Lisa Power from the Terrence Higgins Trust attended the KVN Forum this evening to answer questions from forum members on the DLA Review.

In due course the minutes will be placed by the Chairman on the KVN Forum website.

Questions were drafted in advance of the meeting from members and presented to Lisa for her perusal.

What follows are the points that I picked up.

THT was invited to take part in the DCS Advisory Panel about a year ago.  At the time their membership of this panel was subject to a binding confidentiality agreement.  THT considered it's position on this. They decided it was better for a HIV organisation to be involved to try and make the case for those living with HIV in the UK.  Lisa works with another colleague on this panel.  They managed to get members of BHIVA to also advise on the issues face by HIV people in relation to review, the impact etc. As mentioned they made the case, whether they were listened to by government was another issue. THT were unable to comment until the review pilot started.  THT still meet every 3 months or so as a member of this board.

Lisa was asked if she would make more of the information discussed at the DCS Advisory Board available. She said she would look into it and where she could she would.

Lisa was questioned at length about the somewhat slow approach taken with the publication of information on the review to the THT website. She acknowledged that THT had been slow. She apologised for this. I asked her if I could "blog" about this apology and she gave her consent.

Lisa mentioned that much of the discussion about when and what to put up and make available was driven by the concerns over whether this would seek to merely frighten people. She admitted that with the benefit of hindsight things should have happened faster.

The subject of the 0845 number was raised. It was mentioned that people on payment plans might benefit from an ordinary number that would be free to call given the current offerings from telephone providers. She was further asked why an organisation like THT did not have a freephone 0800 number. She initially replied this was down to cost. However one member of the panel mentioned that an 0800 number was available at reduced cost - the example given of that of i-Base. She was to get back on this point.

The subject of the Incapacity Benefit IB50 forms was also raised and why there was no information on the website still about this.  It was explained that as well as getting DBD551 forms for DLA people were also being sent IB50 forms to complete. Where, because they were in receipt of Higher Rate DLA Care they were exempt. Jim of the Forum was mentioned as the person who brought this to light. As an aside, I thanked Jim again today for providing this information to us & T_hCell so we could let you all know. Lisa said she would look in to this.

Lisa was questioned on the legal advice THT had taken on the review.  At a previous meeting the THT Direct Manager stated that the delay in getting information onto the website was due to the legal position being explored by THT. This process has shown no profit from the advice given.

Today Lisa mentioned there was now a legal issue with the Disability Living Allowance and Disability Working Allowance Act 1991 that she would now be going back to their lawyers on. We asked why the advice originally sought was not from a lawyer specialist in welfare law. She said this had only just come to light. I told her that we (T_hCell) had been aware of this for a few months and just today had secured a legal firm to run with this on a "pro bono" (Free) basis. (We have a welfare rights specialist by the way)

Either way we as a community need an answer to this, but I digress.

Much of the conversation dealt with the perception of THT within the community they claim to serve.  The point was made "How come someone in there living room can be running with this issue with no funds and, THT with all the resources available to it, has not?" ( I should interject here that T_hCell is a group of people now, we work with other groups like the KVN Forum, Feedback South London ** etc. on this issue) but essentially it is still done on the good will of people with little funds and from a living room.

Lisa acknowledged that THT needed to involve itself more with the activities of groups such as the KVN Forum.

The issue of Sexual Health provision with the opening of their clinic on the Wirral was mentioned. In relation to this being a change of focus for THT away from its HIV historic base. She said this was not the case.

Advocacy seemed to be an area of confusion. It was mentioned that 4% of THT's spend was on Advocacy. Lisa questioned if THT actually mentioned it was an advocacy organisation and was minded of THT's own words on this.

Lisa was very open on the questions asked of her. One of the issue's I had was that she was unable to address some of the questions as they related more to the field of one of her colleagues. I mentioned that we had this when the manager of THT Direct had been to address the forum. That is he could not answer certain questions as they were a matter for THT Policy (Lisa's role). That it seemed that the buck was being passed on certain issues. Lisa said she had been honest in all her replies and it would be unfair for her to comment on an area which was outside of her field.

It was a lively session and Lisa agreed she would come back over time at the invitation of the forum to discuss other issues.  It was very productive.

I met Lisa afterwards and whereas we disagreed in many area's what I like to believe we both agree on is the need for the dialogue to continue. 

When the minutes of the meeting from the Chair are available I will blog about them.

This is my view and should not be taken as the view of the KVN Forum or its members.

Of course if Lisa reads this and she wishes to comment I will publish for balance, as always.

** T_hCell and any group we collaborate or work with are all wholly independent of each other. The views of T_hCell therefore should not be taken as the views of any group mentioned.