Tcell group.

Another successful meeting this week.

We are keen to find out what your thoughts are on what we do here. So please drop me an email or comment accordingly. Thanks. If you would like to get more involved also, please email me.

New website & blog moving....

Hello All,

This morning we put the new website online. This is a proper content management system and brings with it many advantages. It is searchable and allows us to contain the blog and start forums on relevant subjects.

All of the key information is on there including all the information on the old site.. Though certain areas are still being worked on, though these are new in nature.

This is our community resource. So it relies on you and your input to tailor it. Please take some time to look through it. Any comment or enquiries please email us.

Thanks,

John.

Jenny Willott MP

Thank you to Jenny Willott further to a previous post.

I received an email from her this afternoon. In which she acknowledged she has seen the website and this blog.

Thank you for taking the time to appraise yourself with these issues, Jenny.

John.

Rt. Hon. Lord Smith of Finsbury.

I recieved a handwritten response from Chris Smith, the Rt. Hon. Lord Smith of Finsbury this morning in the post.

It reads : "Thank you for your letter, kindly drawing my attention to your website. It certainly looks an extremely valuable resource for those affected by HIV, and I'm grateful to you for directing me to it. Good Luck for your campaigning."

I will scan it in, in due course. The website is undergoing a major overhaul at present.

Thank you to Lord Smith for his kind words & response.

Important information if you ask for a re-review or appeal

Thanks to Jim (Tcell) for raising this. Also thanks for Steve (who is a Benefits Writer & Trainer) of the Benefits & Work website for coming back so quick with an answer.

The issue was:

"If I ask for a re-review or an appeal. Could that process result in the original decision made. Being lowered or my Disability Living Allowance being removed?"

I posted this to the members forum on Benefits & Work. You may need to subscribe to get access to this.

Steve replied:

"I'm afraid the answer to your question is that when you ask for a decision to be looked at again your award can be reduced or removed altogether. That applies regardless of the nature of the decision you are asking to have looked at.

Clearly the likelihood of this happening will depend very much on what evidence there is to support the current award. It's part of a welfare rights worker's job to assess the strength of a case and advise on the degree of risk - but there will always be some."

I mention this so that you can make a considered decision if you are unhappy with the result of your review and wish to challenge it.

Also I hope you see what a valuable resource the Benefits & Work website is.

If you want to read more about the site click here.

Just to let you know ...

Further to my post Updates of Friday 14th March 2008 .

I received and email from the PA of Jenny Willott MP and Liberal Democrat member of the Select Committee for Work & Pensions.

In this email it mentions that here office is aware of our blog.

I would like to thank her & her staff for taking the time to appraise themselves of our issues.

Jenny Willott MP represents Cardiff Central. If you live within her area. You can find her web site by clicking here.

This entry is not an endorsement of any political party. I merely mention it for completeness. If you are aware of positions taken by others please add a comment with details or email me.

Updates.

Well, Budget Day this week has started the debate on the Employment & Support Allowance. It has allowed us to get some idea of what, the powers that be, plan for those on Incapacity Benefit.

We have some more support from some well known faces. The last to sign was June Brown and the number of signatures continues to grow on the RPP petition.

Two weeks ago I emailed -MP’s & members of the W&P select committee. Vince Cable, Diane Abbott, David Cameron Ming Campbell, Jeremy Corbyn, Frank Dobson, Alan Duncan, Angela Eagle, George Galloway, Greg Hands, Glenda Jackson, Stephen Timms, Keith Vaz, Anne McGuire, Terry Rooney, Anne Begg, Harry Cohen, Michael Foster, Oliver Heald, Joan Humble, Tom Levitt, Greg Mulholland, John Penrose, Mark Pritchard, Jenny Willott.

I have had no response. I note that this week our issues have been picked up by the wider Budget debate, by some of the above. Am a great believer in "nothing ventured nothing gained" and doing something is better than not even trying.

I wrote to THR's Princes William & Harry. Prince Harry is very involved with HIV/Aids in Lesotho. I have received a response and will upload it to documents on the main web page.

The team, Tcell, is getting more organised. Working in the background to raise the profile of our issues. Thanks. More soon.

My partner is working on a new website to include this blog & forums. If there is anything you would like to see. Please email me. This is as much your resource as ours.

The GL 24 form from the DWP on how to appeal a benefit decision was added to Documents. Please read it it covers the route of appeals for all benefits and may prove useful elsewhere.

Note the responses to the polls, to gauge the picture of how this is affecting people. Thank you to all who have taken the time to vote & help with this data collection.

I note that of the 11 "votes" cast on the poll "I have had a decision on my DLA and.." - 5 people say it has stayed the same with 4 reporting a change.

Thank you to all who read this. I hope it helps. Thanks to all those who email & comment, sharing there experiences with us all.

Supporting our cause ....

Thank you to the following who are lending there support to raise the awareness of our issue. In pursuit of drawing attention to the impact this review means for us all.

Kate Williams.
Actress - Widows, She's Out, EastEnders. .

Che Walker.
Writer & Director .

Race Davis.
Actress - Roughnecks , EastEnders, Men Behaving Badly .

Daniel Kramer.
Director - Stage production of Angels in America .

I only post names of "famous faces" where the member of our team who has access to this network confirms the identity of the name. Thanks Jim.

If you are a famous name supporting this campaign via the DLA RRP Petition on the 10 Downing Street Web site. And we have not thanked you directly or given you mention.

Please drop an email to me (john@hivbenefits.co.uk) to confirm your identity and consent to allowing us to draw attention to your valuable support on this blog.

Of course, we thank everyone. In which ever way they can contribute to this campaign. For there valuable support.

Website is live again.

The move was successful. The blog is hosted separately so if the main site is down this should still be live (and vice versa)

Any issues etc. As always email us and let us know.

Problems with main website

We are aware that there maybe problems with the main web site. So far we have hosted it on the webspace provided by our ISP. This has a limitation as far as data traffic allowed.

To resolve this. We have taken up a web hosting package from a company we have used for many years. This will cost £7.99 per month for the time being. Of course technically this does bring additional benefits to us.

Please bear with us - we are undertaking this activity at present. I will post when the issue is resolved.

It is unfortunate than any activity such as this does have a financial impact. We will seek in the future to raise the necessary funds to cover these expenses. In a manner that maintains our independance at ALL times avoiding "conflicts of interest. Though I don't expect the funds needed to maintain our ongoing operation to be particularly high.

Please be assured we will keep full accounts. And when funds are available I will seek to recover these incidental running costs.

Though clearly our campaign is our No.1 priority at the moment.

I want our community to see that the team that leads this , and & any future campaign. Does so in an open, honest & transparent way. I hope this entry demonstrates this philosophy adequately.

Thanks to ....

Jim, for his efforts regarding his media contacts. Some well known faces are now supporting all of us, regardless of disability. In the struggle we face with this review.

I have a forum on the Benefits & Work website - DLA review & the HIV+ Community. So far 634 hits.

I posted this,

"There is a 10 Downing Street petition on the RRP found at http://petitions.pm.gov.uk/DLA-Review/ .

Thanks to a member of our campaigning group we are starting to see some famous names lend their support to ALL of us who are going through the Disability Living Allowance review, regardless of our disability.

Some of us are more vocal than others than this. We don't mind. We know not everyone for whatever reason, most likely health, can contribute. You can feel isolated, scared & worried.

I hope this gives you some comfort that you do not face this alone.

At time of posting

Ann Mitchell
Widows / She's Out / recently, stag production of Angels in America and EastEnders

Hannah Waterman
New Tricks / EastEnders

You will find them at the bottom of the page.

Of course not only on behalf of http://www.hivbenefits.co.uk but our wider community I have passed our thanks on."

Thanks also to YOU. Word of mouth it one of our key tools here to get the powers that be to wake up to this.

We need a meeting place?

As part of our drive to become more organised. We need a meeting space so that those of us who are driving this campaign can come together regularly and plan.

If you are reading this and work for an organisation that would be willing to give us a room where we can meet. It will have to be evenings as some work. I would be very grateful if you would get in touch via john@hivbenefits.co.uk

The last 24 Hours.

Just want to make you all aware of what has happened since the NAM/THT meeting.

You may recall a gentlemen. Who contributed to this meeting last evening. Who seemed to have some specific benefits realted knowledge. I have had some discussions with him. I will check to see if they he doesn't mind me using their first names on here. UPDATE : His name is Steve and he has good background experience.

Steve will be providing some information on the process we might go through when challenging any adverse decision we might have on our reviews. I will post it when I get it. Thanks guys.

They along with many of the comments both last evening and received during the day.

Clearly point to us having to organise ourselves better.

Many have the professional skill sets we need to make a start, and have made them available to help fight the issues we face. Though to move forward will need to find others with appropriate specialist skill to also help.

Time is the enemy of us all so we must seek to use it wisely.

Again pointing to the need to put a structure in place to play to our strengths as a community. Where serving the community as a whole is paramount and “ego” is left at the door.

So the current "background" conversation is around forming a "legally defined" organisation, a charity. So we can fight under the banner of a group rather than individually.Applying for funding for the incidental costs of running a campaign.

Clearly there is a niche for a national organisation to campaign for those within all of our HIV community. Who, for whatever reason. Rely on the state to meet their day-to-day financial needs.

• To ensure that our community can access clear information for they or there support workers to use to help get those with HIV, the financial assistance they are entitled to.
• To raise awareness of the issues the HIV+ community faces to ensure fairness from the State in relation to benefits.
• To utilise the strengths and skills within our community to achieve this.

• An organisation that remains, independent, politically impartial, where no conflict of interest prevents campaigning on the issues.
• Deriving funding on the basis it is without strings allowing the voice of our community to be free.
• That where you live & how your local council invests it money in HIV services, doesn’t dictate who you can approach for support.
• To partner with likeminded organisations subject to the aforementioned.
• An organisation open & transparent to those who may use it.
• Accountable & scrutinised by those who use it.
• Ideally a co-operative type model where we all hold a stake.
• Where those who hold the necessary offices of responsibility do so on the basis that stakeholders have clearly indicated their ongoing approval.
• That our aim should be to accept criticism as a driver towards excellence. Where it is always welcome.

Always moving forward. Thinking out of the box and out of our comfort zone where necessary.
Realising our limitations today are our goals for growth, tomorrow.

Initially this organisation will, because of size, only be able to generally help though the web & other media. Provide general guidance and information.

An organisation that empowers members of our community to tackle the benefit issues they face more specifically and independently. Giving the confidence to do so.

Though its existence & work. Shines a light on the failure of others i.e. the state. Taking them to task where appropriate.

I believe our community fell asleep. Many I meet are “seasoned” campaigners who fought for the rights our community have enjoyed, including myself, since the early days of HIV/AIDS. Many of these have because of age, numerous drug regimes and the results of surviving long term with HIV. Are not able to be as vocal or active of some of us. But we must harness this vast pool of strategic & tactical campaigning experience.

Most of us have Disability Living Allowance because of the fighting these people did at the time.

I have benefitted from this early work. Now it is my turn to stand up and be counted. I am so grateful for the advice, guidance and support.

We were caught of guard. We have some catching up to do. Our campaigning is already showing some results. We can do more.

We must not allow our community to sleep again. We must ensure the “mantle is always” passed on. Under the guidance of those who came before & learnt many of the lessons.

We know the how & why we feel let down over getting help with our benefit problems. Lets right this shameful wrong.

Many people who find this site thank me. Which I appreciate.

What can I do to help? They ask.

Very simple.

• If you have a view or opinion express it.
• If you have a criticism, make it.
• But to serve us all. Spread the word, create awareness.
• If you only tell one other person that is a tremendous contribution to this cause. Awareness is golden.

These are my views and opinions. Please. I invite your comments.

This should be by us, for us, to serve us.