Insight

Battles Against Stigma Can Be Won

posted: 20/11/2008

Michelle Reid, Chief Executive of George House Trust reveals how stigma and discrimination can be quickly overturned

We talk a lot about the stigma and discrimination faced by people living with HIV, but what do we really mean? This month, we look at a real example of discrimination in action, and what we can do to stamp it out.

Nick secured a good job in a call centre with a national company. On his first day at work he disclosed his HIV status to his manager. The next day he was called in to see his manager’s manager, and asked why he had not disclosed his HIV on his application form. Nick knew that he was under no obligation to do this. He was then told that because he had ‘lied’ to his employer, he was not reliable and should therefore not return to work the following day.

Call George House Trust

Fortunately Nick contacted George House Trust at this point, and came in to see Colin Armstead. Nick and Colin agreed a course of action together. Colin contacted the personnel manager, and discovered that Nick had been dismissed for ‘material non-disclosure’. Colin’s ensuing discussion with the personnel manager revealed her complete lack of understanding of Nick’s rights under the Disability Discrimination Act. She would not accept that Nick had been discriminated against in any way. She also felt that Nick had a duty to disclose to his colleagues “in case of a First Aid situation”.

Colin was very clear that the company had breached their obligations under the Disability Discrimination Act and that if this was not sorted by the end of that day, legal advice, and probably action, would be taken.

By the end of the afternoon the personnel manager contacted Colin. She had looked into the case, sought some advice, and now realised that the situation had been “completely mishandled”.

Company admits mistakes

She admitted that there was no obligation for Nick to disclose his HIV status. She wanted to apologise unreservedly to Nick for any offence or distress caused to him. The company wanted to offer Nick a choice of three different jobs, with a different manager. Colin contacted Nick with the news and he was delighted with this outcome. Nick has now accepted the offer of a job under a different manager. He is also about to attend a Newly Diagnosed Course at George House Trust.

Learning lessons

We are impressed that the company said sorry and quickly worked to undo its mistake. We’re now working with them on training relevant managers. We would always prefer to train and guide companies so they are prepared rather than have to take action against them. We are always keen to work with organisations , even if no more help is needed than suggesting sources of accurate information and best practice guidance.

Rights fightback continues

Although this story had a positive outcome, we know that there are many people who don’t come forward when they’ve been treated unfairly. Employment discrimination is just one example of the kind of unfair treatment handed out to people living with HIV. But at least we have the legal tools to fight back. We will continue to fight for people’s legal rights and best practice everywhere.

"George House Trust helped me by getting in touch with my employer on my behalf.  This helped as I was able to get my job back and the company listened to what they had to say and I felt really happy with the outcome."

Insight 46 full issue

Benefit Changes

posted: 20/11/2008

Services Adviser Dunkan MacLean looks at Employment Support Allowance which will affect many people with HIV.

Employment and Support Allowance (ESA) is the new benefit for people who are sick or disabled. It started in October and replaces Incapacity Benefit and Income Support.

Over the next 2-3 years everyone already on Incapacity Benefit will be transferred to ESA. This is a firm part of the government’s welfare to work plans. But for now, Employment and Support Allowance only affects new claimants. It will need a law change before those already on Incapacity Benefit can be moved to ESA.

ESA aims to give more support to people who are sick or disabled to enable them to work as soon as possible, rather than settle into long term sickness. For most people, claiming this will feel like there are many more hoops to get through than before. New claimants will have to pass a tough new test to identify the sort of jobs you may be able to do, despite your ill health or disability. Most people will have their benefits cut if they don’t attend interviews with jobs advisers.

The government hopes the mix of more back-to-work help and penalties will cut the number of people on sickness benefits by one million, down from about 2.6 million now.

Target: one million to lose Incapacity Benefit

In a recession, because there aren’t enough suitable jobs being created, cutting the numbers getting sickness benefits by one million will mean many people who are now on incapacity benefit will find themselves switched from ESA to Job Seekers Allowance.

After making a claim by phone you start a 13-week assessment phase. During this time you get the basic rate of £60.50 a week for a single person aged 25 or over (under 25s get less, couples may get more).

A doctor or nurse working for the department for work and pensions, never your own GP, carries out a Work Capability Assessment, which looks at how illness or disability affects your ability to work and do everyday things. This Assessment uses a system of 46 “descriptors” - things that may affect people’s overall work abilities and health. This is a tougher version of the system that is already used for Incapacity Benefit. Many will fail to score enough points now and will then face new, additional tests.

Roughly 8 weeks from claiming, most people will then have a work focused interview. A personal adviser will discuss your benefit claim, your views on returning to work, and the package of support you may need to get into work.

ESA for only 13 weeks then Job Seekers Allowance?

At the end of the 13 weeks of Assessment you will either stay on ESA, or your claim will end and you will have to claim Job Seekers Allowance instead. This means living on just £60.50, and proving you are actively looking for work each week.

If you are allowed to stay on ESA after the first 13 weeks, you are put into either Support or a Work-Related Activity “groups”. How much you will now be paid depends both on the group you’re put into and your National Insurance contributions. Some people will also be able to claim income-based top-up payments, called premiums.

If you are put into the Work-Related Activity group, you will have to attend monthly work-focused interviews with your personal adviser for five months and your benefit rises to £84.50 a week (more for some couples). The firm aim is to get you back into work and you will be given an action plan. Personal advisers will discuss the types of work that you might do and can send you for employment support sessions, training courses and “condition-management” support.

If instead they decide you really cannot do any work, you will join the Support group. ESA is then £89.50 a week but many people will also be paid income-based top-ups.

ESA is much more complicated than Incapacity Benefit. A big rise in appeals is expected. ESA is expected to cause problems especially for people with variable but serious long-term conditions, such as HIV. Most people’s claims run smoother with expert advice. Manchester Welfare Rights service runs advice sessions here - book one by calling us on 0161 274 4499.

Official guide: www.dwp.gov.uk/esa

Helpful ESA factsheet: www.disabilityalliance.org/f31.htm

Citizens Advice Bureaux:                 www.adviceguide.org.uk 

Insight 46 full issue

Volunteers’ Big Impact

posted: 05/08/2008

Volunteers led the first response to the HIV epidemic. Laura Hamilton, Volunteer and Development Manager, looks at how volunteers support is still changing living with HIV

We describe volunteers as the life-blood of George House Trust. We were founded by a group of volunteers, who were responding to the need for accurate information and support during the early days of alarm about AIDS.

Today over 100 volunteers, from a range of communities, still support and lead the organisation's work. Recently, the Commission for the Future of Volunteering argued that volunteering should be part of UK society.

For HIV sector organisations and our communities, volunteering and activism have always been right at the heart of what we do for over 20 years. Volunteers with George House Trust make a real difference in many ways. Volunteers help people to live healthy and full lives with HIV, recover independence after illness and to access a range of services.

Some bring personal experience of living with HIV. Some campaign against the deportation of HIV positive people, fight stigma and discrimination, raise vital funds and govern the work of the organisation, as trustees.

Many find that volunteering helps personal growth and development; whether through building self-confidence, expanding knowledge and skills, making friends, or taking the first steps towards returning to work.

Volunteering can also be a positive way to channel anger at the stigma, discrimination and injustice which still entangle many people's experiences of living with HIV.

Today, our volunteers still reflect the communities most affected by HIV. In recent years, we have seen more women and people from African communities joining our team in addition to continuing support from the gay community. Over a third of our volunteers are people living with HIV.

In the 1980s and early 1990s, before the advent of effective treatments for HIV, much volunteering centred around befriending and end-of-life support. Many people will recall buddying, which describes the social and emotional support provided for people who were ill or dying. For HIV positive people who could be very isolated, or experiencing stigma and prejudice from those around them, buddying volunteers offered respect, social contact, and a very special human kind of support.
In 2008, the needs of people living with HIV are dramatically different to a decade ago. Vastly improved treatments and drugs mean better health and near-normal life expectancy for most people now diagnosed in the UK.

Rebuilding independence
Volunteer support has shifted to helping people rebuild independence and take a greater part in mainstream activities and services. Volunteer support is less about filling a gap in someone's life and more about working with the person to help bridge that gap, and about developing the person's own varied interests, aspirations and abilities.

Today, volunteer support is as diverse as our service users. It ranges from supporting someone to go swimming or to take part in a yoga class, confidence boosting and building, to encouraging first steps towards returning to work or education, to explaining to recent migrants how to use public services such as transport, to finding local groups and services. A key difference is that the support is shorter term and focused around finding activities or interests that can be self-sustained, once the volunteer support ends.

Our aim is to help people create and redesign their own support networks, skills, work and leisure activities.

What hasn't changed is the warmth, humour and humanity that volunteers bring , and our conviction that volunteers play an essential role in ensuring quality
services and support for people living with HIV.

Interested in volunteering? Details at www.ght.org.uk

footnote www.volcomm.org.uk


The full issue of Insight 45 is attached for downloading

Related Downloads:

Insight45web.pdf

Attitude Matters

posted: 05/08/2008

How we think affects what we say and do - so standing up for better attitudes towards people living with HIV is at the heart of George House Trust’s message for Manchester Pride

Launching this year’s Pride campaign, we are left wondering why we still need to run
campaigns challenging attitudes towards people living with HIV. How can this be, in the year 2008? How can this be, when there is such extensive information now available about HIV, how it is transmitted, and what the risks are?
How can this be, when over 33 million people across the world are HIV positive?

Stigma and discrimination are still very real experiences for many HIV positive people. Every day we support people who have faced discrimination or negative attitudes as a result of HIV.

The discrimination, blaming, shaming and shunning of people as a result of stigma may
follow disclosure of HIV status to a friend or partner, or to an employer. It may be the dentist who turns down a patient, or it may be a school teacher threatening the confidentiality of a child.

From rescuing to nurturing
Our goal is that attitudes to HIV will change a great deal and in future we won’t need to
campaign so much about this. We want to switch from fire-fighting against bad attitudes, to nurturing people in far more positive ways. We want instead to support people in having really fulfilling lives, more satisfaction from healthy sexual relationships, and job satisfaction with an understanding employer, for example.

Our “What’s your attitude” campaign challenges everybody to think about attitudes to people living with HIV, and test whether your attitude is a positive, negative, or “untested” response. We want the campaign to make you think and talk about HIV
attitudes among friends, colleagues, bystanders on the parade.

What’s the story behind the negative attitudes? Would we feel different if our best friend
or close relative told us they have HIV? Are people wary of confiding in me because of my attitudes? How can I get my own worries answered?

Knowing someone and talking
One of the best ways of changing people’s attitudes is through simple social contact – talking and arguing about our ideas and attitudes. It would not take much to change the climate about HIV if everyone just did a little. If everyone reading this was prepared to speak out, if necessary to challenge what people say, what your friends and family may
let slip, or an employer’s policies. You definitely don’t have to have all the facts or a smart response. It can be very powerful just to say firmly “I don’t agree” or “That’s just wrong.”

Throw out questions, provoke debates, conversations, and share your knowledge. We encourage everyone to talk to our staff and volunteers over the Pride weekend to help
explore attitudes and to learn more about people living with HIV. Our Positive Speakers Programme will take out our message and challenge attitudes of various community groups and organisations across the North West.

HIV - no longer apart, secret and silent
With HIV we’re between a rock and a hard place. People fear being open about HIV status because of the risk of stigma and discrimination, but while we keep HIV apart, secret and silent, people will continue to feel badly about HIV because of ignorance and fear. The responsibility for challenging stigma and discrimination begins and
ends with all of us.
attitude matters - make yours positive

The full web edition of Insight 45 is attached to download

Related Downloads:

Insight45web.pdf

News Round Up

posted: 19/05/2008

Sickness Benefits Are Changing, What Next in Prosecutions, UK African Prevention Plan, Positive Action, Is

Incapacity Benefit Changes October
Everyone now receiving Incapacity Benefit (or Income Support for ill-health) will have to take a "rigorous" test to see if they are capable of working, starting in April 2010. The government says it wants to shift towards a sickness benefits system that encourages people to work if they can.
The first step will be in late October this year. Incapacity Benefit (and Income Support) will be replaced with a new benefit for people making fresh benefit claims for sickness. The new benefit is Employment and Support Allowance (ESA). Then, between April 2010 and 2013, everyone already on Incapacity Benefit (Income Support) will also face the tougher tests that will be used for Employment and Support Allowance.

Employment and Support Allowance involves a 13 week series of hurdles. This starts with a physical and mental activities test which is much tougher than the one already used for Incapacity Benefit. This looks at what you can't do. You need to score 15 points at least to stay on ESA. Score under 15 points, and you will have to claim Job Seekers Allowance.

The next ESA hurdle is a test to see if you have a "limited capability for work-related activity" - there are 46 categories. Fit at least one of these and you will be left to your own devices in the ESA "support" stream.

Everyone else is put in the "work-related activity" stream of ESA and has to go through a "work-focused health-related assessment." This looks at what you can do rather than the things that you can't do. A "capability report" is produced and that is used in the first work-focused interview, about 8 weeks after you claim. There are then monthly work-focused interviews (six in total) aimed at getting people back into work. Free factsheets available at www.disabilityalliance.org/esa.htm


DLA special rules - Top Twin Tip
The review of all people paid the highest rate for care under the "special rules" is continuing to bite. Don't ignore the review form, DBD551. Get expert help - it's not a form for DIY filling in. Our welfare rights expert will help. Her top tip is to imagine you have a HIV negative twin who is otherwise the same as you, but is fit and perfectly well. Now keep a diary to show our welfare rights expert. The diary should spell out how your day to day life is different from your pretend negative twin. S/he won't have treatment side effects, unpredictable nausea and explosive runs, have days too exhausted to get out of bed etc. No detail is too graphic or small. And in the diary list any drug side effects and all the medications you take, even asprins.


Prosecutions Policy - what’s next?
HIV sector experts met after the Crown Prosecution Service published its prosecutions guide for transmission of HIV and other sexually transmitted infections (STI).

The fundamental weakness is the guide doesn't name HIV, any other STI, nor spell out unambiguously that using condoms is always a reasonable defence. Instead the policy is general and short on detail. We predict the recent run of failed prosecutions will continue because it doesn’t give their own prosecutors the clear guidance they need on the evidence required by courts for fair verdicts. The CPS has just abandoned another case - against a gay man in Cardiff.

A UK consensus statement from medical experts on the evidence needs in prosecutions for the transmission of each STI should help. This would deal with transmission risks, reasonable ways to reduce these, and interpreting the clinical and scientific evidence of transmission. The British Association for Sexual Health and HIV (BASSH) might be asked to provide this. We also need updated best practice guidance for clinics on better handling of contact tracing, and on keeping clinical records about sexual behaviour and the advice given.


Undetectable = Uninfectious?
The Swiss National AIDS Commission’s claim in January created an international storm. They said that people with an undetectable viral load (under 40 copies/ml) for at least six months, keeping to their treatments properly, and with no other sexually transmitted infections, cannot pass on HIV sexually. The latest issue of HIV Treatment Update from NAM examines this claim in detail. The Swiss are wrong, but it is true that people meeting all three Swiss conditions are not very likely to pass on HIV.

The evidence the Swiss relied on comes from just three small studies with different HIV status heterosexual couples - under 200 couples. This is nowhere near enough people to be sure HIV won’t be passed on. A bigger study with nearer 2000 couples has now started. And the Swiss advice definitely doesn’t apply to anal sex, because the transmission risks are higher.


African HIV Prevention Plan
The UN Special Envoy for HIV and AIDS in Africa, Elizabeth Mataka, launched the first HIV prevention plan for Africans in England, at the recent Under the Baobab Tree conference. Titled "The knowledge, the will and the power: a plan of action to meet the HIV prevention needs of Africans living in England", it can be downloaded from Sigma Research at http://tinyurl.com/563mpj


Positive Action - making it happen
Feedback from the March Positive Action Conference of people living with HIV begins at George House Trust on Tuesday 8 July. Copies of the report of the conference will then be available.

Positive Action was a place to debate the hot issues, develop community leadership for increased influence and action, and establish sustainable networks of people living with HIV. A George House Trust service user co-chaired the conference opening session and four people, including one from George House Trust, made a presentation from the conference to clinicians at the recent British HIV Association Conference in Belfast.

The top topics at Positive Action were influencing healthcare services, employment and HIV, HIV 'education' (in schools and public awareness), stigma, discrimination and disclosure, and prosecutions for HIV transmission.



Prize Winning Graphic Novel
Blue Pills - is the life story of a family coming to terms with HIV, powerfully told in graphics. When "Blue Pills" was first published in the author’s native Switzerland, it sold more than 20,000 copies, an extraordinary feat for a 192-page book drawn entirely in black and white graphics. It’s won prizes at Europe's most prestigious comic book festivals and is now out in the first English translation. It costs under £9 at Amazon http://tinyurl.com/276epp