A COMMUNITY ENGAGEMENT PROJECT
“SILENT VOICES”
A REPORT OF THE NEEDS AND ISSUES OF HIV+ WOMEN WHO HAVE OR
ARE STILL USING DRUGS AND ALCOHOL CARRIED OUT BY THE INTERNATIONAL COMMUNITY OF WOMEN LIVING WITH HIV /AIDS (ICW) IN
LONDON.
The research was carried out by: Carmen Tarrades, Elizabeth McKay, Moono,
Leigh Neal and Beatrice.
APRIL 2006
FUNDED BY THE DEPARTMENT OF HEALTH, MANAGED AND SUPPORTED
BY THE ETHNICITY AND HEALTH UNIT – UNIVERSITY OF CENTRAL
LANCASHIRE
PERSONAL PROFILES:
The following people were involved in the development and delivery of this project.
Carmen Tarrades
Carmen has been a member of ICW for 7 years and was diagnosed as being HIV positive in 1989. She has been using drugs since the age of 15 and began working with ICW in 2001 as “Voces Positivas” project co-ordinator. When that project was completed, Carmen then became Membership Development Officer as well as continuing to think about the needs of HIV positive drug users and how ICW could support them. When the opportunity for funding arose, she grabbed it with both hands and presented the proposal for SILENT VOICES to the University of
Central Lancashire. Carmen wants to develop this project further and take it nationally and internationally.
Liz McKay:
Liz has been a member of ICW for 6 years and a trustee member for 2 of those years. Liz has been HIV+ for 20 years and was a drug user from the age of 18 to 39. She has worked both with positive women and drug users over the years and believes that drug users should be heard and listened to at all levels. She particularly wanted to be a part of this research as she feels this is a beginning for other service users and providers to understand the difficulties these women face on a day-to-day basis. Liz has particularly enjoyed learning about the research side of this project. She is also a trained hypnotherapist.
Moono:
Moono has just recently joined as a member of ICW. She is currently reading Law. She has thoroughly enjoyed her work on the Silent Voices project – not only because of the opportunity it
has provided for the women affected to tell their stories but also because it has brought the subject back to the fore.
Leigh Neal:
Leigh has been involved with ICW for over 10 years, originally as a Trustee and a volunteer and lately as a member whilst concentrating on her embroidery textile studies. Leigh was diagnosed HIV+ whilst serving a prison sentence for a drug-related crime 19 years ago. Leigh has got back involved with ICW as she feels that Silent Voices is an important and long overdue piece of
research, as even within the HIV community there is invisibility and marginalisation of drug users.
Beatrice:
The researchers and all at ICW would like to express our sincerest appreciation to Beatrice, who
sadly passed away May of this year. We would like to dedicate this report to her as she gave her fullest commitment and encouragement to make this report happen. We will always remember
the passion, insight and inspiration that she brought to this important project.
ACKNOWLEDGEMENTS
ICW would like to thank the University of Central Lancashire for giving them the opportunity to be involved in such a significant project for HIV+ drug using women. ICW believes that HIV + women drug users often face triple discrimination which leads to prejudice, invisibility and marginalisation and hopes that this research will be a step forward in addressing these and many other issues HIV+ drug using women face.
ICW on behalf of the Silent Voices Drugs Research Team would like to thank all those who
participated and contributed toward this research project.
A special thank you to all the women involved with this research, either through their participation of the focus groups or their interviews. Without these women‟s honesty and openness this
research would not have been possible.
ICW would like to thank the organisations that have supported Silent Voices:
; Positive Futures – U.K. Coalition
; Working Women‟s Project in Streatham particularly Vanessa, Doreen and Maggie
And the Silent Voices Steering Committee:
; Carmen Tarrades: Project Coordinator and ICW staff member.
; Mark McPherson: I Base
; Shona Flannigan: Membership and Development Coordinator – London Drug and
Alcohol Network.
; Fiona Hale / Fiona Pettitt: ICW International Network Manager
; Chezerine Dhaliwal: - DAT Islington – Representative from the Community Safety
Partnership Unit.
; Jax Shapter: Mainliners
; Alison Johnson: Hackney Drug Action Team
; Faith Mango: Support Worker from the University of Central Lancashire
The people involved in the steering committee were chosen for their knowledge of the issues affecting people living with HIV and their knowledge of issues affecting drug users. They all work in the relevant fields and because of their extensive experience, they were able to support and advise on the proceedings of the research.
A special thank you to Corinne Miele without whose fundraising proposal Silent Voices would not
exist and also for her ability and enthusiasm for creating all the pie charts. Many heartfelt thanks to Carol Connolly for all her administration support. The researchers would like to thank Emma Bell for her support in the writing of the report. And last but not least, Faith Mango (University Support Worker) for her guidance and belief in ICW and our work.
Contents
Executive summary ....................................................................................................... 5
The Centre For Ethnicity and Health’s Model of Community Engagement . 13
Introduction ................................................................................................................... 19
Background to HIV epidemic in the UK ................................................................. 19
Methodology .................................................................................................................. 22
FINDINGS ....................................................................................................................... 24
Dealing with diagnosis ............................................................................................... 32
Relationships and disclosure ................................................................................... 33
Partners (casual and long-term) .................................................................................... 33 Disclosure to family and friends ................................................................................... 33 Disclosure to children ................................................................................................... 33 Disclosure within the wider community ....................................................................... 34
Economic issues .......................................................................................................... 35
Work and qualifications ................................................................................................ 35
Decisions about working............................................................................................... 35 Disclosure at work ........................................................................................................ 36 Physical well-being ...................................................................................................... 37
General Health .............................................................................................................. 37
Complimentary Therapies ............................................................................................. 38 Sex and sexuality .......................................................................................................... 38
Reproductive lives and choices ..................................................................................... 39
Choices to have children ........................................................................................... 39
Pregnancy and labour ................................................................................................ 39
Deciding not to have children ................................................................................... 41 Drug and alcohol use .................................................................................................. 42
Services .......................................................................................................................... 43
Drug and alcohol services ............................................................................................. 43 HIV services.................................................................................................................. 45
Discrimination............................................................................................................... 45
Services: the way forward ............................................................................................. 46 Recommendations ....................................................................................................... 47
Appendix 1: ICW’s staff’s understanding of Harm Reduction ......................... 50
Appendix 2 ..................................................................................................................... 50
Appendix 3 - Flyer ........................................................................................................ 57
Appendix 3 – Notes from Focus Group 1 .............................................................. 58
Appendix 4 – Notes from Focus Group 2 .............................................................. 65
Appendix 5: Answers to questionnaire .................................................................. 70
Appendix 6: Answers to questionnaire .................................................................. 86
Appendix 7: Answers to questionnaire .................................................................. 99
Abbreviations and Glossary of Terms ................................................................. 113
Useful contacts ........................................................................................................... 117
Executive summary
Introduction - Silent Voices is an ICW project, funded by the University of Lancaster, developed to research services available for HIV+ drug/alcohol using women living in London, UK, their experiences of such services as well as barriers to access and to find out what services the women felt they needed. The project also aimed to create links between positive women drug users, with the help of local partner organisations, to collate information on current policies and practice and to develop advocacy tools around gender, sexual reproductive health rights, access to care, treatment and support, harm reduction and possibly prevention. In line with the participatory approach focus groups and individual interviews were conducted by HIV positive former or current women drug users.
Prevalence - During 2005, a reported 112 people were diagnosed with HIV probably acquired through injecting drug use. By the end of December 2005, reports showed that 4,392 people had acquired HIV by this route (Avert website: http://www.avert.org/uksummary.htm).
Background of participants - The 20 participants in the research, all of whom were HIV positive women, were from a range of ethnic and religious backgrounds. They also varied considerably in age and number of years since their HIV diagnosis. Out of the 20 participants involved in this research 5 have been diagnosed since the year 2000 with 2 women having been diagnosed as far back as 1987. Nine of the 20 women have been either arrested or cautioned, 5 women have spent time in prison. 16 of the women had received their diagnosis in either clinics or hospitals and four were diagnosed in prison.
Diagnosis - An HIV positive diagnosis is life-changing often precipitating fear, shock, a sense of helplessness, forms of denial and occasionally self-blame. However, the impact and nature of this change can depend on the way in which a diagnosis is given and the level of support offered to women once they are diagnosed. Of all the women who were asked about the manner in which
they were given their diagnosis, everyone has something bad to say, no matter which country they were living at the time. What is even more shocking is that nothing seems to have changed in 20 years.
Responses to how their diagnosis affected the women‟s lives varied from some who increased their drug use or started taking drugs to others drastically changing their lifestyle and starting a process of reducing their drug intake. The majority of women who have been living with HIV for many years expressed the psychological impact of originally believing that their lives would be cut short to now having to readjust their way of thinking about life and the future. A few women became involved in activism either in the HIV or drug field, such activism generally increasing feelings of self-worth.
Partners - Of the 14 women who gave in-depth interviews, 7 of these women are either married or in long-term relationships. Only one partner is HIV positive, the others being negative.
The testimonies from the participants show concerns over disclosing their HIV status and drug use, with the expectation that existing partners might leave them or that it would be difficult to find new partners. In fact partners generally (but not always) showed a fairly good level of support from ex and existing partners and varying degrees of support from new partners.
There were a diverse selection of answers to this question, yet it is evident that when thinking about a long-term relationship the women felt it was important to disclose as early as possible. However, a large proportion of women stated that after many years of diagnosis they tended not to disclose as readily as before. On the other hand women felt strongly that if it was going to be a one-night-stand it was important to practise safer sex. Some women in the early stages of diagnosis felt disclosure was far too difficult and made a decision to not have sex at all.
Family and friends - there were diverse examples of how, when and why women disclosed to their family and friends and the reactions they met. Reactions varied from shock and discrimination to full and loving support.
Disclosure to children similarly is fraught with concern related to possible reactions and the impact on the lives of their children. Acceptance by children of their mother‟s diagnosis was extremely important. However, one woman felt that telling her children would serve her needs more than those of the children.
Wider community/society - It was generally found that even the women who work within the HIV community and were open about their status did not disclose to the „wider community‟. A few
women stated that they enjoyed being in environments where they could be anonymous and feel a part of normal living.
Silent Voices undertook this project because the researchers had experienced discrimination not only within society but more alarmingly actually by their own peers. Anecdotal evidence has been gathered by ICW of discrimination by male drug users who are HIV positive towards HIV positive female drug users wishing to become pregnant. Even during international events whose main
focus is HIV rarely are the voices of drug users heard or their concerns even mentioned. This discrimination is particularly alarming given the close link with failed strategies to address HIV transmission and drug use and that many of the new infections in a number of countries, especially Eastern Europe, are due to injecting drug use.
At a local level the majority of women participating in this research stated that even though they felt able to discuss issues around their HIV status they felt that being honest about their drug use and lifestyles amongst their peers was very hard to do. Most had experienced at some point in their lives varying degrees of ostracism on disclosure; even marginalised and judged by other HIV positive women.
Professional lives - All but 2 of the women involved in the research have previously or still are working in various professions. Positions held have been as varied as teaching Spanish, painting and decorating, nursery nurse, to project workers, management and key development roles within both national and international HIV organisations and editing a harm reduction publication. A few of the women have returned to full or part-time study and a few do voluntary work. Various levels of qualifications are held by the women including BA‟s MA‟s and one PHD. „Silent Voices‟
feel strongly that this part of our research challenges the stereotypical picture quite often painted by society around drug users.
Whilst some women considered themselves disabled they still felt that they could work part-time but the main anxieties around work were disclosure to employers and the fear of losing their benefits and the worry that their health would later declined. Maintaining confidentiality at work is not easy given the need to take time off for appointments, treatment and illness. Apart from the few women who felt able to disclose their status as they were working within the HIV community, most women who are or have been in full-time employment did not feel able to disclose. In fact some of the women said they felt that they had been discriminated against at work after disclosure. Other concerns around maintaining confidentiality were related to pension schemes and health questionnaires.
General health - Three quarters of the participants have a dual diagnosis of HIV and Hepatitis C (HCV). As it stands at the moment there is no cure for either HCV or HIV and therefore is and will be a huge issue for the women and the National Health Service.
Silent Voices believes that more research needs to be carried out around living with HIV in the long term. As more and more women in this country successfully live with HIV they are now facing other health issues that they believed they would not live long enough to experience, for example, the menopause and various types of cancer.
Of the 20 participants, the majority of which have been diagnosed for longer than 10 years half were not on combination therapies. Other medications taken by the women for other various conditions include: anti-depressants, sleeping pills, tranquilisers, dihydrocodeine, antipsycotics, acyclovir, thyroxin and asthma ventilators.
All the participants have used and benefited from complimentary therapies. Although the majority of women have used them more in the past, many stated that they would definitely use them more if they were easily accessible today.
Sex and sexuality - The women‟s feelings around sex and sexuality varied greatly. Some
women were still too scared around issues of disclosure and the fear of infecting partners to even think about a sexual relationship. Whilst others, especially women who have been living long term with HIV felt that these days they felt confident enough to have a casual relationship without disclosing as long as they practiced safer sex. A lot of the women felt that sex could no longer be as spontaneous as they would like due to having to practice safer sex.
Those women who felt their libido had changed said it was connected to issues such as when they were feeling ill, body changes due to lipodystrophy, general relationship problems or due to the menopause and not necessarily directly related to HIV. One woman felt that she had no concept of anything being different for her as she was only 15 when diagnosed.
Motherhood - Out of the 20 women participating in „Silent Voices‟ 9 are mothers, 3 have had a
child since their diagnosis; 7 have 1 child each whilst 2 had 3 children. One of these children has subsequently died through an HIV related illness and another has died from addiction. Two of the children have been adopted by other families. One woman is currently pregnant.
Women who are diagnosed now can safely have children even when both partners are positive. Research has advanced incredibly in the last few years and so has the knowledge regarding how HIV is transmitted from mother to child and also regarding important steps to follow regarding minimisation of transmission. Having said that, from the experiences of the women participating in the research, not all health professionals are aware of these developments and therefore do not support the reproductive choices of HIV positive women.
Women and their partners also experienced anxiety during pregnancy and post-delivery.
For the women who decided to become pregnant there were different experiences within the health system. The HIV doctors were supportive and gave advice regarding how to become pregnant. Issues of serodiscordance and minimisation of transmission to the negative partner were also explained to couples. However, such supportive attitudes are not generally prevalent amongst the other professionals involved post partum.
The research seems to highlight that these attitudes are the result of the lack of information within health professionals in general and highlights the need for training at all levels of the NHS. And even when the consultants are supportive, they also seem to stick to the guidelines regarding mother to child transmission without listening to the concerns and desires of the women in their care and sometimes ignoring the latest data available regarding PMTCT.
Many of the women who have been living with HIV for many years felt that they had no choices. Most were actively discouraged from having children as in those days the belief was that both mother and child would die. Another woman who is currently still young enough to have a child but has been diagnosed for nearly 20 years and no longer accesses services other than her clinic had not been given any recent information around this issue. The Silent Voices team were
concerned that this was because she was still taking drugs - judgmental attitudes around injecting drug users (HIV positive and negative) having children abound both outside of and within health services.
Alcohol and drug use - The majority of the participants drink alcohol and most say that they do so socially and that their drinking has lessened over the years. This could be because they are all getting older and wiser or maybe because the majority of us are also co-infected with HCV hence the need to take care of our livers. It should be noted that the women who do not drink (with the exception of one woman who is currently pregnant) the others all belong to an abstinence-based drug and alcohol self-help group. Only 3 of the women felt that their drinking was problematic.
Three quarters of the women smoke.
Just over half the women still use illicit drugs, although again most claim to have cut down dramatically. All the women interviewed had used drugs chaotically for long periods previously, but when asked if they felt that their current drug use was problematic only a very small percentage said yes. Two of the women said that the only problem was the expense. One woman felt her drug use was not a problem but others may view it in a different light. Another woman realised that whilst she was drug dependent, this was not a problem for her.
The drugs currently still being used are hash, cocaine, ecstasy, speed, methadone, injectable diamorhine and physeptone, diazepan, heroin and crack. Half of the women use on a daily basis. As most of the women claim not to have a problem now with drugs, it appears that cocaine, as opposed to crack, is being used recreationally. Hash use appears in this category also. The women who have or are still heroin users appear to have used for long periods, whilst crack users seem to reach „rock bottoms‟ quicker. The use of crack appears do more damage more quickly.
When asked what their drug of choice was three quarters of the women said heroin whilst the remaining quarter said cocaine with the exception of one woman that felt hash was her drug of choice and the other said that heroin and crack (speedball) together was hers. Out of the 20 women 16 reported that their favoured method of use was injecting, 4 preferred smoking their drugs and 2 would rather snort theirs. The majority of women still using illicit drugs no longer inject.
When asked whether the women disclosed their drug use with any professional worker, for example, consultant, nurses, counsellors with the exception of one woman all replied yes. However, responses from these professionals were in many cases not particularly positive.
When asked if they felt, that continued drug using and drinking impaired their ability to adhere to their treatment regime the answers were quite conflicting ranging from women that were using cocaine heavily and being able to adhere totally to others who found that drinking especially affected adherence. One woman said that when she was using heavily she was aware that she might not be able to adhere if she started treatment. She was also beginning to get quite ill - yet her HIV specialist did not offer any help or even a referral to address her drug use.
Drug and alcohol services - When the women interviewed were asked what three drug and
alcohol services they considered most important in regards their drug use the responses were: Drug Dependency Units (DDUs), needle exchanges and drop-ins.
It appears that the women who have managed to abstain from alcohol and/or drugs for any period of time checked out services themselves and used them according to their own needs. The services used were DDU‟s, crisis detox centres, rehabs and NA (Narcotic Anonymous) meetings. Quite a few women stated that they used their own initiative and stopped of their own accord when they felt that their use was out of control. Most of the women have stopped using chaotically and now use recreationally although a quarter of the women abstain from both drink and drugs and regularly attend NA meetings in their local area. These meetings are free and are not a government service.
When asked if the women felt they were given (directly) enough information on the use of illicit drugs whilst taking combination therapy almost everyone reported that they had never been given any information directly. Whilst at their local clinics although there was often literature in the waiting rooms it all seemed to be aimed at gay men and clubbing. The women felt that it was assumed by their doctors that if they had stopped using chaotically they did not use drugs at all.
Five of the women who gave in-depth interviews had spent time in residential rehabilitation centres since diagnosis. Although in some cases the women were not treated badly they felt that due to ignorance and lack of experience around HIV there was in the main no direct /comprehensive support. One woman was faced with the decision imposed by the staff of having to disclose to her peers or leave the facility. Another disclosed immediately to the group and to her surprise was hugged and accepted but later the same peer group bought up issues around her serving the food at meal times. Some women felt that the facilities didn‟t appear to have any real policies or strategies around HIV.
One woman returned to the same facility many years later after being their first patient with HIV and when staff did not know how to deal with her. She found on her second visit that they were more prepared and were very professional. She was completely happy with their level of support, confidentiality and treatment both psychological and medical.
HIV services - When the women interviewed were asked what three HIV services they
considered most important in regards to their HIV the responses were: medical services that provide treatment along with treatment information and monitoring of treatment; complimentary therapies; peer support with information resources.
Although all the participants have used a variety of services in the past the majority of women now only use their clinics for their medical care. It should be noted that the women involved in the research were all able to access services locally – this is an advantage of living in the capital.
Although the participants may have shopped around until finding a service which they are comfortable with, it is worth adding that the majority have also decided their clinic is the only service where their needs are met.
There were various reasons for the women not accessing services as frequently as they may have done, for example, women returning to work and study. Many services do not have late opening hours. Unfortunately many of the complimentary therapy services are no longer in existence and those that are usually only open during the day. Due to long-term living with HIV many women are just getting on with „normal living‟. However, Silent Voices has exposed the
isolation faced by HIV positive drug using women. They felt that present day services do not support them in their specific needs and in fact many expressed feelings of being invisible and discriminated even within the HIV community. The majority felt the need for peer support, although many said that having a space to meet together need not be as frequent as weekly and did not have to be that formalised.
RECOMMENDATIONS
Pre and post diagnosis:
; Pre and post counselling are very important for those who have just been diagnosed –
they help in dealing with the shock, the fear, the sense of helplessness, the denial and
occasionally the self-blame. It might help avoid some of the issues that a positive
diagnosis might lead to, i.e. increase in drug use.
; Along with a positive diagnosis, information should also be given regarding the services
which might be able to help – not just what the clinic has to offer.
; Ensuring that alternative therapies are available for all those living with HIV (regardless of
whether they are still using or not). All the women interviewed benefited from them, and if
we consider the range of conditions indicated by the participants, it would ultimately be of
benefit to the health system.
; Develop better strategies for the management of pain for drug users – because of drug
use, the tolerance can be very high – so when in need of painkillers the dosage should
be discussed with the patient on the basis of their tolerance.
; More support regarding issues of adherence to treatment needs to be offered and in
some instances DOT (Directly Observed Treatment) might be an option.
; ARV treatment needs to be offered to all those who need it, regardless of whether they
are drug users or not.
Disclosure:
; Disclosure is a big issue with all the women who were interviewed. It would be really
useful for women living with HIV to be able to have discussions/training about disclosure,
how, when, where and what is the best way of disclosing. These can be facilitated by
other people who can share their experiences regarding what worked and what didn‟t.
; Disclosure issues have been mentioned by all participants – disclosure has affected them
in all spheres of their life. Realistic information has to be made available to the population
in general – to dispel perceptions and misconceptions. This will not only help the issue of
disclosure but will also help with the eradication of stigma and discrimination. ; The media has a big part to play – they can be instrumental in dispelling the perceptions
that most of the time they have created within the community.
Reproductive and sexual health:
; Information and treatment is needed on sex and sexual health issues.
; Support and information needs to be made available to those HIV positive women
actively seeking to have a child. Up-to- date information regarding PMTCT (Prevention
of Mother to Child Transmission) needs to be made available to them – regardless of
whether they are drug users or not.
; More information is needed by the community in general on issues of serodiscordance in
couples.
; A lot of research has been done on PMTCT. This information has to be made available to
all staff involved, both in the HIV clinic and in the hospital – and referrals made where
necessary.
; All clinical staff needs to be trained around HIV (at all levels within the NHS). Knowledge
would lead to the cessation of the discrimination experienced by many positive women
when choosing to be mothers.
Drug Services:
; All those working within the drug services need to be informed around HIV and drug use
and around the impact that HIV can have on their clients.
; Specific peer support groups between HIV+ women drug users should be encouraged as
a way of supporting each other and exchanging information and experiences. ; Service providers need to be informed regarding the pharmacokinetic effects of drug
using and ARV.