Feedback South London - Thank you.

Thank you to all at the Feedback South London meeting on the 2nd May for the warm welcome & opportunity to mention the group T_hCell & the efforts undertaken by the team with regard to the changes in the Benefits system.

If you live in South London please check out the website (http://feedbacksl.org.uk) to find out what they do and how you can get involved on matters about your care.

Some thanks.

Thank you to all those who signed the petition http://petitions.pm.gov.uk/DLA-Review/ it closes on the 2nd May 2008 so there is still time to encourage people to sign. This is just one way of drawing attention to the issues around Disability Living Allowance.

Thanks to James , you know who you are, for the information and your efforts.

Thanks to ....

On behalf of all the Disabled Community affected by the issues surrounding Disability Living Allowance.

We thank :

Todd Carty

Actor & Director - Doctors, The Bill, EastEnders & Grange Hill.

for signing the 10 Downing Street petition on the Right Payment Program.

As always I link the name of our public supporters & friends to a site where you can see their body of work. Please take a moment to look.

Also I will add them, with their consent to the "Friends & Supports" page of the main www.hivbenefits.co.uk website.

Thank you.

To Lord May of Oxford for noting the contents of our letter.

Community Legal Advice

Thanks to K, who sent this information to me.

If you need legal advice take a look at http://www.clsdirect.org.uk/

They offer free, confidential and independent legal advice for residents of England & Wales.

Link added to Debt & Legal advice section.

Midweek Group. - Thank you.

The Midweek Group is a group of gay HIV+ men that meet on a monthly basis. To discuss issues, provide peer support etc.

I was invited to join the meeting this evening to talk and answer questions on the DLA review.

Thank you to the organizers and participants for this opportunity that I hope was beneficial.

For details of the group & if you would like to attend see http://www.midweeklondon.org

Shared Experience.

Emailed to me for inclusion here this can also be found at http://mark1-hivdla.blogspot.com/

"To everybody who may find this interesting or indeed helpful

i just wan't to say a big thank you for starting this site , i have found it
very useful and informative .
I will tell my story but try and keep it shortish , though thats quite
difficult compressing 22 years of ones life into a few lines , I'm a long
term survivor of HIV/AIDS I was diagnosed when i was 25 in 1986 which seems
like a lifetime ago , and i can hardly remember a time when i wasn't HIV +
If i cold have chosen a different life then i certainly would have done , i
would really like to think it hasn't controlled my life , but deep down i
know it has .
I was awarded DLA in 1996 with probably about six months to live i had a very
low CD4 count and a lot of KS lesions on my body amongst other infections ,
at this point i was still working (3 days a week ) god knows how, i used to
fall asleep at work on a regular basis .
it was around that time that i started on the endless drug trials which of
course i remain on to this day , my blood counts became better and i
continued working until 2001 when even though my my CD4 count was reasonably
high and my viral load non detectable i got another AIDS defining illness
just to beat me back down again , after being miss diagnosed with tonsillitis
for 4 months and endless amounts of antibiotics i was seen as an emergency
patient at st thomas
where i was diagnosed with non hodgkins lymphoma (cancer) they gave me a 25 %
chance of survival and i had chemotherapy for a year at this point i had to
stop work and have not worked since . i was a very successfull hairdresser
and got to the top of my profession having had to have a year off
i count on my DLA to live on these days along with income support and i'm not
sure how i'll manage without it my doctor was very understanding when i told
him about the review and told me to write my own letter and in explaining my
condition /disability and how it effects me etc . i don't think the
"decision maker" should base his decision on blood counts because they
certainly have had little bearing on the infections and illness's i
personally have had .
i was once told by a leading HIV doctor that your immune system isn't the
same once its been compromised

just to say thanks for reading this , hope the spelling wasn't to dreadful

i await the brown envelope"

Positive Nation March Issue

The March edition of Positive Nation is out and available on line by clicking here.

This edition has an article on the Disability Living Allowance review.

If you subscribe to this magazine it should be with you in the post or in clinic, shortly.

We would like to thank the team at Positive Nation for covering the DLA in this issue.

Some good news.

Please click here to read some good news on a previous posting.

You will need to access the comments to see the result the lady has received following here review.

Shared Experience.

Here is another shared experience. This was sent to in response to the request from Positive Nation for comments on this review a few weeks ago.

Thank you for allowing us to publish this here, also. So we can all share your experience & views.

Sam wrote,

"In common with thousands of other special rules claimants I am currently undergoing a review of my entitlement to DLA. Hundreds such as myself are in a state of acute anxiety and extremely fearful for our future health and circumstance.We have been, at best, poorly represented by the disability organisations empowered with our advocacy and at worst cynically failed by collusive or passive responses to govt. policy and propaganda emerging from the DWP. I have watched with disgust as the publishing and broadcast media have drip-fed a sustained weekly diet of stories, over the past 2 years in particular, of benefit cheats and frauds to the point where all those with disabilities are unchallengingly thus characterised. There is and has always been a resentment of those receiving welfare state benefits and a propensity to envy at our supposed champagne lifestyle, whilst lounging feet - up in front of daytime TV! I suspect we'd all need to be quadraplegic in order to identify as "genuinely" disabled. Our presumed state provided wealth another fiction grasped from the ether.I should like to point out that my own annual income of around £10K enables me to manage my living costs at a level 2/3 below my previous earnings when employed! Moreover the vindictive and distorted rhetoric of successive Secretaries of State charged with the DSS / DWP brief, have apparently engaged, with complete impunity, in a well-orchestrated and successful campaign via their press offices,and slavishly repeated not just by the tabloids but the "discerning" broadsheets and television and radio newscasters, which has cynically reinforced that public perception, with little or no counterpoint.

Where have THT been during this period of sloganeering and stereotyping? Alan Johnson cites evidence that work is good for health while the absence of work is deleterious to our health. "Most" disabled people want to work they declare, and of course the Disability Discrimination Act has made all of that possible the propaganda assures us! David Freud's advice to Government meanwhile is that our own physicians' evaluations of our health should be ignored in favour of that of medical stooges contracted by the DWP and tasked with reducing claimant numbers. Investment bankers are of course the definitive arbiters of all determinants of medical health and what constitutes disability.

THT grew from small beginnings with a brief that depended on the condition many of us have survived long- term, viz. HIV .They have subsumed the many autonomous self-help initiatives across the country to become a monolithic HIV organisation peopled by conferencing careerists, cosying and colluding with the Govt departments that are undermining the safety, health and well-being of all those currently living in terror of their futures. THT state on their website that they are working with the DCS to ensure the reviews are carried out as "sensitively"as posible. Anyone with experience of dealing with the DWP and the newly contracted private agencies knows that this is sophistry- they are a target driven machine who act summarily and arbitrarily, relying on the demoralised and bewildered claimants' exhaustion to deter them from pursuing matters to appeal. Incidentally what is THT's position on the governments plans to tamper with the appeals process in order to limit the number of successful appellants? ( whoops! I mean to make the process speedier and fairer!)

I live in the West of Scotland and the review came without warning (apart from my own longstanding anxiety that this would be in the pipeline). The DWP needed to attack higher rates of the care component of DLA for claimants if they were to also review their Incapacity Benefit entitlement , from which claimants were /are presently exempt.THT and other Disability organisations were forewarned of, and consulted about the DLA reviews but seemingly left claimants at the mercy of an unpublicised agenda.For many outside London support and advocacy is less easily accessed,indeed many are too frightened to do more than sit in miserable introspection whilst events overtake them and I know in my own case a sense of helplessness and powerlessness are predominant.

The assumption that long term survivors of HIV/AIDS or other individuals with disabilities due to different illnesses, are now fit and well enough to be subjected to work focused interviews and ultimately coerced back to a world of work which they may very likely be unable to sustain is appalling.Many of us affected by HIV/AIDS live with currently stable CD4 counts/Viral loads but still with disabling conditions. What are these organisations doing to remind government of the glaring holes in our pensions should we actually reach 65 and after stripping us of our current financial support ? Furthermore, if entitlement to free prescriptions /dental care is removed, as the dominoes fall, many face a choice of finding money they don't have to pay for scripts (only our HIV drugs are provided via our Hospital clinics) in my case this is about 25 items per month currently provided free!

When completing my review form I listed 13 separate conditions but I don't imagine the jobsworths at the DWP will do more than glance at a table of (revised) listed conditions which declare" variable" or "not usually disabling"or "progressive with poor response to treatment" before arriving at an ill-informed conclusion.Or conclude that a CD4 count above 200 means we're all hunky - dory, despite however many combination therapies have gone before, or what side effects and present disabilities are lived with; if you can stand upright you can work!

So congratulations to an agitating voice in the wilderness in the shape of John john@hivbenefits.co.uk and his TCell campaign, a little light in the darkness. And shame on you THT! You should be reminding the government of it's responsibilities to the vulnerable while members of both the House of Commons and Lords squander vast amounts on claims for travelling 1st class by train and air, by taxis,,for staffing expenses and mortgage interest payments on second homes, while those on Income support, if eligible for a community care grant at all, receive allowances guided by costings from an Argos catalogue.These very same honourable members receive payments in keeping with their rarefied status based on the costings of a John Lewis catalogue.

The political parties all nestle safely on the right of centre, and all, aside from those left wingers viewed as anachronistic by their colleagues, support the ever more draconian welfare reforms. We are up against currently one of the most extreme enacters of this in the shape of James Purnell, with his rictus grin and "THREAT" that " for those who do not play by the rules THERE WILL BE CONSEQUENCES !" The disability organisations seem conspicuously silent, like rabbits frozen in headlights waiting for this government "Elmer Fudd" to blast them! 5 Secretariies of State in the past 10 years! And aside from Andrew Smith, all burning with Blairite fury and fervour.while they dismantle welfare provision with unholy Thatcherite zeal.You know it makes sense!

I think it fair to say that a good number of us ,if not a majority, who are undergoing this nightmare exercise feel abandoned .There are too few to stop this particular oncoming train without the support of other voices raised on our behalf. The government has a massive pensions black-hole to fill and a leaky economy with no cash reserves though we remain one of the richest countries in the western world. An indicator of a countries values and morality is how it cares for it's more vulnerable members. We are an easy and fairly defenceless target despised for our "dependency". "Arbeit Macht Frei" indeed, if it doesn't accelerate your demise!"

Thanks to everyone who contributes their comments & stories.

This was posted as a comment but deserves an entry

"Hi to everyone,Im a hiv women age 38, i was diagnosed in 1989...19 yrs ago..to cut a long story short, i am also being reviwed..im currently in reciept of high rate care dla and high rate mobilility dla, when i was 19, i got the benefit straight away via special rules..the last 8 weeks have been very stressfull to say the least..and i have been very depressed and worried that i wont be able to cope if they take my benefit off me...i also feel that i have been made to look like a benefit cheat..which i am certainly not..what i would give to be hiv negertive and have a job( i used to be a hairdresser) i would be getting more money working that's for sure...i have been on every hiv drug going...and there are not many ,more options available to me now..im on a trial drug at the moment...anyway i filled in the dla form..but they was'nt happy with that they also wanted to come out to see me for a medical examination..anyway she came out on wensday, she asked me a few questions about the care i need..i have lipodytrophy wasting, kidney problems, muscel weakness...and mental health probs..that goes with being a long term surviver..anyway all she seemed to be interested in is how i aqquired the virus, she didnt ask me any questions what im like outdoors..she also tried to put words in to my mouth by saying you can turn in bed without help..i pulled her up on it( and told her i felt that she was putting words into my mouth, and know i cant move properly by myself in bed as i have a buffelo hump on my back..she didnt look at the hump..i got the impression she didnt want to touch me..anyway i feel its a disgrase the way longterm survivers are being treated..i would like them to live just 1 week of my life and see how it bloody feels..they havent got a clue...they are just looking at blood results, my blood results are good but i feel like crap most the time due to the side effects of the meds... long term survivers really need to pull together and fight for our writes, sadly those who fought for our writes in the early eighties mostly gay men..are no longer with us..i feel like we are being trampelled all over and nobody as any compassion for hiv people...im sick of hereing..its no worse than being a diabetic( bullshit) this disease can still kill..THERE IS KNOW KNOWN CURE FOR THIS GOD FORSAKEN ILLNESS)if my meds stopped working, i have become resistant to most..i would proberly die in 6 months as there are not going to be any options for me...this as become a nightmare with the added threat i will loose my benefit..and would have to survive on income support alone...does anyone know how long it takes after the medical examination for them to make a disision?..im very stressed out worrying about it..i dont feel like they are not looking at the full picture of somone living with this virus and the damaging effects it as on the body and mind...and the stigma( what employee would hire somone if they knew they was hiv posititve) not many i can tell you.most people who are fortunate to work, are in the closet about there status. "

I would like to thank the person who posted this comment for taking the time to let us all know her story. It cannot have been easy and I salute your courage. I felt your entry deserved more prominence I hope you do not mind. Please feel free to email me - john@hivbenefits.co.uk

Team Meeting this evening.

We had another team meeting tonite. I want to thank everyone who attended for giving up there free time.

The discussion went well and many issues arose which we will seek to tackle over the comming weeks.

We hope you enjoy your Easter.

Tcell.

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.

Thanks to ....

On behalf of all the Disabled Community affected by the issues surrounding Disability Living Allowance.

We thank :

June Brown.
Actress - EastEnders,

for signing the 10 Downing Street petition on the Right Payment Program.

As always I link the name of our public supporters & friends to a site where you can see their body of work. Please take a moment to look.

RNIB advice that is helpful to us all

The Royal National Insitiute of Blind People have published on their website.

The RNIB can only give INDIVIDUAL advice to those with SERIOUS SIGHT LOSS. Please do not approach them otherwise. Like many they have limited resources.

Some advice & guidance on


Attendance Allowance
Advisor's guide _ how to claim Attendance Allowance - tips for advisors.
Disability Living Allowance
Challenging a Decision about DLA & Attendance Allowance

Though this advice is from a "blind person's" view point. The central themes & processes apply to anyone claiming either allowance.

I hope this helps and empowers you with your claim.

Thanks to Nigel (of the Tcell team) for his research here.

Thanks to ..

On behalf of all the Disabled Community affected by the issues surrounding Disability Living Allowance.

We thank :

Simon Callow, C.B.E.
Actor & Writer.

for signing the 10 Downing Street petition on the Right Payment Program.

As always I link the name of our public supporters & friends to a site where you can see their body of work. Please take a moment to look.

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.

Some thanks are due...

Thank you to

Peter of The Eddie Surman Trust. And the friend who facilitated the introduction.

I would ask you to take some time and navigate to the trust by clicking here. You can read Eddie's Letter by clicking here.

I declare an interest here I have donated to this charity in the past.

The Wharfside Patients Forum. Thank you all for allowing us to visit your meeting this evening. I found the meeting very interesting and learnt much. Always supportive and very much appreciated.

Thanks to QX Magazine.

QX magazine covers the Gay Community.

Page 8 of this weeks magazine carried an article about this review.

Thank you for helping promote awareness of this issue.

Clicking the link will download the pdf of the magazine.