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|September 2016, Autumn Edition
Work is contuing to analyse and respond to the consultation we undertook earlier in the year. The next steps which will inlcude further consultation and discussion with service users has been delayed, due to some additional and unexpected changes in the sector.
Please be assured that your feedback is being seriously considered and that we are progressing our plans as quickly as possible.
Eight things you need to stop saying to people with HIV
People who are HIV positive give us the run-down on some of the over-the-top and indelicate reactions they encounter on a daily basis...
To view this short BBC Three film click here
Project 100 Peer Mentoring Programme
We are so pleased to be joining the Project 100 Peer Mentoring programme. This programme has been designed by Positively UK and funded by the Monument Trust and its aim is for 100% of people living with HIV in the UK to have access to high quality peer support. To do this, Positively UK are offering to provide training to people living with HIV to develop the skills and confidence needed to supoprt other people living with HIV.
The dates and further details are still to be confirmed and are subject to a meeting on 1st October, after this it will then be promoted on our website, so please keep an eye open for them.
A win at the High Court
The National Aids Trust (NAT) won its battle at the High Court against NHS England, who claimed it did not have the power to fund pre-exposure prophylaxis (PrEP).
The High Court ruled that the National Health Service should fund PrEP drugs, saying that health officials had “erred” in declaring it was not the responsibility of the NHS. The “highly-effective” anti-retroviral drug is used to stop HIV from becoming established in the event of transmission. However the Government are fighting on. NHS England announced it would be appealing the Judge’s findings, saying his interpretation of legislation was "inconsistent with Parliament’s intention".
This decision securred much media attention, not all of which was positive and supportive which is why this one in The Times caught our eye - Women get their pill, so why not gay men too?
On the subject of women, the Huffington Post published this interesting article which considers a female perspective of PrEP - http://www.huffingtonpost.co.uk/jacquistevenson/nhs-england-decision-on-p_b_9617272.html
Southampton Pride 2016
On Sunday 28th August we hosted a stand at the first Southampton Pride to be held for 20 years. The main action took place near the Guildhall and was organised by the Stage Door bar/theatre. It was a great day, despite being a little wet and windy at times! It gave us a chance to raise awareness of Positive Action and get some public donations – all of which go toward our Community Fund.
Thanks again to all the volunteers who helped run the stand on the day – it is much appreciated!
Pride back after a 20 year gap
Prince Harry's HIV test resulted in more tests being conducted in the UK
Prince Harry was filmed live having an HIV check - https://www.youtube.com/watch?v=rL32X2pyB6Y . The message behind this broadcast is to get tested as this is now a straight forward process.
With an estimated 11,000 people in the UK unaware that they have HIV, Harry took the step of being publicly tested to help tackle the stigma surrounding the condition and the fear of testing. According to the Terrance Higgins Trust who arranged for the test, early testing and frequent testing is important because, “it’s never a good idea to be unsure of your HIV status. Testing puts you in control and, thanks to treatment, could stop you from getting seriously ill and even save your life. Perhaps your HIV status is not what you think it is. A test will let you know and if you have a ‘rapid HIV test’ you don’t have to wait days for a result".
Service users can contact Russell or Marclela to arrange a rapid HIV test for their partners who feel unable to attend clinical.
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.
Please check the website regularly for dates for the above and for other events -
Waitrose Community Matters
Vote to support PA with green tokens
During September Positive Action is a nominated charity for the Waitrose Community Matters Box in Southampton. If you shop at the Waitrose Southampton Store or know someone who does you can help us by dropping the voting token into our box.
We have received fabulous supoprt from residents in other areas so if you are able to hand deliver an application to your local Waitrose for us, please contact Ben - firstname.lastname@example.org - to receive a completed form. Thank you!
We were very appreciative to have received support and donations recently from the Farnham Waitrose store, and for those who visited our stall at the Southampton Pride 2016 event.
Our sincere thanks to you for the valuable support you have shown
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
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 thelast meeting we discussed:
SURE reps and sustainability
Board of Trustees
PA service review
I like words. Going beyond the puny pun or the desire to reward anyone who appreciates a double-entendre by giving them one, I like tracing the subtle thread of history that weaves meaning into the words we use. For years I have listed ‘philology’ as a hobby on my CV (and with a wry smile, imaged the reader turning to a dictionary to look up its meaning!)
You may well be thinking ‘OK – but what has this got to do with HIV?’
Well, with gratitude and almost a sense of disbelief, I look back over my 32 years living with HIV and realise that for most of that time (maybe 25 of those years, certainly upward of 20) I have lived a largely contented if not joyful life. I could casually put this good fortune down to circumstances mixing with my personality and, with a shrug, say ‘I am where I am and it’s just the way I am.’ But as Chair of an HIV charity, it seems remiss not to go deeper, not to try and uncover anything within my experience that might inform my role and maybe even be of use to others with HIV. I have after all consciously reshaped this column from a more formal ‘Letter from the Chair’ into Positive Experiences to allow me to draw on my own life view when framed by a positive HIV diagnosis.
So, back to words, their meanings and etymology. In the first draft of this piece, I started to write about ‘inspiration’ - an interesting word if ever there was one! Who or what has inspired me? Who or what has ‘breathed into me’, has helped lift my spirits and either restored or given me a sense of vitality?
My life with HIV has not been without its challenges. But along the way, time and again I have been inspired by both people and nature. Nature – by its very nature – has always been there: I have been inspired by everything from seeds that depend on the winter frost to germinate to mountain peaks that erode into the ocean only to rise again in timescales known only to the stars; I have drawn inspiration from the foggy day that has taught me to be patient when wilfully wanting to know which way to go next and wanting to know NOW (as the old joke goes ‘Give me patience – and quickly’!)
People too were always there – often simply waiting to guide, support and inspire me. Some of these people were living with HIV, many were not.
And the point of all this? Well, by revisiting and by better understanding the source of inspiration in my life, I find it is a place I can more easily return to – I get to know the way without thinking, particularly useful when I am otherwise distracted. Over the years I have found that I can be my own worst enemy. But I have also found that often that little bit of effort can make for such a wealth of happy returns.
So, I ask you, from where do you get your inspiration? Having found that place, I urge you to go there today and, in the words of the BBC’s Olympic coverage, ‘Be inspired’.
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 supoprt 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
Embracing Life with HIV -
A week at the world’s largest AIDS conference: AIDS2016, Durban, South Africa
By Jane Shepherd, Portsmouth service user and SURE rep
It’s 16 years since the International AIDS conference was last in Durban – when 11 year old Nkosi Johnson who was born with HIV, stood on the main stage and asked for treatment for people living with HIV (he died the following year). Today, 17 million of us are on treatment but this year’s conference was not upbeat. HIV infections are rising, 20 million people are without treatment and there is less money.
This was the backdrop to the conference. Activism was visible, audible and angry. I joined the Access to Treatment march with 6,000 other people, all wearing HIV Positive t-shirts.
In the Global Village (the area for community groups) there were stands for women, human rights, criminilsation, men who have sex with men, sex workers and transgender people. Every day there was dance, protests and music.
The conference was HUGE, with over 20,000 delegates. All scurrying from one session to the next, then queuing for coffees and toilets. I was one of the lucky thousands, thanks to a scholarship from the Global Network of People Living with HIV (GNP+). Every day I planned which sessions to go to and in-between sat in the African sun and met wonderful activist friends, old and new.
My highlights: calls for the community to be involved in prevention and treatment; PrEP (pre-exposure prophylaxis) for women, including new inventions like the vaginal ring; how to communicate research simply; how important it is that people living with HIV understand treatment; helping to run a workshop for pregnant women and mothers living with HIV, by drawing people’s ideas as a big picture on the wall.
There were so many young people – Africa is a place of young people – many of them born with HIV. The young leaders spoke articulately in sessions and demanded that they were included and heard. It reminded me that as an older person, I must mentor and encourage others to take their place.
I came away with so many ideas! My top two key messages are: sex is FUN (too easy to forget with all the fear around HIV) and activism essential.
For a longer article go to: https://www.opendemocracy.net/5050/jane-shepherd/rhetoric-meets-reality-debating-hiv-and-aids
Some Highlights of the Durban International AIDS Conference 2016
Above are some photographs of Jane's visit to the Durban International AIDS Conference 2016.
You can find official photos and videos on the conference on website. www.aids2016.org
Have Your Say
Two service user’s from Positive Action have been part of this study and found it useful, could it help you?
The 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. The advent of better antiretroviral treatment for HIV has meant that mortality from HIV has decreased dramatically in the UK. This means however, that chronic, age-related conditions associated with HIV, such as HIV-SN and cognitive impairment, are increasing in prevalence and becoming a significant disease burden.
If you are interested in in taking part please click on the link https://clinicaltrials.gov/ct2/show/NCT02555930
The Personal Impact of Austerity Measures
Laura will be speaking at the National HIV Nurses Association conference in October focussing on how has austerity affected people living with HIV and how can nurses help?
Laura intends to collect as many stories and ideas as people are willing to offer so we can inform the nurses on how best they can help.
Laura asks you to consider the following questions:
B.No. of years living with HIV:
D.Town you live in:
1.Do you have a HIV nurse in your clinic?
2.What is your current situation? How has austerity affected you?
3.How does that affect you in terms of living with HIV?
4.How do you feel HIV nurses can help you best?
To contribute, please email email@example.com by Monday 10th October. Laura will collate the responses post the anonymous summary on UKCAB before the event.
What you think 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 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 are interested in talking to NAT about this work, please contact Cheryl.Gowar@NAT.org.uk 020 7814 6758
|© Positive Action 2016|