Annual Review 2010-11

Supporting people living with HIV or Hepatitis C in Scotland

We ’re

g n i k a m

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positive

diff ere nce !

2010–2011

Directors Ms Shulah Allan mbe Ms Shelley Chan Dr Karin Froebel Overton Mr Andrew Marshall-Roberts Ms Pauline Scott Eunice Sinyemu (appointed 23 November 2010) The Right Reverend Brian Smith Dr Alison Richardson Mr David Taylor mbe Mr Brian West Mr Tom Wood qpm (Chair) Dr Helen Zealley obe

Patrons Anthony Alderson Christopher Bell Bob Chilcott Kate Copstick Sir Tom Farmer cbe kcsg Alexander McCall Smith cbe Sheena McDonald Shirley Manson Christopher Richardson

We pos can a itive ll m diff ake eren a ce!

2

Annual Review

Contents Welcome to Waverley Care

4

Our Vision and Mission

6-7

Messages from our Convenor and Director

6-7

Our Services

8

Our Partnerships

8

Key Achievements and Highlights

10

One-to-One Support

12

Peer Support

14

Practical Support

16

Information and Prevention

18

Financial Summary

20

Thank you

22

3

2010–2011

Welcome to Waverley Care Waverley Care is Scotland’s leading 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 across Scotland to support them and provide information and advice.

A diagnosis of HIV or Hepatitis C brings with it not only issues of poor health and a life of medication and hospital visits, but individuals also face social exclusion, stigma and discrimination.

At Waverley Care we believe that every person has the right to be cared for, loved and respected, whether they are HIV/Hep C positive or not. From facilitating peer support to counselling and help with job applications, our work aims to challenge HIV and Hep C stigma and discrimination, so that everyone can enjoy the same opportunities in life.

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Annual Review

Welcome

5

2010–2011

Our Vision Waverley Care’s vision is that everyone affected by HIV, AIDS or Hepatitis C in Scotland should receive the highest standards of care and support to lead independent and fulfilling lives.

Message from our Convenor Despite the financial difficulties facing the charitable sector across the UK at present, Waverley Care has enjoyed another productive year.

We have had many achievements, the key points of which are listed on page 10.

They include our success in winning the tender to provide HIV prevention services to NHS Highland, Argyll and Bute and our launch of a new Hep C Life Coaching Programme, building on our expertise in delivering HIV services.

During this year I was also pleased to welcome Eunice Sinyemu onto the Board of Trustees. Eunice brings with her a wealth of experience in the HIV sector.

Significant challenges remain, foremost of which is the ongoing review of services delivered at Milestone House but Waverley Care has always coped well with adapting and change. One significant forthcoming change is that in leadership which will happen following the imminent retirement of our Director of the last 17 years.

David Johnson has been an outstanding Director of Waverley Care. He has led the considerable growth and development of our services and his personal credibility within the sector has brought huge value to our organisation. Waverley Care has been fortunate to have had the services of David for so long.

In wishing him well for the future, the Board of Trustees welcomes Grant Sugden as our new Director. We are confident that he will build on David’s success.

On behalf of the Board of Trustees 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.

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Tom Wood convenor

Annual Review

Our Mission Our mission is to make a significant and meaningful difference to the lives of people affected by HIV, AIDS or Hepatitis C. We do this through the provision of high-quality supportive services, by campaigning for excellence in blood borne virus treatment and care, and for an end to the stigma and discrimination surrounding these conditions.

Message from our Director This is my last annual review after what will be 17 years in post. Like HIV, Waverley Care has come a long way in those years.

Treatments which keep the worst effects of HIV at bay are now well established.

Reflecting this, Milestone House, the UK’s first purpose built hospice for people living with HIV/AIDS, changed its role and became a respite unit in 2001. We developed new community services to support emerging communities affected

by HIV such as our African Health Project. We also moved into supporting people with Hepatitis C and developed work in Greater Glasgow, Lanarkshire, Fife, the Borders, the Highlands, Argyll and Bute.

David Johnson director

All of this has been characterised by a person-centred approach to care and support, sound professional practice and strong partnerships with all sectors.

We have been fortunate in attracting many dedicated supporters from all walks of life – musicians and composers, comedians and artists, politicians and journalists.

There are many achievements of which Waverley Care can be proud. These are varied and numerous but certainly include an ability to adapt to changing need; an ability to recruit and retain talented staff and volunteers; a willingness to reach out and try new things, especially in fundraising and awareness-raising.

Most of all, Waverley Care can be proud of the services it offers to children, adults and communities and the positive difference it makes to their lives.

On a personal level, working for Waverley Care has been a privilege and both life changing and life affirming. I am sure that my successor, Grant Sugden, will bring new and different skills which will support the organisation going forward and I wish him and Waverley Care every success.

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2010–2011

Our Services Below is a summary of the services we offer: Short-term Residential Intensive Support Support Services for all, including specialist services for • Africans • Children & Young People • Gay Men • People affected by Drug Misuse • Women Prevention & Awareness Raising

Community Projects & Support Services including • Advice and Information • Arts Project • Befriending / Buddying • Complementary Therapies • Counselling • Employment and Skills • Health Promotion • Life Coaching • Outreach and Support • Spiritual and Pastoral Care

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, Argyll and Bute, NHS Lanarkshire, NHS Lothian and The Scottish Government.

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Annual Review

l e e f ‘I

’ d e u l a v

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2010–2011

Key Achievements and Highlights Services • In May we launched Network Alba, the first Scottish support network for women living with HIV. • In June we launched a new Hepatitis C Life Coaching Programme.

• In November we launched Waverley Care Highland, Argyll and Bute. Our new office opened in Inverness.

Volunteers • Volunteers provided over 7,500 hours of support to our services and fundraising efforts (equivalent to over 4 full-time members of staff).

• Composer and conductor, Bob Chilcott, became a new patron.

Communication • BBC Children in Need’s appeal programme featured Waverley Care and a service user from our Children and Young People’s project.

• We were Edinburgh Evening News’ chosen charity for their Christmas Appeal.

Funding • We secured continued funding for our services from statutory funders (the NHS, local and national government).

• We met our fundraising target allowing us to continue offering those services not supported by statutory funders.

• BBC3 screened the ‘Off the Kerb Comedy Gala’ in aid of Waverley Care which took place in August. It raised over £50,000.

• Our 21st birthday Sing a New Song carol competition attracted 129 entries from across the UK and culminated in a concert in November premiering the top six carols and announcing the winner. It raised over £7,000.

Events • In June Edinburgh City Council hosted a Civic Reception to mark our 21st birthday.

• A Waverley Care representative attended the 18th International AIDS Conference in Vienna in July to share with others our work in Scotland and Malawi and learn from HIV support and prevention work in other countries.

• We held two ethical debates: ‘Sexual Health – whose responsibility is it?’ in May with Professor Paul Flowers of Glasgow Caledonian University and ‘Young People, Sex and HIV’ in October facilitated by Dona Milne, public health specialist.

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Annual Review

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2010–2011

One-to-One Support One-to-one support is offered by all of our support workers. It gives people a time and space that is theirs which can be specifically focused on them and their needs.

One-to-one support can sometimes just be a single session where a service user’s needs can be assessed and a referral made to other specialist services for support. For other people a series of sessions is needed to look at one or a number of issues. Topics covered can include coming to terms with a diagnosis, making sense of emotions, support with disclosing their medical condition to friends and family, getting back into employment, sexuality or sexual health.

As with all Waverley Care’s services, our one-to-one support offers a nonjudgmental, confidential environment where people can talk openly about living with HIV or Hep C. In a one-to-one environment, as opposed to group sessions, a support worker can build a firmer, more trusting relationship where the service user can talk honestly and not feel intimidated as they may do in a group or clinical setting.

With no distractions, it can also be easier for the support worker to simply listen uninterrupted or identify the key issues that need to be addressed and help the service user devise an action plan to remedy or improve their situation.

In a less formal way, our Buddy Service offers longer-term one-to-one support by providing someone to listen, have a coffee or attend appointments with. It continues support in the form of ‘time that is theirs’ and time with someone who cares about their wellbeing.

Hayley is 35 years old. She was referred for one-to-one Hep C life coaching when she lost custody of her son due to her poor mental and physical health, which was exacerbated by the daily use of drugs and alcohol.

Hayley’s engagement with the service was initially sporadic with her constantly missing appointments and not returning phone calls. But after perseverance by support worker Paula, Hayley began to attend appointments and work to get her life back together to regain custody of her son.

Within the confidential and trusting one-to-one environment, Paula and Hayley worked on the childhood issues that led to Hayley using drugs and alcohol as a means of coping with the past and anaesthetising her emotions. They worked on developing coping strategies for her anxiety and depression and her selfdestructive behaviour.

After working with Paula for eight months, Hayley is now drug free, has regained custody of her son, has improved confidence and self-esteem and is preparing to begin Hepatitis C treatment. She is also applying to college in a bid to create a positive future for herself. Hayley remarked “I’m actually beginning to like myself for the first time in my life”.

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Annual Review

“I’ve someone to talk to”

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2010–2011

Peer Support Speaking to someone who understands and can say ‘me too’ is an invaluable form of support for people, especially those who are newly diagnosed.

Peer support is offered by many of our services including Network Alba (our women’s network), our Gay Men’s Project and our Children and Young People’s Project. Introducing someone living with HIV or Hep C to someone with the same medical condition allows them to receive a unique form of support. People are inspired by others who are living healthy and fulfilling lives with a blood borne virus or are comforted by speaking to others who have similar experiences.

Living with HIV or Hep C often brings with it feelings of isolation and fear and experiences of rejection. Peer support provides the knowledge that they are not alone and that there is someone else who knows how they feel. Role models show that life goes on after diagnosis.

In the past year, peer support has been shown to provide great improvements in people with low self-esteem and poor mental health, with people identifying coping mechanisms that would be useful in their own lives. One service user, after using peer support, was able to challenge his own fears declaring that ‘if they can do it, so can I.’ The outcomes of the work have included building confidence levels, reducing social isolation and gaining more knowledge of HIV or Hep C. Amongst our children’s work peer support crosses the boundaries of age with 16 year olds supporting 11 year olds with issues such as bereavement and adherence to medication.

Emma is 15 years old and lives in Edinburgh. She was born HIV positive and has known about her condition since she was 10 years old.

Emma keeps in good health most of the time but, in recent years, she was becoming increasingly anxious and depressed. She has never told any of her friends about her HIV status. She is afraid that, if they find out about her condition, they will reject her or will start to bully her.

Last year, Emma’s doctor referred her to Waverley Care and Emma joined four other young people for a residential weekend in Perthshire. Her initial fears about the weekend were soon put to rest as, for the first time, she realised that she wasn’t on her own. The group had a lot of fun over the two days but they talked a lot too – long into the night – about how they coped with their treatments and the side effects; about what it’s like to feel you can’t be open about what’s going on in your life; about the challenges for them when it comes to relationships. Emma exchanged email addresses with her new friends and is already looking forward to the next opportunity to spend time together with people who truly understand.

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Annual Review

“I meet who un people derstand ”

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2010–2011

Practical Support Alongside emotional support we offer a wide range of practical support, from cookery and gardening skills, to CV writing and interview skills.

Our Employment and Skills Project is run under the ‘Positive Scotland’ banner which is a joint project with Terrence Higgins Trust and is funded by the Big Lottery. Some people who use the service have been out of work or training for a long period of time and don’t know where to start in terms of achieving a regular occupation. Others are in employment but have work-related issues such as disclosure around their HIV or Hep C status or are experiencing discrimination.

For those who don’t know where to start, our employment and skills worker helps them to create a training and employment plan. He talks them through what their hopes and experiences are and trains them on CV writing and interview skills.

Within other projects, practical support is provided through healthy living workshops which focus on diet and lifestyle as a means of maintaining physical health and assisting in effectiveness of treatment. Workshops include demonstrations of how to make healthy food choices and cook healthy meals. We also run groups that encourage exercise such as our walking group.

Our Community Outreach and Support Project helps service users with the practical tasks of completing housing and benefit forms and assisting with budgeting. For some service users experiencing extreme isolation and withdrawal from society, staff will accompany them on supermarket shopping trips and to hospital appointments.

The outcomes of our practical support are that service users become involved in their communities, live a healthy lifestyle and are empowered to live independently and be fully engaged members of society.

Jimmy is 32 and is living with HIV. He contacted our Employment and Skills Project when feeling apprehensive about looking for work.

Jimmy was considering applying for a job in the care field. He had years of experience caring for family members who were unwell and, in one case, terminally ill. Despite such strong experience, Jimmy lacked confidence in applying for care roles as his experience was not formalised.

By working with our employment and skills worker, Rik, Jimmy redrafted his CV. He applied for a care job, and when he was told that he would be interviewed, Rik assisted him by discussing likely questions and how to answer them.

Jimmy was delighted when they offered him the job and he readily accepted it.

Finally Rik eased Jimmy’s concerns about starting work and being HIV positive by discussing issues such as when, if ever, to disclose his status, and how best to approach this. Rik also made him aware of his rights under the Data Protection Act and the Equality Bill. Jimmy is very happy in his new job and delighted to be back in work.

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Annual Review

“I’m ba ck in Educati on”

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2010–2011

Information & Prevention Sir Francis Bacon’s well know quote ‘knowledge is power’ is a motto that staff at Waverley Care work to. We aim to empower people who use our services with knowledge.

Our Advice and Information Project provides a wide range of information about a variety of topics, from treatment and side effects to benefits and housing information. Many service users feel overwhelmed by a HIV/Hep C diagnosis and either don’t absorb the information a clinician may give them or feel intimidated by the expertise of a consultant and not confident to ask questions. We aim to provide them with information in a relaxed setting, a manageable format and understandable language. They can then ask any questions they have and feel more confident and empowered to manage their condition.

Our African Health Project focuses on providing information and prevention messages in a culturally relevant and sensitive manner. We work alongside community organisations such as churches and youth groups and work in settings as varied as a hairdressing salon or a kitchen at a party, through to a conference hall full of African church leaders. The information we provide includes dispelling myths around HIV transmission, encouraging faith in medicine alongside a spiritual faith, and raising awareness of HIV testing and the health benefits of early diagnosis.

We ensure that we not only provide information but that we provide it in a sensitive manner, in a relaxed environment and in an understandable way.

Martin is a 34 year old African who is an asylum seeker living in Glasgow.

He heard about Waverley Care’s African Health Project volunteer training course through the Scottish Refugee Council.

As Martin was unable to work due to his immigration status, he felt volunteer training would be a worthwhile activity, providing skills and expertise that would help with finding a job when he received leave to remain in the UK. The two day course provided a range of information, including up-to-date details on HIV transmission, testing and prevention. The training included where to get tested and what a test involved which, in turn, gave Martin the confidence and information to take an HIV test himself.

Martin received a lot of support from the Waverley Care workers both before and after his test and the experience has encouraged Martin to speak openly and with first-hand experience of testing. He now encourages others to test and know their HIV status.

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Annual Review

“I’ve th informa e tion I need to help my self ”

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2010–2011

Financial Summary Waverley Care (a company limited by guarantee) Summarised Consolidated Financial Statements For the year ended 31 March 2011

2011

2010

£

£

2,169,588

2,034,579

(1,768,938)

(1,803,209)

400,650

231,370

(301,000)

(30,000)

99,650

201,370

Fixed Assets

373,694

496,526

Net Current Assets

863,011

768,846

Pension Liability

(530,000)

Income and Expenditure Account Income Expenditure Surplus on Activities for the Year Movement in Pension Scheme urplus on Activities for the Year S excluding pension adjustments

Balance Sheet

Total Assets Less Liabilities

1,236,705

735,372

Financed by Unrestricted Funds

General

129,948

187,245

Pension reserve

(530,000)

Designated

504,521

495,869

Restricted Funds

340,309

184,680

Capital Reserve

261,927

397,578

1,236,705

735,372

A copy of the full accounts is available from finance@waverleycare.org

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Annual Review

2010/11 Income

Income from Charitable Activities Voluntary Income Investment Income Total Income

ÂŁ 1,848,450 295,211 25,927 2,169,588

2010/11 Expenditure

Charitable Expenditure

ÂŁ 1,805,060

Costs of Generating Funds

80,929

Governance Costs

17,918

Total Expenditure

1,903,907

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2010–2011

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: 606 Club

EU Footlights

Pappys

Abbott Laboratories Limited

EUSA

Paths For All

Annie Lennox Foundation

EUSA LGBT Action Group

People’s Postcode Trust

Appletree Trust

Falling Cutlery Theatre Company

Peter Moores Foundation

Filmhouse

Positive Partners

BBC Children in Need Appeal

Firrhill High School

Priscillas

Bearscots

Fresh Air

Royal London

George Heriot’s School

Scottish Business Achievement Award Trust

Austin & Hope Pilkington Trust

Big Lottery Fund British Red Cross Bruce Trust Cadenza Café Habana

Gilead Sciences Ltd Glasgow and Galloway Diocese of the Scottish Episcopal Church

CC Blooms

Gordon Fraser Charitable Trust

Chiene and Tait

Grassroots Theatre Company

Children’s HIV Association

Greggs Trust

Church of Scotland HIV Programme

Holyrood Amateur Theatrical Society

Pleasance Theatre Trust

Simpson & Marwick Solicitors St Augustine’s High School St Columba’s by the Castle St Peter’s Episcopal Church Starbucks The Bohemians Lyric Opera Company The Henry Smith Charity

J K Young Endowment Fund

The Hope Trust

John Menzies plc

The Luvvies

LankellyChase Foundation

The Mainhouse Charitable Trust

Lloyds Banking Group

The Martin Connell Charitable Trust

Long Term Conditions Alliance Scotland

The Moffat Charitable Trust

MAC AIDS Fund

The Robertson Trust

Mary Heap Charitable Trust

The Stafford Trust

Merck Sharp & Dohme

The Village

Mowat Hall Dick

Viiv Healthcare

Edinburgh Presbytery of the Church of Scotland

New Town Bar

Voluntary Action Fund

Off The Kerb Productions

Widowers’ Children’s Home Trust

EU BLOGS

Open Mike Productions

William Grant & Sons Limited

Craft Theatre Company Cruden Foundation Limited Edinburgh Children’s Holiday Fund Edinburgh Diocese of the Scottish Episcopal Church Edinburgh Evening News Edinburgh Gay Men’s Chorus Edinburgh Students’ Charities Appeal

The Netherdale Trust

And a big thanks to our many individual donors and volunteers.

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Annual Review

“Thank y ou”

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Waverley Care, 3 Mansfield Place, Edinburgh EH3 6NB

www.waverleycare.org

Tel: 0131 556 9710

Find us on Facebook

Email: fund@waverleycare.org

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Scottish Charity No. SC036500 Company Limited by Guarantee No. 253043

Grateful thanks to: Kelly Falconer for her communications input.

and Andy McIntosh for donating the photography.

for design.

for supporting the printing of this Annual Review.