Supporting people living with HIV & Hepatitis C in Scotland February 2009
Welcome to the February 2009 edition of Positive Interest. World AIDS Day (December 1st) is always an important focus of the year for Waverley Care and this World AIDS Day was no exception. Turn to page 6 to find out more about what went on during the day. As the new year gets underway we’re continuing our mission every day of the year to support adults and children living with HIV in Scotland and to raise awareness of the condition. The fundraising team has been busy organising events for 2009. In our last issue of Positive Interest we highlighted research about the physical and mental benefits of singing and we’re now delighted to offer two excellent vocal workouts in early 2009. In February, in Edinburgh, Bob Chilcott will conduct his own Little Jazz Mass and some brand new jazz arrangements of folk songs and in March, John Rutter will conduct our second ever “Come and Sing” event in Glasgow. We consider it quite a coup to have two of the UK’s best known choral composers working with us within the space of 6 weeks! Find out more on page 7.
In this issue… Patron Profile Christopher Bell tells us more about himself
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Volunteering Did you know we offer complementary therapies?
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The reality of HIV treatment
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Focus on: Spiritual and Pastoral Care
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Introducing... Maro Our Health Promotion Worker tells us more about herself and her work
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World AIDS Day 08
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Fundraising Diary
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Thank you for your support and happy reading!
Waverley Care, Old Coates House, 32 Manor Place, Edinburgh EH3 7EB Telephone: 0131 226 2206 Email: fund@waverleycare.org www.waverleycare.org Scottish Charity No. SC036500 Company Limited by Guarantee No. 253043
Come & Sing worksho with
Wellington Church
Profile of a Patron
Southpark Avenue Glasgow
Saturday 28 March
Tickets: £13.50
11am - 5pm
(£9.50 concession)
Renowned and popular conductor Christopher Bell, has been a patron of Waverley Care for 16 years. Christopher kindly took a few minutes out of his busy schedule to answer some of our questions.
For further information and registration forms visit www.waverleycare.org or contact: Email: fund@waverleycare.org or call: 0131 226 2206
What is the most enjoyable Waverley Care event you have conducted?
The James Farrer Singers Saturday 2nd May 7.30pm St Peter’s Church Hall, Lutton Place, Edinburgh Tickets: £7 from 0131 226 2206 This group of singers have entertained all over the world for over 20 years - both live and on radio and television. Expect any and every kind of music from them, sung in a casual, pleasant and professional manner, and accompanied by their electronic ‘orchestra’. All proceeds of this event go to Waverley Care.
Edinburgh Marathon Sunday 31st May 09 Raise money for people living with HIV in Scotland. Do it all yourself or share it with friends. Full and Team Relay places available. Email: fund@waverleycare.org or call: 0131 226 2206
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Michael Richardson and I did the 24 hour Gilbert and Sullivan performances in the Festival Theatre and those were great fun to do. Recently I LOVED the Armed Man in the Queens Hall. Quite honestly, I have a good time at all these events if I know that all the efforts are going to raise money.
What message would you give to a young person about HIV? My concern is that with the latest medical advances and, with less media coverage on HIV, there is the thought that the condition might have been cured. HIV is still very much an issue though and still on the increase. I would say take HIV and all aspects of your sexual health seriously.
What is your favourite way to spend a day? Going to an art exhibition. I love looking at the results of an imaginative mind, seeing what it can create. My most recent thrill was going to see the Francis Bacon exhibition in London. I love it so much, that when I finished it, I went back to the beginning and saw it all again.
What are you currently reading? I’m ashamed to say that any spare time I have is devoted to reading music scores and not books. I have a ‘must look at’ pile of music and I enjoy making a cup of tea and sitting down and reading through music I don’t know to see if it will fit with some of my choirs.
Who inspires you? Anyone who has a dream and follows it through. That’s not meant to be over sentimental. Rather the reverse – from the young singers I meet who want to make it in the singing world, to the great artists I have worked with who have done exactly that. It’s a great inspiration at both ends of the spectrum.
Volunteering Volunteers who offer complementary therapies to Waverley Care have been a tremendous benefit to the people that we support.
experienced reduced side effects associated with HIV treatments. We have six volunteers who offer complementary therapies free of charge to people living with HIV. The therapies include Reiki, reflexology, electrocrystal therapy and, most recently, hot stones massage. For some of the volunteers providing treatments is a hobby but for others it is their main occupation and we are very grateful that they donate their time in evenings and weekends on top of their full time jobs. Here is what some of our service users have to say:
A restful massage can bring relief from stress
Alongside the many forms of support that we offer such as counselling, residential care and peer support, our service users also benefit from complementary therapies to help them through stressful and difficult times. The treatments allow people living with HIV to improve their quality of life, in terms of helping them cope better with stress, improving their mood and giving them a better sense of control. Users of this service have also
“Having a massage makes me feel more up beat about myself and my life. I feel I am able to cope and that I have energy to tackle life.” “For years I have never been able to have a good night’s sleep, until I started to have a massage. I feel so rested and peaceful afterwards, and most of all my head feels clear.” A big thank you to Jamie, Ian, Gordon, John, Lorraine and Jackie for offering your time, energy and experience.
The reality of HIV Treatments Developments in antiretroviral drugs to treat HIV have been a real ‘life saver’ to people living with HIV; but the side effects of the treatments can be extreme and learning to live with them as difficult as living with HIV itself. Common side effects include nausea, diarrhoea and fatigue but our service users have also spoken of extremely sore pins and needles, muscle aches and even sensory overload where a trip to the hairdressers is impossible because of the smells, music and talking. One of the most difficult things is when side effects are obvious to other people. Questions such as “Why are your eyes yellow?” or “How are your legs so thin?” mean having to have a story ready if someone doesn’t want to disclose their HIV status.
The side effect lipodystrophy – loss of fat from the face, arms, legs and bottom - can give an appearance of sunken eyes or humped back and people find that clothes no longer fit. Alongside the expense of buying new clothes, coming to terms with a constantly changing body shape can be a difficult emotional experience. Pharmaceutical companies are investing millions of pounds investigating new treatments with fewer side effects but in the meantime Waverley Care is there to support people living through the physical and emotional impact of treatments.
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Focus on: Spiritual and Pastoral Care Waverley Care offers pastoral and spiritual support not only to those living with HIV but also to their loved ones and carers who are often equally affected. The service has evolved over the years as the needs of our service users have changed and these changes have been observed first hand by Spiritual and Pastoral Care Co-ordinator Marion Chatterley.
Although an ordained minister of the Scottish Episcopal Church, Marion offers non-judgmental pastoral support. She is clear that whether or not someone has a faith of their own does not alter their need for unconditional love and support from someone with a relationship with their own God. Many service users find it useful to gain support from someone who is not involved in their health or social care. Conversations can cover anything from everyday topics such as cooking or gardening through to broad religious issues. Waverley Care feels it is important that someone with a firm understanding of faith is available to offer support. An HIV diagnosis makes people aware of their own mortality and often leads them to explore their own religious belief system. In addition to one-to-one and work with families, Marion works with religious leaders and faith groups in Scotland. Many people have negative experiences of faith communities discriminating against people living with HIV because of what they see as lifestyle choices. Marion’s role involves raising awareness and understanding of HIV amongst faith communities and challenging discrimination. She has spoken at the General Assembly of the Church of Scotland and at the Anglican Lambeth Conference. 4 Positive Interest
In particular Marion’s faith group work focuses on working with churches to encourage early testing and highlight the benefits of treatment. Much of this is work with African faith communities.
Paul Paul is an African service user and an asylum seeker. He had to flee his home country after voicing political opinions against the government. A few months after his arrival in Scotland he became ill and tested positive for HIV. The difficulties of living with the condition were compounded by being in a foreign country and away from the familiarity of his home church. Paul’s faith is very important to him and, when Marion met him, the thing he wanted most was a bible as he couldn’t afford one and was ashamed to ask a church for one. In Marion, Paul found someone with whom he could pray about his HIV status and the things that were important to him that he had been keeping secret from any other pastoral relationship. Paul is now coping well with his HIV and is taking part in voluntary work. His health is stable and he is now part of a church congregation here in Scotland. We are very grateful to the major funders of this project — The Diocese of Glasgow and Galloway, The Diocese of Edinburgh, The Church of Scotland Edinburgh Presbytery, The Church of Scotland HIV/ AIDS Project and Lloyds TSB Foundation for Scotland.
Introducing... Maro
Maro McNab is Waverley Care’s Health Promotion Worker and facilitates ISIS, our women’s support group.
Her health promotion work helps people living with HIV to live as healthy a life as possible focusing on such issues as healthy eating, exercise and physical fitness and stress relief. ISIS provides peer support and focuses on using the arts to explore different issues. Why did you choose to work for Waverley Care? I value the opportunities that Waverley Care gives me to both be creative and work with people in a range of different contexts; whether it be going for a stomp in the hills with the walking group, getting stuck in to arts projects with ISIS or doing personal development work with people either on a one-to-one basis or with groups through our new Positive Self Management Programme. What did you do before you worked at Waverley Care? I was living in Sierra Leone where I worked both at a centre for women living with HIV and with a local
district council. My role involved doing training and development with community-based organisations on HIV prevention and community-based care and support. What has been the most memorable moment for you at Waverley Care? Learning to shake my hips Bollywood style with about sixty other women at Waverley Care’s annual celebration of International Women’s Day – it was great fun, but I was completely useless at it, mostly because I couldn’t stop laughing. What was the last arts event you attended? I went to see the Scottish Ballet’s Sleeping Beauty last night and am looking forward to catching Slumdog Millionaire at the cinema. What is your favourite food & drink? I love Middle Eastern food and like nothing better than a good cup of tea – I have about ten different kinds in my cupboard. Name three things you’d like to do before you die? My top ten would definitely include learning to speak another language fluently, travelling in central Asia, and going on a spa holiday with lots of friends where I could spend days lying in a Jacuzzi and looking out at a beautiful view of snowy mountains – I might have to win the lottery first!
Thank you to... Gordon Fraser Charitable Trust, The Bruce Trust, Eleanor Barton Trust, Martin Connell Charitable Trust, James Weir Foundation, The JTH Charitable Trust, Lloyds TSB Foundation for Scotland and Kelly Family Charitable Trust for their much-valued donations towards our ongoing work at Solas, Milestone and in our Children and Families Project.
£150 from the Pedal for Scotland 50 mile cycle ride and Nik Dixon for raising over £100 taking part in the New York Marathon.
Harvey Nichols, Jenners, Susan Hamilton and Cadenza for their Christmas Carol Singing Fundraising.
Mary-Anne Reid for organising a Christmas Funk Up and raising over £150.
Christopher Brookmyre, Stephen Jardine, Ernst & Young, Jamie Chalmers, One Spa and Craigielaw Golf Club for their donations and support of our ‘In Conversation with Christopher Brookmyre’ event.
Gilead and The Scottish Government for their funding of our African support work in Scotland and in Malawi.
Tichafara Chisaka for raising £600 from taking part in the Glasgow Marathon, Claire Chatterley for raising over
Stacey McIntosh & Michael Bickett for raising over £550 by abseiling from the Forth Rail Bridge. Thunderdog Ceilidh Band for their £150 donation from the proceeds of their Hogmanay Ceilidh.
Remus, Cheeky Monkey, Highland Heritage, Past Times, The Body Shop and Four Seasons for donating Christmas presents for Waverley Care Milestone’s service users.
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World AIDS Day 08 A big thank you to everyone who braved the cold and turned out to support Waverley Care on World AIDS Day. Kathleen Marshall, Scotland’s Commissioner for Children and Young People, gave a moving speech at our key event at St John’s Episcopal Church, Edinburgh - ‘Celebrate, Reflect, Remember.’ Kathleen highlighted that over 1000 children and young people in Scotland are affected by HIV and in need of support, care and understanding. Waverley Care is privileged that Kathleen was able to join us at this event, which remembered those who have died of AIDS, reflected on the current global AIDS crisis and celebrated the developments that have been made in the fight against HIV. You can read a copy of her speech on our website www.waverleycare.org. Our ‘Come and Sing Fauré’s Requiem’ fundraising event was a great success raising almost £4000. Thank you to Mark Evans, NYCOS Edinburgh Choir, Michael & Cerin Richardson, Ken Johnstone, Neil Metcalfe and our wonderful ‘Come and Sing’ chorus for their contributions to the event.
A lantern made by the Children and Families Project for World AIDS Day.
Other World AIDS Day Fundraising “Thank you’s” go to … Balerno Community High School, Boroughmuir High School, Broughton High School, Craigmount High School, Deans Community High School, Leith Academy, Lornshill Academy, Peebles High School, Portobello High School, St Augustine’s High School, St George’s School for Girls, Stewart’s Melville College, Tynecastle High School and Whitburn Academy.
Spiritual Care, and Taste Club Night @ the Liquid Rooms.
BLOGS - Edinburgh University’s LGBT Society, Napier Students Association, Queen Margaret Student Union, Stevenson College and ESCA.
Kathleen Marshall, Children’s Commissioner for Scotland, Saville AV, SATV and Loud & Proud Choir for their contributions to our World AIDS Day event ‘Celebrate, Reflect, Remember.’
Mayfield Salisbury Church, Nicolson Square Methodist Church, St Andrew’s & St George’s Church, St John the Evangelist Episcopal Church, St Mary’s Episcopal Cathedral and St Peter’s Episcopal Church. City of Edinburgh Council, The Edinburgh Playhouse, North Edinburgh Drug Advice Centre, Remploy Knitwear, NHS Lothian Department of
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CC Blooms, GHQ, New Town Bar and The Regent Bar. Filmhouse for their World AIDS Day benefit screening of The Adventures of Priscilla, Queen of the Desert.
NYCOS Edinburgh Choir
Fundraising Diary
Waverley Care Spring Raffle Tickets Available Now!
Saturday 14th February 2009, 10am-1pm
Note Learning Rehearsal for ’Come and Sing’ “A Little Jazz Mass” St Peter’s Episcopal Church, Lutton Place, Edinburgh Saturday 21st February 2009, 7.30pm
’Come and Sing’ “A Little Jazz Mass” Conducted by the composer himself Bob Chilcott. St Cuthbert’s Church, Lothian Road, Edinburgh (Rehearsal 2 pm) Saturday 28th March 2009, 11am-5pm
’Come and Sing’ Workshop with John Rutter Wellington Church, Southpark Avenue, Glasgow. Registration now open. Tickets: £13.50 (£9.50 concession) Sunday 15th March 2009, 4pm-6pm
Sunday Splash Sponsored Swim In association with the Heart of Midlothian Swimming Club. Registration now open.
In association with ‘The Bohemians’ Tickets from www.waverleycare.org
Sunday 15th March 2009
Meadows Marathon, Half Marathon & 5km Places available now. Friday 3rd April 2009, 7.30pm
Colin Sell in conversation with Sheena McDonald “Shooting the pianist: or, How I Learnt to Stop Worrying and Love C# Major” The Performing Arts Centre at Stewart’s Melville College, Queensferry Rd, Edinburgh. Tickets £10 (£8) from 0131 529 6000 Saturday 2nd May 2009, 7.30pm
ABBA to Opera - The James Farrer Singers St Peter’s Church Hall, Lutton Place, Edinburgh Tickets £7 from 0131 226 2206 Sunday 31st May 2009
Edinburgh Marathon Full marathon and ‘Hairy Haggis’ places available. Saturday 29th August 2009
Loud & Proud on the Fringe Greyfriars Kirk, Edinburgh. Details to be confirmed. Sunday 6th September 2009
Festival Fireworks Dinner Apex Hotel, Grassmarket, Edinburgh. Details to be confirmed. For more details go to www.waverleycare.org or call 0131 226 2206 or email fund@waverleycare.org
Download a registration form from www.waverleycare.org (just go to fundraising events) or phone 0131 226 2206
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Your gift can provide: £25 can provide a Spiritual and Pastoral Care Session to offer spiritual support for an individual affected by HIV from any faith and of no faith. £50 can Train a Buddy Volunteer. Buddies provide one-to-one support and friendship to people living with HIV – much needed support as being HIV positive commonly brings with it feelings of isolation and depression. £100 can offer One-to-One Emotional Support for a Child affected by HIV over a four week period. Liaising with parents, social workers and school to ensure the best all-round support for the child.
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Waverley Care, FREEPOST RRKT-TKLZ-AYZE, Old Coates House, 32 Manor Place, Edinburgh EH3 7EB Waverley Care will process your personal information for administration purposes, to further our charitable aims and to keep you updated with our work. We will not share your information with any other agencies or organisations. * Waverley Care will claim Gift Aid tax relief of 25p on every £1 you give. For Gift Aid donations made from 6 April 2008 until 5 April 2011, the Inland Revenue will also be operating transitional provisions, paying a Government supplement of 3p per £1. This means, in total, Waverley Care will receive an additional 28p on every £1 you give. You must pay an amount of UK Income Tax, and/or Capital Gains Tax, at least equal to the tax that we will reclaim on your donations.