About Us
The "Why?" of this site.
Firstly my thanks to my partner for his support with this project on a personal & technical basis.
You will notice that the 
logo and group are starting to appear on this site. That is because we are now a team of people. Using our various skills to raise awareness and promote the issues we face.
About
I am a gay man living with his partner. We have both been HIV+ for a number of years. We are both going through the Disability Living Allowance "Special Rules" Review. When the initial forms arrived. I searched the internet for information on the changes and to see if anyone had published their experience. I found information scattered all about the web & no one's experience to draw from.
So I decided to start a blog to at least generate awareness of the issues arising. To bring together information strands into one place to save unnecessary surfing. To provide some comfort to those facing changes in their benefits that they were not the only one affected. To act as a portal to share experience.
The blog whilst serving a purpose needs a little more organisation. Thus this front end. The blog will continue to be updated as and when I get information and remain the main point of shared experience.
I have a co-author now. For which I am grateful.
I believe in "Credit where credit is due" I have no problem in attributing credit to those who help and assist in this project. Please let me know when you contribute if what information you are happy to have published concerning your identity.
February 2008
We are now a group representing the interests of our wider community. We are currently discussing the formulation of a small, wholly independent voice for and representing our community. For which this issue is our first campaign. More on this will be posted to the blog in due course.
Thank you to everyone who is now on board and helping us all.
For the time being, and whilst prudent. I am happy to be the face behind this campaign.
Background & History of the Web Site
PDF version
Comments
6th April 2008 bring you right up to date.
New Website launched & still being worked on.
Group activities on going and growing
Our history on our review detailed on blog's
Background activities include friends & supports raising awareness on our behalf
Written to several MP's & members of the House of Lords
Contacted All Party Parliamentary Group on AIDS , awaiting feedback
Attended MAC AIDS FUND presentation on HIV & Stigmatism
GL24 form uploaded to web this is the How of the appeals process
Information on trade Unions added
Research
Emotional support group underway
Our DWP files arrived
Positive Nation Ariticle on benefits published
Gay times letter to be published in April Issue
More comments added (Thank you so much for these)
As always trying every avenue, as health allows, to raise our issues ( idea's welcome)
Of course the blogs always have the detail of activities undertaken. These entries are merely a synopsis.
Week Commencing - 3rd March 2008
Jim Dealing with his press contacts.
Created Information Pack for KVN Forum Meeting.
KVN Forum Meeting on the DLA.
Week Commencing - 25th February 2008
NAM/THT meeting 25th Feb 7 p.m. to 9 p.m.
Meeting well (c. 80) attended and networked well.
Several conversations including with Mik as to how to drive this forward.
Asked NAM for meeting notes.
Steve to come back with info on the whole process from initial form and how to challenge.
My partner redesigned & published the new website. Hope it is more friendly.
Spoke to Charities Commission Spoke and wrote to Elton John Aids Foundation re: potential funding.
Trying to set up an organisation with Mik/Steve & others. Partner chasing up on Mik’s idea to integrate the currently split site into one Content Managed site with a potential forum.
Looking for a meeting space.
Still waiting to hear back from letters to ministers.
Looking to set up some standard forms i.e. Letter to local MP etc.
Research.
Promoting issue & dealing with emails & comments.
Written personal letters creating awareness to Sir Elton John & Lord Smith of Finsbury.
More blog authors added.
Forming a group of key players, a general campaigning group. Small & independent in nature. Not a charity. With DLA as our first campaign.
Meeting place sorted.
Thanks to one of our key group members and the assistance they have elicited form Positive Nation.
Thanks to one of our key group members and the assistance they have elicited from the media.
Mik & Steve produce key Guidance on history and the process. So we all have an idea of how we deal with our claims.
Andy updating website.
As always thanks to YOU for creating the awareness. It is YOU that is making a difference to OUR issues.
Sample MP letter written and uploaded Nigel raises awareness at a HIV Conference More signatories to the 10 Downing St RRP petition Thanks Jim. Emailed the following 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. There was no particular reason for these MP’s over others only – I was able to get there email address & believe they might have an interest. I have asked them to pass the info on as appropriate.
Jim suggested a letter to Ken Livingston Re: more central meeting place. Letter sent. Thanks Jim.
Wrote to TRH Princes William & Harry.
Wrote to Jeremy Corbyn as his email bounced back.
B, provided the PCA Test points overview Thanks.
Written to Stephen K Amos
Week Commencing - 18th February 2008
Added Debt Advice Links.
Added info on Hammersmith & Fulham PCT & THT Called Hammersmith & Fulham PCT to find out what the funding they give to THT covers. Awaiting call back.
Moved "Short & Long term " impact to separate page Added comment to index about stopping medication. To make the position clear.
Added info on Crusaid & hardship funds.
Commented on BBC
"Have your say" debate on sick notes.
Setup Forum on http://www.benefitsandwork.org.uk on HIV+ people and review.
Added Jim's experience to blog and web. Thanks Jim.
40 years old this week. Have survived 8 years now with HIV. Longer then the 6 months I was originally given.
Week Commencing - 11th February 2008
Speak to the Brian Paddick campaign team.
Speak to DASL.
Speak to Positive East.
KNV Forum email details of NAM/THT meeting on the 25th February.
Post this to blog.
Speak to DASL, Positive East, GMFA about the NAM meeting to make them aware.
Speak to Positive Nation Magazine who confirm an article in the March issue.
Speak to editor of QX magazine to thank him for article.
Speak & email NAM about capacity for meeting.
Update my forum post elsewhere with news.
Filling in my partners DLA556.
Speak to HIV Consultant - Just received my medical report request.
Email my consultants about NAM & KVN meetings on DLA to pass around there colleagues & patients.
Speak to Motability about the Car Scheme and general advice for people who may loose or get a reduced mobility component following review. Post information to blog.
Finishing touches to website & published.
Rang Hammersmith & Fulham PCT to find out what the funding they provide THT provides.
Read through THT Trustee's report for year to March 2007.
Problems with blog comments fixed.
Pages on Meetings & EAS added to website.
Prose on issues added.
Wrote to Minister for Disabled People.Minister of State DWP & Chair of Work & Pensions select committee.
Submitted partners forms to DWP.
Requested information from DWP under DPA.
Added Poll to blog .
Week Commencing - 4th February 2008
Attend my first KVN Forum meeting. The DLA is an agenda item & this is my prime motivation for going. A good group of people. As a patient of the Victoria Clinic. I shall now go regularly if only to represent my clinic. DLA will be a major item for next meeting.
Start getting messages about the review of Incapacity Benefits. Research & post to blog.
QX magazine publish an article on the DLA review.
More emails & some more published experience Start Building this website.
Ring River House Trust to create awareness of blog.
Week Commencing - 28th Janurary 2008
Partner receives his re-application form DLA556.
Ring THT. They are not able to help with the DLA556.
More shared Experience posted.
Wharfside Patents forum approach Positive Nation to see if they will do an article on this.
Added a Site counter to blog to track how many hits it was getting.
i-base help with UK-CAB
awareness Emailed out, 28th January 2008, to all organisations I could think of, find including BHIVA, THT, GMFA, KVN forum, NAM. In fact most of the links quoted on this site were emailed. Just push the issue.
Change the URL for the blog to make it easier to remember.
Posted to BBC "Have our say" online debate on Incapacity Benefit.
Week Commencing - 21st January 2008
Hear from Wharfside Patients forum. Very supportive.
They link to my blog from there website & contribute as a co-author to blog More email/web research.
Post to blog & elsewhere as I can.
Week Commencing - 14th January 2008
Having found information difficult to find. With no one sharing there experience. I start a blog on the 16th Jan. To raise awareness, start opening up the issues and to give solace to anyone else that "they are not alone" if they are subject to the review also.
THT Finally put the information up on there web site.
Start promoting blog on other gay websites.
Research the relevant acts & reports.
Start receiving comments & emails from others sharing their experience.
My patient forum, KVN add the review to the agenda for there next meeting.
December 2007
Both Received DBD551 form asking for review & medical information.
S0earched internet for information. It was all over the place. Came upon the 10 Downing Street Petition Found nothing on the internet from the HIV support community or my local patients forum.
Emailed out, 7th December 2007, to all organisations I could think of, find including THT, GMFA, KVN forum, NAM, in fact most of the links quoted on this site were emailed. I wanted to find out more information.
Filled in form and returned it.
Christmas happened.