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Reducing Health & Social Inequalities in people living with, or affected by HIV A Third Sector Approach

Registered Charity No 1060062 and Company Limited By Guarantee No 3245543

Executive Summary I am honoured to write the foreword for this very important document because I think it is critical to highlight the positive and comprehensive work that is contributed by the voluntary sector and, in particular, by Body & Soul. The neurologist Donald Calne once famously said, “The essential difference between emotion and reason is that emotion leads to action while reason leads to conclusions”. Body & Soul acts, and has recognised and responded to the changing needs of people living with and affected by HIV since it was founded by Emma Colyer, with the support of the late Dame Anita Roddick, in 1996. At the heart of Body & Soul’s existence lies the importance of kindness, compassion and individual attention, qualities which define dignified care. Its approach is grounded in responsive, expert programming and uses innovative methods to address complex, challenging problems. While a commonality that Body & Soul’s service users have is that they are living with and affected by HIV, the organisation goes far beyond just addressing HIV. It looks at all the factors that might affect a person’s well being and then works with that person (or family) to develop an intervention plan that maximises individual strengths while helping move that person forward.

By the end of 2012, an estimated 100,000 people in the UK will be living with HIV. The epidemic has reached such proportions that universal testing is now recommended in 55 local authorities across the UK. In areas of highest prevalence, the HIV rates have exceeded those in many developing countries traditionally associated with the pandemic (such as Thailand). While the data around HIV as an epidemic is staggering in and of itself, what is most striking about this condition is that even in the UK, it disproportionately affects the most socially vulnerable populations, people living in poverty, the homeless, ethnic and sexual minorities, and people living in communities with low social capital. For example, one out of every 20 black African women in the UK is HIV positive. HIV magnifies these vulnerabilities, and people living with HIV are more likely to suffer from poor mental health, poverty and social isolation. Older adults living with HIV (one of the fastest growing subpopulations of people living with HIV) are experiencing more co-morbidities than their non-infected counterparts. The impact of HIV and the stigma attached to it extends to those people and communities who are closely affected by HIV. Children who live in families affected by HIV are more likely to live in poverty, experience bereavement and

take on carer responsibility at a young age. Body & Soul also saves money: if the services it provides to its 4000+ members prevent even four onward HIV transmissions, the organisation pays for itself in treatment costs alone. While this document should provide a good snapshot of the exceptional work Body & Soul does, I believe it also does an excellent job of highlighting the complex response needed to appropriately and effectively support people living with HIV, a group that becomes exponentially more expensive without comprehensive support.

Professor Aidan Halligan Director of Education. UCLH Chief of Safety, BSUH.


1 2 3-4 5 6-7 8 -9 10 11 12 13 14 15 16 17 18 19

Introduction Body & Soul’s Record and Experience Meeting the QIPP Agenda Meeting Health & Social Care Outcomes Body & Soul: Saving Money and Lives Body & Soul’s Services HIV by the Numbers HIV Prevalance by London Borough Preventing Onward Transmission: Our Approach HIV Affected Children by London Borough Social Ecological Model Lifecourse Model Rationale of Whole Family Service Model Sample Services: A week at Body & Soul Member Led Endnotes

Introduction Who we are Body & Soul is a UK charity with 16 years experience of providing high quality, comprehensive support to children, teenagers, adults and families living with and affected by HIV. Our wide range of programmes promote the dignity and wellbeing of our service users in an environment of aspiration. We refer to our service users as “members” due to the highlyactive role they take in determining and delivering service content. Services are focused on five key areas: Mental Health, Physical Health, Psychosocial Wellbeing, Practical Support and Maximising Productivity. We have a member base of over 4000 people and offer support to 250 individuals each week.

Why we have produced this document Body & Soul recognises that commissioning services that improve the wellbeing of people living with and affected by HIV is a complex process that is undergoing substantial change. Recognising the diverse backgrounds of those making HIV commissioning decisions, Body & Soul has compiled this document to contextualize HIV in the UK (especially London) and Body & Soul’s role in the HIV sector. The purpose of this document is to highlight data and theory that can inform the commissioning process, as well as providing a snapshot introduction to Body & Soul’s services. We hope you will respond proactively to prevent further health inequalities for people living with or closely affected by HIV by:

Commissioning evidence based services. Advocating for the needs of vulnerable populations. Commissioning Body & Soul.

For more information please contact Or call 0207 923 6880


Body & Soul’s Record and Experience Body & Soul has an impressive record of working with a range of funding bodies, from the statutory sector to trusts and foundations, companies and individuals. We responsibly and proactively respond to the needs of our member population and this is reflected a number of ways: 

We conduct regular member-driven needs assessments We use evidence-based and best practices to approach our programming and service strategy. We utilise a diverse volunteer base to ensure that high quality interventions are delivered in a financially efficient manner. We strategically partner with many of the UK’s most respected organisations to help us accompany these objectives.

Intelligent commissioning capitalises on the strengths of community resources. Body & Soul provides a superior product in a cost-competitive manner by utilising the incredible human capital present in our staff, member and volunteer population. The average full-time Body & Soul staff member has 4+ years

experience working in the HIV sector; 5 staff members are qualified teachers; staff post-graduate qualifications include: PhD, Masters’ (including Science and Nursing, Public Health, Reproductive and Sexual Health Research and Play Therapy). The member and volunteer population is richly endowed with diverse capabilities, including doctors and lawyers, school and dance teachers, psychologists and economists. Many individuals selflessly contribute to a cause to which they are passionately dedicated; the hours contributed by volunteers are equivalent to 10 additional full time staff members. By promoting timeliness, quality and innovation in our services, we encourage meaningful change in the lives of members. This is accomplished through clear strategic aims, objectives, and outcomes, as well as statistical monitoring and evaluation at all levels of services and programming. Externally validated tools and instruments are used to ensure that outcome evaluations reflect impact. Our aim must be to provide society’s most vulnerable and marginalised members with aspirational services. that transforms lives. Financing Body & Soul is cost-effective, logical, and good practice.


Meeting the QIPP Agenda Quality: Body & Soul is committed to providing quality, evidencebased interventions to people living with and affected by HIV. A sample of accolades that demonstrate Body & Soul’s commitment to quality include: 2011 GSK Impact Award UK Youth Hearing Unheard Voices Award: Most Creative Campaign Featured case study in the King’s Fund Report: ‘Long-Term Conditions and Mental Health- The Cost of Comorbidities’


Shortlist- Charity Times Awards 2011 Featured case study in CFG, NPC, and ACEVO’s ‘Principles into practice: How charities and social enterprises communicate impact’ READ MORE Team London Awards Finalist

Regular service-user (member) surveys demonstrate that members achieve measurable improvements in their personal wellbeing as a result of accessing Body & Soul: 89% of adult members and 93% of teenagers have improved HIV knowledge. 81% of adults and 78% of teenagers felt that they are better at taking their medication treatment since coming to Body & Soul. 84% of adult members and 77% of teenagers know more about HIV transmission and safer sex. 90% of adult members and 80% of teenagers feel they have more people they can talk to about HIV. 92% of teenagers accessing Body & Soul are in education, employment or training. 89% of adults and 81% of teenagers feel happier as a result of accessing Body & Soul’s services Almost 50% reduction in missed clinic appointments and earned high satisfaction scores amongst patients.

100% of members involved in counselling demonstrated significant clinical improvement , as measured by CORE counselling form pre and post intervention scores.

Services engage and give voice to vulnerable populations 82% of service users are BAME Body & Soul conducts regular needs assessments of our population both independently and through external partnerships, which inform programming In addition to ongoing feedback mechanisms, members participate in quarterly members’ meetings and twice yearly planning surveys to inform programming direction Young people determine programming content directly through the Teen Spirit Board of Directors

Innovation: Services address health barriers innovatively. Examples of innovative programmes delivered in 2011 include: Life in My Shoes Campaign - a dynamic, multi-media campaign which engages young people living with and affected by HIV in the creation of musical, film, and print materials which directly confront stigma related to HIV and gives a voice to this often unheard population. Parents Aloud! – a pilot offered with SHM Foundation that used SMS technology to support parents of HIV positive children. Body & Soul & St. George’s Hospital In-Clinic Peer Mentorship Pilot: A pilot that brought trained peer mentors into a transition clinic and in its first year resulted in an almost 50% reduction in missed clinic appointments while earning high satisfaction scores amongst patients. Children and Family Advisory Group: a volunteer panel of highly experienced experts in a variety of fields (including clinical psychology, family therapy, psychotherapy, and social work) that regularly reviews Body & Soul’s intervention practices on complex cases.


Productivity: Body & Soul jointly works with multiple statutory, private and third-sector groups to ensure that its services address members’ multiple needs. In 2011 alone, Body & Soul provided: Over 9000 structured support sessions 100+ individualised treatment support sessions and 24 group treatment adherence sessions in the adult and teen programmes 90+ workshops addressing and promoting mental health 400 individual counselling episodes, resulting in a 100% improvement in CORE counselling scores 650 pieces of casework, including expert legal casework (done through pro-bono partnerships) 90 practical support workshops and 230 skills development sessions

Body & Soul works in partnership and by engaging trained volunteers in order to deliver services in a cost-effective way: Body & Soul’s volunteer team contribution equates to having 10 additional full-time staff members. The pro-bono legal services Body & Soul received in 2011 alone equated to £250,000


Body & Soul prevents onward transmission of HIV by: Promoting safer sex: distributing condoms, providing regular sexual and reproductive health education to people of all ages who are HIV infected or affected, promoting gender power, targeting high risk populations, early intervention, and empowering serodiscordant couples to have sex safely.

Reducing maternal to child transmission: providing clear information about HIV and pregnancy, supporting newly diagnosed women and partners, promoting maternal medication adherence, advocating for safe infant feeding Decreasing Viral Loads: Improving HIV knowledge and understanding of ARVs, promoting medication adherence, practical support around treatment, and promoting and facilitating clinical appointment attendance. Promoting knowledge: addressing stigma and misconceptions, promoting HIV knowledge, engaging diverse audiences to improve workplace HIV response, advocating for incorporation of HIV education into SRE policies, improving educator knowledge around HIV, and improving patientprovider communication. Reducing Inequalities: coordinating and providing legal and practical advice and support, advocating for fair policies for people regardless of HIV status, supporting patient rights, providing comprehensive case management, assessing community risk profiles, supporting people in and into employment, and ensuring educational attainment.

Body & Soul reduces comorbidities and the impact of comorbidities in people of all ages. Its comprehensive Health Impact Strategy addresses multiple barriers to wellbeing (including physical health, mental health, psychosocial and practical barriers) By jointly working, it ensures members have expert interventions that prevent chronic illness

Prevention of stigma around HIV (which the WHO associates with failure to test, treat, disclose, or access support around HIV) Body & Soul’s Life in My Shoes Campaign (www.lifeinmyshoes. org) reached over 12 million people in 2011 alone through television, print, and online campaign outreach.


Meeting Health and Social Care Outcomes Health and Social Risk

Body & Soul’s Intervention Strategy Snapshot

NHS Outcomes Framework Domains Met

Public Health Outcomes Framework Domains Met

Social Care Outcomes Framework Domains Met

Low baseline HIV knowledge

Viral progression due to poor medication adherence, health promoting behaviours, or clinical attendance.

Regular knowledge assessments 1:1 and small group treatment support Comprehensive HIV education Information provision Improving patient-provider communication

1, 2, 3, 4, 5

2, 4,

1, 3, 4

Sexual risk taking

Poor sexual health outcomes, unplanned pregnancy, and onward transmission of HIV, all of which incur substantial social, health, and economic costs.

Age-appropriate sexual health workshops (some OCN accredited) HIV prevention interventions (see strategy) Serodiscordant relationship support Pregnancy support Behavioural interventions geared towards condom negotiation and use

1, 2, 4, 5

1, 2, 3, 4

1, 2, 4

Unemployment or disengagement in education

Layered impact of HIV and poverty: social exclusion, child poverty, poor educational attainment, substandard housing, and health inequality

Multidisciplinary case management 1:1 education and employment support Career skills building (IT) Job search support

1, 2, 3

1, 2

1, 2, 3, 4


Depression and anxiety, poor long-term mental health outcomes, suicide/suicidality, social disengagement,

Mental health assessments at individual and population level 1:1 support provision: counselling, peer support, family support Onward Referral Regular, accessible front-line services Mental health workshops Phone Support Volunteer Opportunities

1, 2, 3, 4, 5

1, 2, 4,

1, 2, 3, 4

Hardship support Nutritional workshops Cooking classes Physical activities (ie Yoga, Boxercise, Capoeira) Carer support & skills-building Regular, accessible front-line services Mental health workshops Phone Support Volunteer Opportunities

1, 2, 3, 4, 5

2, 4

1, 2, 4

1, 2, 5

1, 2, 4

1, 2, 3, 4

Presenting Needs

Poor nutritional status and impaired mobility


Chronic illness, isolation, premature mortality, sickness absence, hospital admissions, and early carer responsibilities (for families)

Health and social inequality, lower educational achievement

Legal support (immigration, family, practical) CAB support Case management and MDT Hardship support Housing and benefit support Employment and education support


Body & Soul: Saving Money and Lives

The Impact of HIV

The Impact of HIV

HIV is an expensive health issue for the UK. • In 2010, more people newly diagnosed in the UK with HIV were infected in the UK than were infected abroad. • If the 3640 UK-acquired HIV diagnoses made in 2010 had been prevented, between £1.0-1.3 billion lifetime treatment costs would have been saved. • The average new HIV diagnosis will cost the NHS roughly £320,000 in lifetime treatment costs. If Body & Soul’s 9000+ service episodes delivered in 2011 prevented 4 onward transmissions, the organisation pays for itself for a year

Treatment refusal and poor ARV medication adherence can lead to drug resistance and incomplete viral suppression. When a person has a higher viral load, they are more likely to transmit HIV.

Our Response

Our Response

Body & Soul is a prevention organisation. It prevents onward transmission of HIV through 5 main areas: helping to make sex safer, decreasing HIV viral loads, reducing inequality, improving knowledge around HIV and transmission, and reducing maternal to child transmission. In 2011, due to accessing Body & Soul: • • •

89% of adult members and 93% of teenagers have improved HIV knowledge. 84% of adult members and 77% of teenagers know more about HIV transmission and safer sex. 90% of adult members and 80% of teenagers feel they have more people they can talk to about HIV. Body & Soul’s Life in My Shoes Campaign, which addresses community stigma around HIV, reached over 12 million people in 2011 through television, print, and online campaign outreach.

• • •

1 in 10 people with a CD4 Count under 350 cells/mm3 is not on ARVs. The treatment cost for a person who has AIDS is 2.7 times greater than the treatment cost for a person whose HIV is well-controlled. Treating an HIV-infected individual with ARVs results in a 96% reduction in the risk of sexual transmission of HIV to an uninfected partner.

Body & Soul recognises that in order for medication to have optimal effectiveness (on an individual and public health level) a person must be able to take the medication as prescribed. In 2011, we promoted medication adherence through the following interventions: • • •

Treatment Support is integrated into the registration process, support calls, and 1:1s. The provision of 100+ individualised treatment support sessions. 24 workshops promoting treatment adherence in the Adults and Teen Spirit service.

As a result of our work: •

81% of adults and 78% of teenagers felt that they are better at taking their medication/ treatment since coming to Body & Soul.


The Impact of HIV People living with HIV have poorer mental health outcomes. A meta-analysis of mental health and HIV demonstrated the following needs: • Approximately 20% of HIV+ people deliberately harmed themselves • 28.5% reported suicide ideation during the past week. • Additional studies have shown that HIV+ women are generally more likely to suffer from mental health complications (including depression) than men, and that heterosexual HIV+ men are more likely to suffer from mental health side effects than HIV+ MSM.

Our Response

Body & Soul addresses the multiple causes of poor mental health in its HIV+ and HIV-affected population through complex, comprehensive interventions. In 2011, we promoted positive mental health through: • Regular individual and population level mental health screening • Over 90 workshops specifically promoting good mental health in the adult and teen services. • 400 individual counselling episodes. Our impact: • 89% of adults and 81% of teenagers feel happier as a result of accessing Body & Soul’s services • 100% of members involved in counselling demonstrated significant clinical improvement, as measured by CORE counselling pre and post intervention scores.

The Impact of HIV People living with HIV have more acute practical needs. • People living with HIV are more likely to be economically and socially disadvantaged. • Amongst all people living with HIV in the UK, Black Africans are more likely than any other group to live in abject poverty. • Cuts to vital social services and programmes disproportionately affect society’s most impoverished. • An additional burden to families affected by HIV is carer responsibilities; more than 1 in 3 adolescents living with or affected by HIV are regular carers, of which 40 % care for family members more than 3 hours daily.

Our Response The acute practical needs of our target population result from a variety of factors (See Social Ecological Model for map of main factors, page7). In 2011, we addressed the diverse practical needs of our members through: Over 650 pieces of casework, including expert legal casework (done through pro-bono partnerships with Hogan Lovells, Wilsons Solicitors, and ITV Legal) We provided 90 Practical Support Sessions and 230 skills development sessions for adults and teenagers and delivered in total over 9000 structured support sessions As a result of our support: 92% of teenagers accessing Body & Soul are in education, employment or training and 84% of adults feel more confident.


Member Registration & Needs/ Risk Assessment Nutrition Programme Peer Support Peer Mentor Support Online Support Phone Support In-Clinic Peer Support 1:1 Support 1:1 Counselling w/ Licenced Professional 1:1 Treatment Support Transmission Prevention Serodiscordant Couples Signposting Client Advocacy Case Management Niche Group Support Group Physical Health Support Group Mental Health Support Health Promotion Workshops Family Support Individual Advice- Practical Individual Advice- Legal Educational Support Employment Support Employment Mentorship OCN-Accredited Workshops Complementary Alternative Therapies Play Therapy Policy Advocacy Educational Outreach

Expert / Licensed Volunteers or Interns

In Partnership

Volunteers or Interns

Sessional Staff



(all ages, diverse audience)


(50 years +)

Older Adult

(20 years +)


(20-29 years)

Young Adult

(13-19 and aware)

Teen Spirit

(10-12 y/o and aware)

Base Aware

(10-12 y/o)


(0-9 y/o)

Service Provided

Children’s Service

Body & Soul: Table of Services Delivered

Who Delivers Service

Service Area


Ethnicity Gender

Female 71%

Black Other 0.5% Other 0.5%

Age Breakdown AGE


Latin American 1% White Other 1%


Mixed Heritage 2%


Black British 2% Asian 2%



Missing /Non respondant 3% White EU 7%


Male 29%








White British 9% Black African 68%

Additional Activities

• LIMS Campaign • Clinical Link-up • Volunteer training • Client MDT advocacy • Conferences • Phone Support • Consultation • Knowledge Sharing • Partnership building • Casework • Registrations • Outreach • Training • Room Hire/ Building Hire • Fundraising • Statutory Link-up • Website • Policy and Advocacy • Communications and Outreach • External Phone calls-crisis phone support • Programme Development


1 in 20 Men who have sex with Men is HIV+


people are living with HIV in the UK but are unaware of their status

The number of people living with HIV in the UK has tripled in the last decade

1 in every


babies born in London are born to HIV+ mothers


29 out of London’s 33 Boroughs have an HIV prevalence above the Universal Testing Threshold of 1 in 500 (0.2%)

1 20 in

Black Africans in the UK is HIV+

It is cost-effective and recommended (by WHO, UNAIDS, and HPA) to test everybody for HIV when prevalence is greater than 1 in 500

HIV by the Numbers 2o11 Numbers:


Diagnosed HIV Prevalence in London by Borough- 2011


Diagnosed HIV Prevalence per 100, 2010 Data (* 2009 Data)

Lambeth 1.388 Southwark 1.125 Islington 0.904 Kensington & Chelsea 0.861 Newham 0.86 Hackney 0.85 Hammersmith & Fulham 0.812 Lewisham 0.751 Camden 0.744 Westminster 0.729 Haringey 0.718 Greenwich 0.601 Tower Hamlets 0.596 City of London 0.56 Barking & Dagenham 0.53 Waltham Forest 0.513 Wandsworth 0.49 Croydon 0.475 Brent 0.47 Enfield 0.415 Merton 0.36 Hounslow 0.349 Ealing 0.31 Barnet 0.277 Redbridge 0.268 Hillingdon 0.236 Sutton 0.213 Bromley 0.21 Bexley 0.205 Richmond upon Thames* 0.184 Harrow* 0.182 Kingston upon Thames* 0.159 Havering* 0.135


HIV Prevalence 1 in 500 HIV+ Between 1 in 500 and 1 in 200 HIV+ Between 1 in 200 and 1 in 140 HIV+ Between 1 in 140 and 1 in 100 HIV+ More than 1 in every 100 people HIV+

Change in HIV Prevalence between 2009 and 2010 Up Down Same N/A


Preventing Onward Transmission: Our Approach

Reducing Inequalities

Knowledge Promotion

Reducing Maternal to Child Transmission

Supporting parent rights Promoting community knowledge around HIV Addressing community stigma and misconceptions

Decreasing Viral Loads

Improving education around HIV Assessing community risk profiles Collaborating to deliver regular education interventions Advocating for change to SRE educational policies Engaging employees to improve workplace HIV response.

Assessing community risk profiles Equipping for and supporting people in employment.

Helping make sex safer

Group & individual treatment education Promoting medication adherence Practical support around treatment Promoting & Facilitating clinical appointments

Advocating for fair policies for people regardless of HIV status.

Promoting maternal health & medication adherence Supporting whole family

Coordinating legal, practical advice and support. Improving knowledge of HIV concepts such as viral load

Promoting gender equality

Reducing substance misuse Distributing condoms Promoting gender power

Providing comprehensive case management.

Equipping and supporting people in process of disclosure

Ensuring educational attainment.

Early Intervention. Targeting high risk populations.

Promoting HIV testing during pregnancy Supporting newly diagnosed women and partners Education and advocacy for safe infant feeding. Provision of fair, unbiased information about HIV. Providing specialised reproduction education around HIV


HIV in Families: The Approximate Number of HIV-Affected Children Per Borough - 2011 What does it mean to be an “HIV - Affected Child?” An HIV-Affected child is a person under the age of 19 who has at least one close family member (such as a sibling, parent or other primary carer) who is HIV+. HIV - affected children are more likely to have poor health and social outcomes compared to non-affected counterparts. According to the UN, children who are affected by HIV are especially vulnerable to: • • • • •

Early Bereavement Early Carer Responsibilities Poor Educational Attainment Poverty Exploitation

Additionally, international studies have found that children who are affected by HIV are more likely themselves to contract HIV, representing a potential risk group.

Why is it important to provide services to HIV -Affected Children? • • • • • •

Interrupts the cycle of poverty Mitigates the impact of familial HIV Establishes health-promoting patterns of behaviour Reduces long-term social costs Improves social capital and coping resources within families Prevents higher- level involvement (such as social service involvement) through early intervention


Mean Estimate*

Number of Schools in LA

Average number of HIVAffected under 18s per school

Barking and Dagenham 497 101 4.9 Barnet 390 327 1.2 Bexley 190 153 1.2 Brent 548 203 2.7 Bromley 254 288 0.9 Camden 534 204 2.6 City of London 21 15 1.4 Croydon 696 325 2.1 Ealing 407 224 1.8 Enfield 541 213 2.5 Greenwich 616 174 3.5 Hackney 818 213 3.8 Hammersmith and Fulham 490 171 2.9 Haringey 672 175 3.8 Harrow** 165 186 0.9 Havering** 119 242 0.5 Hillingdon 264 194 1.4 Hounslow 346 177 2 Islington 592 168 3.5 Kensington and Chelsea 459 142 3.2 Kingston upon Thames** 97 128 0.8 Lambeth 1472 213 6.9 Lewisham 850 203 4.2 Merton 290 145 2 Newham 1104 195 5.7 Redbridge 310 189 1.6 Richmond upon Thames** 134 201 0.7 Southwark 1203 258 4.7 Sutton 168 153 1.1 Tower Hamlets 556 195 2.9 Waltham Forest 552 173 3.2 Wandsworth 488 251 1.9 Westminster 491 188 2.6 *For information on data calculation method, please see corresponding Appendix entitled “Explanation of Data Calculation Methods.” ** uses 2009 data, remainder use 2010 data


The Impact of HIV on Families 1 in every 3 people living with HIV in the UK faces discrimination and hostility relating to their HIV status. Examples of HIV-related hostility that Body & Soul members have faced include:


Denial of school entrance on the basis of HIV status Victimisation

children are affected by HIV in London.

Religious isolation (including ostracism from church, being denied a religious funeral due to deceased’s HIV status) Medical mistreatment, negligence, and apathy Use of HIV status to deny rights to child/family life Unfair dismissal from employment (while many of these actions are illegal, the members often do not take legal action out of fear that their HIV status will be exposed)

Teenagers living with HIV present a myriad of social and environmental risk factors beyond those risks associated with HIV

Children living with or affected by HIV are vulnerable to poverty and social exclusion, and are more likely to care for family members than a non-affected counterpart


The Social Ecological Model: Our Approach Body & Soul uses this model to ensure it addresses the multiple determinants of poor health outcomes in its highly vulnerable target population.


The Individual



Immigration Status


Family Income

Community Perception of HIV


Service Eligibility




Family Resources

Community Knowledge

HIV Status

Mental Illness

Community Offending Rates

Role Models

Recreational Resources

Education Family Stability

Religious Institutions


Physical Structures Housing Neighbourhoods Social Capital Academic & Resource Institutions Commissioning Practices Specialist Services Employment Sources Local Authority Healthcare Systems

Public Policy Historial Events Law & Policies Immigration Trends HIV Technology Changes to NHS & L.A. Policy Medication Availability Economic Events: Recession Discrimination & Disability Campaigns Around HIV


Life Course Approach

Body & Soul recognises that the needs of its members change depending on their individual development. Body & Soul incorporates universally regarded theories on cognitive (Piaget), social (Erickson), moral (Kohlberg) and physical development in its life-course approach to health. Body & Soul has identified key learning and behavioural outcomes for each stage of development. Prenatal Birth

Piaget Erickson

1 Year

Sensorimotor (0-2) Trust vs. Mistrust

HIV & The Lifecourse

5 Years

Preoperational (2-7)

Autonomy vs Shame/Doubt

Initiative vs. Guilt

Obedience & Punishment


Physical Level

10 Years

13 Years

Concrete operational Industry vs. Inferiority Individualism & Exchange

50 Years

20 Years


Formal Operational - 11- 12 years+ Ego Identity vs. Role Confusion

Good girl, Bad - girl

Intimacy vs. Isolation

Social order orientation

Generativity vs. Stagnation

Social Contact

Integrity vs. Despair

Universal Principles










Bonding Language Development Memory & Learning

more mobile Asserting self Imitate remember explore

Fine & gross motor skills

Independent School Socializing Friends

Puberty starts: Puberty hormones released

Early ten tanner stages 2-4 (girls usually before boys) Considerable Physical growth

Adolescence Growth shows & stops Sexual development complete Key reproductive years

Middle adulthood Fertility decline & menopause Increased risk of congenital abnormalities associated with older parenthood

Advanced adulthood cellular deterioration up risk for cancer, chronic disease





Reducing MTCT, Promoting Safe Infant Feeding

Building emotional literacy Supporting development (physical, intellectual, social, emotional, familial)

Disclosure of HIV status or familial HIV status

Transition to adolescent services

Average age for SI debut

Key concepts related to SI

Reducing risk

Develop basic concepts around health (SEE HIV CURRICULUM)

Developing key patterns of medication adherence



Building social capital & productivity Building family capacity high risk of horizontal transmission

40-55 Accelerated aging and HIV Chronic disease & comorbidities Different theories around HIV’s impact on ageing

55+ Later life & HIV Tertiary Prevention Ageing patterns more pronounced Dementia risk increased HIV & end of life care


Rationale behind the Whole-family approach to Services: Body & Soul applies a whole-family approach to services. This ensures members of all ages receive tailored, age appropriate interventions that meet their needs. Members’ needs are met in a coordinated and comprehensive way, both as individuals and in the context of their families. The whole-family approach is emphasised in both social care and health care contexts in the UK.[i] We recognise that HIV affects families in many ways and individuals have varied responses to receiving the news of an HIV+ diagnosis. However, families also operate as units and use collective assets to adapt and achieve positive future outcomes. Body & Soul offers tailored support to individual family members and works with the family group as a whole, responding to multiple needs. Through this work, family members improve interpersonal relationships and communication as well as find and develop their own resilience and ability to support each other. Body & Soul’s services respond to families in a compassionate, culturally competent way; this approach ensures the unique needs of all families (such as those with children in kinship care arrangements or looked after children) will be met.

The social disempowerment and depression that members often face daily impacts their impetus to access services, therefore, Body & Soul offers tailored and flexible responses to complex situations and reduces the barriers to engagement. Family friendly services and policies include: transport service for families with young children, highly qualified staff programming, delivering specialist services for children and teenagers, support for parents who want to tell their children about HIV in the family and age appropriate therapeutic interventions such as ‘Play Therapy’ for children and psychotherapy for teenagers and adults. Body & Soul’s whole-family approach is consistent with the UK Government’s policies to support integrated working and have the following characteristics which promote joined-up practice: No wrong door – contact with any service offers an open door into a system of joined-up support. This is based on more coordination between adult and children’s services. Looking at the whole family – services working with both adults and children take into account family circumstances and responsibilities. For example,

an alcohol treatment service combines treatment with parenting classes while supervised childcare is provided for the children. Providing support tailored to need – working with families to agree a package of support best suited to their particular situation. Building on family strengths – practitioners work in partnerships with families recognising and promoting resilience and helping them to build their capabilities. For example, family group conferencing is used to empower a family to negotiate their own solution to a problem HIV impacts family structure (due to exacerbating family conflict or through family death) and Body & Soul’s services respond to families in a way that the unique needs of non-traditional families (such as grandparents raising grandchildren or siblings raising siblings) can be met. The family is the centre of many people’s social structure, so responding to family needs is essential as our services improve member wellbeing.

17 [i] This particularly builds upon the Think Family Agenda from DCFS in 2009, however integrated service provision has been and remains a key aspect of Body & Soul’s service provision.

Sample of Body & Soul’s Weekly Service Impact: How the Jones Family Benefits from Body & Soul

Emmanuel Jones

Grace Jones

Fred Jones

Anne Jones

Personal Profile 38 year old- HIV+ Chronic Depression Currently 7 months pregnant w/ 3rd child Has trouble talking with children Grace and Emmanuel Having relationship problems with partner, Fred

Monday Body & Soul’s Children’s Service manager meets with Anne and Emmanuel’s HIV specialist to discuss the upcoming HIV disclosure. She also books the family to attend the Tuesday Evening Service night.



Tuesday Service Evening: Anne has a counselling appointment with a licensed HIV specialist counsellor. She then attends an hour long yoga lesson, led by members living with HIV. Afterwards, she has dinner. Attends an “HIV and Pregnancy” workshop, where she learns about the importance of medication adherence in reducing MTCT.



Attends OCN-Accredited Speakeasy course at Body & Soul, which will help her improve her ability to discuss sexual health with her children

Attends Grace’s case management meeting with Head of Teen Spirit.

Attends his work placement at a local restaurant, which was arranged by Body & Soul.

3 Job Interviews

Tuesday Service Evening:

Fred has a 1:1 with a careers advice specialist. They work with him to formulate a job search strategy & to update his CV. He attends dinner, where he has the chance to talk to another parent of an adolescent about the challenges they are facing.

42 year old HIVUnemployed for past 4 years Having relationship problems with partner, Anne

Attends his work placement at a local restaurant, which was arranged by Body & Soul.

He takes part in Bravehearts, a relationship support group that helps him address challenges of being in a serodiscordant relationship.

14 year old HIVCarer: takes care of Emmanuel & does housework for 4+ hours a day Signs of poor coping: drinking and breaking curfew. Issues with Truancy; has a social worker as a result

9 years old HIV+, unaware but will be disclosed to in the next 3-6 months Severe behavioural/ coping problems, has been expelled from school for fighting on 2 occasions

The Head of Teen Spirit, Body & Soul’s service for adolescents who are aware of their HIV status, has a support call with Grace where they discuss her caring and her coping; they arrange for the Teen Spirit Head to attend Grace’s multidisciplinary case management meeting on Friday. Grace is booked in for Thursday’s Teen Spirit

Thursday Service Evening: Attends Body & Soul 1:1 with a peer mentor who herself was a carer and had issues coping. Before dinner, participates in Project Jam, where she makes some of her poetry into lyrics for a song.

Attends her case management meeting with Head of Teen Spirit.

After dinner, attends Launch Pad where she receives literacy support. Tuesday Service Evening: Attends Body & Soul Children’s Service. Shadowed by a trained volunteer to address externalising social behaviour in a timesensitive way. Has a 1:1 Play Therapy appointment with a licensed play therapist. Participates in a music group designed to help children express emotions. Gets a gold star for controlling his anger.

Multidisciplinary case management meeting with different Body & Soul service heads to formulate a family intervention strategy. This strategy will be reviewed by a panel of experts, the Children & Families Advisory Group


Member-led Services What do we mean by Member-led services? Body & Soul considers its service users to be members rather than patients or clients; each person is part of the community within Body & Soul, bringing not only their own individual needs but also their abilities and skills. Rather than passively receiving care, members actively engage with and take control of their health and wellbeing. They are supported by and become part of a wider community of staff, volunteers, peersupport, specialist services and other agencies.

Member Involvement Member involvement is the member’s role in the design, planning and delivery of health services. At Body & Soul member involvement has been embedded in the organisation’s approach from the start, with even the name Body & Soul being chosen by members. Body & Soul was formed in response to the demand for a service that was appropriate for the target population, specifically children, young people and families infected or affected by HIV. This memberdriven response remains critical to respond and supply the appropriate services according to the diverse demands of those accessing our services. However, the mechanisms for involvement go beyond basic supply and demand economics. The broad range of individual and group interventions recognises members as individuals with complex and unique needs.

Involvement in service design is ensured through several mechanisms including governance arrangements and member evaluation of services. For example, at least one third of those on the Board of Trustees must be infected or closely affected by HIV. Representation of young people is ensured through the Teen Spirit Board of Directors, which is responsible for direction setting for Teen Spirit (the Teen Programme) and being an external voice on a policy level. An embedded service evaluation and feedback structure across the age ranges ensures consistent input into programming and quality control measurement.

Member Engagement Member engagement means engagement in one’s own health, care and treatment. At Body & Soul the health outcomes achieved by engagement reflect the quality of interventions. Both internal and researchbased evidence shows that members who engage with their health also have a greater likelihood to adhere to treatment, to engage with healthcare resources and feel confident and empowered in managing their own condition.

The wide range of workshops and courses available allow members to choose the appropriate support for them, whether counselling, nutrition courses or workshops on medication adherence. This enables members to make choices for themselves. In delivering services members are encouraged to be active within the community. For example, members train and can be accredited to be peer mentors, working within Body & Soul and out in clinical settings .

What can Body & Soul’s member-led approach offer to commissioners?

Body & Soul is able to support commissioners of HIV services through offering a community of expert voices: individuals who are engaged with their health and able to offer further insight into what is needed to promote community health. This engagement includes individuals who are often identified as seldom-heard voices whether due to HIV status or ethnicity, age, asylum status or disability.


Endnotes Explanation of Data Calculation Methods for Number of HIV-Affected Children in London: Calculation Method 1: Total number of persons <18 in Borough by 2010 GLA estimates X 2 (assuming each person has two adults in a caring capacity in their lives) = total number of adults. Then, apply 2009 HPA HIV prevalence data to the total number of adults. Assuming each HIV+ adult has 1 child in their lives, this would be the total number of affected children. Calculation Method 2: Starting with the Over 15 incidence of HIV in the borough, we applied the national heterosexual prevalence statistic to get a baseline number of heterosexuals living with HIV in the borough. We then divided this number in half (to crudely estimate the number of women who are HIV+) and then applied the borough birth rate. This gave us a rough estimate of the number of affected children. This calculation is under-representing the true quantity of affected children because it doesn’t take into account children affected through male carers, fathers, or HIV+ children and their siblings. Number of Schools in LA: Using the Department of Education’s Edubase, we searched for all educational establishments that were currently open by borough. Number of HIV-Affected Students per School: Mean number of affected children in LA/ number of Schools in LA

[1] Mandilia S et al. Rising population cost of treating people living with HIV in the UK, 1997-2013. PLoS One, 5, 12: e15677, 2010 [2] HPA: HIV in the UK 2011 [3] Catalan J et al. HIV infection and mental health: suicidal behaviour--systematic review. Psychol Health Med. 2011 Oct;16(5):588- 611. Epub 2011 Jul 11. [4] What is the impact of HIV on families? WHO, 2005 [5] King E et al. Interventions for improving the psychosocial well-being of children affected by HIV and AIDS.. Cochrane Database of Systematic Reviews 2009, Issue 2. [6] Ibrahim et. Al. Social and economic hardship among people living with HIV in London . HIV Medicine (2008), 9, 616–624

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Reducing Health and Social Inequalities  

Reducing Health and Social Inequalities in people living with or affected by HIV

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