FRONTLINE HIV Forum Meeting October 2011

Date: 5th October 2011
Time: 6:00pm – 8:00pm

Attendees: 6
Apologies: 5

The next ordinary meeting of the Forum will be held at the Kobler Clinic, Wednesday 2nd November 2011 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.

We were very happy to welcome three members of The Avenue Forum, Eastbourne, whose contribution and insight at the meeting was greatly appreciated. It is hoped that collaboration between our forums will improve patient care for all patients. We hope that in the near future we will be able to meet again.

The Ageing Project, which began in August 2008, is a patient led empirical study of the impact of ageing on the medical, social, economic and psychological well being of patients over fifty years of age living with HIV. This type of project was first carried out in the United States of America by ACRIA, Aids Community Research Initiative of America. The forum is greatly indebted to Professor Stephen E. Karpiak, for permission to carry out a similar study here and for all his help and advice. Professor Karpiak is Associate Director for Research at ACRIA, and his groundbreaking study “Research on Older Adults with HIV” was published in 2006.

A working group of forum member’s commenced and great progress was made initially in carrying out the project. However, due to illness and other unforeseen events, the project was unable to progress in a timely manner, until lately when it was decided that the Chelsea and Westminster Hospital should take over the running of the project. This will mean that the important research gathered from this study will be published and all the hard work which was previously carried out will not be lost.

In the near future there will be an advertisement for the new post of Project Lead, whose job description will be to coordinate and expedite the project. This post will be on a short term fixed contract. Clarification is still required with regard to remuneration, and all new posts have to be approved by the Human Resources department.

The Forum finances need boosting. We need to ask possible sponsors and the Directorate for money. It was suggested that the Forum Link could possibly raise money and then give to each individual group. The Forum Link is in the process of setting themselves up as a registered charity, applying for company status and charity status at the same time.

Paul and Jane are to set up a meeting with Sean Watson, Clinical Nurse Specialist for HIV, to plan how to proceed.

It was suggested that the Forum may take place quarterly, with chore meetings to have fixed dates. The question of whether this should happen is to be asked on the website to see if it is acceptable to Forum members.

Funds have to be arranged to advertise the forum, and an advertising piece, stating our ethos, achievements, and
wishes for the future is to be written to attract new members.

The Forum wishes to work with other organisations to facilitate focus groups, and to empower forum members by training advocacy and mentoring to help fellow patients. With those aims in mind it is hoped that the Peer Support Training offered by Chelsea and Westminster HIV Clinics and Terrence Higgins Trust will be taken up by sufficient numbers of volunteers who are living with HIV. A previous attempt to run the course failed as not enough people put their names forward.

Invite speaker from NAT, National Aids Trust, to come and give a talk and update information regarding commissioning.

Invite back Mr. Paul Mason, investigative reporter with the BBC Newsnight team, to give an update to his previous presentation of October 2010 with regard to the Government White Paper On Health, and how this policy is proceeding in these austere financial times.

The next meeting of the KVN Forum will be held at:
The Kobler Clinic
4th Floor,
St Stephens Centre
Chelsea and Westminster Hospital

6:00pm to 8:00pm

On Wednesday 2nd November 2011

Refreshments provided

Please forward all points/suggestions for next meeting to the online forum, or directly to Paul at and the Agenda will be posted to the online Forum, with any additional points added to it as they are sent in.

Future Meetings:

• Wednesday 7th December
• Wednesday 1st February 2012
• Wednesday 7th March 2012