anniversary Special edition
Brigstowe Annual Report 2015/16 1
Contents A Word from our Chair of Trustees .............................................................................................1 Project Coordinatorâ€™s Report .....................................................................................................3 Case Studies.................................................................................................................................4 Our Aims and Objectives ...........................................................................................................6 Who are our Clients?....................................................................................................................7 HIV Information and Myth Busters .............................................................................................8 Volunteers...................................................................................................................................12 Advice and Information Service..............................................................................................13 History of Brigstowe Advice ......................................................................................................14 Case Study..................................................................................................................................15 Housing Related Support .........................................................................................................16 Timeline ......................................................................................................................................18 Migrant Advice & Support Service (MASS) ............................................................................20 REACT! Client Group .................................................................................................................24 Peer Support Service ................................................................................................................27 HIV Training and Awareness Service .......................................................................................30 Future Plans ................................................................................................................................32 Top 10 Ways to Support Brigstowe ..........................................................................................33
Acknowledgements Brigstowe wouldnâ€™t exist without the input from many different local authorities, charitable organisations, volunteers, clients and staff members. It really is a collaborative effort! Below are the people and organisations who have sustained Brigstowe over the past year: Bristol City Council
North Somerset Council
Board of Trustees
South Gloucestershire Council
MAC Aids Fund
to be at deserves th , e rs n e o rt o st p ile p Dear su ary is a m 21st annivers a , ty ri a h c l ca ce at For a small lo meeting pla g of age. “ in s n m a o e c m a : d d n marke ur times a n for us by o me in Saxon se a n o h s l’ c o e st ri m B a s n ho wa we was the ity Council w o C st “Brigstowe” l g o ri B st ri o B g y a b n 21 years tions led that was the the bridge”. cal organisa ic lo m f e o d ip n h a rs p l e partn globa founders – a e face of the th in s d e e n l ca fore recognised lo nt Worker be IV. e H m w p o lo n e is v e d n D AIDS a st one was -1990s with ju nts, the work e id m tm e a e th tr l in a ir d rte e history anti-retrov When we sta Thankfully, th of effective s. l g a in iv n rr in a g d e an a dings than b cements me n the widespre n e a t v u d o a b l a a n ic re ofte and med re. tragically mo y since then a w g ly on the futu n lo rm fi a d e m se u o c c s ys are fo of HIV ha ons these da ti a et rs e v n o c r ission is not y m r that ou u O t. n a d e UK and the dun th re , t y e it y C t o e n th is we d across n has Sadly, Brigsto ues its sprea n ti n o c the conditio IV f o H , g d in e d h n lis p ta erty rs accom ess and pov e and unde g lin d e n le lo w , o e n g k advanta world; public remain deep the 1980s, dis IV e H c h n it si w e g tl in lit – those liv moved on ma against ig st d n a – . st among nd elsewhere a y ork that it C r u o in ge things, w n a h c d rooted here n a om the allenge ed funding fr g hard to ch d in e rk e o -n w h c re u a , which m But we Lottery Fund gnised with o c IG B re e n e th e d b n as Fund a has recently your support ustainability S s l d a e c e n Lo s e t’ w n o rt. Brigst Governme t in this repo u o b a d a re you can nging ictim to cha v g r. n e lli v fa e s ll, a e much d as w , and to have not fare s n o ti a to individuals is n n o a ti rg u o ib r tr n ila ent to o m Some si t only testam lue of their c o a n v is e n th o f o rs a f ss e le t also proof o be here 21 y times regard u b to s ill e st m e ti w g o r Brigst changin This is society. So fo ere to help. h ve with those o re m a d e n w a t le p ada e peop tinue to our ability to the lives of th clients – con d to n e a c – n rs a v e d le re se as fun our on-going egree of ea d y n a h it w d . not achieve and and rightly so – s e to o fund, work r h u w o ll n a o s to u te p ars u kee es, I pay tr ib d over the ye e re st e u te tr n ’s lu e o v w d and e us f Brigsto nded, worke ts, who inspir On behalf o n fu e lie v c a r h u o o h k n w a nd all ular, I th all. volunteer – a . Thank you nts. In partic o lie d c e s it w t d a n h a rity etter at w – for the cha nue to get b ti n o c to d n a to continue st wishes, With warme
air of Trustee
ton, Ch James Brere
“more than half of our trustees are now either living with or affected by HIV” 2
Project Coordinator’s Report HIV continues to be a complex condition that affects a diverse cross section of people. Specific communities are affected in different ways and face very different challenges. Ultimately, HIV can affect anyone and each individual is impacted differently by an HIV diagnosis, with many different factors coming into play. At Brigstowe, our aim continues to be to improve the quality of life for people living with HIV and to do this by meeting their changing needs. We can only do this in partnership with the people we serve. During 2015/16 there has been a significant increase in the involvement of people living with HIV in both delivering and developing our services. We completed the first year of delivering a one-to-one Peer Support Service for people who are newly diagnosed or struggling with their diagnosis. Not only has this proved to be a very effective service, but it has increased the participation of people living with HIV in other areas of the organisation. Both mentors and mentees have offered their skills to the organisation covering a wide range of areas. Recently, we appointed one of our peer mentors as a trustee. This means that more than half of our trustees are now either living with or affected by
HIV – the first time this has been the case in our 21 year history. I am delighted to be able to announce the launch of “Positive Voices”, a five year project funded by BIG Lottery Fund which involves people living with HIV in the delivery of services. This grant would not have been awarded without the powerful contribution of people living with HIV. More information about this exciting project can be found in the section on “Future Plans” on page 30. I would like to take this opportunity to thank staff, trustees, clients, funders, and other organisations for their contributions over the last year. I look forward to working collaboratively over the coming year to ensure that we continue to have a positive impact on the lives of people living with HIV. This is all summed up in our new strapline: “Positive Change Together”. 3
As part of this 21st Anniversary Edition we asked two people to share their experience of living with HIV, one of whom was diagnosed in Brigstowe’s first year and the other very recently.
Deborah HIV Diagnosis: January 1996 I was diagnosed with HIV in January 1996. On diagnosis I was a well-informed person regarding the disease and that was worse as I knew that the future was bleak and I was frightened for me and for my family. At the time I was not in a relationship and that also made it worse as I had to inform my ex- boyfriend who had broken up with me to be with somebody else. It was very hard to communicate this to anyone because of the stigma involved then and the only people I spoke to were the health professionals involved in my care. I was reassured that as I was not symptomatic at that time I had a better chance of living another 5 years if I looked after myself, ate well and took prophylactic Septrin to prevent chest problems! When I told the consultant that I still had desires to be a mother he said it would not be a good idea because the stress of pregnancy would damage my immune system faster and 4
I would get ill very quickly (I’m glad I didn’t listen to him). It was 2 years after my diagnosis that medication became available on the NHS. During that 2 years I was in contact with other positive women through Aled Richards Trust, and Brigstowe. Brigstowe was very helpful in getting me accommodation because I had been living in a place associated with my work and I became unemployed and homeless soon after my diagnosis. Things were so bad at one point I took sleeping tablets day and night so as not to deal with all the issues that were facing me. The support from Brigstowe made me look forward and be positive. Weekly visits became monthly and then 3 monthly as I got stronger and better equipped to deal with the positive diagnosis. They saw me through my first pregnancy and the birth of my daughter, and my first course of treatment and all the side effects I suffered. Today I am just grateful to be here and want to see HIV lose the stigma that it carries in our society.
Dan HIV Diagnosis: October 2014 I was not sick or showing obvious signs of illness. However, I had lost some weight and more recently suffered with an episode of shingles. I put this down to my diet and living and working in Mexico for several years. On my return to the UK in July 2014, I was concerned with lumps in my neck so I decided to go to the doctor. They confirmed that the swellings were my lymph glands. I was quickly referred to the dental hospital’s head and neck clinic as the most likely issue could be cancer (Lymphoma). The tests began with the consultant preparing me for the likelihood of cancer, which horrified me. The tests returned clear of the markers for cancer, so an HIV test was suggested after further awkward discussions. A week of worry later, I returned to the clinic and they said everything was clear, then hesitated and informed me that unfortunately, the HIV test was inconclusive as there was not enough blood in the sample! Another test and another week of waiting followed. When I returned to the clinic with a friend I received the diagnosis of HIV+. My initial response was ‘thank god’ it wasn’t cancer then I thought where is the offer of counselling? There wasn’t any; partly due to the fact I was in the dental hospital. I also learned that there aren’t the resources to offer automatic counselling for HIV patients anymore. I felt like my teaching career was over and found the thought of the future very tainted. I had a million questions and no one to ask.
The HIV clinic then took over and I felt the head and neck clinic was relieved to pass on my case. The HIV clinic was stressful but the nurses were very kind and professional. The next big issue of medication then had to be dealt with whilst still being in a daze, and having no permanent address or job. Some of the medical questions and worries were addressed at this stage which helped me quite a lot. The side effects and anxiety around medication impacted on my life significantly at this stage. Would I always be exhausted by 7pm from this medication? I am very lucky to have family and friends to support me. The HIV clinic staff had little time to address my emotional wellbeing and mental health but told me about Brigstowe. Brigstowe were invaluable at this time, especially with the practical things like finding somewhere to live, getting medical letters and guiding me through the minefields of benefits and legislation around HIV. I have been able to get more involved with Brigstowe and this has helped me and continues to help me manage my diagnosis and positive status.
“ I felt like my teaching career was over and found the thought of the future very tainted. I had a million questions and no one to ask.” 5
Our aims ■■ Our vision is a world in which people with HIV live long and healthy lives, free from poverty, stigma, prejudice and discrimination. ■■ Our mission is to enhance the quality of life for people living with HIV.
Our values ■■ Be non-judgmental. ■■ Regard people as individuals with abilities and not disabilities. ■■ Respect and protect people’s right to choose if and when to disclose information about themselves. ■■ Support people to use their strengths and overcome their weaknesses. ■■ Involve our clients in the design, delivery and development of relevant, high quality services.
Our Aims and Objectives Our objectives ■■ To help positive people increase and maintain their independence through responsive and relevant services. ■■ To meet the changing needs of people living with HIV. ■■ To ensure Brigstowe’s strength and sustainability into the future.
The outcomes ■■ Improved wellbeing (emotional and physical). ■■ Improved independence and confidence. ■■ Improved uptake of entitlements, rights, grants and services.
Who are our clients? During 2015/16 we worked with 170 people living with or affected by HIV. Our clients are a diverse group of people reflecting how HIV can effect people of any sexuality, ethnicity, age or background.
age ranges 70
Number of clients
Key Prior year This year
50 40 30 20 10
Re N co ot rd ed
75 –8 4
65 –7 4
55 –6 4
45 –5 4
35 –4 4
25 –3 4
18 –2 4
economic status 90 80
Number of clients
70 60 50 40 30 20 10
Number of clients
30 20 10
ot he r A ny
ot he r W hi te
D ua lh er ita ge
A sia n
Br iti Bl sh ac k/ Bl ac k Br iti sh Bl ac k A fri ca Bl n ac k C ar ib be an
W hi te
O th er
Gay or lesbian
Re fu se d
C ar Se er lfem pl oy ed
N ot re co rd ed
Pa re nt
St ud en t
sic k Jo Em b s e pl ek oy er ed pa Em rttim pl oy e ed N fu ot ll-t en im tit e le d to w or k
Re tir ed
N ot re co N rd ot ed se ek in g w or k
Heterosexual 7 Not recorded 8 3 Refused 2
5 111 7
HIV Information and Myth Busters HIV in the UK Overall the number of people living with HIV in the UK continues to increase and the number of people living with undiagnosed HIV remains high. In the UK it is estimated that 103,700 people were living with HIV in 2014 including those unaware of their diagnosis (approximately 17%). Access to antiretroviral treatment in the UK has improved significantly over the past decade. In 2014, 91% of people living (and diagnosed) with HIV were receiving
antiretroviral treatment (ART). However, late diagnosis of HIV remains a key challenge in this country. Moreover, evidence suggests that levels of HIV knowledge among the general population have fallen. This is due at least partly to a lack of public awareness campaigns and the absence of HIV from sexual and reproductive health education in schools. Sources: HIV in the United Kingdom: 2015 Report, Public Health England
103,700 In the UK it is estimated that 103,700 people were living with HIV in 2014 including those unaware of their diagnosis (approximately 17%).
Current issues In 2014, a total of 6,151 people were newly diagnosed with HIV in the UK. Two out of five of these new diagnoses were with late stage HIV. Being diagnosed late is associated with a tenfold increased risk of death within one year of diagnosis. Stigma and misinformation continues to have an impact on the quality of life for people living with HIV. Findings from the recent Stigma Index UK 2015 state: 8
â€œIt is worrying that in 2015, when most people living with HIV are on treatment and therefore extremely unlikely to transmit the virus, about half of participants in the study were worried about being rejected by their sexual partners, and many still avoid everyday social activities.â€? Despite having no designated funding, we have done more work than in previous years to address stigma through HIV Awareness Training, social media, campaigning and lobbying.
HIV in Bristol
In 2015, there were In 2014, in Bristol there were
new attendees to Bristol Brecon Unit (specialised out-patient clinic for people who are HIV positive). Of these 114 new attendees,
new HIV diagnoses, a rise of
compared to the previous year. Late diagnosis continues to be a significant issue with
were newly diagnosed. The total number of patients is now over 1
of people in Bristol diagnosed after the point at which they should have started medication which affects long term health outcomes. This is higher than the national average.
Bristol has also recently become a high prevalence area with over 2 in every 1000 people living with HIV.2 Sources: 1 Dr Mark Gompels and Sue Allan HIV Services Report 2014 North Bristol NHS Trust) 2
Bristol City Council’s “Joint Strategic Needs Assessment Report 2015”
Myths about HIV and Aids HIV is
HIV is passed on from person to person if infected body fluids (such as blood, semen, vaginal or anal secretions and breast milk) get into your bloodstream. The three main ways this can happen are: ■■ unprotected sex, ■■ from mother to child during pregnancy, childbirth or breastfeeding, ■■ injecting drugs with a needle that has infected blood in it.
I’m HIV positive.... Myth my life is over Although there isn’t a cure for HIV, treatment is so advanced that it is no longer considered a death sentence. People diagnosed with HIV in the UK today can have a normal life expectancy and live healthy and active lives. Early diagnosis is particularly important as the longer HIV goes undiagnosed the more damage it can do to the body. Truth
My partner would Myth automatically tell me if they had HIV
HIV is no longer Myth a serious issue in the UK
It is not always easy to tell someone you have HIV. In addition, over a quarter of people with HIV are undiagnosed. It is dangerous to assume that your partner would automatically tell you if they had HIV – either because they may struggle to confide in you or because they don’t know they have it! Your sexual health is your responsibility — always using a condom is the safest way to protect against HIV transmission.
Although HIV is now a long-term, manageable condition and not a death sentence, it is still a serious issue in the UK. More people than ever before are living with HIV in the UK and 6,000–7,000 people are diagnosed every year.
During 2015/16 we worked with 170 people living with or affected by HIV in the West of England. These individuals accessed one or more of our services. We have significantly improved the financial situations of our clients â€“ achieving financial gains of ÂŁ404,312 across all services this year. This was from a mixture of welfare benefit applications and renewals, debt write-offs and charitable grants. This year the Advice Service has been in high demand with 112 people accessing the service putting in a total of 301 requests for advice. This is a significant rise compared to previous years. The first full year of our one-to-one Peer Support Service has been a great success with increasing numbers of newly diagnosed individuals accessing the service. We trained 19 peer mentors and 18 mentees received the service, with great outcomes particularly around emotional and mental wellbeing. An evaluation of the service is available on request. This year we carried out more HIV Awareness & Training sessions compared to previous years. We had no specific funding for delivering training but we are committed to meeting this need due to the importance of reducing stigma and misinformation about HIV. Lastly, client involvement has increased over the last year. Clients have been more involved in delivering services such as Peer Support and group events, in enabling organisational change (e.g. development of new logo) and have had a greater presence on the Board of Trustees. Our thanks go to all those individuals who have generously given their time. 11
Volunteers Brigstowe has opened up volunteer opportunities over the past year and we’re really pleased with the results. We’ve had generous people with a range of of skills join the team offering time, expertise and advice. From graphic design to IT to administration, we’re thankful to all the individuals that have helped us. Brigstowe has always had a strong ethos of inclusivity and user involvement, volunteering was the natural next step in developing this important aspect of the organisation. We hope that the volunteering opportunities will attract new input to Brigstowe including giving clients new opportunities to get involved, develop skills and increase wellbeing. We want to say a big thank you to everyone who has volunteered their time and skills over the past year.
February. This is what she says about her experience: “I had been out of work for about a year due to health issues and was looking for something that was interesting and fulfilling, and would help me regain my work skills and confidence – well, I found it at Brigstowe. All the staff have been really supportive and all the clients have been inspiring and friendly. It has helped me remember the things I am good at, and also learn lots about new areas, including refugee/asylum legislation and all the changes in welfare benefits. I’ve been able to get involved in work beyond my admin role, I’ve been offered training too, and I feel that I’m part of the team. In a small organisation there’s always lots to do so if you are interested in volunteering here just get in touch.”
Gill is an admin volunteer with Brigstowe and has been volunteering with us since
“All the staff have been really supportive and all the clients have been inspiring and friendly.” 12
The Adv ice and Informa to ensu tion Ser re that p vice aim eople li support s The ving wit ed to un advice h H IV d erstand are service entitlem a t takes a h p eir right ents. Info proach proactiv s – a r mation a n welfare d lw a e ys lookin initial re and ad benefits g ason th vice on beyond , housin care; ad e client g the g and c Brigstow vocacy ot involv ommun e. In ad , and su to ensu e it d y d with ition to pport a of advic re that r our main re given e and in ights ar entitlem a e r f eas ormatio exercise advice ents ac n, we a d and and sup cessed. ls o p o ort in ot ffer as educ The serv her area ation, d ice is ac s s e u c bt and ch redited Advice employ through Quality ment. the Standa rd.
Advice and Informa tion Ser vice Impact Report 2015–20 16
■■ The A dv
ice Serv ice wor ■■ 26 of ked with these w 112 clie ere new nts. clients. ■■ In the past five years th was in t e highe he perio st numb d 2 0 er of cli 1 5–16. ■■ 301 r ents ac equests cessing for assis our serv ted cas ■■ 31% ice ework o of these r a d w v e ic r e relate e and in £114,96 d to We formatio 1 in inco lf a n were m r e e B e f o n r clients receive efit adv ■■ 19% . d. ice, wh were fo ic r h a d g vice aro enerate includin d und Ho g throug using, 9 h either authorit 3% of c a tenan y accep ases ha cy bein d positiv ting a d g maint uty to h e outco ained o ouse th mes, r obtain at perso ed, or b n. y the lo cal
History of Brigstowe Advice The provision of information & advice has been a core part of Brigstowe’s services throughout it’s 21 year history. Our aim, through advice and advocacy has always been to help people to access all their rights and entitlements and thereby improve the quality of life for people living with HIV.
to meet the growing need of this very disadvantaged group whilst still ensuring that we had capacity to meet the needs of our other clients.
From 1996 to 2003, information, advice, support and housing management were delivered by between one and two members of staff. In 2003, the introduction of Supporting People funding allowed us to expand our staff team by three people to deliver more intensive support. This in turn enabled the Advice Service to focus it’s work purely on advice giving.
In 2011 our Information & Advice Worker obtained OISC level 1 accreditation in Immigration Advice.
Both the economic and political environment have had a significant impact on the Advice Service. In 2008 the UK went into recession leading to a growth in poverty, debt and homelessness. In the same year, Employment and Support Allowance was introduced. In 2010 the government introduced major cuts to public spending, with the most significant welfare reform taking place in 2013 alongside cuts to Legal Aid. In 2010 we launched a specific Migrant Advice & Support Service (MASS) in order
Additionally, in 2010 the Information & Advice Service achieved the Advice Quality Mark (now the Advice Quality Standard) through Advice Services Alliance.
Our most recent Advice Standard audit took place in March 2015 and the auditor wrote: “The driving force behind the Organisation is the undiminished passion and dedication of personnel who clearly see that their value base is firmly in the voluntary sector and specifically in assisting those facing daunting barriers to social justice and welfare, to enable them to access due rights and entitlements. The dedication and practical knowledgeability of personnel is truly impressive, and the audited files abound with examples of pragmatic assistance given to clients in helping them become more independent”.
“Access to free, high quality social welfare legal advice is an essential part of a good society.” Baring Foundation (Smerdon, M and Randall, J (2013) and others)
When I was diagnosed with HIV earlier this year it was yet another shock in an already crowded year of misfortune. I was left to ponder my position alone for more than two weeks so by the time I attended my first consultation I was in a heightened state of anxiety, to put it mildly. Stunned by the whole experience I was given the details of the Brigstowe Project. It is no exaggeration to say this introduction has positively impacted my life in ways I could not have imagined. The initial phone call I received left me in tears, not from distress but rather the opposite, in realising there was someone ‘out there’ who cared. Brigstowe, by means of practical help, concern, and positive reinforcement have enabled me to cope with my condition. The staff have provided what I can best describe as a form of empathetic scaffolding which surrounds me at my most vulnerable times and assists me in finding strength to handle situations as
they arise. On occasions I can deal with an issue alone and that part of the support can be discretely removed. Other times it’s a full-on panic and the props are quickly reinstated just where they’re needed, and with minimum fuss. The sense of not feeling alone, not feeling guilty, not a bad person and above all NOT a worthless individual are all thanks to this organisation. I have taken advantage of the one-to-one peer support which was offered and, in time, I would like to repay the kindness by offering my support to someone in turn. For the moment I’m attending planning meetings and offering my design skills. Gratitude doesn’t begin to express my feelings towards Brigstowe. Rebuilding my life feels possible for the first time in a long while. Self-esteem is an easy thing to lose and phenomenally difficult to rebuild but with the Brigstowe team behind me I can only succeed.
The UK government’s “Don’t Die of Ignorance” campaign is launched.
The number of AIDS diagnoses in the UK exceeds 10,000 and over 25,000 people in the UK are living with HIV.
Introduction of the AIDS Support Grant (ASG) – funding to enable local authorities to provide HIV support services for people living with or affected by HIV.
AIDS (Acquired Immune Deficiency Syndrome) is first used as a term.
‘89 1990 ‘91
New drug combinations are shown to halt the progression of AIDS.
Appointment of Development Worker for the Brigstowe Project.
The Brigstowe Project registered as a charity on 17th October. Robert Griffiths Award received after first year of operation for excellence in Housing & Community Care.
HIV ‘treatment as prevention’ is hailed as the biggest scientific breakthrough of the year by Science Magazine, as a major trial shows a 96% reduction in HIV transmission risk during heterosexual sex without a condom when a person is successfully responding to treatment. Disability Discrimination Act gives legal protection against discrimination for people living with HIV from the point of diagnosis.
99 2000 ‘01
Expansion of Brigstowe to provide housing related support for up to two years for anyone living with HIV. This involved recruiting 3 new staff and a move to larger premises.
Launch of REACT! client group to bring together people living with HIV to reduce isolation, increase confidence and skills.
Bristol becomes a high prevalence area as just over 2 per 1000 people are living with HIV.
‘09 2010 ‘11
Information & Advice Service awarded the Legal Services Commission Quality Mark. Launch of Migrant Advice & Support Service (MASS) – a specialist service for people without access to public funds.
Our Information & Advice Worker obtained OISC level 1 accreditation in Immigration Advice. Introduction of Peer Support Service. Launch of Positive Voices incorporating one-to-one Peer Support, Recently Diagnosed Workshops and HIV Awareness Training.
Housing Related Support Brigstowe Project believe that having appropriate stable housing is essential to anyone living with HIV. Stable housing allows people to manage their condition in the best possible way for them, often giving space and consistency enough for individuals to look at other aspects of their lives such as diagnosis, finance or mental health. The aim of the Housing Related Support service is to help people to live independently in their own home with an improvement in their overall quality of life. We offer a flexible service and work with each individual to help them to identify the goals they would like to achieve. Each client is allocated a support worker who they meet up with on a regular basis, with support usually lasting between three months and two years based on individual need. Many clients access this service when they are in crisis. This might be homelessness, no access to benefits, relationship breakdown or problems with physical or mental health. Many people living with HIV are still fearful of accessing
mainstream services and need a service that they know understands HIV and the issues that can come with that. We work with the individual to resolve the presenting issues, gradually moving on to longer term work such as improving independence and confidence as well as their ability to manage their physical and emotional health. Very often an important aspect of our work is to help people to link in with other agencies in order to access services that will help them move forward in their lives. Referrals and signposting to other agencies cover a wide range of areas as shown opposite.
The Housing Related Support Service is funded by Bristol City Council and we work with 24 people at any one time. During the year we worked with 40 people. Support came to an end for 19 of these clients who had 248 positive outcomes between them.
“I now have a flat and [I’m] more mentally stable” 18
“100% support. You helped me with my confidence”
“The service got me through some of the darkest days I have ever had after my diagnosis. I can see light at the end of the tunnel now”
Housing 13% Foodbanks 12% Community networks & befriending 13% Physical health 10% HIV related 8% Training, education & employment 8% Welfare rights, debts, finances 10% Counselling 5% Legal & immigration advice 7% Community Care 4% Other 10%
Of these clients, the percentage of clients with positive outcomes in the following areas were: Improved finances
89% (financial gains for all clients during the year totalled £265,992
89% with 100% managing to maintain independent living at the end of support
Improved ability to manage their physical/ mental health/drug & alcohol use
Improved access to entitlements
Improved involvement in the community
During the year we received 11 feedback forms and all but one gave the top, “very good” rating, for “overall satisfaction”
Migrant Advice & Support Service (MASS)
The MASS project was set up in 2010 in response to a need for HIV positive refugees, migrants and survivors of trafficking to have a dedicated service that understands their specific needs.
traumatised individuals, who may be facing a re-traumatising immigration process and isolation as well as experiencing the stigma of living with HIV.
MASS supports individuals who are subject to immigration control, who may be fleeing persecution, modern slavery, or have come to the UK to work or study. Our MASS worker engages with clients alongside partner agencies to prevent destitution, access immigration advice, improve health and wellbeing.
In the last two years we have also become more actively involved in raising awareness and tackling stigma around HIV. HIV stigma and misinformation continue to be problems in some migrant communities. We have hosted stalls at Refugee Week celebrations and events in refugee and migrant community groups. We hope to expand this into raising awareness in faith communities.
MASS is responsive to urgent and basic needs such as housing and access to funds, but importantly we also work with individuals on their wellbeing. We provide a safe and confidential space for often 20
Our thanks go to the charitable trusts that fund this service: MAC Aids Fund and Henry Smith Charity.
“Since I started coming to Brigstowe I have felt more free, free to say anything with confidence and be myself. I can’t do this anywhere else – be myself and talk about HIV. In this way Brigstowe is my home.” 21
100% of destitute MASS clients have been supported to access housing this year through the Home Office, Social Services or local support networks.
■■ We have strengthened relationships with local partners and we are building new relationships with mental health services.
£2,143 has been raised for clients from charitable grant applications. 85% of MASS clients supported during this grant period have seen a reduction in poverty as a result of our assistance. Increasingly, clients report that they are struggling to afford food. We have assisted with food bank vouchers and emergency grants to prevent them going without daily essentials. We support all clients to access immigration advice and provide a holistic support package when clients receive an outcome on their immigration claim 100% of our clients who required immigration advice received this from a local provider. All clients who have received a positive immigration decision have been supported to understand rights and entitlements, access housing and welfare benefits. All clients who have decided to return to their country of origin have been supported to plan the return, access funding for reintegration, and receive health checks and medication before flying. We provide a safe listening space for clients to benefit from emotional support 75% of MASS clients accessed emotional support from the service during the year. There were 22 reports of improved wellbeing and 27 reported outcomes of improved independence and confidence, with all of the clients accessing emotional support reporting a positive outcome. 22
■■ We have contributed to many multiagency responses to issues with accommodation, immigration policy responses and asylum support problems. ■■ We contributed to a multi-organisational response to the cuts in financial support given to asylum seeking families. ■■ At Bristol World Aids Day we spoke about the dual experiences of stigma experienced by migrants in the UK experiencing prejudice due to HIV and immigration status. ■■ We have been able to offer more financial assistance to clients than previous years. This is due to an increased budget to help our most destitute clients.
What clients say about us “Since I started coming to Brigstowe I have felt more free; free to say anything with confidence and be myself. I can’t do this anywhere else – be myself and talk about HIV. In this way Brigstowe is my home.” “Brigstowe has helped me in so many ways and for a number of years, I don’t know where to start. My immigration case was very difficult, I have been trying for many years to get leave to stay in the UK. I have had to go frequently to report at police stations, every time frightened that me and my daughter will be sent home. Brigstowe helped me to find a solicitor who finally found a way for me and my daughter to stay safely in the UK. I don’t believe that I finally have leave – it took so many years – and if you don’t have anyone to support you through that, you can’t do it, you go mad…I would have gone mad.”
Wilma’s Story Wilma is seeking refuge in the UK following threats to her life in Zimbabwe. When she was referred to our service she was new to the area and had recently left hospital following two months as an inpatient recovering from a life threatening condition that continues to impact on her daily life. Wilma was destitute and without funds for even the most basic of needs. We applied for funds to give Wilma a regular income,
which we have maintained for six months. We have worked alongside legal professionals in health, community care and immigration to ascertain and access Wilma’s rights to treatments and services. Wilma is now engaging with health specialists and awaiting assessments from Occupational Health and Social Services. She is receiving specialist counselling as a result of our referral and is engaging with Brigstowe’s Peer Support Service.
“Before I came to this service I was in hospital for 2 months, I was homeless and discharged to a community house. When I came to Brigstowe everything was at a standstill; I didn’t know what to do or where to go, I had no money, I had nothing. The first thing my worker did was listen to my situation, it really helped to have someone patient and kind to listen, it helps to know you’re not alone. My worker applied for grants and got me an allowance from a charity. My immigration situation was at a dead end and causing me great anxiety, but now my worker is helping me to get immigration advice and take control. I was referred to counselling, but I’ve also been able to talk to my worker about my condition and my life. From where I was before and where I am now – I feel much better, I talk and my worker listens.” 23
“Through the REACT! Service I have learned that you are not alone in this world.” The REACT! Service offers workshops and activities for HIV positive people, with some events also inviting partners and children along too. It is a user-led service, ideas for events and workshops come directly from the clients at a bi-yearly planning meeting. Increasingly, we are opening opportunities for clients to facilitate events and conduct workshops sharing their skills which is working really well. Over the last year we have seen trips to the SS Great Britain, National Trust properties and other areas of interest in Bristol and the surrounding areas.
Workshops are often specifically designed for people living with HIV. We have worked closely with a Clinical Psychologist who has a specialism in HIV. She has designed workshops on HIV and Sleep and HIV Related Dementia for the REACT! Group. We have also conducted workshops on welfare benefit changes and IT skills. The REACT! Service provides a space for HIV positive people to be open about their diagnosis, an experience people often do not feel they can afford to have in everyday life. The service aims to reduce isolation, increase confidence and develop skills.
REACT! Client Group Impact 50 clients attended REACT! events and workshops during the year. Members of the group reported an overwhelming improvement in their sense of wellbeing as a result of the events and workshops.
Recommissioning of sexual health services “There are a lot more opportunities and services out there than I knew about”
73% felt more confident
77% felt happier
“I have learnt how to use a tablet, and I now go to I.T. facilities myself”
68% felt less isolated We asked members of the group what they learnt from the events and workshops: HIV Update “I know more about new treatments and side effects” Massage/Reflexology “Massage can release tension when you’re stressed” 24
“Sections of your feet can relax different areas of your body”
Christmas Party “There were things for the children to do so I could enjoy time with adults, I enjoyed getting creative and the children enjoyed the party” Bristol Aquarium “I learnt about fish and plants, and felt happier, I had a good feeling because of nature”
73% 77% 68% More confident
Peer Support Service The Peer Support Service helps people to understand and come to terms with living with HIV. Peer mentors provide one-to-one expert support for people who are newly diagnosed with HIV or struggling with their diagnosis. Mentors receive comprehensive training to enable them to provide emotional support, information and advice. They are people who are living well with HIV and can draw on their lived experience of managing their HIV diagnosis to help others.
The Impact We improve the emotional and mental wellbeing of people living with HIV (PLWHIV) After using the service 100% of mentees reported an improvement in self-esteem and confidence and a better sense of purpose in life. After participating in training and mentoring, 100% of volunteer mentors have reported better self-esteem, confidence and an improved sense of purpose in life.
We support the social inclusion of PLWHIV After engaging in a mentoring relationship, 100% of mentees reported a reduction in isolation and 67% reported better knowledge of professional support and information networks. 100% of mentors said after participating in training and supervision they had better access to professional advice and information. 100% of mentors also said that by mentoring they felt they had better supportive relationships. We support the PLWHIV to manage their diagnosis as a long term health condition Whilst receiving or providing the service, 67% of mentees and 85% of mentors reported a better engagement with their medical treatment. 33% reported an increase in understanding of HIV. After completing the training and participating in supervision 100% of mentors reported a better understanding of HIV. 23% of mentors outlined more confidence in disclosing their status when applicable.
reported improvement in self-esteem and confidence (mentees and mentors) reported a reduction in isolation (mentees) reported better access to professional advice and information (mentors) reported better supportive relationships (mentors) reported a better understanding of HIV (mentors)
67% 85% of mentees reported a better engagement with their medical treatment.
of mentors reported a better engagement with their medical treatment.
Achievements ■■ 19 PLWHIV trained new mentors. ■■ 18 Mentees received the service, 9 of which completed during the year. ■■ In recent months more newly diagnosed individuals are accessing the service. ■■ The service has contributed to an overall increase of service user involvement in Brigstowe. Individual mentors and mentees have offered their skills and experience within the organisation. ■■ The service has been incorporated in Positively UK’s Project 100. This means all mentors have the option of completing a vocational qualification in peer mentoring. ■■ Relationships between partner organisations as well the HIV clinic in Bristol have been strengthened. ■■ Mentors have supported their mentees to access the REACT! client group.
What mentees say about the service:
“My mentor has been really helpful to me. As you know without his help and support I would not have started my meds at all – I would have got more scared and postponed them.”
“Two days ago I have started the medication and I am taking control of my life again, going to the gym and doing all the things I used to do before. My mentor has been super supportive and it’s good to know I can count on him, it really cheers me up and doesn’t make me feel alone in facing this.” 28
I was interested in becoming a mentor because I am in a better space in myself now. I think I’m managing better than before. When I was diagnosed I didn’t have a mentor myself – there would have been so much difference if I had something like that. So, I think it is really important that people have support from someone who knows what it’s like. You can’t solve your mentee’s problems but you can support them to work through them. I’ve also learnt that as a mentor you need to know your limits and look after yourself too.
I was interested in meeting someone else living with HIV because when I was diagnosed I thought I was the only one in this situation, I was very lost and really, really down. With the mentor’s support I now feel better. It is good that I have had a mentor at this time.
It is also important because in terms of HIV it is difficult to talk to people, you can’t just approach someone and say: “I’m HIV positive and want to talk”. So, if you have a mentor who is assigned to you then you feel confident and you open up and talk about issues that you wouldn’t talk to any else about.
It has been a great help for my life. Perhaps without that mentor, I think things would have been worse for me by now. But with her I see hope and courage. Now I don’t think about my status – I only think about it when I take meds or go to the clinic. So I think it is very important for someone who is diagnosed to have a mentor. I feel better now. When I was diagnosed, I lost so much weight, and I was worried about my HIV blood tests, but last month when I went to the clinic the results were better which I am very happy about, I’m putting on weight now; I’m eating and sleeping well now. The mentoring has helped with this. 29
HIV Training and Awareness Service The service breaks down stigma and misconceptions of HIV giving a better understanding of the condition
The aim of the HIV Training and Awareness Service is to raise awareness and understanding of HIV amongst professionals and the general public. Clients have expressed the need for other services they access to have an understanding of HIV issues. A number of clients have had difficult experiences where their HIV status has been disclosed by professionals unnecessarily. Understandably, this can have a big impact on an individual’s relationships with family, carers or services. Our HIV Awareness Service has responded to a number of professionals requesting training to improve their team’s knowledge of HIV.
■■ University medical students.
Sessions are delivered to increase understanding of HIV as well as to reduce stigma that people living with the condition can face. We do this by informing people about HIV and dispelling myths. Sessions are informative and interactive and also include a positive speaker sharing their experiences of living with HIV.
The Impact People trained report an increase in their understanding of HIV and a change in attitude towards people living with HIV. From a recent session delivered to prison staff, 100% of trainees reported a significant improvement in their knowledge of HIV and routes of transmission leading to less stigma surrounding HIV. 30
Sessions delivered to a range of services and professionals. ■■ Statutory mental health services. ■■ Prison staff. We also delivered a session to prisoners at HMP Ashfield. Prisoners have a higher than average risk of contracting HIV.
Service feedback: ‘The Brigstowe Project have been involved in running HIV workshops at the Bristol University Medical School central teaching day on migrant health for the past 3 years. This is compulsory teaching for 250 students. We have very much valued their input. The patient’s voice is very important in this teaching; the students receive education in the purely clinical side of HIV elsewhere. The Brigstowe Project were able to recruit people who were already advocates in the area and spoke powerfully about their perspective. Educators from Brigstowe then ran workshops for students alongside service users. The sessions received excellent feedback from students.’
Case study The Brigstowe Project was invited to deliver HIV Training and Awareness to HMP Ashfield to both staff and prisoners in separate sessions. Topics such as transmission, treatment options, disclosure and confidentiality as well as living well with HIV were covered in great detail. A personal testimony of living with the condition was also provided by a positive speaker.
During the training and before the positive speaker spoke about their experience, a prisoner said ‘In our culture we wouldn’t even spit at someone who is HIV positive, the disease is that disgusting.’ However, once the training had ended a number of prisoners (including the person who said the previous quote) approached the positive speaker to shake hands and outline how much they learnt and enjoyed the training. This clearly outlines what HIV training can do in breaking down barriers and stigma.
Feedback from the prison staff:
“Thank you so much for yesterday, it was really fantastic and I have had such great feedback from staff and prisoners. Some have said it was one of the best training sessions they have ever received and that was from staff. Prisoners are raving about it; it’s created a nice buzz around the place.” 31
Future Plans We are delighted to be able to announce the launch of Positive Voices which is a five year project funded by The BIG Lottery Fund and will include: ■■ one-to-one Peer Support Service; ■■ a series of workshops for people who have been recently diagnosed; ■■ HIV Awareness Training for professionals and community groups. The project is called Positive Voices because each element will include people living with HIV in both the development and delivery of the services. Positive Voices is about people living with HIV being empowered to use their experiences to help each other and to address stigma and misinformation amongst professionals and communities. In March 2016, we heard that we were awarded a significant grant from Central Government Local Sustainability Fund 32
(administered by BIG Lottery) aimed at helping small to medium sized charities become more sustainable. We are grateful for the recognition and investment in our services. This is a twelve month grant that will allow us to move forward in the following areas: ■■ commissioning processes – most local authority contracts and grants are now awarded through a competitive tender process. The grant will help us to build our capacity and expertise in this important area; ■■ improvements to our IT systems and equipment to enable us to work more efficiently; ■■ review and develop our monitoring and evaluation so that we can clearly evidence the difference we make; ■■ build our marketing and publicity capability to raise awareness of HIV and publicise our services.
Top 10 ways to support Brigstowe 1
Raise HIV awareness. Tell someone the facts about HIV (see page 10).
Connect with Brigstowe. Follow us on Twitter, check out our Facebook page or sign up to our newsletter by emailing firstname.lastname@example.org.
Give your time and skills. Come and volunteer with us!
Donate. 23% of Brigstowe’s clients have no recourse to public funds. £4 will buy a bus ticket to pick up HIV meds. £5 will top up a mobile phone and allow someone to contact family, friends or their support worker.
Hold a community fundraising event for Brigstowe. Whether it’s face painting, selling cakes or a 10K fun run, Brigstowe will support you to make the most of your venture.
Make a legacy pledge. Leave part of your estate to a good cause. Ask today how your gift could support Brigstowe.
Become a member. You will receive regular correspondence and news about Brigstowe. You will also receive an invite to our AGM and the right to vote.
Ask for our HIV Training and Awareness team to come to your workplace, community or faith group.
Pay for a day! Pay for a day of the REACT! Service – help reduce isolation and increase wellbeing for HIV positive people and their families.
Become an HIV activist. Check in with the National AIDS Trust on Twitter or on their website to get more information about being an HIV activist.
If you would like any more information on any of these ways you can support Brigstowe, please get in touch! We’d be delighted to hear from you. 33
Email: email@example.com Twitter: @BrigstoweInfo
Owen Square Park
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Registered Charity No: 1049945
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Easton Community Centre
Registered Company No: 3107835
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Easton Community Centre, Kilburn Street, Bristol, BS5 6AW
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Telephone: 0117 9555038
To celebrate Brigstowe's 21st Anniversary we have published a special edition annual report.