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.

Terrence Higgins Trust - THT

Finally THT have given more prominence and some more detailed information on the DLA review on their website . This a change uploaded at the end of last week.

Only 3 months after I first emailed all the agencies I could think of including THT. At the time there was nothing on this review on any website. Which was the reason for starting the blog. THT certainly new this review was coming, over a year ago, given their membership of the DWP Disabilty & Carers Service Advisory Board. Guess it's better late than never. Though I personally believe in preparation and "forewarned is forearmed".

You will be pleased to know that there is nothing new on the THT website that hasn't been covered here in detail already.

However we are grateful that others who will find THT first. Will now at least get some information to help them.

Some of you undergoing DLA review may also have received an IB50 form for your Incapacity Benefit. Please see the following blog entry - Incapacity Benefit review. (IB50 Form) . I mention this as it is not on the THT website at the moment.

If need to submit a request for a revision of a decision or make an appeal see the documents section of the main website for the leaflet "If you think our decision is wrong" (Form DWP GL24).

It is not clear if the advice given by THT Direct . Will be more detailed than when we called, read here.

THT offers direct access to its support services if it is funded by your local council or PCT. Where this is not the case and you live in a borough that doesn't fund THT in this way. Where you have accessed THT Direct. Can you let us know if they are offering more support than merely passing you on to a local agency and collecting your year of birth for funding?

Thanks.

BBC News website "HIV 'hides from drugs for years'"

FYI : you maybe interested in this story from the BBC news website today.

" BBC NEWS
HIV 'hides from drugs for years'
HIV can survive the apparently effective onslaught of antiviral drugs for years by hiding away in the body's cells, research shows.

The US National Cancer Institute found low levels of dormant HIV in patients seven years after they started - and responded well to - standard therapy.

The finding confirms patients must take drugs indefinitely, and that any break runs the risk of rekindling infection.

The study features in Proceedings of the National Academy of Sciences.

People with HIV need to take treatment indefinitely because current drugs cannot reach this pool of dormant virus
Keith Alcorn
NAM

The researchers followed 40 patients infected with HIV for seven years.

Doctors do not usually record infection levels once the number of HIV particles falls below 50 per ml of blood.

However, the NCI team used highly sensitive equipment to measure infection levels below this threshold.

They found that the virus was still present at low levels in 77% of the patients.

The research suggests that although potent antiretroviral therapy can suppress HIV infection to almost undetectable levels, it cannot eradicate the virus.

Renewed risk

The researchers said that even though levels of the virus that remain are low, they are high enough to rekindle infection if treatment is interrupted.

The risk of infecting others is low, but cannot be ruled out.

They believe HIV may be harboured by CD4+ cells, which play a role in the immune system.

These cells are most likely infected before therapy was initiated and the amount of virus they produce is small.

Researcher Dr Sarah Palmer said: "It is extremely important that new drugs are developed to eradicate HIV infection as the side effects associated with long-term HIV treatment can be severe."

She also warned that failing to take prescribed medication raised the risk that HIV could begin to develop resistance, rendering future treatment less effective.

Keith Alcorn, of the HIV information service NAM, said scientists were looking at approaches to treatment that could flush out HIV from cells.

He said: "This research shows that, for the time being, people with HIV need to take treatment indefinitely because current drugs cannot reach this pool of dormant virus.

"If treatment stops, this pool of virus provides the basis for a rapid rebound in virus levels."

Mary Lima, a treatment advisor at the HIV charity Terrence Higgins Trust, said: "This study only highlights the complexity of HIV and why it's so difficult for us to find a cure.

"It's important we find out as much as possible about how HIV acts over long periods of time, so we can continue to develop new treatment strategies to tackle it.

In order to keep people with HIV well for longer, we need to attack the virus at all stages."
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7287792.stm

Published: 2008/03/11 08:03:14 GMT

© BBC MMVIII"

U+

Picked up from a NAM email. I hope they won't mind me replicating it here

"U+ is a new magazine for gay men with HIV produced by Terrence Higgins Trust. The magazine deals with the personal aspects of living with HIV.

Each issue covers a theme in depth and issue 2, which is out now, is all about recreational drugs. It gives clear, practical information to help you make your own choices. Topics covered include myths and facts about drugs, "preparing and repairing" for a big weekend and tips on reducing your drug use. We ask whether GHB is wrecking the gay scene, and cover the interactions between recreational drugs and combination therapy.

U+ is available in many gay bars, HIV organisations and HIV clinics. If you would like to be sent a copy, email your address to u+@tht.org.uk "

NAM.

Thanks Ola/Zoe for getting back so quick with the THT presentation. It is in the process of being added to the main site for download.

THT meeting notes.

I have asked NAM to provide me with an electronic version of the THT presentation so those that missed getting a copy. Will be able to download it.

Meeting tonight update.

Thanks to Zoe from NAM for arranging this. Also on a personal level thanks to Ola for her presentation and time. It cannot have been easy for her.

The meeting was well attended (over 80). Much to the surprise of us all.

Thanks to all who attended. It is only as a community coming together that we can stand any chance to fight this.

To those who I told to email me rather than speak to . Forgive me I wasn't being rude. Only an email allows me the time to fully understand the comments & issues you raise and push it out to get any answer you need. I would forget otherwise.

Thank you to all for your support.

I will post more on tonights meeting on the web tomorrow and once I have confirmed some points of process that were raised.

Chat conversation from another website.

I have been having an online chat with someone on another website. They too are facing the same issues as we all are.

They live in Birmingham & THT are helping them with the DLA556 reapplication form.

I will feed back on their experience when I hear back.

Email experience .....

As always edited to protect he author.

1st email.

"I know we are worried about that is happening to our human rights
with the changes in benefits.

Just a thought or it may be a coincidence, but are you aware of
people being told by the clinics they are having to change combo? My
reasons for thinking about this, is that I am being asked to changed
and friends of mine have also been told by the consultants they
should change. Is it that the consultants are being put under
pressure to get people on to more stable combos so they can not use
the excuse of side effects are stopping me from working and it is
less tablets to take and you can take then at home at night away from
prying eyes?

Questions, questions, questions!!!"

My reply:

"This is probably more due to cost than anything else. Putting people on more stable combo's reduces the overall cost load to the NHS because there is less need to provide ongoing support services. Usually accessed by patients who have combo side effect issues.

The cost of drugs to treat side effects, cost of a bed should someone need to be hospitalised because of side effects are what the NHS is trying to reduce.

The current benefit reviews have no impact on this from what medics have told me. Quite the opposite they are worried about their patients.

I would be worried about resistance and the longer term options for medication if I was being asked to change my medication. If my current combo is working I wouldn't want to change. Keeping all the drugs, resistance allowing, in reserve should I need them.

However, if you are taking AZT they tend to want you off this if you have been on it for 5 years or more.

Hope this helps & thanks for your email."

2nd Email:

"Well in Eastbourne and Hastings clinics, they did
a massive swap of people on to Kivexa me included
and I had no reason to change off of
combivir. The clinics here in East Sussex are
more like a sponsorship deal with Kivexa. All the
pens, pads dairies have all the Kivexa logos on
them. I understand that Brighton is now starting to take the same route.

My friends that are under Brighton have just been
told that they should change off the current
combo and have not been given any reasons why.

I was forced back to work by the clinic in
Eastbourne and I have to say I am dead on my
feet. My health is worse now and a CD4 of less
that 325 and dropping. They have stated clearly
that it is not in the remit of the clinic to sign
people off and that all HIV patients should be
working. I am sure and I know the Community
Support Coordinator at THT in Eastboure will
agree, that we were guinea pigs 18 months ago on
how things were going to change and she was told
to shut up by management over this matter. As
people were being visited at home by the DWP and
interviewed and benefits taken away and told they are fit for work.

I wish everyone luck, but I do feel it will end
up in costing the country more in the long run
and the NHS if they try and get people back to work."

My reply:

"Can I post this to the blog?

I will edit it to protect your confidentiality."

3rd Email:

"

Since THT has become this great Corporate body, we have no one fighting our corner anymore. I am sure that as part of the governments drive to get people back to work and paying voluntary bodies to get people back to work by results, THT will be offering employment services very soon and like they have sneaked the "sexual Health" into the name and how opening Sexual health clinics.

From another website :

"February 19, 2008

Terrence Higgins Trust opens new HIV and sexual health centre in the Wirral



On 22nd February at 12.30pm HIV & sexual health charity Terrence Higgins Trust (THT), will be officially opening its new centre in Birkenhead which will serve the whole of the Wirral.

The opening will be attended by celebrity supporter Claire Sweeney, the Mayor of Wirral, Councillor Phil Gilchrist and the Chairman of Wirral Primary Care Trust, Frances Street. It will be an opportunity for clients, partner agencies and other interested parties to meet THT staff and members of the Executive Team to discuss plans for services in the area.

The new office, funded by Wirral Primary Care Trust will provide a range of services:

• Health promotion outreach work focused on preventing HIV from being passed on
• Support groups and health advice for people affected by HIV and sexual ill health
• One to one support
• General information on sexually transmitted infections
• Condoms and safer sex information
• Counselling
• Raising sexual health awareness through training and education

Representatives from the NHS and social services, other voluntary organisations, THT volunteers and staff will all be attending the open day.

Ewan Jenkins, Manager of the new office said “We’re delighted to be opening an office here in the Wirral. We’re looking forward to working with other organisations in the region to increase awareness of sexual health and support people who are living with HIV in the area.”"



Ends


So what next, the NHS will out source the clinics to THT.......God help us all!"

Hammersmith & Fulham PCT

Just spoken to Hammersmith & Fulham PCT. They fund THT for counselling not Welfare Services. The council fund the Hammersmith CAB. This in turn has a service that runs every Wednesday at the River House Trust on an appointment basis.

Therefore I can only conclude that unless your local PCT or Council is providing funding to THT for Welfare Support provision. You are unlikely to get little help from them

Though they should be able to tell you who can help in your area. Worth a call to THT if you don't know.

Hammersmith & Fulham PCT & THT

According to the accounts for THT 2006/7 Hammersmith & Fulham PCT are listed as contributing funding to THT. The are now re-tendering. I have added information to the links pages on the website.

Is this why THT were so unhelpful in our earlier telephone conversation asking for help?

Dates for your diaries .....

In the email today from the KVN forum supporting HIV patients at the Kobler, Victoria Clinic & Nkosi Johnson Clinics.


"The next KVN Positive Forum meeting on Tuesday 4th March will be discussing DLA review which seems to be affecting many HIV applicants at the present time.

The meeting is scheduled for Tuesday 4th March from 6pm-8pm at the usual venue - 4th Floor Conference Room, St Stephens (Kobler) Centre, Chelsea & Westminster Hospital. It would be good if as many members (and guests) as possible could attend to participate and share information/experiences.

On the same topic, there is a NAM meeting on Monday 25th February at the following venue which may be of interest to members as well.


http://www.aidsmap.com/cms1038352.asp
"
Thanks to the forum for this.

NAM tell me there is space for about 80 people providing about 45 chairs. If you want to attend and require a seat. It maybe worth calling NAM on 020 7840 0050 so they can cater for your needs.

I certainly will be attending both.

A comment from a previous post.

"Congratulations on setting up this blog - the first thing you seem to learn with hiv is that when it really counts the one thing you can always be sure of is that you're usually on your own!

I am in the same situation regarding the DLA review, trying to access some guidance concerning the DLA556 form, and had the same experience with THT - although they tried to be as helpful as possible on the telephone (I found myself feeling sorry for the guy, who spent ages trying to locate someone), the organisation's management doesn't seem at all interested in providing the kind of support that people living with hiv are looking to them to provide - but I guess that that is hardly a new story! The excuse is funding as you say, but I did a research project involving the archives of a major funding charity for hiv nad AIDS a couple of years back and alot of orgainsations in the past seem to have done tremendously valuable work focused on the needs of people affected by hiv with access to far poorer funding than THT currently enjoys.

The only resource available to me in Harringey, in north London, is also on a single opportunity, once a week, basis for 3 hours. You can't book, and their answerphone message announces that they will not respond to messages - I can vouch for the fact that they don't!

With time running out to complete and return the 36 page form, I've realised that to have any chance of a fair review I will have to pay a minimum of £300 to a solicitor (I bought my home years before I got the boot from my job, so have too much equity in it to qualify for legal aid - but obviously you can't eat bricks and mortar and you need a roof over your head). This is a very stressful and unhappy situation, and I know that I, at least, feel badly let down."

Thanks for this post. Check any insurance policy you have (car/health??/house), or credit cards you hold. Sometimes you may get a free legal service as part of your package of incentives check your contracts.

Help availible from THT......

My partner called THT Direct to find out what help was available with his form, see previous post.

He asked what help was available to facilitate filling in the form. The response was, and I quote

"Unfortunately, THT doesn't really assist in terms of what could be helpful to put in the form or even helping people to go along with the form"

The operator then looked to see if there was other services that might have been able to help in our area. After conferring with a colleague and looking at the information on their system. He suggested, the Riverhouse Trust. This is local HIV support organisation.

He suggested that as they have the CAB attend on Wednesdays, by appointment only, that the CAB might be able to help.

He also suggested we approach our Social Worker. That they may be able to help.

He gave the phone number for Riverhouse Trust.

Then asked my partner if he could answer one last question before the call ended.

He asked my partner "What is your year of birth? we need it for our FUNDING"

You must of course draw you own conclusions from this. By all means approach THT for advice. After all Lisa Power of THT is listed as a member of the Disability & Carers Service Advisory Forum. THT therefore are fully briefed on this review.

At the very least your call will help with ensuring they get the funds to support you from central government as a person living with HIV.

The call was recorded and because of Data Protection Law I cannot make it available for you to listen to. However I will make if available to THT if they request it.