Monthly Archives: November 2016

Ask questions to the CEO’s of Leicester NHS & Hospitals

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Healthwatch Leicestershire is the county’s patient and public champion for health and social care services.  They exist to help the residents of Leicester and Leicestershire get the best service from health and social care providers.

They do this by listening to local people about their views and experiences of using health and social care services, such as:

  • GPs and practices
  • Mental health services
  • Hospitals
  • Social care
  • Community health services
  • Carers services
  • Children and young people services

They use what people tell them to challenge and influence those who plan, run and regulate services so improvements are made for local people.

Healthwatch Leicestershire is giving you the opportunity to submit a question to be answered by health Chief Executives of Leicestershire Partnership NHS Trust and University Hospitals of Leicester.  This is an opportunity for you to get a response from the people who make decisions about local health services.

You can submit questions about:

  • Leicester Royal Infirmary services
  • Glenfield Hospital services
  • Leicester General Hospital services
  • Adult Mental Health and Learning Disabilities such as; Adult Community Mental Health teams, Day Care Services, Homeless Service and Cognitive Behavioural Therapy Services.
  • Community Health Services such as; Community Physiotherapy and Occupational Therapy Teams, Falls Team, Night Nursing Service, Mental Health Services for Older People and Community healthcare non-inpatient services.
  • Families, Young People and Children Services such as; Children’s Occupational Therapy, Community Wellness Service, School Nursing, Stop Smoking Service and Tobacco Control, Adult Eating Disorders Therapy Service and Paediatric Psychology.

They will confirm receipt of your question and may need to come back to you to ask for more detail. If your question is not within the remit of the providers they will inform you of this and agree what happens next.

You may need to wait around 21 working days for a response, sometimes a little longer depending on the question and schedules of health care staff.

Once they have received the response it will be sent to you, providing they have your contact details. All responses will be posted on their website.  (They will not publish any personal identifiable information given by you.)

Send your questions to info@healthwatchleics.co.uk

If you require any further information, call them on 0116 257 4999.

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World Health Organisation Advocates for HIV Self-Testing

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The first legally approved HIV self testing kits only became available in the UK last year.

Forty percent of the people with HIV globally are unaware they are infected, the World Health Organisation (WHO) said in a statement yesterday (Tues 29th Nov) , two days ahead of World AIDS Day.

The WHO is advocating for broader access to self-testing kits to make it easier for those at risk to determine whether they are infected.

“HIV self-testing should open the door for many more people to know their HIV status and find out how to get treatment and access prevention services,” said WHO Director-General Dr. Margaret Chan.

The report cited studies which found that providing self-testing kits nearly doubles the chances of men who have sex with men getting tested.

Late Diagnosis in Leicester

Late HIV diagnosis in Leicester is 13.8% higher than the average for England.  HIV testing is a scary prospect to some and no one takes that for granted, but by taking the chance to be tested, you could be buying yourself years of life.

Do you know your HIV status? – The only way to know if you have HIV or not is to get a HIV test.  You can do this for free at your doctor, free at an NHS clinic, free with charities like LASS and now you can even do a HIV test at home, at your convenience.

For more information on HIV Testing, please visit our website where you can find information about testing with us or other places in Leicester/shire and around the UK.

You can also apply for a FREE home sampling HIV kit or you can purchase your own self test kit.  An explanation on the differences between testing methods is available in our HIV Testing Pages.

Self-testing would be particularly beneficial to populations that face a wide variety of barriers to testing centers; however, many of the financial constraints which prevent access to testing and treatment may similarly impede access to self-testing kits.

Still, the WHO noted significant improvements in HIV awareness and treatment in the past decade. In 2005, just 12 percent of those infected with HIV knew they had the AIDS virus. Last year, the number climbed to 60 percent. Additionally, 80 percent of those who know they are HIV-positive are currently receiving antiretroviral therapy (ART).

Wide-scale implementation of self-testing remains limited, but 23 countries currently have policies in place supporting it, and many other nations are developing similar policies.

You can read the full statement by the World Health Organisation here: http://www.who.int/mediacentre/news/releases/2016/world-aids-day/en/

Want to know how a HIV test works? – See this video featuring Dr Christian on loose women .

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How A Red Ribbon Conquered The World

Thirty years after the HIV virus was first documented, the red ribbon is the ubiquitous symbol of support for those living with the illness. Who thought of it and how did it get so big?

In the sparse surroundings of a former classroom on a spring day in 1991 – a decade after the rise of AIDS – a group of 12 artists gathered to discuss a new project.

They were photographers, painters, film makers and costume designers, and they sat around in the shared gallery space known as PS122 in New York’s East Village.

Within an hour or so of brainstorming, they had come up with a simple idea that later became one of the most recognised symbols of the decade – the red ribbon, worn to signify support for people with HIV/Aids.

“We wanted to make something that was self-replicating,” says Patrick O’Connell, who chaired the meeting. “It’s extremely simple, like Bauhaus but half a century later. You cut the ribbon 6-7 inches, loop it around your finger and pin it on. You can do it yourself.”

The ribbon was the latest project by Visual Aids, a New York arts organisation that raises awareness of HIV/Aids.

When they sat down in the shared gallery space of PS122 in May 1991, they wanted to get people talking about the illness that was decimating their professional and social network, in the face of public indifference and private shame.

People were dying without even telling their friends why they were sick, and the artists wanted a visual expression of compassion for people living with Aids and their carers.

“Even in New York, we were very aware of how many people couldn’t talk about it, or were oblivious, or were going through it themselves but ashamed to talk about it,” says photographer Allen Frame, who was also one of the 12. “We wanted to make people feeling isolated more supported and understood.”

Their inspiration came from the yellow ribbons tied on trees to denote support for the US military fighting in the Gulf War, he says. Pink and the rainbow colours were rejected because they were too closely associated with the gay community, and this was an illness that went well beyond.

“Red was something bold and visible. It symbolised passion, a heart and love.”

The shape had no significance but was easy to make.

It took two more meetings to refine the design and then they set to work on making the ribbons themselves, distributing them around the New York art scene and dropping them off at theatres.

Initially there was a text that went with it, to explain why they were being worn, although this was later dropped because it became superfluous.

A few weeks after that first meeting, the group sent a box of 3,000 ribbons to the Minskoff Theatre on Broadway, ahead of the Tony Awards for the theatre industry. Some of them were making ribbons and watching the televised event as actor Jeremy Irons, one of the presenters, came on to the stage wearing one.

“Within three days, the media finally figured it out and it snowballed. I started being contacted by people in Hollywood,” says O’Connell.

Demand increased to such a degree that supply needed to be outsourced, and Visual Aids used a charity working with homeless women to make the ribbons. They sent out 10,000 ribbons for one Oscars ceremony, and over the coming years they made about 1.5m.

Stars like Bette Midler and Richard Gere were not only wearing them, but openly discussing why it was important. A ribbon-sporting culture developed within the acting profession.

“It became trendy and sometimes I think celebrities felt blackmailed and thought they had to show up wearing a ribbon, which wasn’t the case,” says O’Connell. “We weren’t keeping count that way.”

The ribbons first crossed the Atlantic in large numbers on Easter Monday in 1992, when more than 100,000 ribbons were distributed at an Aids benefit concert in London’s Wembley Stadium for Freddie Mercury.

They also began to proliferate in mainstream American life. Schools and churches across the US touched by the illness started to contact Visual Aids for advice on how they could explain it to children and parishioners – the answer was to hold a ribbon-making event.

“This was a way to educate people in a non-combative way,” says O’Connell, who has a ribbon on every item of clothing. Direct action was still important, he says – campaigners occupied the Stock Exchange and tried to re-enact a funeral on the White House lawn – but the ribbon was a way to broaden the conversation.

One unforeseen consequence has been the number of awareness ribbons that have been adopted since – pink for breast cancer being the most well known.

The artists purposefully never trademarked it – the point of the project was to invite more people in, says O’Connell – which meant it could appear anywhere without Visual Aids’ permission or any payments. It even turned up on a US Post Office stamp.

But he and some of the other artists behind the concept believe the proliferation and merchandising of the ribbon – ornamental ribbons selling for $19.95 in department stores and red ribbon mugs – has commercialised and trivialised their idea.

In a spirit more in tune with the one envisaged by Visual Aids, the ribbon is replicated in many different forms for memorials on World Aids Day, and its symbolism no longer needs any explanation.

In the poorest parts of the world, ribbon production has been central to efforts to raise funds and change attitudes, says Sir Nick Partridge, chief executive of the Terrence Higgins Trust in the UK.

Women’s collectives make ribbons and adorn them before selling them in their community.

“A number of people living with HIV really appreciate seeing other people wearing the red ribbon. They realise they’re not alone and recognise that the majority of people wearing them probably don’t have HIV themselves, and that sense of support and solidarity is very, very important.

“There has been some criticism, that it is only a symbol. But symbols are important, and the way in which the red ribbon was embraced by community activists, doctors and researchers is a unifying emblem in what is a very disparate epidemic.

“The brilliance of the artists was not copyrighting it. Making it freely available was a gift to the Aids community worldwide.”

Those 12 artists never worked together again as a group, but with the battle against the illness ongoing, their activism continues.

 

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Testing begins on new vaccine that could be ‘final nail in the coffin’ for HIV

Researchers hope to prove the drug can be at least 50 per cent effective Getty

Researchers hope to prove the drug can be at least 50 per cent effective Getty

The biggest ever trial of a new vaccine hailed as a potential “final nail in the coffin” of HIV has begun in South Africa.

Story via Telegraph

Researchers hope the vaccine, currently named HVTN 702, could finally lead to a cure for HIV, which directly affects 37 million worldwide and kills over 1 million each year.

In what is only the seventh full-scale human trial of an HIV vaccine, 5,400 sexually active South African men and women aged between 18 and 35 will take part in a test of the drug, which was developed by pharmaceutical companies Sanofi Pasteur and GSK.

The trial is being jointly funded by the US government’s National Institute of Allergy and Infectious Diseases (NIAID), the US military, the South African Medical Research Council, and the Bill & Melinda Gates Foundation.

Anthony S Fauci, the director of NIAID, said: “If deployed alongside our current armoury of proven HIV prevention tools, a safe and effective vaccine could be the final nail in the coffin for HIV.

“Even a moderately effective vaccine would significantly decrease the burden of HIV disease over time in countries and populations with high rates of HIV infection, such as South Africa.”

The trial will test the efficacy and possible side effects of the vaccine, which is a modified version of a previous vaccine known as RV144. This was tested in 2009 in a trial of 16,400 people in Thailand and shown to be effective in 31 per cent of people.

This success, although limited, gave scientists hope they were close to finding a clinical way of preventing HIV, which can currently be treated through a lifelong drug programme but not easily prevented.

The new vaccine includes a number of modifications to the one used in the Thailand trial and has been tailored to target a strain of HIV that is common in southern Africa.

Researchers hope to prove it is at least 50 per cent effective – a significant increase on the Thai trial and, crucially, the threshold that is likely to secure a license to manufacture the drug commercially.

Dr Glenda Gray, president of the South African Medical Research Council, said: “The people of South Africa are making history by conducting and participating in the first HIV vaccine efficacy study to build on the results of the Thai trial.

“HIV has taken a devastating toll in South Africa, but now we begin a scientific exploration that could hold great promise for our country. If an HIV vaccine were found to work in South Africa, it could dramatically alter the course of the pandemic.”

More than 1,000 people in South Africa currently become infected with HIV every day.

Half of the participants in the study will be given the new vaccine while the other half are given a placebo. All recipients will receive five injections over the course of a year, along with a drug to boost the immune system’s response to the vaccine.

Researchers will closely monitor them for any side affects or signs the vaccine has not prevented them contracting HIV in the community. Anyone taking part who does become infected will be offered medical treatment and information on how to reduce the risk of them transmitting the virus.

Results of the study are expected in late 2020

READ MORE

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Forget everything you think you know about people living with HIV.

Becky Mitchell, who contracted HIV in her 40s, talks about being HIV Positive

Becky Mitchell, who contracted HIV in her 40s, talks about being HIV Positive

Becky Mitchell is a picture of health – she teaches gym classes four times a week, always eats her five fruit and veg a day, and loves to cycle.

In the summer of 2012, Becky had found a new lease of life after splitting with her husband.  She eventually met someone new and, after a few months together, they started having unprotected sex.

But not long afterwards she received an email from her partner’s ex-girlfriend that changed her life forever.

Story via Metro

Diagnosis

We got together and were really careful to start with. After a few months, he said he didn’t have anything, and I figured, we’re in our 40s – who lies about these things? So, as the relationship got more serious, we stopped using condoms.

A few weeks later, I’d been feeling ill for a couple of weeks, and had noticed a rash on my chest, but didn’t think anything of it. Then I got an email from his ex-girlfriend, telling me he had HIV and doesn’t take his medicine properly.

I thought, oh my god, I’ve got to go and get tested. The doctor suggested I wait a month so I went back in on a Monday to get the test. On the Friday after work, I was back in the doctor’s about a completely different thing, when my doctor got a phone call while I was in the room. It was my results.

The doctor told me there and then that I had HIV. My first response was, I haven’t got time to be ill! I knew I couldn’t let this stop me running or cycling. I asked the doctor if I’d still be able to do all of that – he assured me I would, and he phoned after the weekend to check I was alright. As it sunk in I felt shocked and upset – I knew there was no cure.

But my passion for fitness helped me come to terms with my diagnosis – I carried on teaching spinning, kettlebells and leading running groups. I knew I wanted to get on with my life as normal.

Telling friends and family

I told a couple of friends straight away and left it a little while longer to tell my mum and brother.

It was particularly hard for my mum. What can your mum really say? She had a typical mother’s reaction – she just felt powerless, saying, ‘I can’t take this away from you, there’s nothing I could do to make it better.’

Friends would say to me, ‘How on earth could you have HIV? You’re so fit and sensible.’ But that’s the thing – it can happen to anyone. HIV doesn’t discriminate, it could happen in your first sexual relationship or in older age.

My friends understood that being HIV positive is not the same as ‘AIDS’; that I was not going to die. But they did have questions – they’d always say ‘sorry if that sounds stupid’, but I’d never blame them for not knowing the ins and outs of HIV. I wouldn’t have known myself if it hadn’t happened to me. I knew it came from a point of them wanting to be better informed and wanting to know I’m alright.

Treatment

I’ve never felt like an ill person or a victim. Within two weeks of starting my treatment, it had suppressed the amount of HIV in my blood to ‘undetectable’ levels. And I’ve stayed undetectable ever since. I feel superhuman!

It definitely helps that I was diagnosed early and that I’m fit and healthy. Who knows what is further ahead as I grow older with HIV, but I’ve really not had any issues or side effects.

Support

I knew I couldn’t deal with this on my own, I needed to speak to people living with HIV. I joined the Terrence Higgins Trust forum that evening and got a lot of my questions answered by people who really understood.

I’ve also had lots of support from Terrence Higgins Trust’s Bristol office who have been fantastic. You shouldn’t feel alone – there is community out there, ready to support you if or when you need it.

Dating and relationships

After my diagnosis, I was traumatised by my experience and glad to be on my own – I have always been comfortable by myself.

Every now and again something comes along and I’ve dated people, usually meeting them through friends. I’ve never had any negative feedback from dates about my HIV status, probably because most people already know about it as I’ve put it out there in the media. I find once it’s out there and I’m open about it, it doesn’t cause an issue. It’s the fear, silence and taboo around HIV that fuels stigma.

I decided to be really open about my HIV status as the more it’s out there, the more we can normalise it and improve public awareness.

I want people to know that HIV doesn’t define me as a person; I’m the same woman, just stronger and wiser.

Have you ever been tested?

Some people think taking a HIV test is scary, but honestly it shouldn’t be. The condition is entirely manageable.  If you test positive, early detection, monitoring and effective treatment means that your life can largely carry on as before.

Incredible medical progress has been made in the last 20 years and HIV treatment is now very effective. If you are diagnosed with HIV before it has damaged your body and you are put on effective treatment, you can expect to live as long as anyone else.

HIV is no longer the death sentence it used to be and people are able to live, healthy and happy lives like they did before. However, this is thanks to the amazing progress we have made in treating the condition and we can only begin to do that when we make the decision to get tested and keep on top of our health.

Late HIV diagnosis in Leicester is 13.8% higher than the average for England.  It’s a scary prospect to some and no one takes that for granted, but by taking the chance to be tested, you could be buying yourself years of life.

For more information on HIV Testing, please visit our website where you can find information about testing with us or other places in Leicester/shire and around the UK.  We also have information about testing for HIV at home.

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One Woman’s Triumph Over HIV In Ghana (360 Video)

Meet Doris, a HIV positive patient in Ghana, whose quality of life dramatically turned around thanks to the Global Fund and Korle Bu Teaching Hospital in Accra. Through her story, discover why HIV disproportionately affects women in Sub-Saharan Africa.

This is a 360 degree video. If you have cardboard or a VR headset you can immerse yourself in this short documentary.

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HIV testing in the workplace

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We are delighted to be able to share the early key findings from our innovative regional project that delivered HIV testing in workplaces.  Not only do our findings demonstrate how acceptable providing an HIV test is in a workplace, we also discovered that 95% of participants who received the follow up text messaging service were inspired to make a positive change to their own lives to better protect their own health.

As we approach National HIV testing week (19-26 November) and World AIDS day on 1st Dec we invite you to use this information to encourage readers to find out their own HIV status and challenge the stigma and discrimination that still surrounds people living with HIV.  An overwhelming majority of attendees at the healthy hub events considered the HIV test to be an acceptable element of workplace health checks and over 99% of participants found our information informative and easy to understand.

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The project was funded by Public Health England as one of the  HIV innovation awards and delivered by a partnership of local HIV awareness voluntary organisations. The evaluation is being completed by Nottingham University.

HIV organisations across the county are opening extra days or evenings to encourage uptake of HIV Testing.  Locally, LASS are open over the next two Saturdays (19th & 26th November) and on Tuesday evening (22nd November) for people who may not be able to access our normal opening times during the day.  More information on our additional opening times are available on our Events Page.

Please contact us if you would like more information.

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