KVN Forum Meeting 2nd September 2008

Compiled by
CD
Attendees:9
Apologies: 4

The next ordinary meeting of the Forum will be held at the Kobler Clinic, Tuesday 7th October 2008 on the 4th Floor of the St Stephens Centre, from 6:00pm to 8:00pm

This document is a collection of the discussions held by the KVN Forum members at the September meeting of the KVN Forum, which took place on 2nd at the Kobler Clinic. These are not strictly minutes of the meeting, but most of the points were loosely captured – apologies for any points missed or any irregularities in the comments. Many thanks to those who participated in the discussion, and thanks also to those who have contributed through the online forum.

  • We need another forum member volunteer Treasurer.
  • There was very good feedback from those that went to the ‘stakeholders meeting at the new Dean Street location – PD, JS, JOC. There were also some concerns which were not immediately addressed at the meeting, and it was felt that the Forum should take on a proactive role in bring these concerns as well as any “wish list” items to the Trust, either through Leigh Chislett or directly through Forum attendance at the ongoing stakeholder meetings. The concerns were as follows:
    • The design of the useable space and access could make it difficult for those in wheelchairs – particular reference was made to perceived problems with the fire doors.
    • The space itself is small, which may limit the number of treatment services available – causing a concern from established Victoria users that the new location may draw in additional service users that have not been catered for, thus reducing current service levels for existing patients.
    • Expanding on the previous point, current Victoria clinic users are worried they will lose out to patients migrating from Mortimer Market and even Wharfside, who may be tempted to move to Dean Street as the Trust has established aspirations to become a Centre of Excellence in HIV Treatment, not just in London, but in the UK in general.
    • Running Saturday services and the fact that the location will pander to city workers who may use the service on a more casual basis, all helps to support the fears that existing users may not be best served in the new location.
  • The Wish-List so far contains the one item – the desire to maintain / create a “Tea Bar” similar to the Kobler Clinic, hopefully run by St Stephen’s volunteers, perhaps only operated on the HIV Treatment floor. Available space was again seen as a possible deterrent to this option being realised, but if you don’t ask - you don’t get.
  • ‘Treatment 101’ – this event is fixed for November. We will advertise accordingly. Simon Collins and Prof Gazzard invited – we will try to place a quarter page ad in the ‘African Eye’, magazine, and will leaflet all three clinics to try and maximise attendance.
  • Aging and HIV: RW update:
    • o Meeting held with David Asboe – on submissions to Ethical Committee – good feedback received on the outcome of those discussions. It has been agreed that David Asboe will take the role as Principle Investigator for the Project.
    • The main proposal structure and content document has nearly been completed, with all main components now drafted and only it’s final compilation remaining. o The working group is seeking the assistance of statistician Sundhiya Mandalia to aid with the development of the survey instrument and planning of outcome analysis. A formal request has been drafted and approved by the Forum executive and will be delivered to St Stephens AIDS Trust this week.
    • Dr Gareth Owens has also agreed to conduct the in-depth interviews using purposive sampling – as a result we will require Dr Owen to submit his proposal to be added to the body of the main draft document mentioned previously.
  • Timelines
    • The survey instrument is now expected to receive ethics approval by October / November
    • The final draft proposal is expected to be compiled for October
    • Pilot Study is being scheduled for February
    • Larger study will be scheduled for Summer 09
  • Looking Forward:
    • We will need to research and report back on the protocols for submission and publication of Project documentation and subsequent reportage, both in the Medical establishment and the wider public. Advice will be taken on citations, data ownership, storage of and access to data, publishing and intellectual copyright issues.
    • There will need to be Terms of Reference drawn up for managing the working protocols between all parties, primarily covering relations, communications and publications produced from or in conjunction with the Forum and Dr David Asboe and the Research Committee, Dr Gareth Owen and the purposive sampling input, and ACRIA / ROAH of New York. The Chair has volunteered to begin work on this.
  • Special Note will be minuted this month expressing sincere gratitude of the Forum for Jane Bruton taking time-off from her work to help complete the proposal for the Aging and HIV Survey – many thanks to her – and so say all of us.
  • JS has volunteered to become a member of the Treasury committee, replacing previous member NK.
  • JB spoke to the Forum about a Self-Assessment Tool which the Trust is required to complete, detailing the successes / failings of patient involvement work being carried out by the Trust. JB will post a portion of the survey that requests input from patient bodies to the online forum, and members are asked to add their comments, which will be returned with the self-assessment document. It has been noted that perhaps the patient comments should be forwarded independently, and JB will feedback those concerns.
  • The matter of the missing memory stick was tabbed for discussion. There has been some information made available to the press, and other information has come to the forum via those affected by the loss of patient data, and from senior staff within the Trust. The forum will be make a formal representation to Heather Lawrence, CEO of the Trust, with the objective to:
  • The matter of the missing memory stick was tabbed for discussion. There has been some information made available to the press, and other information has come to the forum via those affected by the loss of patient data, and from senior staff within the Trust. The forum will be make a formal representation to Heather Lawrence, CEO of the Trust, with the objective to:
    • Request that information coming from the Trust is clear
    • State that the Forum and it’s wider membership needs to hold the Trust to account for this loss of patient data
    • Both show appreciation of the special relationship that has been built up between the Forum and the Trust, and express our willingness to support the Trust in addressing the issue.
    • Offer assistance to the Trust in reviewing the systems and processes that led to the incident occurring, with the aim of reducing any such data mismanagement in future.
    • State what the Forum would like to see happen as a result of the whole affair.
  • The Chair will send a communication to Heather Lawrence, copying in Simon Barton and Debbie Richards.
  • The Chelsea and Westminster Foundation Trust Annual Members’ Meeting will be held at 5.30pm on Thursday September 18 in the Restaurant on the lower ground floor of the hospital - for those hoping to attend

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

The meeting dates for the Year 2008 are as follows:

  • Tuesday 7th October
  • Tuesday 4th November
  • Tuesday 2nd December

Others TBA.

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

Refreshments provided.