19/9/14
NAT have been asked by the Chief Medical Officer to remind anyone living with HIV in the UK that they are entitled to a free annual flu vaccination. People with immunosuppression are at particular risk of severe illness like pneumonia if they catch flu and getting vaccinated helps protect against the risk of some serious complications flu can bring.
You can find out more about the flu vaccine using this link http://www.nhs.uk/conditions/vaccinations/pages/flu-influenza-vaccine.aspx
1/9/14
THT are looking to recruit new trustees. The application process is set out in the pack which can be accessed from the link below.
www.tht.org.uk/newtrustees
28/5/14
Positively UK are launching a new social group for people living with HIV aged 50 or older. The first meeting takes place at 7pm on 28 May.
For more details email [email protected] or call 020 7713 0444.
17/5/14
WOMEN LIVING WITH HIV:
We want to hear your views on your sexual, reproductive health and human rights to inform the World Health Organisation's Guidelines update!
Please go to this website to find out more:
https://www.surveymonkey.com/s/VL987NX
1/5/14
Positive21, the North London-based peer support group for gay and bi sexual men of all ages living with HIV, is pleased to announce an expansion of its services, with the launch of its new weekly peer support group in South London commencing 20th May 2014.
Established in 2012, Positive21 operates out of GMFA’s North London offices every Monday evening, but due to its success it will now also be facilitated every Tuesday evening, in a discreet location 3 minutes from Southwark Underground Station. The group’s success is largely attributed to its safe, confidential environment and the fact it is selectively accessible by people from across London.
Positive21 now operates in both locations from 6.30pm – 8.30pm we do not have an open door policy. To access the group, further details are available at www.positive21.org.uk
12/2/14
Kirklees Public Health are preparing a tender for a new, integrated sexual health service for Kirklees which will bring together contraception and family planning services with GUM / sexual health services, with prevention, outreach and education playing a bigger role.
Healthwatch Kirklees are working with Public Health to carry out a consultation exercise around Sexual Health Services in Kirklees. The aim is to gather as many views as possible to make sure the specification of the new service reflects needs of the population. A survey is available online https://www.surveymonkey.com/s/SG92LH2 and I wondered if it would be possible to bring this survey to the attention of your service. Paper copies are available if you feel people would prefer to complete the survey that way. I’m also happy to come along to any groups you may have to facilitate a small focus group if you feel this would be appropriate.
Staff, friends and family are also welcome to complete the survey if they live or access services in Kirklees. The survey is confidential and people do not need to leave their name or contact details.
21/11/13
Join the campaign to save Derbyshire Positive Support
http://www.change.org/en-GB/petitions/cabinet-members-derby-city-derbyshire-county-councils-don-t-let-hiv-support-and-prevention-slip-off-the-public-health-agenda?share_id=AvuvedKZAh&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition&ref=nf
25/11/13
There are events taking place across the country this year to mark World AIDS Day. You can see them all here:
http://www.worldaidsday.org/events/
31/10/13
This year, the Terrence Higgins Trust Press Office will be using World AIDS Day (December 1st) as an opportunity to raise awareness of HIV among the wider general public and dispel some of the myths that still persist around the condition. If you're living with HIV in the UK, please fill in and share this short survey so that we can raise awareness and challenge myths about HIV this coming World AIDS Day. It is our voices and experiences that will make the difference: https://www.surveymonkey.com/s/2M6DFKL
26/9/13
Your medical records and the NHS survey
NAT, supported by BHIVA, is looking at current policy and practice around how patient records of people with HIV are handled in the NHS. We will produce a clear guide for people with HIV explaining how their records are used and shared and their rights to confidentiality. We will also publish a policy report making recommendations for change if we come across any areas where either confidentiality or information sharing need to be strengthened. We need to hear from people with HIV - to find out what you currently know about your patient records, your experiences around how your personal medical information is shared in the NHS, and your views.
Anyone living with HIV who is being seen for HIV care in England can fill in the confidential and anonymous survey. We are not looking for experts on the issue - simply a range of patient experience. In completing the survey you will make a really valuable contribution to ensuring we have a 21st century medical records system for people with HIV - which keeps you well and respects your rights.
Click here to go to the survey.
17/9/13
Welsh Govt: Giving people greater voice and control on social services
Recruitment has begun for a new citizen panel made up of adults, young people and children who use social services, who are carers or who have an interest in social services in Wales.
For two years, the group will meet regularly to discuss changes and developments in the social care sector. Their views and decisions will feed in to the strategic leadership work of the Deputy Minister's National Social Services Partnership Forum, giving people greater voice and more control over the services they receive.
The panel will contribute to the development of social care policy and its delivery at an important time in the radical transformation to make services in Wales sustainable.
The Social Services and Well-being (Wales) Bill is at stage one of the National Assembly for Wales' scrutiny process and it will be the legal framework underpinning these major changes.
15/9/13
It is good to see more attention being paid to older people who are living with HIV (article here). Thankfully medical advances in HIV treatment now mean people living with HIV who are diagnosed on time can live a near normal life expectancy. However feedback we have received from people living with HIV has shown that they have growing concerns about the care they will received in their older years. In response NAT has started a new two-year project to improve standards of care provided to HIV positive people - whether in residential care homes, supported care or in their own homes.
1/9/13
HIV Hate Crime: Appeal for Evidence
No one should be the victim of a crime because they have HIV. This is an example of 'hate crime' and laws have been introduced to deter such crime and punish more severely those guilty of it.
The Law Commission reviews laws at the request of the Government and recommends improvements to their content.
The Law Commission is currently reviewing the laws around hate crime - NAT wants to ensure that hate crime against people with HIV is taken seriously, that the laws against hate crime are appropriate, and that they are implemented effectively.
To make the best case, we need anonymised examples of where people have experienced hate crime because they are living with HIV.
It could be any crime, as long as it is believed that the crime was motivated by HIV hatred/hostility or demonstrated HIV hatred/hostility. But some examples include:
assault
destroying or damaging property
harassment
domestic violence
putting you in fear of violence
telling others about your HIV status, or threatening to do so, when it amounts to an act of harassment
blackmail
We appreciate it can be upsetting to relive such experience. But if individuals do feel able briefly to share their experience by email it would greatly help our work in strengthening the legal response to HIV hate crime. Simply set out the basic facts about the crime you experienced and why you believe it to have been motivated by HIV hatred/hostility - if the crime was investigated by the police, and if it was prosecuted in the courts, it would also be very useful to know if you believe the hate crime element was acknowledged by police/courts and reflected in the way the investigation was handled, sentencing etc.
I would very much appreciate it if you could email me at [email protected] by Thursday 12 September.
27/8/13
Call for London Activists - Recruitment to HIV Treatment Services Group
Calling users of HIV Treatment Services in London Commissioners want to recruit up to 12 people who are using HIV Services in London to support the HIV Service Review HIV Steering group and become part of a service user / patient representative ‘shadow’ group .
http://www.ukcab.net/forum/index.php?topic=1908.new#new
15/7/13
Naz, Positive East & Positively UK are seeking your help to evidence the impact of changes to social security benefits and cuts to support services, for people living with HIV. They have teamed up to gather information to highlight the impact with commissioners of services and local and national policy makers. If you are living with HIV please help them to do that by completing this simple questionnaire. It will only take you 15 minutes at the most to complete and you could also win £50 in their prize draw.
9/5/13
LOOKING FOR MEMBERS FOR THE KIRKLEES LGBT HISTORY MONTH GROUP
We are looking at setting up a brand new, independent community group to organise and celebrate the LGBT History Month during February each year, starting in 2014. We would welcome anyone, LGBT and non-LGBT, who is committed to the ethos behind the LGBT History Month and who wishes to contribute towards celebrating the LGBT community in Kirklees.
We intend to have a constituted group which is totally independent and which would apply for funding to stage one or more events each year to mark the history month.
What kind of events would these be?
The group will have complete control of everything that it does and its members can suggest any type of event that they can think of. For example:
· We are looking at doing a project around the Holocaust and how it affected the LGBT communities at the time.
· Another idea is to link with the Lawrence Batley Theatre and look at possibilities in regards to LGBT or LGBT friendly shows/performances/acts to bring into Huddersfield during February.
· Further ideas are a film festival, an art exhibition, an evening of poetry/literature, a party of some sorts, etc.
· The possibilities are endless!
How would this group work?
The group has had an initial meeting and, although small in numbers, we have great enthusiasm, skills and experience. It would be really good to have more members with any skill that they could bring; people who are creative, good with ideas, or good with project management or marketing skills; anyone who is good at event planning and event management or anyone who cannot think of any of the above skills but that is willing to contribute in any possible way!
The group would initially meet in town centre Huddersfield on a Monday late afternoon, around 5.30pm. This can be changed if necessary. Initially our meetings would be monthly and we have already started to look into pots of funding we could apply to fund the events.
This is definitely for me!
The get in touch with us and get involved. Email us at [email protected] or [email protected]
For more information on the LGBT History Month you can visit www.lgbthistorymonth.org.uk
We really would like to hear from you and if you have any comments, suggestion, question, idea (no matter how crazy it may sound) please do let us know!
Many thanks
Javier
Javier Santana-Acosta
Hate Crimes and Community Tensions Officer
Communities and Leisure
Community Safety
Civic Centre 1
High Street
Huddersfield
HD1 2NF
T:01484 416295
E:[email protected]
19/4/13
HAVE YOUR SAY: IMPROVING PATIENT EXPERIENCE IN THE NHS
The Clinical Reference Group (CRG) for HIV Specialist Services is currently launching a new commissioning tool, the Quality Dashboard, to measure the quality of HIV care in the NHS. The Dashboard will include a number of Patient-Reported Experience Measures (PREMS) which will be used to measure the quality of HIV care from the perspective of the patient.
We want to know what matters most about your experience with HIV care, to help us shape and choose these measures. This is a unique opportunity to influence the way NHS HIV specialist services are developed and ensure they are suitable to the needs of PLHIV.
Public Health England* and UKCAB are holding an open consultation meeting on 30th April from 6-8pm at the Aeonian on 5th Floor, 211 Old Street, London EC1V 9NR. In this meeting we will discuss patient experience in depth, and consider whether existing NHS patient experience frameworks can be modified to reflect the HIV patient experience.
A light dinner and tea/coffee will be provided.
If you want to attend the meeting, please RSVP to Meaghan Kall at [email protected]
*formerly the Health Protection Agency
9/4/13
Positively UK is working on a new initiative to tackle HIV-related mental health issues, in partnership with Janssen. We are launching an online survey for people living with HIV to explore their perceptions on how mental health impacts quality of life, treatment adherence and other related issues. To increase participation in the research, we hoped you may be able to distribute the information below to your members? The survey only takes a few minutes to complete:
http://www.surveymonkey.com/s/PositiveUK
The findings of the survey will help raise awareness and understanding of HIV-related mental health issues and improve services. Findings of the survey will be published in a report for release at the Conference of People Living with HIV planned for September (more details on this to follow); alongside a series of sub-reports for each region, providing agencies and the community with information they can use at a local level.
12/3/13
CHIVA are please to announce they are accepting applications for their 2013 support camp for young people with HIV. 30th July - 3rd August.
To apply for a place you need to be living with HIV in the UK, aged between 13 - 17 on the 30th July 2013. CHIVa will cover costs and travel arrangements. For more information go to www.chiva.org.uk/camp/index.html
8/3/13
Ending Violence against women is critical to Ending AIDS:
Press Release from the UN
http://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2013/march/20130308iwd/
4/3/13
How involved are you in your HIV care? What is the impact of treatment on your day-to-day life?
Please complete BASELINE's online survey.
We’d be grateful if you could forward the link to your networks.
The survey takes just ten minutes http://baseline-hivcare.kantarhealth.com/wix1/p1572343412.aspx
22/2/12
DrEd Sexual Health Report:
The DrEd Sexual Health Report Card is the first annual measure of all UK universities sexual health facilities. The report card calls attention to the state of sexual health on campuses nationwide by ranking them according to accessibility of sexual health resources and information available to students.
https://www.dred.com/uk/sexual-health-report.html#.USeoAWd9wrA
19/2/13
CHIVA are recruiting volunteers for support camp, taking place 29th July - 3rd August. For more information see
www.chiva.org.uk
15/2/13
The Sophia Forum has launched a report about the relationship between GBV and HIV
http://www.sophiaforum.net/events/launch-of-report-on-gbv-and-hiv-in-england.html
29/1/13
AHPN has just published it's policy position:
http://www.ahpn.org/Upload/page/128_AHPN_Policy_Position_2013__Final__165.pdf
10/1/13
Patient Group Forum:
The Harrison Wing Support Group is holdng a forum on Tuesday 22nd January at St Thomas' Hospital at the South Wing Theatre at 6pm. The forum will be faciliated by Simon Collins of i-Base and the topic is HIV and ageing. Refreshments will be provided. Please contact Julia Boosa at [email protected]
10/1/13
GHT Saturday Space 19th Jan 12pm, Manchester:
For further information contact Lee on 0161 274 4499 or email [email protected]
18/12/12
As part of a programme of work funded by Viiv, Terrence Higgins Trust is holding a seminar on HIV & Ageing in London on the afternoon of Wednesday January 9th.
The aim of the Seminar, which will concentrate on the social care and community support aspects of growing older with HIV, is twofold;
firstly, to outline the findings presented at the World AIDS Conference in Washington this summer and from recent trips to San Francisco and Toronto to explore the issue
secondly, to discuss the implications of these and all our current experiences for future social care and community support services, in both HIV organisations and in generic social care services
Please contact [email protected] if you want to attend the seminar. Places are limited, so please only book if you genuinely intend to be there (always allowing for travel and weather at that time of year). Full details will be sent before Christmas to those booking.
18/12/12
10/12/12
This Call to Action was developed by a group of passionate and committed people living with HIV [including me!] from every region of the world attending the Global Advocacy Agenda Implementation Meeting in Marrakech, Morocco, in November 2012. With this call, the group hopes to re-energise the movement of people living with HIV once more into a movement which advocates in solidarity to effect change for the entire community. We ask that individuals, organisations and networks of people living with HIV and all those that support our advocacy to endorse this Call to Action.
www.hivadvocacynow.org
26/11/12
UK & Ireland HIV community grants 2013, sponsored by Gilead
Gilead is proud to announce the opening of 2013 HIV community grants application process.
The grants are aimed at supporting HIV patient and community groups or organisations. A total to up to £125,000 are available for core funding. or project specific funding. Please contact [email protected] for more details
20/11/12
With World AIDS Day approaching, now is a critical moment to reflect on what has been achieved in the response to HIV, and what more needs to be done. AHPN is working with the UK Consortium on AIDS and International Development, to support their campaign: Why Stop Now? The campaign is working to encourage the UK government to both develop a blueprint for international leadership in the HIV response, and to develop a UK strategy, to replace the strategy that expired in 2010. I hope you will also join the campaign: the more we join our voices the louder we will be heard.
Both in the UK and globally, we have seen huge progress since HIV was first identified over 30 years ago. A tipping point in the epidemic is now within our reach. And yet there is still so much more to do. Now is the time for Governments, including the UK, to ensure that we are investing enough funds, in the right interventions for the right people. Why stop now? We want a generation where no one dies of AIDS, where no one gets HIV, and where the rights of all people living with or affected by HIV are upheld. If we scale up the response now, and see the tipping point passed, we can save billions in future investments and countless lives.
There are 3 ways to get involved:
1) Take action: online by signing the e-action at www.whystopnow.org and in the community, using a grassroots supporter packs (action cards, stickers, MP briefing) – to request packs email [email protected]
2) Get your organisation to join the conversation with messages & photos via #whystopnow (photos in support of Why Stop Now? will be displayed at the parliamentary engagement events).
3) Take part in Consortium events: join the World AIDS Day stunt on 27th November. Join the Consortium to demand the UK develops a blueprint! On the 28th November join the MP Lobby in parliament to MPs about UK civil society’s approach to the future of the AIDS response. Contact [email protected] for details of both events.
Clear progress has been made. Why Stop Now?
Take action this World AIDS Day at www.whystopnow.org #whystopnow
Best wishes
Jacqui Stevenson
20/11/12
Free counselling service at the Brunswick centre.
For more information email: [email protected]
20/11/12
CARA Trust Update:
Thanks to generous support from MAC AIDS Fund we’re pleased to let you know about a new programme of work from Cara Trust. Focused on the needs of people living with HIV who have no recourse to public funds, this will primarily be about developing a series of click-able hyperlinked e-resources containing essential information on the need areas outlined below.
This has come about in response to both our own experiences and those of colleagues we’ve spoken with regarding meeting the needs of this client group.
We intend to share these resources with you, our colleagues, and we might get in touch to ask whether you have any relevant information or contacts for potential inclusion. However, this is a time limited project, so we won’t have time to contact everyone. If you have information that could be included please, contact us at the email below.
Thanks.
Purpose
Supporting people living with HIV who have no recourse to public funds.
Specifically in relation to:
Food & Nutrition
Research and produce a Food & Nutrition e-resource that enables clients, volunteers, social workers and staff to easily understand where to access free food in different areas of London. This will make use of hyperlink technology and be easy to update and share with other organisations.
Provide a small number of emergency food grants as part of an appropriate referral service e.g. 2 x grants àreferral to Food Chain àreferral to Food Banks.
Research and produce a Housing & Homelessness e-resource enabling the same groups to easily understand where to access housing and shelter in London, particularly for individuals who have no recourse to public funds. This will make use of hyperlink technology and be easy to update and share with other organisations.
Housing & Homelessness
Research and produce a Housing & Homelessness e-resource that enables clients, volunteers, social workers and staff to easily understand where to access information about housing and homelessness in London, particularly for individuals who have no recourse to public funds. This will make use of hyperlink technology and be easy to update and share with other organisations.
Health entitlements
Research and develop expertise about health entitlements and access or referral points for both documented and no recourse migrants with HIV. If results are suited to a similar e-resource then produce.
Immigration, residency and legal access
Research and develop expertise about residency issues and legal referral points for undocumented African migrants and those who have failed in immigration applications. If results are suited to a similar e-resource then produce.
One-to-one support
Provide an advice, advocacy and referral service using the above resources and knowledge.
Scale up Cara’s small grant application support service, by training and supporting an additional two volunteers.
For more information please contact [email protected].
To refer a service user please contact [email protected]
20/11/12
’HIV Life Assurance Survey 2012’
Unusual Risks, the medical financial advisers are today announcing the results of their HIV Life Assurance survey
2012.
After contacting all of the major Life Assurance providers in the UK, they can now report that 66.6%* of insurers servicing Independent brokers are now offering some form of HIV Life Assurance.
As a separate part of their survey Unusual Risks have also discovered that even though 40%* of bank assurers are now stating they offer HIV Life Assurance, the reality is that very few of their actual offers of insurance are being taken up. The main reason for this is that bank assurers do not offer any indication of terms prior to a client making an application.
People living with HIV therefore are being asked to complete applications, submit to medicals and blood tests before any accurate indication of cost is offered by bank assurers. The needs of HIV Positive people are not being met
by bank assurance companies and HIV Positive people should seek specialist advice before applying for HIV life assurance.
If you require more information on HIV Life Assurance or Mortgages please contact Unusual Risks Mortgage &
Insurance Services by phone 0845 474 3075, or by email at [email protected] and on the web
www.unusualrisks.co.uk
19/11/12
BASELINE 14 is out now.....
Visit www.baseline-hiv.co.uk
In this issue:
• We look at the current hot topic in HIV; Ageing – and ask does it speed up the ageing process?
• We speak with three women who live openly with HIV and discuss the particular challenges facing women in the UK today.
• We speak with two young women who have been living with HIV since birth. We were so inspired by their positive outlook and commitment to help others with HIV.
• Tom Matthews asks why the focus of World AIDS Day has never been on gay men.
• We file the first in a series of reports from Africa. In Kenya, we find prevention, treatment and care programmes are rapidly expanding.
• NAT report on stigma in the funeral industry.
• Plus the usual news and views from Chris O’Connor, Dr. Joseph Healy and Martin Jones.
Thanks to everyone who contributed to the magazine, to our advertisers and distributors and our readers.
Join BASELINE at one of these World AIDS Day events below as we remember people we have lost to HIV/AIDS and celebrate those who are Living with HIV, on Saturday December 1st 2012.
http://www.madtrust.org.uk/
http://worldaidsdaybirmingham.org.uk/
http://
19/11/12
The new HIV Justice Network website and newsletter launched this week. Visit www.hivjustice.net/#subscribe and sign up for our newsletter.
19/11/12
The first National HIV Testing Week takes place from 23-30 November in the run up to World AIDS Day on 1 December.
During the week, Terrence Higgins Trust is teaming up with other organisations in England to encourage gay men and African people to take an HIV test. These are the people most at risk of getting HIV. Across England, partner organisations will offer more opportunities to test, both in clinics and in the community.
The week aims to
- Increase the numbers of gay men and African people taking an HIV test
- Raise awareness in the gay and African communities of the importance of testing
- Increase the number of opportunities to take a test at clinics and in the community
These aims will help to reduce the number of people who are diagnosed late with HIV. Early diagnosis helps people to manage their HIV and also reduces the risk of passing it on to other people.
We’ve already attracted widespread support for National HIV Testing Week from other organisations, but we also need your support to make it a success!
You can support National HIV Testing Week by:
- Promoting the week (www.tht.org.uk/hivtestingweek) and the THIVK campaign, which includes an online risk-assessment for HIV at www.thinkHIV.org.uk.
- Liking us on Facebook and joining and sharing our testing week event – www.facebook.com/nationalhivtestingweek
- Following us on Twitter using #hivtestingweek
National HIV Testing Week is part of the new HIV Prevention England (HPE) programme. Led by Terrence Higgins Trust with the support of five partner organisations, this programme is funded by the Department of Health for three years. The programme aims to reduce the number of late diagnoses by increasing HIV testing, and support condom use and other behaviours to lower the risk of getting HIV. To find out more, have a look at the HPE section of our website (http://www.tht.org.uk/our-charity/About-us/Our-work/HIV-Prevention-England)
19/11/12
I am reaching out to you today, from the Stop AIDS Campaign, as World AIDS Day is fast approaching (01.12.12)
You may have seen our campaign Why Stop Now? being launched online, which calls on the UK government to announce a blueprint this World AIDS Day, mapping how they will lead the world to reach a tipping point in the epidemic. If we scale up the response now, and see that tipping point passed, we can improve the quality of life for millions of people across the world.
What Do We Want?
We call upon the Government to produce a blueprint to:
- Commit to maintain the UK’s investment in HIV and AIDS
- Commit to put all people living with and affected by HIV at the centre of the response, regardless of where they live
- Commit to lead the way in the UK and globally
The more supporters we can get behind the campaign, the stronger it will be!
How You Can Help
You can get involved by:
1. Signing the petition at WhyStopNow.org
2. Joining the #WhyStopNow Twitter conversation on @stopaids
3. Getting in touch with your MP
Download our Supporter Briefing on whystopnow.org (underneath the online petition) for more tips on how to join the WhyStopNow conversation.
For more information on the campaign, please visit our website (www.whystopnow.org) or get in touch ([email protected]).
Best wishes and good campaigning!
Tom Warren
Campaign and Communications Intern
Stop AIDS Campaign
UK Consortium on AIDS and International Development
+44 (0)20 7324 4785
[email protected]
18/11/12
7/11/12
Terrence Higgins Trust has been working with EAGA Charitable Trust on a project they are undertaking with the University of Leicester to explore disability and fuel poverty. EAGA is an influential agency that works to hold Government and energy companies to account on fuel prices and the impact on consumers.
Their project will explore the range of needs which disabled people have in relation to energy, including high usage and affordability. It will also highlight the likely implications for disabled people of benefit changes and access to energy and will aim to challenge decision-makers and energy suppliers to improve policies and practices to ensure that the energy needs of disabled individuals and households are met.
Researchers from the project would like to interview one or two people living with HIV about their energy needs and related issues of affordability etc. The interviews would be anonymised and the text checked with them in advance of publication of our report.
Find out more here.
If you would like to share your experiences of how HIV impacts on your energy costs please contact Catherine Murphy from Terrence Higgins Trust’s Policy Team at [email protected]
7/11/12
World AIDS Day Survey for Manchester area:
https://www.surveymonkey.com/s/WorldAIDSDAY2012
6/11/12
For this World AIDS Day 2012, AVERT have launched an Infographic Competition for young people, challenging those aged 25 and under to come up with a powerful and creative infographic to help convey a message about HIV prevention. The idea is to educate their peers around the world about an HIV prevention message that is important to them, or to inform their peers by presenting data or information in an interesting and creative way.
The competition forms part of AVERT's Get Plugged In campaign, our new campaign that seeks to learn more about how young people are using different forms of technology to access information that will empower them to take control of their sexual health, protect themselves from HIV, and share information with their peers.
If your organization works with young people, or you know anyone who might be interested in entering, please do spread the word among friends, colleagues and networks.
A full brief, including information on prizes, terms & conditions, and details on how to enter can be found here: (http://www.avert.org/get-plugged-in.htm), or download the full Get Plugged In Infographic Competition Brief here: (http://www.avert.org/media/pdfs/infographic_competition.pdf).
For more information you can contact me at [email protected]
Thanks!
CAITLIN MAHON
Research and Information Assistant
5/11/12
George House Trust
Date for your diaries! The next Saturday Space which is on 17th November is 'Video Game Challenge'. We're bringing in a games console with wii sports and aim to get active with a variety of games including bowling, tennis, golf and many more. Show offs are welcome, but participation is optional
Open to all service users who are living with HIV and already accessing services at GHT. Saturday Space is from midday until 4 p.m.
2/11/12
HIV Treatment Update's next issue, winter 2013 (appearing in January) will have a feature on (recent) late diagnosis. We are investigating the reasons a high proportion of people with HIV are still not diagnosed until they have very low CD4 counts, AIDS-related conditions, etc. Is it due to lack of awareness in medical staff? Inhibitions about asking patients? People thinking they have not been at risk? Active avoidance of finding out? Or some mixture of all these? And what can we do about it?
I have already talked to a couple of men (one heterosexual, one bisexual) who were diagnosed very late but am looking for women (especially) who have had the same experience. I'm looking specifically for people who were diagnosed in the era of effective and tolerable ARV therapy, eg after 2002 or so.
All confidentiality will be respected: names and other identifying details will be changed as appropriate.
If you fit the bill or know someone who does, please email me direct at [email protected].
24/10/12
Positively UK are holding a ‘blue sky event’ for young people living with HIV. Come along and have your say and help us support young people. Have a chance to meet other young people, have a bite to eat and play our version of Dragons Den and pitch your ideas for developing services to our panel of experts. Wednesday 24th October 5.30-8.30pm’ Call 020 7713 0444 and ask for Marc or Maureen for more information.
24/10/12
Many NHS services are being put out to tender - and private companies can bid.
In this week's Scrubbing Up, Dr Steve Taylor, a sexual health and HIV specialist from Birmingham Heartlands Hospital and Dan Hartland from the HIV awareness charity Saving Lives warn there are unique dangers in allowing them to run sexual healthcare
http://www.bbc.co.uk/news/health-19991579
21/10/12
Some of you may be interested in the patient community website http://www.patientslikeme.com/
16/10/12
Please take time to take part in this 2 minute survey on Birmingham LGBT events such as Shout festival, Pink Picnic, Gay Birmingham Remembered Events, Rhino Workshops, LGBT Film Screenings, Birmingham Pride Community Area.
http://www.surveymonkey.com/s/birminghamlgbtevents
12/10/12
This week is Learning Disability Week! For the second year we are focussing on our 'Stand by me' campaign to end disability hate crime.
Find out what events are happening near you and how you can get involved www.mencap.org.uk/ldw.
11/10/12
New THT Direct helpline hours from Mon 15 Oct: Mon-Fri from 10am-8pm, closed w/ends. 0808802122
http://www.contactcenterworld.com/view/contact-center-news/uk-government-ends-funding-for-hiv-specific-phone-helplines.aspx
9/10/12
Help inspire young AIDS activists by being a speaker for our Student Stop AIDS Campaign Tour 2013
We are looking for a passionate, young (roughly 18-35) speaker from UK/Ireland, to join us on our annual Student Stop AIDS Campaign Tour. In this unique role, you will tour the UK, to help bring to life the issues behind the HIV/AIDS pandemic by telling your personal story to students and decision-makers and inspiring them to take action.
There are few things as powerful as hearing about the stinging words of stigma from the person who had to endure them; or the injustice of treatment coverage from one lucky enough to receive it. Hearing these stories can bring the human reality of the HIV/AIDS pandemic very sharply into focus.
You will need to commit for a week of training in the w/c 21st January 2013 to help you develop your story before the tour begins. After the training, the tour will visit around 20 Universities across the UK within a four week period, including meetings in Parliament with key UK decision makers. The tour runs from Monday 28th January until Friday 23rd February. We are offering this as a full or part time opportunity, therefore please outline how many full weeks you are available for in your application (you must be available for at least one full week).
This is an unpaid voluntary role however expenses will be covered including travel, basic accommodation and some phone costs, and you will receive a weekly per diem for food/sundries throughout the tour.
For more information please see the Role Description and Application form linked here. http://students.stopaidscampaign.org/2012/09/calling-national-speakers-for-our-flagship-campaign-tour/
If you would like an informal chat with the tour coordinator or a past British speaker please do get in touch with Kate on 0207 808 1782.
Please complete the application form by Friday 26th October 2012 and send to Kate at [email protected]
5/10/12
Open your eyes to destitution in Scotland - Campaign
Scottish Refugee Council and Refugee Survival Trust have launched an online petition and hard copy postcard campaign to raise opposition to UK destitution policies in Scotland.Theaim of the campaign is to get as many individuals and build a coalition of organisations in Scotland over the next 6 months (until 31 March 2013) to sign an online petition or hard copy postcard opposing asylum destitution. Ultimately, these will be sent to the Immigration Minister, but will use the momentum of the campaign throughout to target MPs in Scotland. The campaign is supported by:
new research conducted by the Scottish Poverty Information Glasgow Caledonian University into asylum and refugee destitution commissioned by Scottish Refugee Council, the Refugee Survival Trust
a powerful 7-minute and 2-minute edited documentary following three people refused asylum and destitute living in Glasgow by film-maker Chris Leslie. Commissioned by Scottish Refugee Council, National theatre of Scotland and the British Red Cross
The research, film and action can be accessed through the microsite: www.stopdestitution.org.uk
Whilst some people may sign the petition across the UK as it is of course a reserved matter, the focus is specifically on getting public support in Scotland. If Scottish organisations working with refugees would like to add their name, logo and link to the microsite please contact Gary Christie at [email protected] or on 0141 248 9799.
18/9/12
Award winning community film company REELmcr have been awarded lottery funding to create a film which looks at how people living with HIV cope with social exclusion in the North West of England.
The purpose of the film is to help those who have been newly diagnosed by telling several different stories.
People can get involved in the process with hands on camera and editing or telling your own experiences.
We want the film to tell real stories and give hope to others.
The project will begin with a one off workshop where everyone will take part and give their input – then filming will begin across the North West.
All participants have full editorial control over their own part of the film.
The film will be screened in Manchester in January 2012
Should you be interested or know of anyone who might be interested contact: 0793 1234 890 or [email protected]
13/9/12
Consultation: BHIVA Standards of Care for People Living with HIV
This comes to let you know that the hard work and commitment of so many of you, along with many other colleagues from around the UK, has now finally produced twelve Standards of Care for People Living with HIV, which are ready to go out to consultation online via the BHIVA website through the following link: http://www.bhiva.org/standards-of-care-2012.aspx.
We believe these new Standards of Care will be a critically important resource to the emerging new framework for the commissioning of HIV services, which includes the new HIV service specification that has been developed by the National Clinical Reference Group for HIV and the payment by results system of national tariffs for HIV services. They provide tools for local service providers and commissioners to determine the right model of care within their local networks to meet the needs of people living with HIV within their local communities.
We are now asking for comments on the work so far from as many people and organisations as possible through this online consultation. It will run from Wednesday 12 September 2012 to Sunday 7 October 2012. We will be publishing the new Standards of Care for People Living with HIV on Thursday 29 November 2012 at a formal launch event to mark World AIDS Day.
Please click on the link and you will find a list of the twelve standards of care and a further link providing more background and detail about the project itself. You can leave us feedback on as many of the standards as you wish.
Click on the link relating to the standard you are interested in.
You will then be taken to a new page where you will find a PDF of the standard and an electronic feedback form.
Please complete the form with your details as requested (those of you who represent or are members of an organisation or group, please enter the name of your organisation or group after your own name in the box on the feedback form).
You may enter your views, comments or thoughts on your chosen standard in the box provided on the feedback form.
Once you have completed the feedback form, please press the submit button to send it to us.
All responses will be collated and taken back to the steering group and writing teams to inform the final report. We will produce a summary of the consultation, which will be published on the BHIVA website.
We hope you will find this online consultation process an enjoyable and rewarding experience and look forward to hearing the views and comments expressed by you and other participants over the coming weeks of this public consultation.
With best wishes
Prof Jane Anderson Dr Simon Edwards
Co-Chairs, Standards Working Group.
For and on behalf of the British HIV Association (BHIVA)
BHIVA Secretariat: Mediscript Ltd | 1 Mountview Court | 310 Friern Barnet Lane | London N20 0LD
Company registration number: 2128686 | Place of registration: ENGLAND
13/9/12
Want to know more about HIV in the North West? See this new report http://www.cph.org.uk/showPublication.aspx?pubid=802
http://www.cph.org.uk/showPublication.aspx?pubid=802
www.cph.org.uk
6/9/12
Join in the conversation on how to strengthen the NHS constitution
The NHS Future Forum, which is advising the Government on how the NHS Constitution might be strengthened, is talking about what the NHS Constitution means to them and are keen to hear your views.
On a new blog launched today, members of the NHS Future Forum will explain what the NHS Constitution means to them and discuss ways of strengthening it.
Join the conversation on the NHS Constitution blog: http://nhsconstitution.dh.gov.uk/
The NHS Constitution sets out in one place what patients, staff and the public can expect from the NHS in England. It lays out:
- patient and staff rights
- the pledges the NHS is committed to achieve
- the responsibilities that patients, staff and the public owe to one another and to the health service.
Links:
Read the NHS Constitution: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_132961
The Government asked the NHS Future Forum working group on the NHS Constitution to advise it on whether there is scope for strengthening the Constitution earlier this year. A formal public consultation will be held later this year, giving everyone a chance to have their say about the proposed changes: http://www.dh.gov.uk/health/2012/03/nhs-constitution-group/
See the Future Forum's earlier advice to the Secretary of State for Health on the effect of the NHS Constitution to date, and the Secretary of State's report to Parliament: http://www.dh.gov.uk/health/2012/07/nhs-constitution/
31/8/12
NAT Benefits Survey: Living with HIV in the Work Related Activity Group
NAT is doing a survey on the experiences of people living with HIV who are receiving Employment and Support Allowance (ESA) and who, following a Work Capability Assessment (WCA), have been placed in the Work Related Activity Group (WRAG).
We particularly want to know about what support that is offered to help people in WRAG move towards getting back into work, and whether that support is appropriate. This will help us advocate for more and better support, if it is needed.
The survey should not take more than 15 minutes and will give you the opportunity to tell us about your experiences in the WRAG.
You can access the survey here: https://www.surveymonkey.com/s/HNYR59N
If you would like anymore information about the survey, please contact Laura Dunkeyson, Senior Policy and Parliamentary Officer on 020 7814 6756 or [email protected].
The survey will remain open until Sunday 16 September 2012.
Thank you
As part of the ongoing campaign against cuts to welfare the Hardest Hit campaign is looking to interview fifty people who claim DLA. The aim of this project is to understand what the impact of upcoming welfare reform will be on disabled people’s lives and gather a body of evidence that can be used to try and protect welfare. NAT would like to make sure the voices and experiences of people living with HIV are included in this important work.
Where possible, interviews would be conducted by telephone, and you would be contacted by our researcher, Dr Mark Baker to arrange a time that is convenient to you. We would expect that interviews would last about 45 minutes.
Dr Baker is an expert in welfare rights and has a long history working with people with disabilities and long term conditions, although not specifically with HIV. I've been assured Dr Baker is very trustworthy and should you chose to take part in this project please be assured that your details would be kept completely confidential.
If you areliving with HIV and happy to have your details passed on to Dr Baker, please contact Laura Dunkeyson ([email protected]/ 020 7814 6756).
8/8/12
BASELINE Magazine launches its first smartphone application
Available on the App Store, Android, PC & Mac
BASELINE would like to thank The Make a Difference Trust for sponsorship to support the development of this application. www.madtrust.org.uk
Visit www.baseline-hiv.co.uk to download you free application
7/8/12
River House is 23 years old this year
To celebrate, we are hosting an
Art Exhibition and Reception on 14th September 2012
...
The theme for your work is Life
We are proud of our longstanding place at the heart of the HIV community in London and we are frequently impressed by the creative talent we see in this vibrant community. In celebration of our 23rd birthday, we have decided to combine these two impressive achievements by hosting an art exhibition here at River House.
We invite HIV+ people who are artists, photographers, creative writers, potters or craft workers to apply to display their work here at River House on 14th September. We anticipate a large response and so we are limiting application to people who live, work, or attend clinical services in the boroughs of Hammersmith & Fulham, Ealing, Kensington & Chelsea and Westminster.
Criteria for art work
• You are HIV+ and live, work or attend clinical services in Hammersmith & Fulham, Ealing, Kensington & Chelsea and Westminster.
• Your artwork will be based on your interpretation of the theme Life.
• A photograph of the work you would like to display should be sent to River House Trust by 5pm on Friday 10th August to [email protected].. Please include a description of the work and the media used (in less than 100 words please).
• A panel at River House will select the pieces that will be displayed and you will be informed of their decision by Friday 23rd August 2012.
Please advise if you would like to offer your work for sale during the exhibition. Please note that River House will retain 10% of the sale price as a charity donation.
http://www.riverhouseuk.org/
2/7/12
INWL Service Group are undertaking a survey for people living with HIV who live or access care in Hammersmith & Fulham, Kensington & Chelsea and Westminster. The survey is to inform the Group's engagement with the INWL NHS and changes that are happening. A preliminary data of the survey will be collected by 10th August to use at the INWL Sexual health workshop.
https://www.surveymonkey.com/s/HIVServiceUserGroupQuestionnaire
27/7/12
I am attaching a flyer to this posting for Imperial College's 'first clinical attachment program'. This course is part of the first year medical students training programme and is their first chance to meet patients on a face-to-face basis. The clinical attachment programme needs volunteers to meet with the new medical students for the coming academic year.
Please could you cascade the poster advertising the course down through to your individual networks and encourage anyone is interested in volunteering for the course to contact Dr Ros Herbert at Imperial College.
I joined the programme several years ago and have found it an enjoyable and rewarding experience the feedback I get from the students I meet is that they also find it incredibly rewarding. I would therefore encourage anyone to participate in the programme. If you would like any further details from me please feel free to drop me a line ([email protected]). If you would like to participate in the programme please contact Dr Herbert directly her email address is below.
[email protected]
Kind regards,
Paul
24/7/12
North Wales is having its first ever PRIDE event in October (5th /6th) in Hendre Hall Bangor North Wales. Its an event which aims to celebrate diversity and break down the barriers to discrimination. For more details on the event please click on the following: www.northwalespride.com We are currently searching for volunteers to support on the day as well as stall holders to be at our event to showcase their work. For more information please get in touch. Please pass this information onto other contacts you may have who maybe interested in the North Wales Pride. All the best North Wales Pride Team
19/7/12
Are you taking maraviroc (Celsentri)?
Potential to earn £140 for taking part in market research
BASELINE is facilitating recruitment to an in-depth market research aimed at finding out what people taking maraviroc think about it.
Findings from this research survey will be used by maraviroc’s manufacturer ViiV Healthcare to better understand the experiences of people living with HIV, your needs, your experiences with maraviroc and what you want from HIV treatments to try and deliver better medicines.
The survey will involve two parts:
1. Completion of a paper diary for one week prior to an interview
2. A two hour interview conducted in your home and (or another more neutral place if you prefer). During the interview you will be asked some informal questions about your treatment and the impact that it and HIV have on your life. If you agree to be filmed, the film will only be used internally by the Market Research Company or ViiV Healthcare. If you don’t want to be filmed this wont necessarily preclude you from taking part.
Your privacy and confidentiality will be assured at all times by the market research company who adhere to the Market Research Code of Conduct
For more information contact David Rowlands,
Development Manager,
BASELINE Magazine
[email protected]
+44 (0) 1214 494 405 or +44 (0) 7716 963 249
12/7/12
Tell us about your experience of assessments for local council social care
NAT wants to find out about the experiences of people living with HIV going through the assessments for local council social care support.
These assessment are sometimes called a FACS (Fair Access to Care Services) assessment, a SAQ (Self-Assessment Questionnaire), or could be called something else entirely.
We are carrying out a short online survey of people living with HIV who have been through an assessment for local council social care. We aim to find out how well the current assessments capture the needs of people living with HIV.
The survey can be accessed here: https://www.surveymonkey.com/s/2XF6GY7and will remain open until the end of July.
4/7/12
What are your priorities for a national HIV strategy?
You may be aware that England's national strategy for sexual health and HIV ran out in 2010 and despite widespread calls for a new strategy the Government are yet to produce one.
In response NAT is going to develop its own strategy setting out what the priorities should be for HIV going forward, from prevention and testing and managing HIV as a long term condition to safeguarding equality and human rights for people living with HIV. We will use this to campaign for the Government to produce their own strategy and providemuch needed leadership on HIV.
Now we want your help! Tell us what you think are the three most important priorities for a new HIV strategy.
Your views will be vital in this process and we'll reflect the most frequently raised concerns in our final report.
We will be working on this in the next couple of months, launching in the autumn. It would be great if you could send your priorities to Eleanor at [email protected] by 18th July.
NAT's No plan, no progress: the case for a UK strategy tells you more about why we need to have a strategy in place. Thanks in advance for your help with this .
2/7/12
River House Trust is 23 years old this year
In celebration, we are hosting an art exhibition and reception on
Friday 14th September: 2pm-6pm
The theme for your work is Life
We are proud of our longstanding place at the heart of the HIV community in London and we are frequently impressed by the creative talent we see in this vibrant community. In celebration of our 23rd birthday, we have decided to combine these two impressive achievements by hosting an art exhibition here at River House.
We invite HIV+ people who are artists, photographers, creative writers, potters or craft workers to apply to display their work here at River House on 14th September. We anticipate a large response and so we are limiting application to people who live, work, or attend clinical services in the boroughs of Hammersmith & Fulham, Ealing, Kensington & Chelsea and Westminster.
Criteria for art work
• You are HIV+ and live, work or attend clinical services in Hammersmith & Fulham, Ealing, Kensington & Chelsea and Westminster.
• Your artwork will be based on your interpretation of the theme Life.
• A photograph of the work you would like to display should be sent to River House Trust by 5pm on Friday 10th August to [email protected].. Please include a description of the work and the media used (in less than 100 words please).
• A panel at River House will select the pieces that will be displayed and you will be informed of their decision by Friday 23rd August 2012.
• Please advise if you would like to offer your work for sale during the exhibition. Please note that River House will retain 10% of the sale price as a charity donation.
River House Trust, Furnival Gardens, Hammersmith, London W6 9DJ
Telephone: 0208 753 5190 or Email: [email protected]
4/6/12
NAT has recently learnt of some distressing incidences of stigma and discrimination regarding both pathology labs and funeral directors services. We understand that some pathologists are refusing to undertake post-mortems on HIV positive individuals. We have also been made aware of cases where funeral directors have refused to handle funeral arrangements for HIV positive people who have died, and/or bereaved partners or family members who wish for the deceased to be embalmed are being expressly denied this service if the individual was HIV positive.
We believe such discriminatory practices are deeply misguided and not based on up-to-date scientific evidence around HIV. Most importantly, they cause further unnecessary distress for family and relatives already coping with the loss of a loved one.
We are eager to address this and secure changes in policy and practice as soon as possible, but are first keen to gauge how widespread such experiences are. If you (or anyone you know) have ever experienced insensitive or discriminatory practice from funeral directors or pathology labs regarding people with HIV, and you wouldn't mind sharing with us, we would be interested to know about your experiences. This would help inform our work, and greatly aid the case for change.
Please contact me at [email protected] or 020 7814 6758 before September 2012.
Steven Akehurst, Policy Officer
21/5/12
Body Positive North West:
Important Announcement Owing to increasing financial pressures, the Board of Body Positive NW has taken the difficult and very sad decision to close the service and to cease operation.
This decision has been taken following legal and financial advice and is done on a voluntary basis to ensure all creditors will be paid in full and as much funding as possible will be retained to do future work around HIV by a different organisation. Talking Therapies – the counselling service – will continue to provide a service at a different location and all existing clients will have the opportunity of transferring.
Where possible, counsellors have had individual conversations with their clients so they are aware of this. The new services will be provided at 34 Manchester Road, Chorlton and will be under the auspices of Psychotherapy and Counselling North West. Further information will be given with a contact number for appointments.
BPNW's contract with Lancashire County Council and its partners should be able to continue with a seamless transfer to a different organisation. Board members are in discussion with Lancashire County Council on facilitating this.
The Board of BPNW regrets this decision but wants to thank all the numerous volunteers and service users as well as employed staff who have helped to provide some of the most innovative and outstanding services for people who are living with HIV for over a quarter of a century.
For information on HIV and available services, please contact:
George House Trust:
Tel. 0161 274 4499
Email:[email protected]
website: www.ght.org.uk
or
NAM
Tel. +44 (0)20 3242 0820
Email: [email protected]
website: www.nam.org.uk
BPNW. Website announcement/lt/14 May 2012
21/5/12
TB Alert has joined with Embrace UK, Bristol Community Health and NHS Bristol to raise awareness about tuberculosis (TB) in the Somali communities. We are pleased to announce the launch of a new resource which provides essential information about the relationship between TB and the Somali community- in both English and Somali Languages.
The Truth About TB in the Somali community explains what TB is, how it is transmitted, risk factors, common symptoms and what action people should take if they are concerned they may be affected. The leaflet also provides a comprehensive list of sources of advice and information. TB Alert will also like to acknowledge the support of NHS Bristol in producing this leaflet.
This resource is part of a series of leaflets, including The Truth About TB in the African Community, developed with the African Health Policy Network and The Truth About TB, Alcohol and Drugs, developed with Westminster Drug Project.
If you would like to order printed copies, please call 01273 234029 or email: [email protected]. The resource is free to third sector organisations to help raise awareness of TB among service users or members.
These leaflets have been developed under TB Alert’s The Truth About TB programme, which brings together partners in the NHS, local authorities and the third sector to raise awareness about TB among the most at-risk communities. To find out more, visit: www.thetruthabouttb.org.
8/5/12
Shape the HIV response: E-survey LIVING 2012 – The Positive Leadership Summit
GNP+ and the LIVING 2012 partnership have launched an electronic survey for people living with HIV to provide input into LIVING 2012: The Positive Leadership Summit. All people living with HIV worldwide are invited to provide input into the survey and help to shape the HIV response.
LIVING 2012 is a global consultative process that will result in a redefinition of the Global Advocacy Agenda for people living with HIV. During pre-consultations in Amsterdam, Nassau and Addis Abeba three broad themes were selected: Access to Treatment, Prevention, Care and Support; Human Rights; and Community Mobilisation and Activism.
The current e-survey aims to high light advocacy priorities from these three themes to feed into further online discussions and the development of briefing papers to inform the LIVING Summit in Washington this summer.
LIVING 2012 is the 13th International Conference of people living with HIV and aims to guide and inform actions and programmes of people living with HIV networks and other stakeholders through an evidence-informed advocacy strategy developed by and for people living with HIV.
LIVING 2012 will be held on July 19 and 20, 2012, in Washington DC, USA and is an official pre-conference to the 19th International AIDS Conference AIDS 2012. LIVING 2012 is organized by the Global Network of People living with HIV and the LIVING 2012 partnership. www.living2012.org
This survey closes on 21 May 2012.
To take the Survey in English click here:
http://www.surveymk.com/s/Living2012-English
Global Network of People Living with HIV (GNP+)
Van Diemenstraat 194 ¦ 1013 CP¦ Amsterdam ¦ The Netherlands
Office: +31 20 423 4114 ¦Fax: +31 20 423 4224 ¦ Web: www.gnpplus.net / / www.living2012.org
14/4/12
The African Eye Voice Magazine is out online and also available in print ,
Click on the link below to read this new publication with treatment news.
http://africaneyetrust.org.uk/Documents/taet/index.html
For more information and comments contact
Mike Editor in chief at [email protected]
22/3/12
According to the general public HIV and AIDS is seen in young homosexual males who live in densely populated cities in England.
The fact is that this view is wrong.
To change this Edo Zollo has created the “Stand Tall, Get Snapped” photo project. Opening at the Reading Room on the 22ndNovember[1], the exhibit will feature photos of individuals who are HIV Positive from different communities, some of which are below, with the hope to challenge the stereotypes associated with the virus.
We are looking for people that are willing to be photographed as part of this project. Although based in London, we are happy to travel across the UK to get as many different stories as possible.
According to statistics there is no such thing as a typical HIV-positive person[2], and we would like to show that it is a virus that will infect regardless of age, colour, gender or geographic location: indiscriminately.
If you want to email us with your questions, feel free - [email protected]
To check out more information on the project, go to http://hivpoz.tumblr.com/
For more information on the Photographer, Edo, check out his website: http://edlondonphotography.co.uk
[1]The Reading Room is located at 65-66 Frith Street, Soho, London W1D 3JR, and the exhibition will be running until January 4th, 2013
[2]Statistics from the Health Protection Agency’s ‘HIV in the United Kingdom: 2011 report’
13/3/12
Sigma Research has just launched My Care, I Care: a survey for people with diagnosed HIV who use clinics in London. It is being carried out on behalf of the London Specialised Commissioning Group (SCG). The results will be used to improve NHS services for people living with diagnosed HIV.
The questionnaire asks you what you think about your HIV clinic and the other clinical services you use. It is anonymous, safe, and relatively short (it takes about 15-20 minutes to complete). Taking part means you can have input into the way clinical services are configured in the future. A high response rate will also help us send a signal to government that HIV care matters.
You can fill it in now at http://www.demographix.com/surveys/3Y9Q-VHRX/C4PRHDR6/?NAT
A report of our results will be produced by the end of June 2012 and it will be available to download from Sigma?s website at www.sigmaresearch.org.ukand promoted via clinics, patient forums and HIV charities.
6/3/12
Many people with HIV are still anxious about the reaction they may get from a GP or dentist if they tell them their status. Because of this, MyHIV.org.uk has partnered with IWantGreatCare.org to create an anonymous way to recommend high quality and sensitive health services. If you are living with HIV, please sign up and tell us which services do a good job of treating you so that others can find them more easily.
There is more information on theMyHIV site, including making complaints against poor services, here: http://www.myhiv.org.uk/HIV-and-you/Your-healthcare/GP-and-dentist-recommendations
or you can link directly to the recommendation site and make your anonymous recommendations here: https://tht.iwantgreatcare.org
Thanks in advance for your involvement and for helping others with HIV find services that will welcome them and uderstand their needs.
Garry
22/2/12
Dear fellow-patients, friends and colleagues:
You are invited to a Community Consultation Meeting to hear about, discuss and give feedback on the 2012 British HIV Association Treatment Guidelines (Guidelines for Antiretroviral Treatment of Adults with HIV Infection). The guidelines are currently up for public consultation – see http://www.bhiva.org/TreatmentofHIV1_2012.aspx
The meeting is on Tuesday 28 February from 10.30-12.30 at Friends House, 173-177 Euston Road, London NW1 2BJ, followed by a sandwich lunch. Friends House is opposite Euston Station: see http://www.friendshouse.co.uk/getting-herefor a map.
The new BHIVA HIV Treatment Guidelines are the first to be published since 2008 and contain a number of significant changes to recommended HIV treatment. In addition, they are the first HIV treatment guidelines to be written in accordance with the 2009 requirements for NHS evidence accreditation (see https://www.evidence.nhs.uk/accreditation). UK patient representatives from the UK Community Advisory Board (UK-CAB) were included in the writing group and in a final-draft consultation meeting in December.
The guidelines incoporate a number of important changes and new sections:
They are the first HIV treatment guidelines anywhere in the world to recommend that doctors talk about the prevention benefits of treatment to all patients and that if patients wish to start treatment in order not to infect others, it should be prescribed.
They single out tenofovir/FTC (Truvada) as the preferred NRTI component in first-line regimens but broaden recommendations for the third drug to efavirenz, raltegravir or boosted atazanavir or darunavir.
They retain a CD4 count of 350 cells/mm3 as the threshold for starting treatment but broaden the number of situations in which starting treatment earlier is recommended, including in early infection.
They also include important new sections on supporting patients and adherence, and an important section on resource use.
HIV, as in so many other ways, is unusual in that the UK guidelines on what constitues the best treatment are still written by the doctors and patients who actually work and live with HIV every day, rather than by an evaluation agency such as NICE. UK HIV treatment, like much else in the NHS, is likely to go through an unprecedented degree of change in the next three years as the commissioning bodies for HIV change, responsibility for sexual health services and HIV testing shifts to local authorities, and cheap generic HIV drugs start to become available. In this setting it is especially important to have best-practice guidelines based upon firm evidence to guide NHS prescribing and funding decisions. Come and hear how they were and what the implications are for your or your service users’ treatment.
Best wishes,
Gus.
Gus Cairns
Editor, HIV Treatment Update
Editor, Preventing HIV
NAM
[email protected]
22/2/12
Free Training from Disability Rights at the London Leadership Development Development Day for people living with ill health injury or a disability who are looking to become a leader in their community. For an application pack please email [email protected] or callCarina Schmoldt on 0207 566 0114.
14/2/12
Disability Rights UK is now operational. New systems and ways of working are being developed by the new charity, and this is to inform you of developments and ask for your assistance in getting this right. We are working on building a strong Disability Rights UK Board of Trustees, and will be recruiting new Trustees to be elected to the Board at the EGM on 21 March. We are asking for applications to be returned by 20 February.
If you would like a Trustee Application form format of or have any other questions, please contact us on 0207 247 8776, or email us on [email protected]
13/2/12 - Two sets of BHIVA Guidelines are now out in draft form for consultation:
Guidelines for the treatment of HIV-1 infected adults with antiretroviral therapy 2012
The overall purpose of these guidelines is to provide guidance on best clinical practice in the treatment and management of adults with HIV infection with antiretroviral therapy (ART). The scope includes guidance on the initiation of ART in those previously naïve to therapy, support of patients on treatment, management of patients experiencing virological failure and recommendations in specific patient populations where other factors need to be taken into consideration.
Consultation feedback: the Treatment Guidelines Writing Group is grateful for all comments, which will be reviewed before publication. Please download the document and then submit any comments using the online form. The draft Guideline and the feedback form are accessible at http://www.bhiva.org/TreatmentGuidelinesConsultation.aspx
The consultation period deadline to receive all feedback is Monday 5 March 2012.
Guidelines for the management of HIV infection in pregnant women 2012
The overall purpose of these guidelines is to provide guidance on best clinical practice in the treatment and management of HIV-infected pregnant women. The scope includes guidance on the use of ART therapy both to prevent HIV mother-to-child transmission (MTCT) and for the welfare of the mother herself, guidance on mode of delivery and recommendations in specific patient populations where other factors need to be taken into consideration such as co infection with other agents.
Consultation feedback: the Treatment Guidelines Writing Group is grateful for all comments, which will be reviewed before publication. Please download the document and then submit any comments using the online form. The draft and the feedback form are accessible via http://www.bhiva.org/PregnancyGuidelinesConsultation.aspx
The consultation period deadline to receive all feedback is Monday 5 March 2012.
17/11/11
UK HIV information charity, NAM, has produced a new interactive tool called Talking Points, which is designed to help people with HIV talk to their doctors about HIV treatment. You can find out more about Talking Points here.
27/10/11 - The Northern Ireland Policing Board in partnership with The Rainbow Project have launched an online survey to gather the views of Lesbian, Gay and Bisexual people in Northern Ireland on policing and crime.
Other community news and updates can be highlighted here by emailing [email protected]
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