KVN Forum Meeting 3rd October 2006

Compiled by
Attendees: 14
Apologies: 2

The next meeting of the KVN Forum will be held at the Kobler Clinic, on 7th November 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 ninth meeting of the KVN Forum, which took place on 3rd October 2006 at the Kobler Clinic. These are not strictly minutes of the meeting, but most of the points were loosely captured.

  • The meeting started off in earnest with a hearty discussion on the recent ceasing of the funding by the boroughs of Kensington and Chelsea, for the River House. While it is recognised that the River house and it's services are not directly related to the services run by KVN clinics, the funding from the borough of Kensington and Chelsea has been cut, so HIV users from those two Boroughs can no longer user the services available at the River house. The issue was also felt to be of great significance due to the way it was implemented - by stealth rather than by consent. Neither consultation nor comment had been invited from the public or the users themselves. There will be a public meeting held at the River house on the 17th October, 1400-1430hrs to discuss possible actions. All those affected by the cessation of the services would do well to attend.
  • The loss of the River house was felt to represent further erosion of specialist services once available for those affected by HIV in the area, and it was also noted that Bus Passes have also been recently withdrawn from numbers of registered disabled users - yet more evidence of this erosion of services.
  • Simon Farnworth, Kobler Clinic Charge Nurse, then was introduced to the Forum members, and together with PD (who has very kindly developed the Audit and Questionnaire forms) discussed the upcoming plan by the Forum to address the current operational difficulties being experienced within the Phlebotomy department at the Kobler clinic. This issue has of past triggered much discussion by the Forum, and as a result has sparked off the possibility of auditing the service itself.
    • It is proposed to use a simple questionnaire, one per person using the phlebotomy service over a one-week period.
    • It is proposed that there will need to be 2 shifts of volunteers per day, to cover the early and late parts of the day, and this will collect up to 20 lots of data, that can be collated and hopefully used to help improve the service overall.
    • It should be noted that the Clinic management are very keen to assist with the audit, as they will also benefit from the information gathered as much as the Forum users will.
    • The optimum week to carry out the audit will be either in late October or early November. The week starting 23rd October is the first of these optimum periods.
    • The audit itself, is planned to be undertaken both with the consent of and in conjunction with the Clinic management. It is intended that the persons who will be completing the audits, will comprise of both Forum volunteers and members of Staff.
    • PD will be coordinating the Forum volunteers and will be working with Jane Bruton to create the roster for the weeks audit, so that the 20 shifts of the week are covered either by volunteers or by staff.
    • J.S. will also see if any of the St Stephens volunteers will be able to assist with the audit, and once the dates are fixed the volunteers can be canvassed for their availability.
    • There will be a further meeting, possibly in two weeks (17th Oct) to bring together both Forum volunteers and staff, to discuss how the audit will actually take place. This will ensure that everyone involved in the audit undergoes some training in dealing with the public and agreeing on how the data will be gathered, so that there will be consistency and conformity for the data integrity as well as consideration given to user sensitivity.
    • If the 17th Oct is too soon to gather enough volunteers, then the later November option will be aimed for.
    • Jane Bruton thought it would be prudent to have some form of official identification for the auditors to wear, to help reduce any anxiety from the users about the data gathering exercise.
  • Further discussion then took place about a point raised at the last meeting - namely the use of placement of the KVN flyer into each of the Bags of medications dispensed at the Clinics, to assist with "getting the word out" about the existence of the Forum and to try and get more users to come along to the meetings and have their say. Jane Bruton has been discussion this with the Pharmacy Manager, and she said she is very close to gaining agreement on how this will happen, and should be able to update us by the next meeting. It was then queried whether these Newsletters could also go into those medications which were delivered to user's directly at home or places of work. Simon Farnworth stated this would probably not be possible, as the service was run by a Third Party delivery company, and engaging them to perform additional services - like enclosing leaflets into the order - would complicate matters and may make the service itself more expensive.
  • This led to the discussion about the next version of the Newsletter – CD invited all Forum members to forward their ideas as to the content of the next Newsletter. The Website and Communications Sub-group could then put this together, ready for distribution to all three clinics and addition to all medications dispensed from the Pharmacy.
  • It had been noted, now that the new Posters have been put up on the new KVN Forum Notice Board, that the meeting times should be on listed on them - PD will be sending updated versions of the Posters to Jane Bruton, who will have them printed and then put up in the Phlebotomist and Consultation rooms to help increase patient awareness of the meetings.
  • The Suggestion Boxes were discussed - Jane Bruton brought one in for the meeting to measure up, so that a suitable notice can be put together to differentiate this Suggestion Box from the one already up in the Waiting areas of the three Clinics, which are in place for use by the Trust itself. The size of the window has been noted and Poster/notices will soon be drafted and then the Suggestion Boxes can go up in all three clinics.
  • It was noted that the Chelsea and Westminster Healthcare NHS Trust has now achieved Foundation status, and henceforth should be referred to as Chelsea and Westminster NHS Foundation Trust. It was noted that all references in the online website will need to be updated accordingly.
  • Charles Oduka, EHH User Involvement Officer with Hammersmith and Fulham Social Services and APHN Trustee, then attended the meeting. Charles was invited to the forum meeting to share his extensive knowledge on the raising of awareness within Patient communities, such as the KVN Forum, to help the forum to grow in the ways it needed to, and to service the needs of the Forum by being made aware of the where's, who's and when's of becoming an established voice in the greater Network of involved users. Charles raised a number of points, beginning with outlining a number of ways that the Forum could access Funds, so as to assist with managing the great number of tasks that was felt as relevant and important to the forum members.
    • Firstly there was Funding available from the Department of Social Services themselves - even from the department that Charles worked in, where part of his remit was to assist in the establishment and growth of such Patient forums and support groups.
    • There was a Duty of Care placed on the PCT themselves that bound them to assist with funding to such groups as well - this should be pursued.
    • The Elton John Foundation could give some funding
    • The PPI Forum, and
    • Sexual Health Steering Groups [in all boroughs]
  • Charles then went on to talk on how user groups like the KVN forum could have their views fed back into the system, and these were some of the suggestions he gave as to how this could happen:
    • Be partners of the service providers – namely work with the Trust in as many ways as possible (like the undertaking of the phlebotomy audit).
    • Get users to actually use the services available, rather than give in to complacency, as this could lead to the eventual loss of those services (as in the River house example).
    • Write letters to the Commissioner of Sexual Health - can they be influenced to speak to other Commissioners on our behalf?
    • Try to gain access to the Commissioning Panel - perhaps try to sit on the Panel itself
    • Take part in any/all consultation processes - for example the two consultations which have invited recent comment - the Consultation on Confidentiality and another on the Criminal Prosecutions brought about through HIV infections being passed through non-declaration of infection from one person to un-suspecting others.
    • Try to get local Councillors involved in the Forum discussions and make them aware of the forum and of users views - also members of parliament [Politicians] - try to find a "champion" in positions of influence - who can take the fight to a higher level as and when necessary.
  • There was mention of the requirements for Transparency within the PCT, to freely disclose how their funds are being spent... He went on to say that Simon Farnworth should be able to produce the figures for the Kobler Clinic, if the forum thought it appropriate.
  • Charles then rounded off his discussion by distributing the two papers under consultation - mentioned previously - both have been sent out to the online forum in recent weeks, and comments are welcome, both to the online forum and to the Directorate themselves via the online or postal details supplied.
  • This moved the discussion to query how the various NHS and PPI organisations were actually structured, and could these be in some way explained, so that the forum members could hope to access those strata more readily. Jane Bruton stated that the Staff themselves were also hoping to have such detail relayed to them, and so noted that there was going to be some training of users by the PPI subgroup, to help all to negotiate their way through to achieving their goals of having patients needs met.


Please forward all points/suggestions for next meeting to the online forum, or directly to Christian 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.

The next meeting of the KVN Forum will be:

on Tuesday 7th November, 2006 6:00pm to 8:00pm

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

Refreshments provided.