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Winter 2015
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:

  • Basingstoke (Crown Heights)
  • Southampton (RSH)
  • Portsmouth (St Mary’s)
  • Guildford (Buryfields).

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.


Christmas cards

Christmas cards!

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


News from...


ALDERSHOT

SOUTHAMPTON

PORTSMOUTH

ALDERSHOT

  • Judi and Zoe are planning to run the following workshops to help with Coping with Stress at Christmas (Wednesday 9th December), How to Get a Good Night’s Sleep (January), Coping with Stress and Anxiety (February) and How to Build Confidence and Self Esteem (March).
  • Elena Eveleigh - the Education, Training & Employment Co-ordinator from Surrey will be visiting the Centre on Friday (4th December) to talk about Internet Scams.
  • 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.
  • Dan Clerkin from the Solent Sexual Health Promotion team will be available on Friday 11th December to discuss your questions about sexual health, inlcuding chem sex.
  • Contact Marcela for more information or to book appointments - marcela@positiveaction.org.uk

SOUTHAMPTON

  • Katrina Humpreys is available  to meet you in the Centre if you have questions about your health or medications.
  • Lisa is continuing to regularly create delicious suppers for drop-in on Thursdays.
  • 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.

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 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:

  • HIV and Aging talk at Aldershot 11 November.
  • Xmas Social coming up at Southampton 17 December.
  • Feedback from Solent NHS Care and Treatment meeting.
  • Getting a new cooker so we can guarantee scrummy food comes out of it.
  • Trying to network Southampton’s PCs to the printer.
  • Treatment as prevention: Do we all know what this is? What are the messages around safer sex? Are we having this conversation with our HIV doctors?
  • Looking forward to 2016 …

Visit SURE on the website - www.positiveaction.org.uk/sure/


Positive Experiences

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.

Peter H.



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:

  • The emphasis professional training could remove us from our roots

  • Danger of peer support workers filling the gap created by cuts to support workers?

  • Should we advocate for paid work or encourage volunteering?

  • Identify receptive clinicians and ask them to leverage support for peer mentors

  • Encourage in-clinic peer mentoring as a means to connect people to community

  • Match people with similar backgrounds

  • Do not forget the role of group peer work

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:

  • Complexity of HIV care and co-morbidities will be compounded by dementia

  • Confidentiality may be compromised in health settings and in families

  • Care workers are not trained to work with HIV.Will national guidelines be implemented in care homes?

  • The loss of dedicated community nurses in HIV teams will impact on social care

  • Many of us do not have children to advocate for us; could this role be offered at a community/charity level?

  • We could be partnering with other chronic conditions and old age advocacy groups

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:

  • HIV awareness targeting of BSM and MSM communities is short-sighted and awareness must be raised among everyone

  • Investing in people to do outreach work would pay dividends

  • When it comes to services, we need to integrate rather than separate. And as a community we need to be more inclusive

  • It helps to meet peers who are similar, especially earlier in diagnosis

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

Citizens Advice Column

Be a clever Christmas consumer...

  • The new Consumer Rights Act came into effect 1 October 2015. It’s worth understanding what your new consumer rights entitle you to before you buy, particularly if you are shopping for expensive items that you haven't bought before. Visit https://www.citizensadvice.org.uk/about-us/how-citizens-advice-works/citizens-advice-consumer-work/the-consumer-rights-act-2015/
  • Cards longer than 25cm, wider than 16.5cm, thicker than 5mm or heavier than 100g need a costlier Large Letter stamp. If you use the wrong stamp the recipient may have to pay a surcharge for incorrect postage. If sending cards in coloured envelopes, write the address on a white label.
  • If you’re buying from an individual seller on an online marketplace, many of your consumer rights don’t apply. Items should be as described, but a private individual has no legal duty to inform you of any faults or to offer a cancellation period. Read the product description and the seller’s return policy carefully.
  • The Consumer Rights Act states that terms and conditions must be prominent, so important terms hidden in the small print may not be compliant. Check for hidden extras or any additional costs in any credit agreement or contract. Check for information on delivering goods or missed deliveries of goods.
  • Prevent damage in transit with padded envelopes or bubble wrap. Send valuables with insured services like Royal Mail’s Special Delivery service so you can claim compensation if your item is lost or damaged. For more general items up to £20 request a free Certificate of Posting from the Post Office.
  • Second class post is more cost effective and has a better delivery record at Christmas - if you plan ahead second class is far more likely to be delivered in three working days than First Class is in one working day
  • The short term "right to reject" enables you to return goods to a trader within a 30 day period for a full refund if your core rights have been breached. The burden of proof will be on you to prove that the goods are not satisfactory, fit for purpose or as described.
  • You can return most goods that you order online for up to 14 days after you received them for a full refund. You’re allowed to handle and inspect what you’ve bought before returning, but the trader may deduct some money from your refund if you’ve used the product.
  • Most sellers give instructions on how to return items, and often include returns labels with your order. You usually have 14 days to return the item after telling the seller - check your terms and conditions for how long you have.
  • The seller has to refund the cost of standard delivery for the item. If you chose a more expensive delivery option, you’ll have to pay the difference.
  • You don't have to return the item in its original packaging, but you do need to make sure it’s packaged in a way that means it doesn’t get damaged. Sellers can ask you to pay if something gets damaged because it wasn’t packaged properly or if you’ve reduced the value of the item.
  • The last Royal Mail posting dates for sending signed for items in time for Christmas are Saturday 19 December, second class and for Special Delivery Wednesday 23 December. Royal Mail will not be delivering or collecting post on Christmas Day, Saturday 26, Sunday 27 or Monday 28 December.
  • The consumer service can advise on consumer problems or give pre-shopping advice to reduce risk. Phone 03454 040506  (Welsh-speaking adviser 03454 040505) Monday to Friday 9.00am to 5.00pm, except Bank Holidays.

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

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