Note: When the new blog and website are "bedded in I will cease posting to this site. In the interim,
A while ago. You will note if you scroll through the blog. We made a request under the auspices of the Data Protection Act. To the DWP for the information held on us in relation to the Disability Living Allowance (DLA). This comprised photocopied sheets and a printout from the system, mainly payment history. Some data, non medical, is missing and I will chase this.
I will work through this information and post accordingly over the next few days.
Bear in mind that I look at this data as a "lay person".
I note the following having "flicked" through.
- My data shows in handwritting that I was selected for the "Pilot".
- My partners file & mine have a sheet of A4 indicating the other is the partner
- My partners review, from the large print out is also being handled by the DLA Pilot team. Given the links to our files from each others it is likely he was chosen for review because I was selected for the pilot. There is a note that my partners case is also being looked at in my file and vice versa.
- The letter I wrote to Ann McGuire is part of my file and the subject of internal communication. The file was sent to the ministers office.
- Both our original awards comprised of only the "Personal Care" component awarded under "Special Rules". Mobility being different.
- The awards were "indefinately"
- When the DBD551 is submitted & a medical report received from your Doctor. A DBD520SR form is completed by a "Registered Practitioner". This is the opinion of the DWP medic on the information provided. Part 2 comprised two tick box answers. Signed off by a "Approved Disability Analyst".
- 1st is "In my opinion, this person is still suffering from a progressive disease and their life expectancy is likely to be less than 6 months."
- 2nd, and selected in my case "From the evidence available to me, it does not appear that this person is suffering from a progressive disease likely to limited life expectancy to less than 6 months." There is then a box for a further explaination. In our case this is limited to an opinion our HIV alone. In my case though I have a Viral Load, this is omitted. In my partners case both his Viral Load and CD4 are noted.
No other information, awaited. Has arrived in the post so far.
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.
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.
The National AIDS Trust have produced a report titled "From a Positive Perspective: Key Issues for People Living with HIV in the UK
Also on the main page there is a section on "Public Attitudes Towards HIV 2007".
Crusaid, who provide a hardship fund. Have also produced an interesting report "Poverty & HIV 2007"
I highlight these as they maybe of interest.
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.
