Positively Women Changes

posted: 09/06/2010

Positively Women, based in London, has changed both its name and the focus of its work. As their website says "On 6 June, Positively Women entered a new and exciting chapter in its life. Following a major strategic review and process of consultation with service users and stakeholders we have extended our remit to reach both men and women living with HIV.

Positively UK retains its core ethos of peer support, with people living with HIV developing and delivering services. Our peer support services for women remain along with Positively Women magazine, and these now sit alongside services for men and young people."

About the changes

After 23 years, Positively Women has entered a new and exciting chapter of its life. In June 2010 following a major review of strategy, and consultation with service users and stakeholders they have decided to serve both men and women living with HIV.

It will retain its core ethos of peer support, with people living with HIV developing and delivering services. Peer support services for women will remain, alongside resources such as the Positively Women magazine. They will build on their strengths and provide peer support to new groups, notably men and young people. They are saying 'we are here to support people living with HIV across the UK'. That explains the change of name to Positively UK.

New Vision - A society where HIV and related health conditions are free from stigma and discrimination
New Mission - Positively UK champions the rights of people living with HIV and related health conditions

What they will do 

• Providing specialist and peer support, advocacy and information
• Campaigning against discrimination
• Promoting positive attitudes and equitable access to health
• Increasing involvement, voice and visibility

Ambition - To provide peer led support to all people living with HIV in the UK by 2020.
 

Why change the name after 23 years?
Positively Women has spent a year reviewing its strategy and future. The whole country faces a period of significant change and less public funding for services. Councils and the NHS are expected to reduce the number of contracts, and will favour general support organisations rather than specialists. Providing services specifically women, meant Positively Women would be vulnerable. It has already lost some funding because of this.
 

Gap for Peer Support

There is a lack of organisations providing peer led work - services led by people with HIV . Continuing to provide peer services to women, and extending this to men, meets a need and helps fill this gap. Changing the name reflects this.

Why Positively UK?
They have kept the word ‘Positively’ as the organisation remains committed to supporting people living with HIV. It also acknowledges and keeps a link to the past. Adding ‘UK’ makes it clear to people using services, to funders and others that the organisation is open to everyone living with HIV, across the country.
Replacing ‘Women’ in the name was a difficult decision and they realise many people will feel a sense of loss that the organisation is no longer called Positively Women. The name Positively Women  is close to many people’s hearts and is an assurance of dedicated services for women. They will keep the Positively Women brand for all their women’s services and have designed a new Positively Women logo.
This was developed with a design company Intertype who have helped before with their publications design including Positively Women magazine. Intertype came up with a series of designs for the new logo. Staff, volunteers and trustees were consulted and the new design was the most popular. People felt this was friendly and accessible. The designers did not charge and Positively UK designed and built their own new website.
 

Services for Women

Positively UK will have six strands of work. A main strand will continue to be Positively Women. Women still encounter gender and health inequalities, and women living with HIV have specific needs in their role as mothers and carers. Positively UK will continue to provide one-to-one and group peer support for women; women accessing services will still receive support from another positive woman.

Their current London support groups will remain women only and we will continue support for lesbian, bisexual and transgender women. Positively Women magazine will also remain women focused.

Positively UK will also continue to support the development of the national network of women living with HIV, PozFem-UK. They are also committed to new women’s services and over the next year are developing a project to support women through pregnancy and ante-natal care.
 

Services for Men Services for men will be developed under the accompanying strand of Positively Men.
 

Other services They already host Str8 Talk, a self-facilitating group for heterosexual men and women; and their Parenting and Caribbean groups are already open for men to attend. Additional peer support services are being developed for men and they are already recruiting and training male volunteers to be peer mentors providing one-to-one support, alongside female volunteers; in the meantime their London services are open to men.
 

Positively Youth
In early 2010 they ran a pilot project looking at the needs of young people living with HIV as they make the transition from adolescence to adulthood and paediatric to adult HIV services. They are looking for funding to implement a new programme for young people living with HIV, working in partnership with the 900 clinic at St Mary’s Hospital, in London.
 

Positively Health
Their prevention activities have focused upon the African communities as part of the Department of Health’s NAHIP programme. They aim to continue this and build on this to extending work in the community and with people living with HIV, and into HIV testing.
 

Positively Policy
The organisation remains committed to developing and supporting the involvement of people living with HIV in shaping policy, practice and services. PozFem-UK, the national network of women living with HIV, will continue to be developed and they are committed to developing a wider network to support all people living with HIV in consultations and policy responses.
 

Positively Information
Their website is their largest information tool for wider the public and people living with HIV. It's been redesigned along with the change of name.

Positively Women magazine

Positively Women magazine  continues to be the only magazine for women living with HIV written by women living with HIV. They are developing new materials to support other aspects of our work such as information for women around pregnancy and resources for young people.
 

Their new website - Positively UK

PozFem-UK website

Their questions and answers document about the changes - the information above comes from this.

Loss of Hero to HIV Youth

posted: 08/04/2010

"I guess you could say I live life to the full – I'll do anything [rather] than have the words HIV on my tombstone," wrote Clint Walters recently.

Clint was just 17 when he was diagnosed with HIV in 1996, dedicated his life to combating ignorance and supporting others who were struggling with the illness. In one year alone he ran the London Marathon, abseiled off South Africa's Table Top Mountain, swam with sharks, skydived, and cycled from London to Paris to raise money for charity.

But on Sunday, aged 31, he died at home of a sudden heart attack in south London. Yesterday tributes were about a man who was an "amazing inspiration" and a "walking talking hero, who was so humble". "Clint just had the most incredible energy," said his friend Neil Parrett. "He was a force of a personality, impossible to resist. He was always laughing, always made you feel special. I just can't believe I am never going to hear him laugh again. He was a real inspiration, probably the nicest guy I have ever known."

Growing up in a small town near Oxford, Mr Walters barely knew about HIV and had had only two relationships when his mother took him to the doctor with breathing and chest problems. The diagnosis was devastating. "You can't describe the pain of the diagnosis. My mum didn't even know I was gay," he said four years later.

Treatment starts new life
He initially "lost all hope" but began treatment and started to regain his fitness. He left hospital in time to sit his A-levels and later travelled to San Francisco to work and study at a University of California Aids Health project. "My whole world opened up for the first time," he wrote. "I came to terms with my diagnosis and worked at several amazing agencies, learning as much as I could. I decided to head back to the UK to provide the support I never had."

Talking and shouting about HIV
Despite admitting it was difficult, even as an adult, to broach the subject of his HIV-positive status with strangers, he opted to "shout it from the rooftops" to break down the taboo, convinced that ignorance fuelled increasing infection.

HIV youth project
In 1999, he founded Health Initiatives for Youth UK   to provide peer support to young people living with HIV and started touring the country to take the message to colleges and schools, hoping his frank talks would teach teenagers to learn from his mistake. He said: "My aim has been to give the children something I never had – a young outspoken face of HIV to which they can relate."

"Rather than let it beat him, he focused on life and tried to make it better for other people in the same situation," added Mr Parrett. "He took calls from young people all over the country and people came to stay with him if they were struggling to come to terms with the diagnosis. He was completely selfless."
 

Clint Walters was doing well on his HIV treatments and doctors were pleased about his fitness levels. He died after suffering a heart attack on Sunday. Right up to the very end, his social networking website read: "Mood: Optimistic".
 

George House Trust's Positive Speakers programme provides talks and HIV awareness in schools and colleges in NW England

Source

infomation on Health Initiatives for Youth UK

50 Pounds for Fun and 100 Words

posted: 29/10/2009

Go out and have fun with some positive friends, write 100 words about it, take a photo (if you can) and send it all to Gus. Be quick - it needs to reach him no later than Friday 4 November. Gus says even a two-sentence quote will do, he doesn't want it to seem like an assignment!

Every published piece of writing for the Christmas and World AIDS Day issue of HIV Treatment Update will get £50.
 

Gus Cairns wants the Christmas/World AIDS Day issue of HIV Treatment Update to talk about your experiences of HIV socialising: how you meet other positive people and have fun with them.

The idea is to have it written by the people who go to groups and people who do things. It doesn’t matter if you think you can’t write proper English – send it in and he’ll tidy it up.

How do you  beat isolation and stigma?
As Gus says, HIV positive people often face isolation and stigma (sometimes self-imposed) but in line with the piece on happiness in the last HIV Treatment Update, they want people’s stories of how you overcome isolation and stigma.

• Do you have a circle of HIV positive friends you network with, or an HIV+friendly circle?
• How important is the social support of other HIV+ people to you?
• What activities do you enjoy doing together? Or
• Do you feel you lack social support and would like somewhere friendly and informal to go to?

The definition of a “social group” for this article is that it could be formal, semi-formal or completely informally organised, but shouldn’t feel formal.

Is my group OK?

• If it’s a formal group run by an organisation (HIV or otherwise), it should feel like a fun place to go: one of the African ‘let’s get together and have a meal and a chat’ groups for instance. Or an HIV disco night. Or something.
• Semi-formal means something like the London gay men’s HIV Meet-Up group.
• Informal means any group of poz friends who get together to do stuff now and then.
• It should NOT be about a “support group” in the classic sense. i.e. we don't want something about counselling or groups for people who are newly diagnosed.
• The other exclusion is that this isn’t primarily a piece about sex, dating or finding love, and although you may find romance (or a shag) in social groups, the emphasis is on meeting and hanging out with friends and potential friends.

Photos? permission and confidentiality
If you do go out and end up sending in photos, PLEASE make sure you have people’s consent to be featured in HIV Treatment Update and that the person's pictured are happy with people knowing or assuming that they may be HIV+. Alternatively, take photos that don’t identify people.
 

All contributions welcomes – this is a chance to get your name (disguised if you want) in HIV Treatment Update.
 

Send your pictures and words to Gus, editor of HIV Treatment Update by Friday 4 November.

How can I get HIV Treatment Update?
You can get HIV Treatment Update free here (pdf version)
click Add to basket, then (top right in basket area) click Proceed, then at the checkout click Proceed , and on the next page give your email etc details.
 

You can get a printed copy posted free here (free print version for people living with HIV) - simply follow the instructions above
 

Photos of Fun and 100 Words

posted: 02/10/2009

We want you to go out and have fun, write 100 words about the experience, ideally take a photo and send it to Gus.

Gus Cairns wants the Christmas/World AIDS Day issue of HIV Treatment Update to talk about your experiences of HIV social networking: how you meet other positive people and have fun with them. The idea is to have it largely written by the people who go to groups and people who do things. It doesn’t matter if you think you can’t write proper English – send it in and they’ll tidy it up.

How do you beat isolation and stigma?

As Gus says, HIV positive people often face isolation and stigma (sometimes self-imposed) but in line with the piece on happiness in the last HIV Treatment Update, they want people’s stories of how you overcome isolation and stigma.

• Do you have a circle of HIV positive friends you network with, or an HIV+friendly circle?
• How important is the social support of other HIV+ people to you?
• What activities do you enjoy doing together? Or, on the other hand,
• do you feel you lack social support and would like somewhere friendly and informal to go to?

The definition of a “social group” for this article is that it could be formal, semi-formal or completely informally organised, but shouldn’t feel  formal. 

• If it’s a formal group run or facilitated by an organisation (HIV or otherwise), it should be something that feels like a fun place to go: one of the African ‘let’s get together and have a meal and a chat’ groups for instance. Or an HIV disco night. Or something.
• Semi-formal means something like the London gay men’s HIV Meet-Up group – which is a model for this sort of thing.
• Informal means any group of poz friends who get together to do stuff now and then.
• It should NOT be about a “support group” in the classic sense. i.e. we are not looking for a piece on counselling or therapy groups for people who are newly diagnosed or whatever. These are a great resource, but not what this piece is about.
• The other exclusion is that this isn’t primarily a piece about sex, dating or finding love, and I don’t intend to cover dating sites etc…although one may well find romance (or a shag) in social groups, the emphasis is on meeting and hanging out with friends and potential friends.

So…I’m hoping this will work and people will write in about their fave ways of spending time together.

Photos? permission and confidentiality

If you do go out and end up sending in photos, PLEASE make sure you have people’s consent to be featured in HIV Treatment Update and that they’re happy with people knowing or assuming that they may be HIV+. Alternatively, take photos that don’t identify people.
All contributions welcomes – this is a chance to get your name (disguised if you want) in HIV Treatment Update.

Send your pictures and words to Gus, editor of HIV Treatment Update 

How can I get HIV Treatment Update?

You can get HIV Treatment Update free here (pdf version)

click Add to basket, then (top right in basket area) click Proceed, then at the checkout click Proceed , and on the next page give your email etc details.

You can get a printed copy posted free here (free print version for people living with HIV) - simply follow the instructions above

AIDS Project 3 image from Bryan Rollins Blog

HIV - Online Support Launched

posted: 27/04/2009

Social networking technology puts people in touch with each other and the launch of a new HIV web support service offers peer support tailored to people living with HIV in the UK.
 

Myhealthgen.com, a new on-line patient ‘support’ initiative for people living with HIV was launched last week. It offers people access to peer support wherever they may live; at a time of their own choosing; in privacy, or in the comfort of their own home.

Myhealthgen.com is a ‘not for profit organisation’ managed by volunteers. It has an Advisory Board consisting of members of Body and Soul, GMFA, Living Well, National Aids Manual and RestorEgo.

Commenting on the need for new support initiatives, Emma Colyer, Director Body and Soul, an HIV organisation that assisted in piloting the site said, “Myhealthgen.com offers the opportunity of a much needed peer support network for people living with HIV, including those who do not want to use group support, those who do not have access to local support, or simply those who are looking for an new ways to deal with living with HIV.”

“Whether it’s to seek or to offer peer support, or to simply learn more about others’ experience of living with HIV, Body & Soul would certainly recommend that people take a look at the site” she added.

Choice of One to One or groups

The site has adopted the technology usually associated with on-line dating sites to allow users to interact with other users on the site, either on a one-to-one basis, or through joining a user group of similar interest. Users of the site are invited to create their own unique profile, which allows users to have total anonymity if required.

Commenting on the site, Carl Burnell of Gay Men Fighting AIDS (GMFA) said, “Myhealthgen.com fills a real unmet need in HIV peer support. Our experience of website based support for newly diagnosed men demonstrates that on-line support can make a real difference to the lives of users. We are confident that the responsible on-going peer communication offered by Myhealthgen.com will be a real success”.

Myhealthgen.com already has over 200 users.

Fresh type of support

Sharing experience of a diagnosis or journey, understanding side effects, or just getting advice from others on how they have managed their condition are some of the unmet needs in HIV support for many. Identifying people who are living with HIV who appreciate the isolation that might come with a diagnosis and the uncertainty a diagnosis brings, is not easy for many people.This new website offers a fresh means of support.

It can deliver more than just support. Experience has shown that better understanding about a condition leads to better self management and greater empowerment, providing clinical, social and mental health benefits.

The site offers opportunity for individual contact and also contact through groups, where people with similar interests can come together and share views and experience. These can be open or closed groups.

Treatment information and questions answered

It can also offer tailored treatment information and advice to people living with HIV. Robert Fieldhouse, a respected HIV treatment advocate with considerable experience, will be available for consultation, providing advice and comment on questions from users. Robert will support people as they consider side effect issues, new medication and other related issues that arise from an HIV diagnosis. His advice will complement guidance available from health care professionals.

MyHealthgen.com You need to register with a username and password and create a profile. There is nothing on the frontpage to say it is for people living with HIV. Indeed people can set up groups for any condition on the site.

This is what they say about their principles and how the site works.

Myhealthgen was started to help us all better understand our journey and experience as patients. You may find people who live near you and/or have the same diagnosis, giving you the opportunity to share information and/or experience. We all have so much to offer each other.

You can be either diagnosed with a condition or a carer to make maximum use of this site.

Create a profile

When you register you need to create a Profile. At all stages you are in charge of the information you provide. Basic information, (your username - which might be an alias, your primary diagnosis, your sex and UK county of residence), is needed so you can make contact with other people. We hope you will find it easy to set up a profile which you can share progressively as your choose.

You can update your profile whenever you wish. The information boxes on the site are for your convenience. MyHealthGen only needs the basic information completed. You can search using anyone of these items Uploading a photo is your choice or you can choose a colour to represent you if you prefer.

Search, ask, help

Having created a Profile on MyHealthGen you can search for people with the same diagnosis, seek advice and offer your experience. If you can’t find your condition let them know and they will include it.

Noticeboard

A Noticeboard will carry public messages from people and will be available 24 hours after they have been sent to the site.

Chat

MyHealthGen offers you the opportunity to engage in one to one conversations with people.

Start a group - private or public

You can start a Group. As “administrator” you are not obliged to manage the group. This title simply means you started the Group, but you can choose to make it a public or private Group. It can be a forum for friends (this will be private so that only they can join) or public where everyone can join to discuss and share matters of mutual interest. Having started a Group you have no responsibility to make it work or to monitor the discussion. It is a forum for people to responsibly express their views.

Confidentiality

We will make sure your information is always secure but when you share information with others, we cannot guarantee its confidentiality any more. Please let us know if you feel you or your information is being mistreated, you can e-mail

Body and Soul is a London-based charity supporting children, teenagers and families living with or closely affected by HIV. Body and Soul’s holistic approach encompasses both peer and professional support and information, enabling people to face the challenges of HIV.

GMFA is the UK's leading gay men's health charity, reaching over 140,000 men with our interventions. It develops a wide range of health promotion, including web and print advertising campaigns, booklets, websites, community building events, a regular magazine and groupwork.