KVN Forum Meeting 1st August 2006

Compiled by
Attendees: 8
Apologies: 2

The next meeting of the KVN Forum will be held at the Kobler Clinic, on 5th September 2006 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 seventh meeting of the KVN Forum, which took place on 1st August 2006 at the Kobler Clinic. These are not strictly minutes of the meeting, but most of the points were loosely captured – apologies for any points that were missed.

The meeting started off with notice being made of the low attendance of the previous meeting. This left members feeling a little disappointed, as Debbie Richards, the new General Manager for HIV and GUM, had showed up to attend the meeting, but was only able to meet with a few members. It was felt that this could have been because we needed to get the Posters out to all three Clinics, advertising the monthly meetings. The discussion ensued, and suggestions made as to how to help improve the numbers coming to the meetings:

  • Mail Shots – encouraging existing members to come along
  • Email reminders to registered members
  • Follow up on the putting up of the Notice boards – especially in the Kobler Clinic, and
  • Following up on the new Posters and getting them printed asap. CD will follow up the new Poster designs with S.R., and ask if he has any information on the whereabouts of the Notice boards.
  • Canvassing patients while they are in the waiting area of the Clinics – some forum members offered to take this up, but it was also noted that some patients might not appreciate being approached in this way. The best days to canvas were noted as Monday & Tuesday mornings and Wednesday afternoons. It was added at that time that one should probably wear some kind of identification while canvassing the other patients, so Barbara Von Barsewisch offered to print the KVN logo on a couple of T-Shirt transfers, and those could be worn by the Forum members as they talked to other patients in the waiting areas. Paul will forward the logo to Barbara.

PD (formerly PF) announced that he will make the KVN Forum group online forum into a “List Server” rather than continue to use the current dot Mac account group web site, as the dot Mac account was sometimes difficult for members to use, and might actually be discouraging some patients from participating in online discussions. PD will work on the new format and will report on progress at the next meeting.

On that point, PD also suggested that the forum should begin planning a new Website, and have it hosted on a Commercial site, as the current dot Mac account will cease in February ’07. PD paid for the current account himself, but thought that the Forum should begin to fund it’s own web-space, and it was generally agreed that this was a correct assumption. This led to a discussion about how the KVN Forum will need to begin acquiring Funds, in order to make possible many of the ideas generated at previous meetings.

It was then generally agreed by all, that the forum should form a Fund-Raising sub-committee, who’s remit would be to start building the Financial structures that will be required in order for the forum to make possible the sorts of things members have suggested in the past – like Workshops, Outreach programs and Capacity-building programs. There were several suggested methods and sources of Funding then discussed:

  • St Stephens AIDS Trust
  • Commissioner of the PCT for Kensington and Chelsea
  • Crusaid
  • Kings Fund

There seemed to be sufficient interest within the members to precipitate the calling for volunteers for members to sit on this sub-committee, and a number of members put their names forward: CD; M.M.; N.K., and C.N. (who offered to assist where possible). The sub-committee then agreed to meet one evening outside of the monthly meetings. It was suggested that the Fund-Raising committee will need to start off with the basics – opening a Bank Account, registering the Forum as a Club etc, and M.M. stated that she could assist with this as she has had experience of this type of activity gained while setting up the EHH Patients forum. The sub-committee will report on their progress at the next meeting.

CD raised he point about a document, recently published by the Department of Health, that outlines the changes to the CPPIH, and brought a copy of the document for the members to look through. He suggested that all members should try to read the document, as it is very relevant to how the future of Public Patient Involvement will develop. This has particular relevance to Patient groups such as the KVN Forum. The URL for the document is as follows:

It was suggested everyone try to read it so that it can be discussed at the next meeting. On that note, Paul mentioned other relevant discussion sites included the UKCAB (United Kingdom Community Advisory Board) and suggested that some members may wish to be added to that List Server. Another site of interest is BHIVA (British HIV Association) – both these URL’s are as follows:


PD then went on the mention that registrations for the next BHIVA conference were being called for now, and that forum members should consider attending the conference, scheduled for the 13th & 14th October. J.S. and M.M. volunteered, and so PD said he would speak to the organisers and get some registration forms. PD did warn that the registrations are dealt with on a first-come, first-served basis, so that we may too late to get registered for the two-day conference. However, he has since obtained the forms, and CD has completed the forms and submitted them, so we should know soon if they have been accepted.

This led to the discussion around the expectations of what might be considered suitable protocol for forum members when they participate in outside events. It was generally agreed that there was a precedent set in previous correspondence on this subject, posted to the online forum June 16th, 2006. It has been agreed, therefore, that the following [with updated amendments] should apply:

When we [KVN Forum members] are attending outside meetings, [we are] representing the KVN Forum, [so] I believe we can be expected to do two things:

  • 1. Accept that we should adopt a Public-facing protocol in what we say, and what we do, and to always remember that we are representing the views of the Forum
  • 2. Accept that a written report will be made available to the forum at the nearest opportunity, outlining the main points discussed, and [the report as well as] any electronic documents should be posted to the online forum for the group to view and digest before open discussions take place at the monthly meetings.

This will ensure that those who can not attend those outside events can benefit from a sharing of the event’s main points and any documented information.

The idea of getting a mobile phone with a pay-as-you-go account, specifically for the purpose of providing a telephone contact number for the Forum, was discussed. The thought was that this could be another way to bolster interest in the forum, as prospective members could call the number, and through the Voicemail greeting, could receive information about the group, and the monthly meeting times and location. If anyone wanted to leave a message asking to be added to the forum mailing list, then those messages could be picked up daily, and responses could be sent out as appropriate. It was recognised that this would be a valid use of any funds that the forum could lend, and also gave further strength to the need for the forum to start building it’s own funds – to finance this type of service. CD said that he would start up a new account for the forum, and would use one of his old mobile phones for the purpose of making this happen before funds were available. He will report on this at the next meeting.

A point was raised over the recent change in Kobler Clinic practice, whereby patients hoping to have their “bloods” done, in advance of having their regular consultations with their HIV Treatment specialist, can no longer have the forms (detailing which Blood tests are to be done) given to them in advance of their getting the blood tests done. In the past, the Treatment specialist could print off the required forms in advance of the patient having their tests, so that it would reduce waiting time for having the tests done – a distinct advantage if one is working or has not got much time to dedicate to waiting for these tests to be completed. This has now changed, as the bloods now go off to two different testing laboratories, and one of those labs will not accept pre-dated forms. This means that the patient now has to go to the Clinic reception on the day they wish to have their bloods done, and ask for the appropriate forms to be printed, then take the forms and present them to the bloods nurse when their turn comes up on the bloods queue. Barbara Von Barsewisch made note of the added inconvenience of this process – particularly for people who are in full-time employment – and will feed it back to the Clinic management. Paul and J.S. will also take this up at the next Emergency Access Services Review meeting.

To counter this, a point was then made by N.K., that a very positive development had been recently introduced by the Clinic - to have treatment medication home-delivered. Jim explained that this was due to a loophole in the law, which stated that home-delivered medications are exempt of VAT, and with the Trust spending about £24m each year on medications, this had an enormous potential for the Trust to save significant sums of money. The general feeling amongst the forum members was that this was an excellent service, but some wished the criteria for eligibility was too strict - to be eligible for the service, one must have been on a stable treatment regimen for at least one year. Barbara explained that this was due to the logistical issues around stockpiling of drugs, and the Trust had to be very careful not to over-order drugs which might not end being distributed within their use-by time limits. She then went on to say that the service was also designed to permit delivery to one’s place of work – in case there was any likelihood of not being at home to receive the deliveries.

There was then a follow-up discussion on past discussions on the point that Drugs were sometimes being dispensed from the Clinic pharmacy without inclusion of their corresponding Information leaflets – usually supplied by the Pharmaceutical companies with every packaged medication. Barbara stated that this may have been where packages have been split up into smaller portions – for example if a patient was prescribed 6 days worth of a certain drug, but the package contained enough for 12 days worth – the package could then be split into two, and the remaining 6 days medication could be given to another patient. The problem then arises due to there being only one Patient Information Leaflet, and it is illegal to photocopy that leaflet due to the Pharma-Companies enforcing the Copyright of each and every Information leaflet. This means that Clinics are not able split the boxes up, so any unused medications cannot be dispensed, and must be thrown out. The forum has taken exception to this copyright enforcement, and it was felt that we (KVN Forum) should draft an official letter to all the drug companies, stating our distaste and utter disapproval of their not permitting the reproduction of said Information leaflets – which ultimately only puts more money in their coffers and benefits neither the cash-strapped treatment clinics, nor the economy, nor the environment, in soliciting this abhorrent waste of often very expensive medications.

This prompted the point that the KVN Forum should have a postal address, for receipt of replies from such letters (as mentioned in the previous point). Barbara said she would check if we could use the St Stevens Centre as a forwarding address.

That’s it. The Agenda for next meeting, on 9th September, will carry forward ongoing reports from the outside meetings being attended by KVN members, and other points will follow. Please forward all points/suggestions for next meeting to the online forum, or directly to me at declec@hotmail.com or p.foster@mac.com

The next meeting of the KVN Forum will be:

On Tuesday 5th September, 2006 6:00pm to 8:00pm

The Kobler Clinic 4th Floor,
St Stephens Centre
Chelsea and Westminster Hospital

Refreshments provided.