Annual Review 2012-2013
Supporting people living with HIV or Hepatitis C in Scotland
Directors Current Directors
Directors who resigned in 2012/13
The Right Reverend John Armes
Ms Shulah Allan mbe
(appointed 26 March 2013)
(resigned 29 May 2012)
Ms Annabel Mowat
Dr Karin Froebel Overton
(appointed 26 March, 2013)
(resigned 26 March 2013)
Ms Annie Park
Mr Andrew Marshall-Roberts
(appointed 26 March, 2013)
(resigned 25 September 2012)
Dr Alison Richardson Ms Eunice Sinyemu Ms Lesley Taylor (treasurer) (appointed 11 September, 2012)
Mr David Taylor mbe Ms Pauline Weibye Mr Brian West Mr Tom Wood qpm (chair) Dr Helen Zealley obe
Patrons Anthony Alderson
Alexander McCall Smith cbe
Christopher Bell
Sheena McDonald
Bob Chilcott
Shirley Manson
Sir Tom Farmer cbe kcsg
Christopher Richardson
Our partnerships Waverley Care offers its services in partnership with: The City of Edinburgh Council, the Councils of Mid, East and West Lothian, NHS Fife, NHS Greater Glasgow and Clyde, NHS Highland, NHS Lanarkshire, NHS Lothian and The Scottish Government.
Registered office: 3 Mansfield Place Edinburgh EH3 6NB Tel: 0131 556 9710 Email: info@waverleycare.org
www.waverleycare.org
Our work Waverley Care is the leading Scottish charity providing care and support to people living with HIV or Hepatitis C. Whether someone is living with HIV or Hepatitis C or is the partner or family member of someone affected by these conditions, we have services to support them. Waverley Care offers a range of services such as self management, peer support, information and advice, befriending, prevention and education. From our support centres in Edinburgh, Glasgow and Inverness
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we reach out to communities across Scotland. We’re here to support everyone in Scotland affected by HIV and Hepatitis C, as well as offering specialist services to those living in African communities, gay and bisexual men, children and young people and people affected by drug misuse.
Our services Our national services: • African Health Project
• Peer Support
• Awareness Raising
• One-to-OneSupport
and Education • Befriending
• Support Groups • Self Management
National services plus: •
Condoms by Post
•
HIV Outreach, Prevention and Education
INVERNESS: HIGHLAND
National services plus:
GLASGOW: GLASGOW ARGYLL & BUTE LANARKSIRE
National services plus: •
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Hepatitis C Support, Education and Information
KIRKCALDY: FIFE
EDINBURGH: EDINBURGH & LOTHIANS SCOTTISH BORDERS
•
Employment Training and Education
•
HIV & Hepatitis C Outreach, Prevention and Education
•
Support Service for Gay and Bisexual Men
National services plus: •
Advice and Information
•
Children and Families Service
•
Employment Training and Education
•
Milestone House Residential Respite Unit
•
Outreach and Education
•
Support Service for Gay and Bisexual Men
HIV and Hepatitis C statistics
Around 5,900 people are living with HIV in
4,509 have been diagnosed with HIV – another 1,400 may be infected but are undiagnosed
Scotland*
Around 38,000 people are living with
Hepatitis C
in Scotland ... ‡
... an estimated 18,000 of those living with Hepatitis C may be
infected but are
undiagnosed
* Health Protection Scotland, diagnoses up to end of June 2013 ‡Health Protection Scotland, 2012
Message from our Convenor “We will continue to adapt our services to ensure they meet the needs of the communities they serve.” Waverley Care has experienced another successful year with many key achievements to celebrate. Looking back over 2012–2013 the charity continued to expand the services that it provides to people living with HIV or Hepatitis C in Scotland. We won tenders to continue our work with the African communities in Lanarkshire and Greater Glasgow and Clyde. We also won a contract to deliver Hepatitis C services for Greater Glasgow and Clyde, and secured a further three years funding from Alliance Scotland to develop our highly regarded Self Management Service. To support our increasing presence in the west we moved to a new office in Glasgow in September 2012. This provides excellent space for staff as well as offering more room for support groups, training courses and one-to-one support. The new centre will also help us build our brand and profile in Scotland’s largest city. Exciting plans are in place for Milestone House, our respite and intensive support unit. We have secured the long term future of Milestone through close work with our partners NHS Lothian and City of Edinburgh Council. Over 2013/2014, we will be developing a new service providing more
intensive care to people. One of the primary aims is to reduce the amount of time our service users spend in hospital. It also means we will be well placed to support people as they age with HIV, as well as those individuals who need support to enter and complete treatment for Hepatitis C. A new strategic plan was developed for 2013-16 through collaboration with our service users, staff, board members and other stakeholders and we aim to continue building on our key strengths in the coming years. We will continue to adapt our services to ensure they meet the needs of the communities they serve. During this year we said goodbye to three of our Board members – Shullah Allan, Dr Karin Froebel Overton and Andrew Marshall-Roberts. I would like to thank them for all their support, and the expertise they brought with them. I am pleased to welcome four new Directors to the Board – Annabel Mowat, Annie Park, John Armes, the current Bishop of Edinburgh and Lesley Taylor as Treasurer. They all bring with them a wide range of skills and expertise and I’m sure they will be an asset to Waverley Care.
On behalf of the Board of Directors I would like to thank our supporters, partners, staff and volunteers for their ongoing support of Waverley Care and for helping us make a positive difference. Tom Wood – convenor of the board
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Message from our Chief Executive “I am truly inspired by the work we do at Waverley Care but none of this would be possible without our supporters.” Every day I am proud to be part of an organisation like Waverley Care which keeps people at the forefront of its work. During 2012/13 I’ve also been encouraged by the response from fellow charities, health boards, the Scottish Government and local authorities to the needs of people living with HIV or Hepatitis C in Scotland. As a nation we are forging ahead in our response to these conditions. In 2011, the Scottish Government produced its Sexual Health & Blood Borne Virus Framework. As the leading Scottish charity providing care and support to those living with HIV, our work is aligned towards meeting the outcomes of the framework: • fewer new infections • a reduction in health inequalities • people affected lead longer, healthier lives • a society whereby the attitudes towards those affected by HIV and Hepatitis C are non-stigmatising and supportive Throughout this review you will read how Waverley Care is working towards these outcomes and the difference we have made in 2012/2013. To help us reach out to even more people affected by HIV or Hepatitis C, Waverley Care has this year secured funding from various sources to provide services in communities we have never reached before, for example, through our new
Hepatitis C service in Glasgow and Clyde and our work with African communities in areas such as Fife and Grampian. Our work also continues to be recognised within the sector. In 2012 our Children and Families Service won a Care Accolade from the Scottish Social Services Council. We continue to raise our national profile to grow awareness of HIV and Hepatitis C amongst many audiences including the Scottish general public. This is highlighted in our successful Scottish Government funded ‘Always Hear’ campaign which challenges the stigma associated with HIV in Scotland. Resources have been specifically developed for schools and churches to increase knowledge and understanding about the realities of living with HIV in Scotland in the 21st Century. I am truly inspired by the work we do at Waverley Care but none of this would be possible without our dedicated staff, volunteers and supporters. We continue to have a strong base of committed volunteers who selflessly give up their spare time to co-facilitate support groups, fundraise and help with the day-to-day running of our support centres. We are also thankful to the composers, musicians, comedians and local businesses that put on events in aid of Waverley Care or allow us to use their venues. In 2012 we celebrated our 21 year fundraising relationship with The Pleasance, the Edinburgh Fringe venue. Over £250,000 has been raised for our work through this partnership which is fantastic.
I would like to extend my thank you to all our supporters who are helping us make a real difference to the lives of people in Scotland who are affected by HIV and Hepatitis C. Grant Sugden – Chief executive
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Helping to prevent new infections of HIV and Hepatitis C A key part of our work is HIV and Hepatitis C prevention. We do this through reaching out to individuals in communities who are most at risk of contracting these conditions. We have an innovative approach, which is showcased best through our African Health Project. The project engages with grass root community organisations in African communities to build trust and reassurance amongst its members. Illustrating this is the good relationships we have with business owners, such as African barbers, hair salons and food shops, who are now comfortable displaying condoms on their premises. In Glasgow and Paisley, staff in the barbershops are also being trained as peer educators to engage customers in discussions about sexual health and HIV testing. Our prevention and awareness services include providing free baby milk formula for mothers who are HIV positive, to help reduce the risk of a baby contracting the virus. We also carry out ‘Stop Talk’ work on the streets of Glasgow where Africans are approached to talk about sexual health and HIV, and we link in with other community organisations and churches to host awareness raising events. Our African community choir, ‘Voice of Hope’, has sung at various high profile events in 2012/2013 helping to spread the important messages about HIV prevention and testing.
Our Hepatitis C Education and Prevention Service targets those most at risk of contracting Hepatitis C in Greater Glasgow and Clyde, particularly those who are currently using or have previously used drugs. We talk to people about how to stay safe and how to reduce their chances of contracting the condition – this is often within the communities where there is a high prevalence of drug use and therefore a high risk of contracting Hepatitis C. This work also involves training health professionals and volunteers who work and live in these ‘at risk’ communities. Early testing is also key to reducing the number of new infections. If someone is aware of their status then they will be more likely to take steps to prevent transmitting it to anyone else. Our one-toone work, building up trust with individuals, allows us to talk through the importance of testing and to support people through the testing process. This can happen either at a local clinic, or be delivered by one of our trained staff in a setting that feels comfortable for them. Overall, testing and prevention work is essential in achieving our dream of a HIV and Hepatitis C-free Scotland.
Our work in practice Okara is an African man who came to live in Scotland several years ago. He was aware of Waverley Care’s African Health Project through the services’ outreach work and contacted the project in 2012 to find out where he could go to get an HIV test. He was also keen that a member of staff went along with him to the testing clinic.
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On the day of his appointment, Okara didn’t turn up. He told his support worker, Jonathan, that he didn’t want to get tested anymore. As with many people, for Okara, the fear of going for a test and finding out it was positive overshadowed the many benefits of knowing his status. Waverley Care continued to engage with Okara. When he found out that the service could now carry out an HIV blood
test in a place that he felt comfortable by a support worker he knew, he decided to get tested. Jonathan helped him through the process, and when he received his test results he found they were negative. Okara left Waverley Care, free from the anxiety that had gripped him when he didn’t know his HIV status. He also knew how to protect himself from becoming infected.
2000 - 4000 condoms per month were
issued through Highland, Argyll and Bute Condoms by Post scheme Around 800 people in African communities across Scotland received information about HIV transmission, testing and treatment
422 people at risk of contracting Hep C
took part in ‘peer education sessions’ in Greater Glasgow and Clyde
Helping to break the ties between poverty and poor health For many, finding out they are HIV or Hepatitis C positive can be an overwhelming experience. Many people who are diagnosed are also living with other issues such as drug and alcohol misuse, poverty or mental health issues. People may struggle with their diagnosis and find it challenging to deal with alongside day to day things such as work. Relationships can also suffer as people can find it difficult to open up to loved ones. We aim to support people through their diagnosis to help them get on with their lives no matter what their situation is. Our Advice and Information Project provides a wide range of information about a variety of topics such as benefits and housing. Support workers also provide information about treatment and side effects. Our Employment and Skills Project helps people who are out of work with training and the skills they need to get a job such as CV writing and interview skills. The service also helps people who are in employment but are worried about disclosing their HIV or Hepatitis C status because of fear of discrimination. Our Hepatitis C Prevention and Education Service works with people who are at a high risk of contracting the condition. In many cases these are people who are current or previous drug users who struggle to engage with services. This can be down to mistrust or because they face a number of
financial, emotional and social problems linked to their drug misuse. We work with individuals, either in group settings or on a one-to-one basis to build confidence in accessing services and to support them through testing. Through our work with African communities in Scotland we know that many people who are either HIV positive, or think they may be, are often afraid to access services for fear of discrimination. The African Health Project works with communities to help them understand the Scottish health system and with health practitioners to help them be more culturally sensitive. Black Africans are a group at higher risk of HIV and it is known that general practice is where many of them would expect to be offered a test. We have developed training in association with NHS Lothian’s Primary Care Facilitation Team that looks at understanding cultural issues and how to raise the topic of HIV testing with Africans. This is free in-practice interactive training for primary care staff across Scotland. Evaluations show that the training leads to a significant increase in confidence around having conversations about HIV testing with black African patients. Our goal is to make sure people at risk of HIV or Hepatitis C have access to services that can support them no matter what their background or health issues.
Our work in practice Sarah first came to Waverley Care with her support worker from GAMH (Glasgow Association of Mental Health) as she had recently been diagnosed with Hepatitis C. She was in a state of panic about her diagnosis. On top of this she had been
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suffering from severe depression and agoraphobia for several years. She was afraid to leave the house and had isolated herself. Moira at Waverley Care began to meet with Sarah and she was able to talk to her about Hepatitis C. They began to meet regularly and Moira started to accompany her to some hospital appointments and eventually she started treatment.
Sarah had a difficult time going through treatment and suffered many side effects. Moira suggested she join one of Waverley Care’s peer support groups as well as the Life Coaching programme which she did. For Sarah, just being able to speak to other people who understood what she was going through made a massive difference to her. Her self confidence and self esteem has increased dramatically.
156 people accessed the
Advice & Information Service in Lothian
124 people accessed the
Employment & Skills Service in Lothian, Fife and the Borders and there were 515 one-to-one sessions
100 GP practice staff received training from our African Health Project
Supporting people to live longer and healthier lives A diagnosis of HIV or Hepatitis C can bring with it many life changes both physically and mentally. However, people living with HIV or
services including our women’s group ,ISIS, and our Gay and Bisexual Men’s Project.
To promote healthy living, Waverley Care offers Peer Support, Befriending and Self Management services.
Peer support has been especially important for the young people who access our Children and Families Service. The groups allow the young people, who are affected by HIV or Hepatitis C, to speak to other young people who are going through similar experiences. Our play-schemes and residential trips allow the young people to spend some time away from home which often enables them to open up more and share their true fears and concerns.
Within our Self Management Service we offer an innovative Life Coaching Programme. This includes
Sometimes just going for a coffee with someone can be very therapeutic and can help reduce a service
Hepatitis C are now able to live a near normal life expectancy, if they access treatment and have a healthy lifestyle.
information and support on nutrition, exercise, how to best integrate medication regimes into daily life and learning to deal with difficult emotions such as fear, anger and depression. The programme is delivered in a supportive group environment where people can meet others who are going through similar experiences. This idea of talking with people who can truly understand what someone is going through and say ‘me too’ is key to a lot of Waverley Care’s work. It can help a person to feel less isolated and build confidence if they are speaking to someone who is dealing well with their diagnosis and treatment. It can also help to build supportive social networks. This work is carried out through our peer support
user’s feelings of isolation even if their life situation is very different. Our trained volunteer befrienders help talk through the things going on in someone’s life in an informal setting such as on a walk or in a coffee shop. They can attend appointments with people if they don’t feel confident going on their own, or spend time doing every day activities that help get someone out of their house. Our aim is to help people get back on their feet and have the skills and knowledge to live a longer and healthier life.
Our work in practice Joe is 48 years old and HIV positive. He resigned from his job following his diagnosis and suffering several strokes. Joe was struggling mentally and physically and he began to turn to drugs. His health quickly deteriorated – he could hardly sleep or eat and he became more depressed. He shut himself away from the world and became increasingly angry with everything. 16
Joe was referred to Waverley Care and started to participate in our one-to-one Life Coaching Programme. His support worker Paula helped him to look at his relationship with his family and they began to explore his behaviour patterns which stemmed from his negative thoughts. Joe was resistant to the work at the beginning but he stuck with the weekly sessions and attended every session of
Waverley Care’s seven week life coaching programme. The course turned Joe’s life around. He has now come off his antidepressant medication and is filled with a new found confidence and self-esteem. Joe has also visited his brothers and sisters for the first time since he was a teenager. Additionally, he has attended an employability course and plans to apply for jobs in social care to get back into work.
46 children and young people
were supported by the Children and Families Service
353 one-to-one sessions were held by
the Gay and Bisexual Men’s Peer Support Service in Lothian, Fife and the Borders There was a 31% increase in the confidence and self-esteem of individuals who completed a Life Coaching Programme
Helping to create a society where attitudes towards HIV and Hepatitis C are positive Stigma and the fear of telling people about an HIV or Hepatitis C diagnosis can be a major issue for many people affected by the conditions. This fear can prevent people who feel they might have contracted HIV or Hepatitis C from stepping forward to get tested. It can also stop people from opening up to friends and partners for fear of what they might say.
At Waverley Care we work to break down these barriers within society and paint a true picture of what life is like for people living with HIV or Hepatitis C. We do this in all our external work including public facing campaigns such as our
‘Always Hear’ campaign (www.hivalwayshear.org) and events during World AIDS Day and World Hepatitis Day. We also work with faith communities in Scotland through our Spiritual and Pastoral Care service. We encourage faith groups and religious leaders to put an end to the stigma and discrimination of HIV and Hepatitis C within faith communities and challenge the injustice of stigma within a wider society. For many years comedy has provided a way for us to raise awareness and break down stigma in an innovative way. We have enjoyed a unique 22 year partnership with Edinburgh Fringe venue, the Pleasance. For the month of August, our dedicated volunteers bucket shake and also raise awareness by promoting our laffoffstigma campaign (www.laffoffstigma.com), which has also been supported by many comedians over the years. We are also fortunate to be the beneficiary of two comedy benefits during each Fringe, the Pleasance’s own Tartan Ribbon Comedy Benefit and the Off the Kerb Comedy Gala.
Our work in practice Mary is 40 years old and lives in Edinburgh. She moved to Scotland from Malawi and because of her immigration status she has no access to benefits or housing. She had been a member of a church in Malawi and through Waverley Care’s Spiritual & Pastoral Care Coordinator,
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Marion, she was introduced to a similar church in Edinburgh. Marion had worked with the church, and knew they had a positive attitude to HIV. Mary very gradually became involved with the church community and after some time she felt confident enough to disclose her HIV status to them. By this point, people knew her as a member of their worshipping community and were supportive of her when she opened up about being HIV positive.
When Mary’s son died in Malawi, the church was a strong source of support to the extent that she felt able to hold a memorial event there. She invited friends from Waverley Care to join her. Waverley Care has worked closely with the congregation at Mary’s church to raise awareness of HIV.
Always Hear Campaign On World AIDS Day 2012 (1st December) we launched our anti-stigma campaign ‘Always Hear’. Funded by the Scottish Government, the campaign gives a voice to people living with HIV in Scotland using four films to capture the experiences of four individuals who are HIV positive.
HIV Myths. More detailed resources have also been produced for secondary schools (in association with Education Scotland) and churches across Scotland to reach out across society.
The campaign aims to raise awareness of HIV amongst the general public in Scotland, and put an end to the myths surrounding the condition which in turn, often lead to stigma and discrimination.
A dedicated website has been created for the campaign – www.hivalwayshear.org – where people can watch the films and download the information sheets and resources.
Supporting the films are HIV information sheets covering HIV Basics, HIV Statistics, HIV Stigma and The campaign is a key driving force in Waverley Care’s aim to help fight the stigma associated with HIV and to help those affected feel confident and comfortable to talk openly about their condition and their experiences. 19
Financial Summary Waverley Care (a company limited by guarantee) Summarised Financial Statements for the year ended 31 March 2013 2013
2012
ÂŁ
ÂŁ
Income
2,283,559
2,303,508
Expenditure
(2,397,838)
(2,156,975)
(Deficit)/Surplus on Activities for the Year
(48,797)
211,449
Movement in Pension Scheme
(97,000)
(63,000)
Surplus/(Deficit) on Activities for the Year excluding pension adjustments
(145,797)
148,449
Fixed Assets
297,493
336,221
Net Current Assets
876,196
984,892
Pension Liability
(53,000)
-
Total Assets Less Liabilities
1,120,689
1,321,113
General
76,576
174,323
Pension reserve
(53,000)
-
Designated
538,531
538,531
Restricted Funds
427,618
411,813
Capital Reserve
130,964
196,446
1,120,689
1,321,113
Income and Expenditure Account
Balance Sheet
Financed by Unrestricted Funds
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2012/13 Expenditure
ÂŁ
Charitable Expenditure
(2,257,932)
Costs of Generating Funds
(119,799)
Governance Costs
(20,107)
Total Expenditure
(2 ,397,838)
ÂŁ
2012/13 Income
1,919,193
Income from Charitable Activities
329,769
Voluntary Income
34,597
Investment Income
2,283,559
Total Income
A copy of the full accounts is available from finance@waverleycare.org
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Thank you It is only with the fantastic support of individuals, companies, organisations and charitable trusts, that we are able to offer our wide range of services and effectively raise awareness of HIV and Hepatitis C in Scotland. Our thanks go to everyone who has supported us during the past year including:
AbbVie Ltd
Hawick High School
St John’s Church
Alliance Scotland
Heriot-Watt University
St Peter’s, Linlithgow
Anstruther Philharmonic Choir
Integr8 Construction Limited
St Peter’s, Lutton Place
Appletree Trust
Janssen
Starbucks
Austentatious
J K Young Endowment Fund
Story
Axis-Shield
Jedburgh Grammar School
Stuart Goldsmith
BBC Children in Need Appeal
John Watson’s Trust
The Big Lottery Fund
Broughton Spurtle
Kiehls
Bruce Trust
Leith Academy
The Bohemians Lyric Opera Company
Cadenza
Lifescan Scotland Ltd
Cafe Habana
Lloyds Banking Group
Caldervale High School
Locanda de Gusti
The City of Edinburgh Council
Cards for Good Causes
Loud and Proud
The Cramond Association
Castle Park Golf Club
MAC AIDS Fund
The Crerar Hotels Trust
CC Blooms
MHD Law LLP
Colinton Parish Church
New Town Bar
The Diocese of Glasgow & Galloway
David O’Doherty
NHS Fife
Drummond Community High School
NHS Greater Glasgow & Clyde
Edinburgh Children’s Holiday Fund
NHS Lanarkshire
Edinburgh Concert Band
North Edinburgh Drug Advice Centre
The Martin Connell Charitable Trust
Off The Kerb Productions
The Moffat Charitable Trust
Open Mike Productions
The Monument Trust
Pappys
The Netherdale Trust
Paths for All
The Original Charity Christmas Card Shop
Edinburgh Gilbert and Sullivan Society Edinburgh Gay Mens Chorus Elizabeth Taylor AIDS Foundation EU BLOGS EUSA Festival City Theatres Trust Firrhill High School Fresh Air
NHS Highland NHS Lothian
Peter Moores Foundation Planet Bar Pleasance Theatre Trust Regent Bar
The Councils of East, Mid and West Lothian
The Edinburgh Playhouse The French Fancies The Henry Smith Charity The Luvvies The Mainhouse Charitable Trust
The Robertson Trust The Royal High School The Village
Rhod Gilbert
Tods Murray Llp Viiv Healthcare
Gilead Sciences Ltd
Saint Columbas Episcopal Church
Ward Family Charitable Trust
Gordon Fraser Charitable Trust
She’s Gottit
William Grant & Sons Limited
Grassroots Theatre Company
Sir James Miller Edinburgh Trust
World Duty Free
Gay Gordons George Watson’s College
And a big thanks to our many individual donors and volunteers
Grateful thanks to: Lesley Martin Photography Jim Mackintosh Photography Tim Griffiths Illustration & Digital Design
Waverley Care, 3 Mansfield Place, Edinburgh EH3 6NB www.waverleycare.org
Telephone: 0131 556 9710
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Scottish Charity No. SC036500 Company Limited by Guarantee No. 253043
Email: fund@waverleycare.org
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