I just wanted to share two meetings I have attended this week.

The first was with THT, Forum Link project, UKCAB, HTU (NAM) and various patient groups.  This was to discuss the issues concerning the general funding picture across the UK for HIV service provision.  The meeting agreed to a degree of confidentiality over the content to allow for full and frank discussion.  Given the scale of challenge that the community faces it is necessary to facilitate this provision to more adequately plan ahead. HTU (NAM) will report back on some of the content where disclosure was agreed.

As you know I prefer transparency, however this was productive. 

Essentially, no organisation is going to be immune to the cuts and austerity of the next few years.  As we have often reported, alas, some organisation will go.  THT is sufficently large to withstand some of the change but will not be immune.  This last week saw cuts to council funding and plans on the NHS being disclosed.  HIV service providers rely on contracts from both local councils and the NHS either directly or via PCT's to pay for HIV service provision.  With the termination of PCT's this leaves that funding pot very uncertain at the moment.  With the removal of ring fencing for the AIDS Support Grant and cuts to local council income, again there will simply be less money to provide services in certain areas. With the changes announced in the last week both the NHS and local councils will take time to re-examine budgets and priorities. It is the time taken here, where smaller organisations don't have the cash reserves to cover them, that is concerning.

Couple this with the benefit changes both the number and pace. It is not that organisation will have to deliver more for less. They will have more seeking help on top of providing more for less on the usual level of support an organisation would typically handle.

This means more innovation.  Some difficult decisions. What to keep and what to loose? In some cases services will be lost as they are simply not being funded.

The meeting was very constructive and there are plans to hold more.  This keeps the community informed of what is happening and why? Of course this does allow the community to feedback on what matters to them.

Please support your local support service, no matter who provides it.  Ensure your local councillors account for the AIDS Support Grant money they recieve to support you.  If you can, give a few hours of your time locally to keep a service running. 

For me, the meeting indicated the degree of financial uncertainty not only faced by one of our larger organisations, but that the fate of smaller organsiations was certainly very concerning using this as a guide.

The second meeting was to discuss Benefits, the changes, what was needed in terms of policy and how to get consistent messages across to those affected (you and me).  THT hosted this meeting, UKCAB, HTU(NAM), George House Trust, National AIDS Trust, Waverley Care, Postive East, T_hCell (us) and other service providers whose names escape me (apologies - I will edit this when I get the minutes) met to discuss this.

Personally I was really pleased that so many had come together from our community to discuss the issues, raise problems and worries and take the first step to, hopefully, deal with the scale and pace of the benefits changes as a whole community.

For me, and I haven't yet had the chance to feed this back, we need to have two approaches/meetings.  We need to work on the information we need to get out to those who will be impacted (you & I) so they can understand the process a type of "Information toolkit" that people can refer to, in very plain English. Secondly we need to deal with the policy side where we can discuss what area's of policy we should be pursing in terms of campaiging and trying to pursuade goverment needs a "re-think" as it effects people living with HIV/AIDS.

Both are clearly linked to the person in the middle (you & I).  We need to be able to relate our experiences, collect the data that we as a community can be used as evidence to feed into the policy challenges we face.  Here this experience data needs to cover all the types of people that live with HIV/AIDS and moreover from around the country.

To this end THT suggested that it might be a good idea to try and find about 30-40 people who would be willing to be "followed" over a year to get some full personal stories on not only what happens during a benefit change for them, but before and more importantly after.  The data collected would be shared within the community, understanding that confidentiality will be fully observed and maintained (the data available to be shared will be anonymised).  I have to say I like this idea in principal.  If all the different organisations around the UK and on the web can convince a few members from there user base to take part. We are one step forward to working together on key issues as a community. Of course the shared data allows for national organisations to support policy (consultations, lobbying etc) as well as local organisations.

I know some people can have some cynicism in certain area's (putting this politely). Personally I do. However we simply do not have the luxury of the time or effort when it comes to revisting these.

We need to move together, where we can on the common ground and the broad issues we face.

I continue to believe this common ground extends to the wider disabled community. 

20 years ago it was much easier to make the HIV/AIDS case. In this parliament we are seeing the most widespread and complete planned change to health/social & welfare support, since then well the last war infact.  The benefits Antiretroviral therapy have thankfully brought to many, mean the arguments have changed and the case more difficult to make. We need good evidence.

As an organisation that earns no money from the HIV sector, we can be a little more hopefully, some would say idealist here. However we don't have funding worries (we have none), we are not in competition for funding BUT we realise that this is a senstitivty for some.

Off the top of my head. We discussed the number of assessments, you tell me that you prefer fewer.  On "Universal Benefit" I think for many reasons this is generally a step in the right direction. Where we need to ensure this is fair for us is to ensure that those that assess us and make the decisions have proper HIV training. That the disabled community is able to get real action on the issue of "fluctating conditions" (in every forum accross all disabilities for the last 18 months this contiunes to be an issue), this very important for people living with HIV working or not. The Harrington report into the Work Capability Assessment was discussed as well as how we might prepare for the next review next year. The Lord Fowler review in to HIV. How we get involved in the "Work Programme" training the delivery companies in the issues HIV people face with employment. Legal Aid, briefly and the consultation due in February - this will limit the legal recourse for HIV people that need to challenge on benefits, housing etc . The next welfare reform paper. DLA and the proposed changes. The role of the Decision Maker. Benefit Sanctions and when to inform of a change of circumstance. The information differences between the collection of data depending on the benefit applied for i.e. What you can do? What are your Care needs?. Data abuse within the DWP that is WCA data used to influence a DLA claim or application. Housing & Council Tax benefit, shared room rate, associated benefit sanctions. Time limited benefits.

When I get the minutes, as said, I will be able to post more. I will update this thread when further meetings take place.

Finally a personal note.  T_hcell started a few years ago because as an individual I was unable, having tried on the web and via email to get any information or support for the DLA review from the organisations that claimed to be working in my interest and to support me as a HIV+ individual. Over time we have grown with a small organising group, people like Kevin giving there efforts and seen our presence grow. Today was encouraging and inspiring to see many many organisations comming together, giving of effort together and a much better place than before.  Being a "glass half full kind of person" I hope this engagement can continue in a constructive manner.  We will not win every argument. We will not get all that we want. We will however achieve much more together than we will apart.