KVN Forum Meeting 6th May 2008

Compiled by

Apologies: 3

The next ordinary meeting of the Forum will be held at the Kobler Clinic, Tuesday 3rd June 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 May meeting of the KVN Forum, which took place on 6th 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.

  • Daniel Payet, and Marcela Pierabella both Welfare Rights advisors from THT came to the meeting, to present the THT perspective of the DLA review, and offered information on actions and services available to help anyone undergoing reviews. Daniel said that Lisa Power (who was invited to come along to the meeting) was unable to make the meeting, but will try to come to another of our meetings. Daniel relayed information on:
    • The THT Direct portal – Internet service which can give first-line advice and information
    • THT Nationwide service – though this is only a nationwide ‘telephone’ service and only 11 Boroughs are covered by availability of the full service.
    • THT will do home visits to those that need advice, and can’t get to any of the Advice centres – based on medical grounds / persons ability to use public transport.
  • Daniel and Marcella then answered questions from the Forum on various issues relating to the DLA reviews and were asked to explain THT’s approach in dealing with the situation from the beginning. Some of the questions were not answered, as the Daniel was not privy to the information, so any not answered will be forwarded to Lisa Power for a response. Q’s & A’s as follows:
    • Q. The Government ran a Pilot Study to determine how the changes to DLA would work and how the review would be rolled out nationally. Were THT aware of the Study, and if so when were they made aware the Study was to be opened out into a Review? Who within THT knew the study was occurring?
    • A: (To be forwarded to Lisa Power)
    • Q: How long are the DLA Reviews taking on average?
    • A: About 12 weeks.
    • Q: What is THT’s take on suggestions from the community that they responded very slowly to the DLA Review?
    • A: The review process itself was very slow to start with, so THT could only respond in line with the Government’s slow pace in handling the reviews.
    • Q: Why have calls from those seeking assistance to ‘THT Direct’ been directed to other support agencies – like I-base and Citizens Advice?
    • A: (To be forwarded to Lisa Power)
    • Q: Is THT in receipt of government funding to service the HIV community with regard to assistance with DLA reviews, and if so how many people have you been able to help versus the numbers who have asked for help? (Essentially a query on Productivity)
    • A: (To be forwarded to Lisa Power)
    • Q: Did THT raise any legal challenge to the legitimacy of the Government’s review of DLA?
    • A: They did not.
    • Q: Why have THT sought the need to expand their remit in the ways they have in terms of servicing the HIV community? Why are they now covering Sexual Health in general, no longer focusing on HIV issues?
    • A: (To be forwarded to Lisa Power)
    • Q: Why is THT in receipt of Government funding to provide Patient Advocacy, when in fact it seems on the face of it that the patient has to do everything?
    • A: THT have some statistics detailing how the numbers of reviews they have helped patients with – some of the data was disclosed at the meeting, though without closer scrutiny permitted, the numbers didn’t seem to add up – Lisa Power will be asked to release the statistical data to us for clarification:
      • 7,407 reviews looked at
      • 1,687 (11.8%) reviews processed - 6532 to complete
      • 10% (of those 1,687) had ‘normal rules’ maintained
      • 161 cases had ‘special rules’ maintained
      • 54 cases kept the cash, but moved from ‘special rules’ to ‘normal rules’
      • 11 cases maintained ‘normal rules’ (contradicts previous data)
      • 433 cases disallowed
        47% cases (of the 1,687) retained some form of benefit
  • In general, a list of outstanding queries will be sent to Lisa Power, with another invitation to attend one of our meetings, along with some of the recommendations from the Forum on how THT might improve the communities perspective on their failings over the DLA review and other issues – these include:
    • THT should be performing more Outreach work – to groups like the KVN Forum - to gauge first-hand how the HIV community they claim to serve feel about the way THT are performing (or not performing) that service.
    • The Forum thanked Daniel and Marcella for their presentation, and the chair said he would forward the notes to them (and Lisa Power) for information and for a response to the queries put to THT from the Forum.
  • The Forum then (short of time) got an update from RW about the @Aging and HIV’ event. RW covered many points, detailing:
    • How do we deal with demographics,
    • Types of questions,
    • How/where/do we deal with Funding, o Small and Large Surveys needed
    • Data ownership
    • We will use the data for possible widening of available services at KVN Clinics
    • The Research Committee at the ChelWest will need to be included – we should meet with them and discuss building a detailed Ethics proposal
    • We should speak to David Asboe – Head of the Research Committee
  • We ran out of time so the Forum agreed to hold an extraordinary meeting in two weeks time – to further discuss and plan the ongoing event/process, as is it is evolving into something much bigger than we initially anticipated.
  • The Forum will meet again on 20th May – same place, same time.
  • The ChelWest ‘Open Day’ is May 10th – anyone wanting to show up are welcome – PD and CD will be going.
  • Other points not discussed will be covered at the extraordinary meeting if there is time, including:
    • ‘Treatment 101’ – CD to update
    • Forum Budgets and Funding – update

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

An extraordinary meeting of the KVN Forum will be held on Tuesday 20th May, 2008

The meeting dates for the Year 2008 are as follows:

  • Tuesday 3rd June
  • Tuesday 1st July
  • No Meeting in August
  • Tuesday 2nd September
  • 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.