Supporting Waverley Care by Waverley Care

Supporting Waverley Care

Supporting people living with HIV or Hepatitisâ&#x20AC;ŻC in Scotland

Who we are Waverley Care is a unique and effective Scottish charity which changes the lives of some of the most vulnerable members of society – people living with HIV and Hepatitis C. For 25 years we have helped people with these conditions maximise their physical and emotional health and live full and productive lives. Waverley Care works at a community level to educate, nurture, challenge stigma and build confidence. By doing so we empower people, prevent new infection and reduce the burden on NHS services. We are a well-trusted organisation with a proven track record. We have skilled, committed and experienced staff, as well as a large number of dedicated volunteers who enable us to broaden the reach of our services.

Our vision Waverley Care’s vision is for a stigma-free Scotland where everyone living with HIV or Hepatitis C is aware, informed, getting the help they need and able to play a full and active part in their community.

Each year we support around 2,000

people across

Scotland

Where we work Waverley Care initially provided services solely in Edinburgh, but has now expanded to Glasgow, Inverness and Fife and works across eight health board areas. As well as projects specific to each location, we have staff who work nationally across Scotland. We also encourage local community groups to work with us to raise awareness and help in the prevention of HIV and Hepatitis C.

Our awards and accreditation We have a growing presence and profile which reflects our integrity and ability to deliver results: In March 2013, our Gay Men’s Peer Support Project won a WISHH1 Award for Best Practice. I n June 2012, our Children & Families Project won the Scottish Social Services Council’s Care Accolade in the Children & Young People’s category. In addition to awards, our Life Coaching course is now SQA accredited. This means that it can be offered to front line staff in NHS Boards, enabling them to deliver training to service users. We have already delivered this training to staff in Tayside.

(left) Staff receiving the WISHH award. (right) Staff receiving the Care Accolade award.

Wellbeing in Sexual Health and HIV – NHS Health Scotland

The need People living with HIV or Hepatitis C are described by The Scottish Government as “the most vulnerable members of our society”1. The viruses have a devastating impact, both at the point of diagnosis and in day to day life. As well as concerns over health and long-term prognosis, a diagnosis of HIV or Hepatitis C brings with it an immediate fear of people finding out. Stigma has been an issue for people living with HIV from the earliest infections in the late 1980s. This fear can trap adults and children in isolation, with a detrimental effect on self-esteem and mental health. Fear of stigma can also prevent people from taking a test to find out their status, meaning they are at risk of passing the virus on. Waverley Care works with all groups living with HIV or Hepatitis C and has responded to changing demographics by developing services which meet the needs of specific groups. For example: Africans living with HIV – the majority of our African service users are refugees or asylum seekers. Many have experienced violence and trauma, prompting their arrival in the UK. An HIV diagnosis is just one aspect of a complex situation which may also involve uncertainty over immigration status, separation from family and lack of income, leading to people living in extreme poverty. Gay and bisexual men – Waverley Care has a long history of supporting gay and bisexual men – a group that continues to be disproportionally affected by HIV. Stigma and the fear of telling friends and family about a diagnosis can be a major issue for those with the condition. Waverley Care offers a place for those affected to meet others who are going through similar experiences and meet people who are coping well with their diagnosis. People living with Hepatitis C – More than 90% of Hepatitis C infection is acquired via injecting drug use and the concentration of infection in Scotland is in the urban areas of high deprivation and poverty. Hepatitis C can be successfully treated but those living with it are often very vulnerable and need in-depth support both to embark on and sustain treatments. People in rural communities – our Inverness office provides support to people who are particularly isolated as they are living in remote parts of Scotland. Children and Young People – Stigma impacts on children who are themselves HIV positive or living with parents who have HIV or Hepatitis C. The need for secrecy is a heavy burden for children and this can have a profound impact on self-esteem and result in poor behaviour or low achievement at school.

The Scottish Government’s Sexual Health and Blood Borne Virus Framework 2011-2015

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

The difference we make Waverley Care’s story over the past 25 years is, in many ways, the story of HIV and Hepatitis C in Scotland. We offer support to people at whatever stage they find themselves on their journey since diagnosis. We are there for people of all ages, sexuality, nationality or social background. We bring together the very diverse groups of people who are affected by HIV or Hepatitis C, encouraging them to share what they have in common, rather than focusing on their differences. Our high level outcomes, cited in our strategic plan (2013-2016) reflect the outcomes contained in The Scottish Government’s Sexual Health and Blood Borne Virus Framework 2011-2015: • Reducing transmission of blood borne viruses • Reducing health inequalities • Improving the quality of life of people affected by blood borne viruses • Challenging stigma and discrimination The wide-ranging work of Waverley Care has a profound and lasting impact on people’s lives, with the following outcomes: • People are less socially isolated and have a greater sense of self-worth • Their mental health improves • They are better informed about and better able to manage their health condition • They are more likely to embark on and adhere to treatments for HIV and Hepatitis C • They spend less time in hospital • They are less likely to live in poverty as a result of having a better understanding of and access to benefits

In addition, Waverley Care’s work in Scotland has a broader impact on society: • We reduce the overall cost to the NHS by helping people to stay out of hospital. This can be in a very direct way through the provision of residential care at Waverley Care Milestone or indirectly by boosting people’s overall health and wellbeing. • We help to reduce the number of people living with HIV or Hepatitis C by encouraging testing and raising awareness. This also has a financial benefit, in that each HIV infection prevented will save between £280,000 and £360,000 in treatment costs over a lifetime.1 • There are significant public health benefits in terms of people knowing their Hepatitis C status. Treatment can enable people to clear the Hepatitis C virus in up to 80% of cases, meaning a reduction in onward transmission. • Asylum seekers are better integrated into Scottish society, to the overall benefit of the individuals themselves and their local communities. • People living with HIV or Hepatitis C are active members of their communities, making a contribution to society.

Source: Health Protection Agency

The work we do For many people Waverley Care is the only agency where they feel safe: stigma means that they often feel unable to access other services. We offer a very wide range of services and list some of the key ones here.

Physical Health Practical everyday skills – Our life coaching programme provides people living with a blood borne virus with everyday skills and techniques with which to manage their physical, mental and emotional health. This seven session training course is achieving excellent results and has recently been accredited by the Scottish Qualifications Authority (SQA). This will enable training to be delivered on our behalf in other locations, extending the reach of the programme. Reducing hospital stays – Our residential unit at Waverley Care Milestone, which has been recently extended, aims to reduce the likelihood of people being admitted to hospital and, when someone does need a stay in hospital, it allows them to be discharged sooner. Increasing fitness – Waverley Care’s community-based services encourage people to live healthy lives. Our walking group, for example, helps people improve their overall levels of fitness, while our workshops give people an understanding of nutrition and basic cooking skills. Preventing mother to baby transmission – Our mums and tots groups provide free formula for HIV positive mothers with babies under one year of age. As breastfeeding is a route of transmission of HIV, this project helps to ensure the future health of the child.

Emotional Wellbeing As a result of stigma, supporting people’s emotional wellbeing is a key aspect of all our services throughout Scotland. Reducing isolation – Our peer support programme, for example, matches service users with trained volunteers who are living with HIV or Hepatitis C. The opportunity to talk to someone who has first-hand experience reduces isolation and lessens anxiety. Developing coping skills – Our successful life coaching programme, introduced in the previous section, is also instrumental in helping people manage their emotional wellbeing. Stability for children – Children who are themselves HIV positive or who are living in families affected by HIV or Hepatitis C welcome the opportunity to meet others in a similar situation. Consistent support from adults also goes a long way towards providing stability in lives which can otherwise be chaotic. Using the arts – Many of our support groups use the arts as a focus, enabling people to learn new skills and explore creativity as a way of expressing emotion.

Spiritual Support We are unique amongst community-based HIV or Hepatitis C organisations in our employment of a Spiritual & Pastoral Care Co-ordinator. Providing a sense of peace – People living with a chronic condition often want to explore issues of faith and spirituality and our Co-ordinator can support them through this journey. End of life care – We have seen a rise in the number of premature deaths amongst service users, particularly amongst those who have been living with HIV for many years. Waverley Care Milestone provides end of life care and our spiritual and pastoral care is an important aspect of this. Working with the churches – We also recognise the importance of the churches in the African community and are working alongside pastors to raise awareness of HIV, encourage testing and provide pastoral support.

Practical Help Reducing poverty –There are very close links between poverty and HIV or Hepatitis C. Through our information and advice service, we support people to maximise their income and assist them with applications for housing appropriate to their needs. Welfare rights advice – Both HIV and Hepatitis C are variable health conditions, resulting in people being assessed as fit for work, even though they are struggling. This leads to a reduction in their state benefits, with a detrimental impact on emotional and physical health. Our role is to help them understand the decisions that are made and, where appropriate, to support them in the appeal process. Immigration issues – Many asylum seekers are going through the complex process of seeking leave to remain in the UK. With no recourse to public funds, many find themselves in situations of dire need. As well as helping them to understand the immigration system, we are able to provide small emergency payments where needs are immediate and short-term. Back to work – Many of our service users are keen to seek employment or training but lack the confidence and skills to do so. They are also unsure how to manage disclosure of their status to employers. We provide one to one sessions and group support to help build confidence, develop new skills and address issues of disclosure. Employability workshops provide additional skills such as interview techniques. Our service users often go on to volunteer within Waverley Care and many are helped onward to further education courses which provide recognised qualifications.

Preventing onward transmission Both HIV and Hepatitis C are preventable and getting this message across is an important part of our work. Hepatitis C Training – We offer formalised education and training for those at risk of Hepatitis C and for volunteers and professionals working with high-risk groups. Practical prevention – We offer free condoms, including a condoms by post scheme in the Highlands, and Argyll & Bute. Community involvement – We distribute information and condoms in a wide variety of community settings within the African community, where there may be a reluctance to attend sexual health clinics as a result of stigma. Testing – We encourage people who may be at risk to get tested, recognising that early treatment results in better outcomes. We are able to offer limited testing facilities ourselves, providing dry blood spot testing for HIV, Hepatitis C and Hepatitis B.

Challenging stigma In many ways it is stigma that creates the complexities around HIV or Hepatitis C. As well as supporting people to live with a stigmatised condition, we challenge stigma through campaigning. Always Hear – this is a Waverley Care campaign funded by the Scottish Government. Running between 2012 and 2015, Always Hear works on the basis that the best way to understand what it is like to live with HIV in Scotland is to hear from the people who live with it every day. The campaign is therefore based around four films of very different people who are living with HIV in Scotland. Supporting the films is a resource pack providing factual information about HIV. Targeted resources have also been produced for young people and for churches. In 2013 every secondary school in Scotland received an Always Hear HIV Fact Pack containing a DVD and Curriculum for Excellence resources. Always Hear has been well received by schools and favourably reported on in the media. #laffoffstigma – this campaign encourages visitors to the Edinburgh Festival Fringe to think about HIV and Hepatitis C stigma and to challenge it. Its link with comedy ties in with Waverley Care’s association with comedy during the period of the Fringe.

Why your help is essential By supporting Waverley Care, you can help us change people’s lives for the better. You can help us meet someone in their vulnerability and move them towards a more confident future, better equipped to cope with the physical and emotional challenges of living with a stigmatised condition. At Waverley Care, we have opportunities to support our work at a variety of levels of engagement. For example: • Funding one or more aspects of our children and families project for one year, supporting more than 70 children to receive consistent adult support and meet others in a similar situation. • Funding us to take a group of service users away on a residential weekend, providing time away from stressful home situations and opportunities for intensive support, as well as relaxation and the chance to meet others. • Supporting the cost of training for peer support volunteers, ensuring that those who are living with HIV or Hepatitis C can meet others who have first-hand experience.

Peter, until a few months ago, at the age of 20, had never met another young person living with HIV. As a result of HIV stigma, Peter feels he leads a double life, making no mention of his condition to friends or members of his church community. Peter has already started to reap the benefits of meeting other young people and of being in an environment where he can speak openly and address the concerns he has about his future as a person living with HIV.

Lorna is a 38-year-old woman with a history of homelessness and long-term substance abuse. She embarked on Hepatitis C treatment but had to abandon it as a result of complex health needs. She became extremely depressed and wouldn’t leave the house. She was referred to Waverley Care and, as a result of oneto-one support and attendance at our Life Coaching Programme, Lorna is now about to start treatment for the second time. This time, she knows that Waverley Care will be there to support her and is optimistic about a future clear of Hepatitis C. Lorna and Peter are two people who are already benefiting from our services, but there are many more that we would like to reach and whose lives we can turn around with your help.

We welcome the opportunity to work with our supporters and identify particular areas of interest. We can arrange meetings with service delivery staff to ensure a good understanding of how your money will be used. You can get in touch with us by emailing fund@waverleycare.org or by calling us on 0131 556 9710.

Registered office: 3 Mansfield Place Edinburgh EH3 6NB Tel: 0131 556 9710 Email: info@waverleycare.org

www.waverleycare.org Front cover image: Members of Young Pleasance

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