FrontLine HIV Forum Meeting 5th February 2008

Submitted by christiandecle on Sat, 08/08/2009 - 13:37

Attendees: 12
Apologies: 2

The next ordinary meeting of the Forum will be held at the Kobler Clinic, Tuesday 4th March 2009 on the 4th Floor of the St Stephens Centre, from 6:00pm to 8:00pm.

This document details the discussions held by the Frontline Forum members at the last meeting. They are not complete minutes, more notes or points loosely captured in no particular order. Apologies for any points missed. Many thanks go to those who participated, and well as to those who continue to contribute through the online forum.

  • The ‘Role of GP’s’ event – CD opened the discussion by saying just how successful the event had been, both in terms of the Forum having it’s chance to air the pro’s and cons of where the Government white paper is heading. CD thanked all the Forum members who’s hard work had paid off by making the event a memorable one, and one which has very much made the Commissioners sit up and take notice of the opinions of service users. It has been noted that the event has been discussed in many circles – in other patient forums, and within the management strata of the NHS, where there was significant note of surprise of the poor levels of service being experienced by patients using their GP’s for various treatment services. Overall, the event has raised the KVN’s standing in the professional community, and many are asking what topics we shall be addressing next, so as to lend support, and see what outcomes we might engender. CD proposed that there should be a review further down the line, and perhaps a follow-up event – watch this space.
  • KVN Website – there was general agreement that the website should be moved onto a web-hosting provider’s server – rather than continue to reside on PD’s server at home. PD was absent from the meeting, but will work on researching alternative suppliers and prices when fully recovered.
  • KVN – where next? Ideas on simmer at the moment:
    • Long-Term Survivors – the term was thought by some to divisive, and suggestions to amend the title to present itself as “Long-Term Survival – Living with Chronic Illness”. There should be a meeting dedicated to addressing the issues of surviving HIV in the long-term, i.e., medication side-effects, aging, diminishing employment prospects, but it should also be an opportunity to share experiences of surviving the illness. Dr Pepe Catalan has offered to speak to the Forum about the subject. JS reported on the LTS group event at the Riverhouse – it will be a monthly event.
    • DLA review: JCW forwarded information on the current situation concerning DLA reviews, and spoke of the forum supporting the movement to oppose the government’s review of this allowance. There are government websites where opposition can be registered: @ http://petitions.pm.gov.uk/DLA-Review/?signed=bbeb1b5.3f7132 JCW also mentioned his blog sites: http://hivbenefits.co.uk & http://hivdlareview.blogspot.com and other actions and events he is trying to organise to galvanise action over this topic. It was suggested that this could be combined with any Long-Term survivors events, as most LTS will be in receipt of DLA, and so will more than likely be forced to undergo a review of the allowance in the near future. Apparently HIV+ persons make up only 3% of claimants. It was further suggested that the March meeting should dedicate a large portion to discussing how KVN will address the DLA issue in general. It was suggested Bernard Forbes be invited. There was some advice given that if anyone is required to complete a DLA review form, that they should put their treatment consultant’s name on the form – not their GP. Some posters should be drafted up to promote a larger discussion event by KVN members and patients.
  • HIV Forum Link – Patient Satisfaction Survey – PD will update next meeting
  • Appointments via email: John Pickett presented the proposed new online appointment service to supplement the telephone appointment service. There were some constructive criticisms made around issues of confidentiality and the fact that a Third Party would manage the service.
  • Notice was made of complaints of treatment recently received by a KVN member while being treated in the main hospital at Chelsea and Westminster. Note was made of the use of Agency staff, and the poor levels of service received from them, very poor levels of cleanliness and overall experience of care. An official complaint is being presented, and will be followed up by Jane Bruton.
  • Educational event at Wharfside – 15th March – more info next meeting.
  • Positive Action 2008 conference – Lighthouse W.London 1st Mar – all invited to attend.
  • There has been considerable online discussion on many subjects since the last meeting, and in particular the DLA issue is gaining momentum, and will, as planned, take up most of next meetings agenda. Many Thanks to all who have participated in the discussion – there is much to do – let’s get the ball rolling.

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