This is an issue of the Positive Action newsletter. If you would like to subscribe to recieve this regularly in your email, please click here
Volume 12, Issue 1
Welcome to Positive Action's new e-newsletter!
This new publication will be produced bi-monthly with news and infomation from Positive Action (PA), service users and partner organisations. Following this World AIDS Day launch edition, new features will be added in the new year.
Please contact us if you would like to be added to our mailing list, or go to www.positiveaction.org.uk/mailinglist.php to register.
World AIDS Day
What is World AIDS Day?
World AIDS Day is held on the 1st December each year and is an opportunity for people worldwide to unite in the fight against HIV, show their support for people living with HIV and to commemorate people who have died. World AIDS Day was the first ever global health day, held for the first time in 1988.
Why is World AIDS Day important?
Over 100,000 people are living with HIV in the UK. Globally there are an estimated 34 million people who have the virus. Despite the virus only being identified in 1984, more than 35 million people have died of HIV or AIDS, making it one of the most destructive pandemics in history.
Today, scientific advances have been made in HIV treatment, there are laws to protect people living with HIV and we understand so much more about the condition. Despite this, each year in the UK around 6,000 people are diagnosed with HIV, people do not know the facts about how to protect themselves and others, and stigma and discrimination remain a reality for many people living with the condition.
World AIDS Day is important because it reminds the public and Government that HIV has not gone away – there is still a vital need to raise money, increase awareness, fight prejudice and improve education.
For more information visit - www.worldaidsday.org.uk
We have been busy in the community encouraging people to think about HIV and to raise money for PA. We'd sincerely like to thank everyone who has supported our World AIDS Day campaign. For more details visit - http://www.positiveaction.org.uk/wad.php
Christmas is Coming!
PA's annual Christmas Party will be held on Thursday 17th December at the Southampton Centre, from 5pm to 8:30pm.
An evening of fun and cheer has been planned, including a traditional Christmas dinner and perhaps even a visit from Santa himself!
Please speak to a member of the team to reserve a ticket and to arrange transport, if required.
If we don't see you at the party, the staff and Trustees would like to wish you all a very Merry Christmas and a Happy New Year!
In your Area...
Positive Action staff are available to meet with you in sexual health clinics.
Currently staff have regular scheduled sessions in:
However, we would be pleased to meet with you at other clinics in Hampshire or Surrey if that is helpful to you.
Please contact the team at PA or at your clinic to arrange an appointment.
If you are still looking for Christmas cards, you could raise money for PA at the same time - https://www.etsy.com/listing/253520338/milos-wish-christmas-card?ref=shop_home_active_1
Please check the website regularly for dates for the above and for other events.
The SURE group is made up of service users and we meet every two months with a member of staff at one of the drop-ins.
All service users are welcome to come along and find out what the group do.
Service user representatives:
Portsmouth: Mike and Jane
Southampton: Morgan and Daz
Would you like to be a service user rep? We are a friendly group, passionate about improving the lives of people living with HIV. If you are interested speak to Russell, Marcela or Brian at one of the centres.
AT THE LAST MEETING WE DISCUSSED:
Visit SURE on the website - www.positiveaction.org.uk/sure/
by Peter Hellawell (Chair)
This issue of Embrace in and of itself reflects some of the sweeping changes that are washing over Positive Action and all people living with HIV in the UK.
Firstly it’s an e-newsletter. This new format allows links to information through on-line resources as never before. None of us need be ignorant about HIV as a condition. The information is all out there and, while I may need someone to help me understand the more technical stuff, I can directly access everything from HIV history to statistics on transmission risks and results of the most up-to-date drug trials.
Yet PA has always had at its core recognition of the importance of personal contact: one-to-one non-judgemental opportunities to explore diagnosis and its impact, peer support, informed education and awareness for our wider communities and, increasingly, coming together to give voice to those of us living with HIV through representation and activism. Connecting through the click of a mouse or the swipe of a screen can’t replace that.
So, while an e-newsletter is a great resource in terms of information, it doesn’t answer my personal need for social acceptance and the support of others; my need to love and to be loved.
This edition also comes out on World AIDS Day. Arguably the event is in need of a re-branding to reflect the changing nature of the condition – World HIV Day, perhaps? That aside, this is nevertheless a ready-made opportunity to raise awareness. The media, colleges and universities, event organisers all come to us for comments and supporting information.
But what about the remaining 364 days in the year? As someone with HIV I am touched by the sight of someone wearing a red ribbon and showing their support but all too often it is just for the week or even just for the day. The ribbons are soon unpinned and any overt sign of support or awareness disappears for another 12 months. But the stigma remains. While it might be gradually moving more and more into the backwaters, it’s still there… and as someone with HIV I never know how or when it’ll impact on my choices, box me in with prejudice unseen.
And don’t begin to tell me that disclosure isn’t still an issue. Just look at Charlie Sheen… Did he jump or was he pushed? And why can’t any of us – Charlie Sheen included – simply step forward and be as we are? Evidence suggests that lingering stigma may be preventing people from being tested. And were it not for late diagnoses, HIV-related deaths would be all but a thing of the past.
So – medically, physically we’ve all but licked HIV here in the UK. But mentally, emotionally there’s a long way to go.
As someone who stepped forward as a person living with HIV over 25 years ago with the privilege of chairing Positive Action (an organisation that celebrates its 21st anniversary in 2016), I see some particular challenges in the months ahead. Whether what’s needed is another quiet step forward or a dynamic leap of faith, only time will tell.
Embracing Life with HIV...
One Voice: National Conference of People Living with HIV
by Jane (SURE representative from Portsmouth)
Positively UK holds this conference every two years. It brings people living with HIV together to feed concerns and ideas into a national manifesto for change.
It is a great opportunity for people living with HIV to meet, share and get involved in discussions throughout the day. It is after all a conference for us and by us. Below is a summary of the three sessions I attended in London in September:
Peer Support - Positively UK gave a presentation on Project 100 (a forthcoming peer supoprt project) followed by discussion in small groups. Our group had an interesting exchange on the tension between the professionalisation of peer support and the need to keep old informal layers of support alive. Other concerns and ideas that came up:
Carers: What do we Want from Later Life Care - Susan Cole from National AIDS Trust (NAT) talked about their recent guide on HIV for care providers. A panel of long-term survivors reflected on growing old and living with HIV. It was a poignant reminder of the early experiences of a terminal diagnosis. Checking into Dignitas quickly came up in the discussion (something that pre-occupies my HIV-negative friends too). The fear of being unable to look after oneself is common to all of us. Other concerns highlighted were:
Heterosexual Men and Women Group - Out of 20 participants in this group, only two were men. The men dominated the discussion, but given that the women present were all quite outspoken, our silence was consensual and there was an implicit understanding they needed the space to voice their experiences and feedback on why heterosexual men are such a hard to reach group. Everyone was in agreement that:
Networking - I had an interesting talk with other attendees about setting up a patient group. One lady formed one at her clinic and spoke of how perseverance and time had grown the group. The lack of services in her area also contributed to her success as she was not replicating anything and there was a sense of group ownership by the women who attended. I realized what a lost opportunity the women’s group at Portsmouth GU clinic had been. Our group fell away with the move to a new building and the NHS re-structuring. Could I start up a group at the clinic and grow it person by person?
I briefly spoke with Susan Cole and said we would love for her to visit Positive Action in the future and give a presentation to service users.
I met new faces and re-connected with old friends. It was great to see Robert and Morgan from SURE welcomed into the UK HIV family. The conference is for all of us and our experiences and perspectives are invaluable, especially as we are from outside London.
Citizens Advice Column
Be a clever Christmas consumer...
Your Voice Counts
by Healthwatch Hampshire
We have been working hard to ensure that the voices of patients and public are heard and are able to influence and improve services. As part of our ongoing commitment we have funded a number of local projects to help improve services and gather feedback. Positive Action were one of 17 organisations that were successful and we are very proud to say that this newsletter is the result of funding from Healthwatch Hampshire.
The only way we can truly influence services is to gather large amounts of feedback from communities across the county. We would love to hear from you if you have any feedback to share on health or social care services. The more detail you can give us (for instance if it's about a particular experience, what happened, where and when it happened and who was involved), the better able we will be to use your feedback to build up a picture of people's experiences of services.
Tell us what you like and dislike. We want to hear the good and the bad. We will use people's feedback to hold services to account and to work with them to improve the way services are designed and delivered. We will never share with anyone outside Healthwatch your name or contact details without your express permission.
Visit our website at www.healthwatchhampshire.co.uk or call 01962 440262 to give your feedback. You can also visit any Citizens Advice Bureau in the county and give your feedback in person.
Healthwatch is the new consumer champion for Health and Social care services in England.
Healthwatch Hampshire is one is nearly 150 local Healthwatch organisations across the country.
Our role is to ensure that the voices of consumers and those who use services reach the ears of the decision makers so that appropriate changes can be made within the local community but also on a wider national scale.
We are an independent organisation so we are not selling anything - purely gathering thoughts, feelings and comments (both good and bad!) on health and social care issues to feed back in to the system.
We're independent, transparent and accountable and we're powerful - we have the strength of the law and the national influence of Healthwatch England behind us.
The Positive Action newsletter is sponsored by Healthwatch Hampshire.
|© Positive Action 2015|