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.