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December 2016, Winter Edition

Positive Action & Solent NHS win Innovation Award!

BB DZ Westminster
Houses of Parliament
Web Chat Mock up
Draft of the website access page
HPE
HPE's Twitter announcement


Public Health England’s National HIV Prevention Innovation Fund is awarded to projects that offer new and innovative ways of delivering HIV prevention, in an effort to turn around the ever increasing numbers of new HIV diagnoses. The successful projects all target groups at high risk and are supported by their local authority.  Positive Action's bid was recognised as being innovative in approach and we are excited to be developing this service with the team at Solent NHS.

On 3rd November Brian Bridger (Services and Development Manager at PA) and Debbie Zimmerman (Head of Sexual Health, Solent NHS Trust) were invited to the Houses of Parliament to hear the winners announced. 

The new service is in direct response to the increasing number of people living with HIV in employment and education. Positive Action and Solent NHS Trust will be creating new ways of accessing information, advice and support. By developing web-chat and video-chat appointments which can be accessed by PCs, tablets and smart phones, we anticipate that access to some medical and support appointments will be much easier to achieve. People living with HIV in Hampshire will be able to receive information about medication, test results, safer sex and relationships support without needing to physically attend clinical appointments.  They will have access to web based support from their medical team, peers and PA.

We will shortly be asking for service users to help us to test this project. If you would like to be involved, please make contact with the Centre or your clinical team.



HIV STIGMA: NOT RETRO, JUST WRONG!


Red ribbon

"This World AIDS Day, help us put HIV stigma firmly in the past where it belongs, by joining our Not Retro, Just Wrong campaign." This is the message of the National Aids Trust's 2016 World AIDS Day campaign and one echoed by so many living with HIV.

Being diagnosed with HIV today means something very different than it did 20 or 30 years ago. HIV is no longer a death sentence. However, people’s attitudes can make living with HIV really hard. Some things from the 1980s and 1990s are worth revisiting, but HIV stigma isn’t one of them. It’s time to end HIV stigma. Take a look at this year's campaign message by clicking here

In 2015 the Stigma Survey UK aimed to identify whether people living with HIV in the UK still experience HIV-related stigma and discrimination, and to describe how such stigma affects their daily lives  If you would like to see the outcome of this survey please click here 

Positive Action will be marking the day by engaging with the community to educate, dispel myths and help to reduce the stigma that still impacts on so many of our community's lives. We'll be keeping our website up to date with activities and campaigns, so please take a look here



The UK AIDS Memorial Quilt Conservation Partnership

On Display for World AIDS Day

The International Names Project AIDS Quilt is a memorial project started in San Francisco in 1985 that has spread worldwide, as friends and loved ones have created panels and testimonials to remember those they have lost to HIV.

As well as a creative means of remembrance, the AIDS quilt aims to educate people about HIV prevention, fight stigma and bring home the message that this is no time for complacency.

Memorials of over 300 people who died from AIDS can be found on the UK Quilt.

Every effort has been made by the National AIDS Trust to locate all the panels from across the UK and bring them together physically and virtually for World AIDS Day on 1st December.

The quilt will be available for you to see when it is displayed around London, if you would like to see it and follow its journey with dates please click here 

There is speculation that eventually the Quilt could be both restored and stored by the Victoria and Albert museum as a piece of "social history".

The quilt can be summed up taking the words from the website http://www.aidsquiltuk.org/  “The AIDS epidemic and the appalling number of lives taken by it was all too often portrayed in the media as being about a faceless mass of unknown people. In truth, of course, it was an all too large patchwork of individual stories; of real people with names and lives, with loved ones and families and careers and talents never quite allowed to reach fruition. How better to represent that than through the AIDS quilt, which gives individuality back to so many people who risked becoming mere statistics?...”

Jay Rayner

Quilt patch one of many


(PrEP) Another win! This time at the Court of Appeal

PrEP

In our previous edition we reported that there would be an appeal to the High Court against the earlier decision in favour of NHS England, who claimed it did not have the responsibility to fund pre-exposure prophylaxis (PrEP).   An appeal was heard and on the 10th November and the Court ruled, that the NHS in England does indeed have the power to fund the provision of PrEP which would help to prevent HIV infection in people at high risk of the virus.

According to the BBC an estimated 14,000 people would be eligible for (PrEP) in England. Campaigners and the Local Government Association, which represents local authorities, said they were delighted by the decision. 

NHS England said the judgment confirmed that it had the ability, but not the obligation, to fund (PrEP).  An NHS spokesman said it would now, “formally consider whether to fund the drug; discuss with local authorities how NHS-funded (PrEP) medication could be administered by the sexual health teams they commission and, will immediately ask the drug manufacturer to reconsider its currently proposed excessively high pricing and, will also explore options for using generics."

A cautionary note is it is still not certain that it will be provided on the NHS however it is available to purchase legally in the UK. If you are considering or are taking PrEP, please speak to your clinical team about routine monitoring and sexual heath check-ups.


HIV SERVICES BUDGET CONSULTATION

Southampton City Council is consulting on a new Medium Term Financial Strategy for 2017/18 to 2020/21, together with draft budget proposals for the next four years. These set out the approach to closing the budget gap and ensuring they can deliver a balanced budget.

Over the last five years, the City Council has made £92.4 million savings but by 2020/21, they now have to save another £42.3 million.

There are many budget cuts proposed including one which currently funds PA's HIV support services in the City. Southampton residents are able to respond to the proposals by completing their questionnaire, available here  


Farewell to Groundswell

After almost thirty years of supporting people living with HIV in Southampton and Hampshire, Groundswell has sadly closed its doors for the last time.

Positive Action have worked closely with the Groundswell team since 2008 and were privileged to be invited to join their commemorative event which also celebrated the wonderful support they have been able to provide to so many. We were also very touched that they acknowledged our collaborative working with a delicious cake with the PA logo on it.

We wish the Groundswell Trustees, Jan and Julie all of the best for the future.

PA/ Groundswell celebration cakes


My HIV, My Rules, My Journey

This campaign has just launched and is titled My HIV, My Rules, My Journey it is aimed at helping people living with HIV to navigate their lifelong journey with the condition.

To view launch video click here

For the campaign website please click here

My HIV Journey


In your Area...

Positive Action staff are available to meet with you in sexual health clinics and other venues in the community.

Marcela regularly attends the Guildford (Buryfields) clinic, 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.



News from the Centres


Aldershot

Southampton

Portsmouth


ALDERSHOT

  • Our staff team are available in the office Monday to Friday 9:30 to 17:30 and appointments with Marcela can be made for any work day, or outside these hours by prior arrangement.

  • Friday drop-ins continue every week (from 10:00 until 16:00) with lunch served at 1pm.

  • .Marcela is available for appointments in the Centre or in the community on Monday evenings.

  • Judi and Zoe continue to offer emotional wellbeing support every other Friday.

  • Ruth Sim (from Buryfields Clinic) and Julie Barker (from Crown Heights and Aldershot Clinics) are available to meet with you in the Centre if you'd like to discuss your health or medications.

    Contact Marcela for more information or to book appointments - marcela@positiveaction.org.uk

    SOUTHAMPTON

  • Katrina West (Humpreys) is available to meet you in the Centre if you have questions about your health or medications.

    Contact Russell for more information or to book appointments - russell@positiveaction.org.uk

    PORTSMOUTH

  • Jane Butt and Ynez Symonds are available at drop-in to discuss your mental wellbeing, your physical health and your medications.

    Contact Russell for more information and to book appointments - russell@positiveaction.org.uk


Dates for your Diary

Diary dates

Please check the website regularly for dates for the above and for other events -

http://www.positiveaction.org.uk/diary.php

Thank you

Local Community Support

We were very appreciative to have received support and donations recently from The Stage Door theatre and bar, both the Portswood - Southampton and Basingstoke Waitrose stores, Buryfields Sexual Health Clinic in Guildford, our own Portsmouth Positive Action Drop-in and for personal donations.

Our sincere thanks to you for the valuable support you have shown.

SURE Information

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:

Aldershot: Robert

Portsmouth: Mike and Jane

Southampton: Morgan

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.

Positive Experiences

Having HIV is life-changing. And I am generally comfortable acknowledging that fact: acknowledging that my HIV has had - and continues to have - a deep impact on my life.

That said, sometimes for no end of reasons, I’m tempted to limit that impact – either by degree (seeing it, say, as merely a medical challenge) or limit its impact in terms of time (restrict it to the past – as if my HIV could be boxed away and buried like some 1980’s time capsule). Now and then there have even been times when I have wanted to celebrate its universal impact on me; times when I’d have happily danced down the high street singing of the joyful appreciation of life that I have found directly as a result of my HIV.

Most of the time though my HIV just is. It’s there: something within me that I’ve never actually seen and would struggle to visualise, if I’m honest. Every day I wake, eat (sometimes skip) my breakfast and go about my day without need to focus or even think on my HIV. As the designated hour when I take my meds it must be in my mind but it won’t be dwelt on, it’s hardly the time to stop and explore the philosophical or spiritual implications… I simply take the pills and get on with life.

As chair of Positive Action and as an HIV trainer I get additional opportunities to speak (and write) about my life with HIV. But were my circumstances different I can easily see how, other than my quarterly conversations with my HIV consultant, I could go months – even years – without openly talking about it.

That doesn’t seem right. It also doesn’t seem wise or even healthy.

I began by acknowledging that HIV has had - and continues to have - a deep impact on my life. And yet, in practice, I can give it so little room in my thinking. I’m ‘fine’ today but - if the past is anything to go by - I might do well to be more proactive in managing my life with HIV; I need to stay more on top of things if I am going to avoid some circumstance or event catching me unawares and taking me to a place where I am anything but fine.

I regularly carry out maintenance: the housework, a bit of gardening; I have the car checked and serviced, I even take my HIV meds (knowing that they maintain my physical health) – so maybe I need to be more on the ball when it comes to maintaining my emotional, mental and even spiritual wellbeing as someone living with HIV.

Maybe I need to get along to some of Positive Action’s workshops or discussion groups. Maybe I need a peer mentor, or could become a peer mentor.

Maybe – just maybe – I could see such an approach not just about maintenance but about improving my life: the ultimate shift where I consciously go from ‘surviving’ to thriving’ with HIV.

And maybe, if you’re also living with HIV, some of what I have written might be the nudge you’ve needed to really begin to take control of your life with HIV.

Coming from a place of love and respect, I wish you well.

Peter H.


Looking for Help Online?

You might be aware that we don't currently have a CAB Advisor in-house. You may not be aware however, that there is a lot of information available on-line to support individuals to help themselves.    Visit https://www.citizensadvice.org.uk/ to see how easy it is.

There is also an option where you may "Webchat" with a member of the general CAB team. 

For more help, please contact Russell or Marcela

Citizens Advice

Have Your Say

Have Your Say

King's College London HIV Survey

Anthony Harison PhD is investigating the experience of taking anti-retroviral therapy in people who are HIV positive.  If you would like to complete the survey please click here

Also if you have any questions you can email: anthony.harrison@kcl.ac.uk or leave a message on 07936-448-926.

 

New NAT blog: Highest ever drug misuse deaths

Following the news that Glasgow will open the first safe injecting rooms in the UK, Daniel asks if we're doing enough in England and Wales to meet the health needs of people who inject drugs:

 

What are the key issues for trans people, who are either living with HIV or are at risk of acquiring HIV?

NAT is doing a piece of research work to establish existing evidence about HIV risk for trans people. As part of this work NAT would like to talk to trans people as well as organisations or individuals who advocate for trans people. They are interested in hearing what you think are the key issues for trans people, who are either living with HIV or are at risk of acquiring HIV.

 If you would like to complete the survey please click here

If you are interested in talking to NAT about this work, please contact Cheryl.Gowar@NAT.org.uk 020 7814 6758

 

Two service user’s from Positive Action have been part of this study and found it useful; could it help you too?

These clinical trials involve HIV associated sensory neuropathy (HIV-SN) which is a frequent complication of HIV infection, affecting between 20 and 57% of infected individuals.

If you are interested in further information or in taking part please click here

Stop the cuts
© Positive Action 2016