FRONTLINE HIV Forum Meeting 5th September 2012
Date: 5th September 2012
Time: 6:00pm – 8:00pm
The next ordinary meeting of the Forum will be held at the Kobler Clinic, Wednesday 3rd October on the 4th Floor of the St Stephens Centre, from 6:00pm to 8:00pm.
This document details the discussions held by the Frontline Forum members at the last meeting. They are not complete minutes, more notes or points loosely captured in no particular order; apologies for points missed. Many thanks go to those who participated, and well as to those who continue to contribute through the online forum.
Gary Brough, Membership Manager with the Terrence Higgins Trust (THT) gave a presentation to the forum on the uses of the My HIV website. Gary logged on and was able to show how the site works. It is a fantastic resource for people with HIV on how to live well.
Funded by the Elton John Foundation the site was initially conceived to be a virtual resource that would mirror the work of a patient representative, but with the passage of time it has responded to the needs and requests from its members, and now encompasses so much more. The site gives up to date verified information on everything that a person with HIV will need to know at some time from initial diagnosis to living well with HIV for a long time. The site contains an online forum where members can get support from their peers, and it has been by responding to the concerns, which the members have voiced that the site has blossomed into a very useful resource helping people all over the country. The strategy of this patient driven website is to shape future policy by listening to the members concerns.
With video content on every page the site has a section with information for everyone with HIV, and it also has sections with information tailored specifically for the African community, the Gay community, and for young people. Those most affected by HIV.
It is encouraging to see real people affected by HIV talking openly about their situation, offering up their experience and knowledge to help others. The site offers information on diagnosis, telling people of your diagnosis, treatment issues, staying healthy, and your rights, It is possible to access an online health trainer, an online counsellor, and an online advisor - for help regarding problems with authorities, legislation, and benefits. Online advice takes place via live instant messaging (typing), video chat, or audio chat in a secure and encrypted environment. The sessions last for up to 50 minutes and at a time you have picked from your advisors available slots.
To join the website you are required to register. It is free to join. The site is secure and confidential, and is maintained to the highest standards. To register you do not have to give your real first and last name, but you are encouraged to do so to become a member of the Terrence Higgins Trust. If you wished to join the trust your real name is required to vote in the trustee elections.
To join the open community forums section of the website you are required to register again. Once registered into the community forums there are a number of terms and conditions upon which your registration as a user of the forum is accepted. There is a code of conduct, which you will be expected to follow. Failure to stay within the code of conduct could result in reprimand, suspension, or exclusion. Gary was pleased to inform us that breaches of the code of conduct were very rare.
The community forum is a great way for people to talk to each other for peer support. Members have already organised themselves and meet to chat at specified times. For example Thursday night is ladies night. At present there are 24 different areas for discussion. Moderators check content and respond to questions. There is also a general chat section where members can communicate about non-HIV matters. It is also possible to enter a private section of the forum where you can chat one to one with another member. There is even a "Looking To Meet" section, not like other dating sites tailored to encourage casual sex, but one, which gives the opportunity for likeminded people to meet socially in safety. Advice on how to meet someone safely for the first time is available and members are encouraged to read it. The In Your Area section gives details of local events taking place all over the country.
In the My Health Status section of the main website members can self manage their HIV condition by inserting their latest CD4 and viral load figures, then being able to see their figures portrayed on a graph which will record them and track them over time. Medical appointments can also be added to a health calendar, which would send reminders of that appointment, by text or e-mail. Very shortly this service will also be available as an application, APP, for modern mobile telephones.
There are direct external links to all the other HIV organisations, and also to other organisations, which may be of use to people with HIV. If you provide your postcode you will be given details on how to contact THT services in your area, as well as other local providers of services, and sexual health clinics.
The site also gives information on how to become an active campaigner on HIV issues. The forum thanked Gary for his presentation.
London Study on the Impact of Ageing with HIV (LSIAH)
Peter, the Project Manager of LSIAH, delighted the forum by telling us that the project had received ethical approval. Approval from the Research and Development regarding funding should only take a couple of weeks. The questionnaire is to remain as last revised with the possibility of some questions being removed after the pilot study. The HIV negative group involved in the study is hoped to be recruited by the recommendation of the HIV positive people taking part.
Should anyone taking part in the study seem very depressed they will be asked for their specific permission, so that they could be contacted later to see if their condition had improved, or if needed refer them for help.
The forum is planning a meeting in the new year specifically about women’s health hopefully next February or March.
The next meeting of the KVN Forum will be held at:
The Kobler Clinic
St Stephens Centre
Chelsea and Westminster Hospital
6:00pm to 8:00pm
On Wednesday 3rd October
Please forward all points/suggestions for next meeting to the online forum, or directly to Paul at firstname.lastname@example.org and the Agenda will be posted to the online Forum, with any additional points added to it as they are sent in.
• Wednesday 7th November
• Wednesday 5th December