Monthly Archives: February 2011

Are you a Volunteer Co-ordinator?

· Date: Thursday 17 March

· Time: 5.30pm – 7pm

· Location: Town Hall Council Meeting Chamber

VAL is holding a meeting for volunteers to share their experiences and to give feedback on volunteering in Leicester. The Lord Mayor will also be attending the event to thank volunteers for their vital contribution.

VAL is interested in finding out what motivates volunteers, what’s changing, the Big Society and how VAL can help to give volunteers more of voice in policy decisions.

The event will consist of a cluster of enjoyable mini focus groups where volunteers will get the chance to share their experiences and give their take on local volunteering, in an informal and welcoming way. The full event programme can be found below.

Volunteer Co-ordinators

If you think your volunteers would benefit from attending this event then please:

  • Collect up to five names/contact details from your volunteering team and send them to helpline or call 0116 257 5050
  • Alternatively volunteers can contact the Helpline directly on the details above

The feedback given from the meeting will help VAL to improve services for volunteers and help shape the future of volunteering in the City. Depending on success VAL is hoping to arrange a similar meeting at County Hall.

Volunteers’ Forum Event Programme

Purpose

An opportunity for volunteers to meet and share experiences and voice their outlook on the volunteering landscape/the way they see active citizenship best being fostered.

5.30pm Gather in venue

5.40pm Introduction from Jim McCallum – purpose of event/introduce Lord Mayor

5.45pm Welcome from Lord Mayor – welcome to Town Hall and a few
words of thanks for their volunteering

5.50pm Think piece from Jim McCallum about some trends in volunteering

5.55pm Group discussions on three key questions

  • Why do you volunteer?
  • What do you most and least enjoy about your volunteering?
  • Is volunteering changing? If so, for the better or the worse?

6.40pm Report back from discussion groups

6.55pm Thanks for coming/wrap-up/next steps

7pm Event ends

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Get free access to online services, tools and community spaces for everyone living with HIV in the UK.

 

The Secretary of State for Health, The Rt Hon Andrew Lansley MP, and the Terrence Higgins Trust have launched a new resource, Life Plus, which will transform the way people with HIV manage their condition long term. Created by the Elton John AIDS Foundation (EJAF), HIV and sexual health charity Terrence Higgins Trust (THT) and people with HIV, Life Plus is an innovative set of online, face to face and telephone support services that delivers cost effective, personalised support for people living with HIV in the UK.

Andrew Lansley met service users at the Harrison Wing, Guy’s and St Thomas’ Hospital, London to find out first-hand the impact that Life Plus will have. St Thomas’ is situated in South London, which has the highest prevalence of HIV in the UK, and is a leading hospital for HIV care

Currently around 86,500 people are living with HIV in the UK, and every year around 7,000 more are diagnosed. This creates mounting pressure on an already constrained NHS. Life Plus, funded by the Elton John AIDS Foundation and developed in partnership with HIV organisations George House Trust and National AIDS Manual (NAM), is designed to ease this pressure by offering vital free support to help people with HIV live long and healthy lives, whilst relieving clinical expertise to wholly focus where it is most needed.

Life Plus will partner NHS clinical care by providing face to face support in areas of the UK which have high rates of HIV prevalence; Brighton, Birmingham, Glasgow, Cardiff and Manchester. Clinic-based Health Trainers in each of these cities will provide people living with HIV with one-to-one support, to become experts in managing their condition and the social care challenges that may jeopardise their health and medical treatment.

As part of the programme, a dedicated new website, www.myhiv.org.uk, will also enable people living with HIV to access interactive services tailored to their individual needs, requirements and stage of diagnosis, wherever they live in the UK, including:

· The option to privately and securely store information on their health and treatment so they can monitor and actively manage their HIV and stay adherent to treatment

· A reminder function for clinic appointments

· Forums for people to build communities and offer support to each other

· Online counselling and advice

· Information on how to become an active campaigner on HIV issues

For people who don’t have access to the internet at home, THT is working with HIV clinics, including the Harrison Wing at St Thomas’ Hospital in London, to offer free internet access to www.myhiv.org.uk and video conferencing facilities so that people can talk to experts from THT in clinics. People can also access confidential support from the charity’s helpline, THT Direct, on 0845 12 21 200.

Sir Nick Partridge, Chief Executive for Terrence Higgins Trust said: “Life Plus is a very exciting new type of service provision and comes at a critical time to support the higher numbers of people living with HIV in the UK. HIV is a complex condition so it’s vital that people get the best possible level of support, accessible in a multitude of ways, to ensure they remain healthy.

“HIV service providers and clinicians across the country have been fundamental in shaping Life Plus and these services have been designed to reach people in both rural and urban areas, whether they’re newly diagnosed or have been living with HIV for many years. Thanks to the Elton John AIDS Foundation these services will revolutionise support for people with HIV, helping them to manage their health and treatment more effectively.”

Sir Elton John, Founder of the Elton John AIDS Foundation said: “In many ways, the UK response to prevention and treatment of HIV has led the world. I am proud to be launching a new era in HIV services, delighted to be working with THT again, and hopeful that this approach may see opportunities for the management of other long term chronic conditions.”

If you have any questions or comments, please contact them at: membership www.tht.org.uk/membership

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Our message is clear, know your own HIV status. Get a HIV test at LASS and have the result within a minute!

We are pleased publish our local advert to promote HIV testing, in our office location in Leicester Town Centre, on Regent Road.

This advert speaks with 15 languages internationally.  This advert cost marginally and considerably less than the Governments 1987 “Tombstone” Advert.

Our message is clear, it is better to know your own HIV status and you can get a HIV test at LASS, and have the result within a minute!

Our team of volunteers have specialist training to provide a free and confidential test, we also have a fantastic support team to provide after-care and further information if required.  We also have established network links so we can refer to more specialist agencies all around Leicester, Leicestershire and Rutland so you can be sure to get expert advice for your needs.

We also have a support group called LhivE, a group of people from Leicester, Leicestershire & Rutland who are living with HIV.  Living with HIV brings a whole set of its own issues and LhivE demonstrate that people living with HIV can lead fulfilling and safe lives with choices.

We hope you like our new advert and hope that you’ll feel comfortable to contact us if you would like a free and confidential test.

Volunteers Forum (City). 5.30pm – 7.00pm, Thursday, 17th March 2011

VAL is running a Volunteers’ Forum, a meeting for, largely, city based volunteers to give us a take on the volunteering landscape as seen by volunteers themselves.

They are interested in their take on what motivates volunteering, what’s changing, Big Society, and what VAL can feed in to the policy arena to amplify the voice of volunteers, not about their specific role and circumstances, but about the volunteering scene generally.

The event is predominantly a cluster of mini focus groups on aspects of volunteering, which hopefully will be enjoyable. It is also in a largely informal way a civic occasion, being in the Town Hall Council Meeting Chamber, and with the Lord Mayor welcoming attendees and thanking them for their volunteering.

The agenda is attached below. It is a reasonably brief event, and it’s their hope that some LASS volunteers might be interested to attend. This opportunity is being sent to the Volunteer Network members first. To get a range of interests and demographic, They’re seeking up to, but no more than, five volunteers per organisation.

If you’re interested in attending, please contact LASS so we can pass your details to VAL.

Volunteers’ Forum Agenda.pdf

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HIV & AIDS in Britain – A brief history.

Source: http://www.guardian.co.uk/society/2011/feb/06/jonathan-grimshaw-hiv-aids-survival

1981 First case of Aids reported in UK in December, seven months after first cases in California and New York. At first confined to gay men, it is called the gay plague or Gay-Related Immune Deficiency.

1982 Terry Higgins, a Hansard reporter and barman, dies; his friends establish the Terrence Higgins Trust as an educational and counselling charity.

1983 Haemophiliacs and recipients of blood transfusions found to be infected. Media hysteria begins, accompanied by a rise in homophobia and the thought that there are "innocent" and "guilty" victims.

1984 HIV virus is isolated.

1985 The HIV test widely available. The support group Body Positive established. 275 cases of Aids reported by the end of the year. Royal College of Nursing predicts 1m infections by 1991.

1986 The government sets up a cabinet committee and announces a £20m education and care package.

1987 Leaflets go to 23m homes, followed by the Don’t Die of Ignorance television campaigns. A needle exchange for drug users opens in Scotland.

1988 Section 28 of the Local Government Act forbids the positive promotion of homosexuality in schools. The residential centre London Lighthouse opens.

1989 Cabinet committee disbands, its job seemingly done. Princess Diana takes up the challenge.

1990 Compensation awarded to haemophiliacs and dependents.

1991 HIV comes to EastEnders; Freddie Mercury dies.

1993 The Aids toll reaches 7,000, with one-sixth of these believed to be from heterosexual intercourse. A long-term study of AZT, the "magic bullet" drug, shows it to be only marginally effective.

1996 Combination therapy of protease inhibitor drugs becomes the first long-term beneficial treatment for HIV, greatly extending life expectancy for many.

1999 Number of new heterosexually acquired HIV cases surpasses the figure for homosexual transmission.

2000 The London Lighthouse merges with the Terrence Higgins Trust, an apparent sign of diminishing needs and funding.

2002 Between 1996 and 2002, the number of newly diagnosed HIV cases has more than doubled, from 2,685 to 5,847. A switch begins to a wider education about all sexually transmitted infections.

2007 Only one-quarter of 1,246 haemophiliacs infected with HIV are still alive; an independent inquiry will find in favour of more adequate compensation.

2010 As of June, there have been 26,262 diagnoses of Aids in the UK; 90,000 people are living with HIV, while thousands more are believed unaware of positive status. SG

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Jonathan Grimshaw: ‘I tested HIV positive in 1984’

Jonathan Grimshaw was one of the first men to be infected by HIV in Britain. Here, he talks about survival and the illness that has become his life’s work

Jonathan Grimshaw at home in East Sussex. Photograph: Sonja Horsman for the Observer

By the beginning of 1987, Jonathan Grimshaw had established himself as the UK’s most visible HIV-positive man. He looked striking: he was 32, bald and he often wore a bow-tie. He spoke eloquently about a terrible disease, something he’d been diagnosed with soon after the tests became available in February 1984. With no specific treatments, his prognosis was not good, but he believed his best chances of survival lay within the realms of activism, honesty and education. So he wasn’t at all surprised one day to be seated on a sofa for an explicit live television programme with Claire Rayner.

It was National Aids Week, the first of its kind, and all the channels had given up airtime to support the government’s unprecedented public health campaign. Everywhere one looked, there was a nervous health minister explaining that we were all at risk and how best to protect ourselves. In the ad breaks, there were images of icebergs and tombstones and the voice of John Hurt imploring us not to die of ignorance. And as the country sat down to dinner, it was greeted with the sight of an agony aunt with a condom in one hand and something else in the other.

“She had been sent a very peculiarly shaped wooden phallus by a fan,” Grimshaw recalls, “and she was trying to get this condom on to this very fat phallus. First take, she couldn’t get it on. KY all over the place. She had this blouse which she was getting black marks on because of the KY. Second take, she couldn’t get it on. Third take, she finally forced the condom down on this wooden monstrosity.”

Claire Rayner, alas, is no longer with us. And nor are almost all of Jonathan Grimshaw’s friends from that time. But at the age of 56, Grimshaw is still in fairly good health, one of this country’s longest-surviving, HIV-positive men. After a period of retirement, he is once again engaged with HIV work and, as we approach the 30th anniversary of the first Aids case in the UK, he finds himself reflecting with a mixture of sadness and wonderment.

“It’s so horrific looking back. I don’t look back very often. It’s hard to conceive that it was actually all happening – you’d get phonecalls to say, ‘So and so is ill’, and it wasn’t that they were ill – they were dying. And you would see them dying. Over the course of a couple of years, you would see them wasting away, you’d go to see them in hospital and you’d go to their funerals. And it was one after another. I don’t know how we did it. Most of the people I knew, most of my friends, died. I was talking to another friend of mine recently who’s also got HIV, and who’s also one of us long-term survivors, and he said that although we’re well and there are treatments, there isn’t a single day that goes by without you having been affected by it.” Grimshaw laughs, as he often does, as a release. He adds: “That’s all I can say about it really.”

But of course there is more. Grimshaw lives with his long-term partner in an elegant, 18th-century, beamed house in Tunbridge Wells. He says that he first became fully aware of HIV the same way many of us did – by watching a 1983 BBC Horizon programme about the epidemic in New York. He had lived in New York a few years before and not long after his return to London he began to see stories about a mystery illness in the newspaper Capital Gay. “But I didn’t know anyone personally affected by it. It seemed to be in America, remote, and it didn’t seem like anything that was going to affect me very much.”

It became more personal in 1983. “An ex-partner of mine called me up and told me that somebody who we’d both slept with at some time in the past had got this new disease. And the doctor who was treating him had suggested that all of his sexual partners should attend the clinic just to be monitored. At that time, the cause wasn’t known, but it was thought there was a sexual transmission element.”

He attended the St Stephen’s clinic, which became part of the Chelsea and Westminster Hospital. He seemed to be fine, but was asked to come back every three months.

“So I kept going back. Then on one visit later they said they had tested my blood for this new virus which was thought to be the cause of Aids and the test had come back positive. I think I was one of the first people to be tested in the country. You just think, ‘Oh Jesus, I’m going to die. I’ve got this disease, and if I have intimate sex with somebody I can kill them.’ You can’t really take in much more than that. The doctor was saying, ‘Will you be able to cope?’ and I was saying, ‘Of course I’ll be able to cope’, and then I left the clinic reeling.

“I didn’t have a partner at the time. I told my parents and I said I wanted to go home for a few days to see them and talk about things. I was in a pretty bad way emotionally. But they didn’t want me to go home. I had a younger brother who I think at the time was 13 and they just didn’t know if there might be some kind of risk to him from my going home. It was terrible. On one hand, I could understand what they were saying and even sympathise with it. On the other, I was dreadfully upset. It really felt like a rejection. I told a very helpful nurse at the clinic what had happened and he said, ‘Do you want me to talk to them?’

“My parents lived in the north-east, so they came down, and this nurse took them through the risks and how it could be transmitted and not transmitted, and for them being able to hear this with a medical hat on reassured them. So after that I was able to go home.”

Grimshaw learned that the Terrence Higgins Trust was about to set up a support group for people who were infected but evidently healthy. “I made sure I was in it – I really was not coping at all well. Drinking quite a lot and completely not knowing what I was going to do.”

There was no treatment against the virus, and no known prognosis, but there was much prejudice. “Because there wasn’t a scientific explanation,” Grimshaw recalls, “all those very ancient theories about what causes disease came up – the idea that disease is some kind of punishment. Those are very difficult things to dislodge.”

The first support group was only intended to last for six weeks, but Grimshaw recognised a need to extend this and co-founded the organisation Body Positive in 1985. This provided a telephone helpline, counselling and hospital visits and spread out from London to 43 local groups.

It was around this time that Grimshaw became the acceptable public face of HIV. “I suppose I felt at that point that people had to take me as I am. It became obvious to me that the way the stigma was partly going to have to be dealt with was that the public needed to see people – as I thought, fairly normal people – on television talking about it, about how if affected them as a human being. I also felt I had nothing to lose – I was probably going to die. There were a few periods when I was on television a lot and I remember I would be careful not to stand at the edge of the tube platform. There were stories about people with Aids being attacked and things could be quite violent.”

Grimshaw looked after himself as best he could. He joined a gym; he ate well. And then there was his work, the sense of fighting the virus by doing something. “Psychologically, that was hugely important to me. I remember a few people who got very involved in the activism used to say, ‘This is the best thing that has happened to me – I’m doing something with my life now that’s really important and worthwhile, and if HIV hadn’t happened I would never have done anything like this.'” (Before his new mission, Grimshaw worked as a television production manager; his last project before diagnosis was a six-part series for Channel 4 called Survive.)

Grimshaw’s work expanded from Body Positive to include consultative and educational roles at many Aids organisations. He also sat on the first committee responsible for planning the Conservative government’s public health campaigns, advising ministers on the most effective language to persuade gay men to protect themselves. He remembers fearing a backlash “if suddenly the public was being told what gay men did in bed”.

His counselling work culminated in the establishment in 1989 of the Landmark, a day centre in south London. It was opened by Princess Diana; a year later, Grimshaw was awarded an MBE, the first such honour for someone in the HIV sector. Looking back, he flippantly suggests he may have had “a kind of Aids activist compulsion disorder”. Regarding his public visibility he says: “I may have been a bit overexposed. I was told at one point that people were calling helplines asking if HIV made you lose your hair.” In fact, his baldness is due to alopecia (“like Matt Lucas”).

During this period, his blood was monitored every three months. For more than a decade, his T-helper cells, the standard gauge of a responsive immune system, remained high. Grimshaw was fortunate to be a slow progressor.

Fifteen years ago, things slowly changed. His T-cell count began to decline and he found he was continually exhausted. He retired from the Landmark in the mid-90s (the centre now caters for people with learning disabilities), and moved to Brighton, where he bought himself a flat and tried not to be too pessimistic. “If you looked at the downward slope on the graph it wouldn’t be too many years before it hit bottom and I’d be done for. The advice at the time was, ‘Cash in your pension, have a good time with the years that you’ve got left.’ So that’s what I did. I thought that was it.”

But then the drugs took effect. The new treatments, known as protease inhibitors, worked particularly well when taken in a carefully balanced combination, and Grimshaw has had to modify his particular cocktail a few times to combat resistance. Although bouts of breathlessness require him consciously to conserve his energy, he remains largely well. He is a little hard of hearing, but he attributes this to standing too close to nightclub loudspeakers.

Five years ago, he decided to stop the Aids work completely. But last year he came across a study by the Terrence Higgins Trust into the lives of people over 50 with HIV. “There were echoes of how things used to be and it got me very annoyed again. It’s been found that people with HIV are experiencing diseases of ageing, like heart disease or liver disease or kidney disease 10 to 15 years earlier than the general population. A lot of them are quite likely to be poor, because they’ve cashed in their pensions, they haven’t worked for a long time. And there are still problems even in the NHS of people experiencing stigma and discrimination.” Grimshaw volunteered again to work on strategy.

As of June 2010, there have been 26,262 diagnoses of Aids in the UK and there are about 90,000 people living with HIV. I ask Grimshaw how many people from the original Body Positive support group were still around.

“I think they’re all dead. Four definitely are and the fifth I lost touch with. I think I would have heard if he was still alive.”

I wonder whether he ever asks himself: “Why me?”

“Not really. I don’t think my survival is a result of anything I’ve done or not done. I think it’s just a particular make-up of my immune system. I am extraordinarily lucky.”

Source: http://www.guardian.co.uk/society/2011/feb/06/jonathan-grimshaw-hiv-aids-survival

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Beating The Odds

Source: http://blogs.independent.co.uk/2011/02/09/beating-the-odds/ By Winnie Ssanyu Sseruma

Many days I wake up in utter amazement at how good I feel even though I have lived with a life-limiting disease for almost half of my life now. In a few months, I will celebrate my 50th birthday, a milestone I was never supposed to aspire to, let alone reach. This year also marks 30 years since the first diagnosed case of AIDS in Los Angeles, California. A lot has happened since then, it is a good time to do some reflecting and I will start by sharing my personal story.

In 1988, I applied for a health related internship while I was living in North America and I was required to take some blood tests. A couple of weeks later I was told that my HIV test was positive. I was 27-years-old.

To say that I was shocked about my HIV diagnosis is an understatement, made worse by how the devastating news was actually delivered to me. I was sitting in a small room in a clinic and, before the health advisor had even sat down he bluntly announced ‘I’m afraid your HIV test came back positive. This means you are carrying the HIV virus.’ He then stopped and looked at me, possibly expecting me to respond somehow, but all I could do was stare at him. I don’t remember much of the discussion that followed.

Over the next few weeks, I walked around in a daze trying to understand what having HIV actually meant. During the late 1980s, the message was that if you had HIV there was no cure and you were going to die a horrific death. Who got HIV? Well, it depended on who you asked. Some churches even preached that HIV was a punishment from God, so ‘sinners’ deserved what they got. I genuinely thought that I was going to drop dead any day, and sooner rather than later.

None of my friends or family was aware of what I was going through. I was too worried about being judged and about the obvious anxiety it would cause them. The person I felt needed to know most was the guy I was dating at the time. I finally mustered the courage and told him that he needed to go for a test. He didn’t take the news very well, not because he cared about my wellbeing, but more because he was sure that I had infected him. Thankfully, his HIV test came back negative but our relationship didn’t survive. HIV discordance – where one person is HIV positive and another is negative – is a phenomenon that still baffles scientists.

Six years on from my initial diagnosis, I was feeling very isolated and stressed, I was borderline depressed. I had very little emotional support, mainly because I was terrified of anyone knowing about my HIV status and being ostracized further. During this period, I also lost both my parents to different forms of cancer and a 27 year-old brother to a HIV related illness.

Unlike many other people living with HIV at that time however, I was taking one of the first ever anti-HIV treatments, although there was a lot that scientists, doctors and patients still didn’t know about the medication’s side effects. What I most remember happening to me is that I lost my appetite and consequently lost a lot of weight, my skin became ashy black, and so did my toe and fingernails.

In 1994, exhausted and feeling like there was really not much point to life, I returned to Uganda hoping for a quick and painless death. Once there I had to disclose my HIV status to my younger sister. Luckily she was very supportive and told me that she knew a few people who were HIV positive.

After six months with no more anti-HIV treatment I got tuberculosis, followed by pneumonia and I nearly got my wish of dying. With my sister’s knowledge of good private healthcare and the little bit of money I had left, I eventually got the right treatment, but it took me a whole year to fully recover from all the opportunistic infections.

At the invitation of my brother living in the UK, in late 1996 I arrived in London to recuperate and focus on living again – I suppose had grown bored of waiting to die. When I went to hospital, I was diagnosed with AIDS with a CD4 cell count of 1. The CD4 cell count range for a normal person is anywhere between 500 – 1200 cells.

It was in 1996 when the majority of British people living with HIV and with a CD4 cell count below 250 started accessing the new Highly Active Anti-retroviral Therapy (HAART). Although when I arrived in the UK I had no intention of staying, after visiting a support group and listening to empowered and healthy-looking HIV positive women, I decided that I wanted to live again.

After 23 years of living with HIV, I have never felt better. My CD4 cell count is near normal and ARV therapy has suppressed the virus in my body to undetectable levels for over a decade. The last thing I want to do is hide, and just try shutting me up about HIV! I work to help improve the lives of those living with HIV and to raise awareness to stop more people getting infected.

As the world reflects on the 30th anniversary of the first diagnosed case of AIDS, it is important to acknowledge the amazing work that has taken place. It is also equally important not to forget that many challenges remain.

I will be writing on different HIV related issues throughout the course of this commemorative year. The journey continues.

For more information on Christian Aid’s work on HIV and health please visit www.christianaid.org.uk/whatwedo/in-focus/hiv-malaria-health/index.aspx

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