FRONTLINE HIV Forum Meeting 3rd March 2009

FRONTLINE HIV Forum Meetings:

Members: General Members Forum
Date: 3rd March 2009
Time: 6:00pm – 8:00pm

Attendees: 9
Apologies: 7

  • Firstly the forum had a brief overview from Ann Sullivan, one of the Nursing Admin staff operating out of Chelsea & Westminster A&E dept, who approached the forum to get feedback from positive patients on a new HIV Testing regimen, that could (if the Pilot is successful) be rolled out to other Hospitals within the Trust, and possibly pan-London. The new test would involve all (consenting) arrivals to A&E, giving them the opportunity to be tested for HIV by giving a sample of Saliva, instead of the blood test usually synonymous with HIV testing. If they consent, the patients would also be asked to complete a short survey on how they felt about the new test. Ann was very pleased for the time we were able to give her during the meeting, and has subsequently taken the feedback received from us and fed it back to her working group.
  • Updates from ‘HIV Age’ Research Team:
    • Proposal to be submitted – project has had to slow down over the Winter months due to poor health and time-constraints on RT members.
    • Some positive feedback has come from Funders – but we still have a ways to go to secure full funding.
    • Presentation at the Plenary session of the NHIVNA Conference 25-26th June, 2009 – The Chair in his capacity as Project Lead will give a 10 minute presentation on the project – JS will also be going for fuller representation.
    • Project Lead – currently the Chair is temporarily filling this post, and has put it to the Forum and RT Team that there will need to be someone else taking this over within the next few months due to current workloads.
    • Aiming for an online Ethics Form submission by end of April.
    • Information outlining the Project has been sent to IV for placement on the Noticeboard.
  • Chair tasked Steering Group with their first duty of commissioning a working group activity with the remit of drafting all required Forum documentation.
    • Terms of Reference - ongoing
    • Equal Ops Policy – MM has sent a copy that we can use as a template - ongoing
    • Timescales – as yet indeterminate.
    • Stewart Roe email details sent to the Chair to be invited to one of the next general Forum meetings.
    • More emphasis needs to be placed on getting more members to have an input into the Forum – updating the noticeboards will begin immediately – the Chair will send updated Notices to be put up and will update all pages of the FRONTLINE HIV website.
  • Jan09 Meeting visitors: - Marta Boffita, Katherine & Breda Ward would all like to re-attended at a fuller meeting in future – to report on the “Over 50’s” clinic now set up. The tests proven in this clinic may get rolled out to a wider clinical application. Tests done include screening for Testicular Cancer, Anal smears etc. The discussion opened out into a much wider debate on the number and consistency of services available to HIV patients at ChelWest. The upshot resulted in member of the forum making it known that they would all prefer to have a hard-copy leaflet/booklet detailing all available services at Chelsea and Westminster. JB showed us a version specifically covering Women & Children’s services, but what was needed was one that covered all services – fully accepting that these do change and some cease while others are introduced.
  • Wharfside Patient Survey – forum members were generally open to using this survey as a template and modifying for FRONTLINE use. If these were kept similar, and were rolled out to all positive patients’ forums, they could be used to give an overview of HIV services across London and the UK from the perspective of the patient / service user, and so could be a powerful force for change in terms of receiving fair and consistent levels of service. PD will adapt the survey document with input and assistance from the online forum – please have a look and lend suggestions / assistance where possible.
  • There was a request to have a follow up on the “Role of GP’s” discussion held by the forum nearly two years ago. Very little has seemed to have changed since then – perhaps we should meet with Stewart Roe and Stephen Tucker again – possibly consider this event for a few months time.
  • THT Training: this discussion proved highly emotive. THT are proposing – with the support of PCT’s to provide ‘health trainers’, independent “third ears” for patients, who will eventually reside within Clinics and advise patients on treatment options, counselling services etc. THT want to send some of these ‘trainers’ to address the forum on their plans. Feelings expressed by the forum were on the whole extremely negative, seeing as how the funding that THT gained to run this project meant that other Information and Advice advocates like I-Base lost all their government funding – as it went to THT – and the irony is that THT will be using the information leaflets and publications produced by I-Base as part of THT trainer’s own information hand-outs. The Chair put their attendance to a vote: the votes were as follows:
    • Yes (come and address the Forum): – 2 votes
    • No (do NOT come and address the Forum): – 3 votes
    • Send us what you’re going to say: – 0 votes
    • Abstain: - 4 votes

    As a result, the Chair will invite Stephen Tucker and Verity (?) to come along and explain what the commissioners intentions are with this – as the forum does not want the speakers to come and address them, as this will send the wrong signal to THT and the commissioners that we give tacit approval for what they are doing.

  • Question asked to JB – are there still going to be places for Forum members on the HIV Service Development Strategy meetings as discussed in 2007?
  • Next meeting will see some visitors along from a newly formed patient forum recently set up in Eastbourne.