, 4-8pm GayTalk, group for gay men, last Saturday of every month 12 – 3 pm

* African Group every third Saturday of the month 12-3pm (men welcome)

Str8 Talk – Heterosexual group for HIV positive people. Every third Wednesday, 6-9pm

Call 020 7713 0444 for details or créche booking.

The copy deadline for the next issue is 1 October 2012 Managing Editor Nina Scott Design Intertype.co.uk Layout Gail Tandy Print Stephens & George Proof Readers Allan Anderson, Maureen Matthews, Silvia Petretti, Ben Osborn

Lighthouse – Ladbroke Grove Str8 Talk – Heterosexual group for HIV positive people. Every first Wednesday, 6-9pm

One-to-one sessions: At Positively UK, Islington and Monks Park, Brent * General support

* *

Homerton call 020 8510 7996

Newly diagnosed support

Royal Free Hospital call 020 7794 0500

Evening and daytime sessions

St Mary’s call 020 7713 0444

Pos UK – call 020 7713 0444 Monday to Friday 10am to 4pm, Thursday 10am to 8pm

Ealing Hospital – call 020 8967 5554

Call 020 7713 0444 for details

Royal London call 020 7713 0444

Monks Park – Brent

Northwick Park call 020 7713 0444

Mixed peer group for HIV positive people. Every last Thursday of the month 11am-3.30pm Call 020 7713 0444 for details

Editorial Team

Send letters to the editor and unsolicited manuscripts to

Alexandra, Angelina Namiba, Bex, Cate Jacobs, Janine, Julie, Maggie, Mariella, Maureen Matthews, Mem, Mona, Silvia Petretti, Sophie Strachan, Stella, Tina.

Positively UK Freepost RLYJ-ULRT-CEEC 345 City Road London EC1V 1LR

Subscriptions info@positivelyuk.org

Outreach one-to-one sessions:

Or email ninas@positivelyuk.org Please submit articles of no longer than 1,200 words, indicate what name you would like to use and supply photos (which can be returned to you). While we respect the individual’s point of view, we will not print anything we deem to be discriminatory.

The Positively UK magazine is a public document. We cannot guarantee confidentiality for the stories on these pages or for any assumptions that may be made. Please be aware of this when considering making a contribution. No material in this publication may be used without permission from Positively UK. Views expressed by individual contributors are not necessarily those of the editor or Positively UK. Positively UK is published by Positively UK, registered charity number 1007685.

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Support Groups:

I WISH I’D

TOLD HIM

THE WHOLE

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STORY...

Have you discussed everything that you wanted to? If something is bothering you about your anti-HIV medication, your doctor or nurse can help you deal with it. Find out more at www.yourstoryyourscript.co.uk

Don’t leave today with a weight on your mind YOUR YOUR STORY, STORY,YOUR YOUR SCRIPT SCRIPT April 2012, VIUK12NP067

PositivelyUK Summer 2012