Two of us here after a staggering 7 months for one of us, has had the verdict on our DLA awards. It is that the award, made under Special Rules, remains the same. The way it has been done effectively reinstates the DS1500 whereby S66(2) of the SSCABA which defines terminal illness "if at that time [you have] a progressive disease and [your] death in consequence of that disease can reasonably be expected within 6 months." Do not let this be misquoted to mean that you have to die within six months, it is what can reasoanbly be expected under the cirucmstances. One of us, stable for nine years, upon being approached by the DWP suffered such stress his combination failed, his viral load shot up from undetectable to over 33,000, his CD4 count indicated a collaspe immunity as it registered 200,danager level for fatal infections. Our Labour MP David Lepper, highly supportive throughout, appealed to the DWP that due to the damage to our health to remove us from the review. The DWP refused and pursued their review to conclusion regardless. It is that decision that now, despite the decision being in favour of continuation of the benefit though a threat on the telephone from the "decision maker" and in writing that they can review at any other time, has given cause to consult solicitors whom will be contacting the DWP in connection with legal proceedings for damage done. There is also to be a formal complaint that will start at the office of the Secretary of State for Social Security for maladministration in the case of one of us because of the seven months delay and four decision makers dealing with his claim. It is upheld that the entire review is unlawful. It follows wording that clearly meant no review to be taken of DLA awarded for Life later changed to indefinately, but there is no change in purpose in that wording, and for life along with the wording that relates clearly to it being a one off award, ("if at that time") that time being one time and one time only never to be subjected to another time of examination. The government is acting unlawfully in conducting the review of the benefit and proceeds to do so because most lawyers whom would be of mind to take this type of case are of left wing leaning and their personal interest is to support New Labour which is clearly in significant political decline. What they should do is examine their consciences. We attended the clinic, not related to the DWP situation, it is the clinic of senior consultant in rheumatology, one exceptional woman Dr Karen Walker-Bone in Brighton. At that clinic a large number of gay men, very ill with mobility difficulties, later was to tell us that she had had elderly women in her surgery in floods of tears having lost their DLA when clearly they are significantly ill and not knowing who to turn to. The CAB
and THT were used in many letters to us implying their support of the review and of benefits being lost. When we wrote to Mr David Harker head of CAB and to Nick Partrrage head of THT, one struggled to reply the other simply ignored us. We raised concerns about how the DWP have been allowed to present them as near sponsors of the benefit review and they have allowed this to happen. That people afraid of losing benefits read into the DWP letters that they have nowhere to turn for impartial help and advice because the government has sealed all areas of help. David Harker will not confirm if he supports or condemns what the government is doing to people. One old woman was degraded after an hour of gruelling examination by the appeal board on if she could peel or not peel a patato. This is action contrary to Article 3 of the Human Rights Act which prohibits the state from engaging in action that is degrading or inhumane. Dr Walker-Bone asked at what age range did review apply to due to the age of some of her tearful patients. The age range is 0 to 85 and this Labour government, after taxing the poorest paid are now mugging the sickest to pay another £3billion pounds to Northern Rock. Ad neasum
We continue the fight for those who cannot.
PDF version thanks for your post, i too have been waiting 7 months, i sent back my dbd551 on 7th january and after numerous calls and being told that they had written to my specialist, i rang again and was told that they had not even written to him, i asked the dwp if they knew what stress can do to peoples health, she said "well at least you will still recieve your payments until a decision is made", as if i should be grateful for this. i too have seen my cd4 count drop to 165 from 378 due to the worry, these people really need to have an understanding that the way they are conducting these reviews and the time it takes is having serious and often life threatning effects on many people,i wrote to gordon brown and my local mp malcolm rifkind in may, and have so far recieved no reply from either.
I thank you for sharing this with us. It underpins the argument that Stress is the worst enemy of HIV. Yes I don't like feeling I should be grateful when all I ask is for fairness and what I am entitled to. Thanks for writing to your MP and the Prime Minister. This process is making many unwell and I hope you recover asap and get this sorted, 7 months must be one of the longer waiting times. But then I know of people still expecting the first letter.
Best,
John,
Initially, I would like to say what an excellent source of information and support I have found in using this website.
I was first diagnosed in 1994 after being admitted to hospital with a dose of PCP. At this point I was working, in a professional full-time post and was completely traumatised by both my diagnosis and the way HIV impacted on both my physical and indeed mental health. I felt absolutley lonely and isolated and found the experience of hospitals and appointments somewhat foreign to my lifestyle. But hey, I suppose what you survive makes you stronger and so after a lengthy admission to hospital and a great deal of soul searching I went home and started a different life. I returned to work but became more and more tired, depressed and at one point suicidal and turned to family and friends for help and support. I was subsequently persuaded by my hospital doctor to "have a break from work to let things recover properly". I was devastated as my career was everything to me.... but in hindsight I can now completely understand the rationale behind this way of thinking as it probably saved my life.
I made an appointment some three months later, after my savings had dried-up to make a claim for Incapacity Benefit, Income Support and DLA. The forms arrived and I was gob smacked! Complicated, and what I had anticipated. I ploughed through them and began the process of obtaining evidence. Initially, I needed a medical certificate from my GP. He was a nightmare and although gave me a sick-note he made it clear that he didn't much care or have any real knowledge of HIV. Looking back he was somewhat homophobic. After about four weeks I was awared Incapacity Benefit and Income Support. However, I was refused DLA and so my clinic doctor wrote to the DWP again and expressed her concerns. My health was deteriorating both physically and mentally and was eventually admitted back to hospital for an element of "respite social care". The DLA was awarded at Higher rate Care and Higher Rate Mobility but reviewed after three years.
Everything was fine for a while..... plodding on dealing with a new regime of medications, appointments, and dealing with the boredom of daytime without work. I never thought I would miss work. Hey... life's strange I suppose.
After a couple of years and my health had recovered I decided to proceed with a post-graduate degree part-time and also start some voluntary work. I was enjoying this and suddenly I became sick. I was back at square one. However, after anothe few weeks in hospital was back on the road to recovery. I was still quite emotionally fragile and had noticed I had become a bit of a recluse... socially withdrawing and beginning to ignore friends and family's calls etc. It was at this point that I started with severe insomnia, began drinking a little too much, and had severe panic attacks especially at night. I decided to take action and spoke to my clinic doctor who decided that I needed to see a psychiatrist and undergo some psychotherapy. This was no easy process and after a a year of feeling very vulnerable I believe I came through this with such gusto and strength my life had changed significantly.
I started a new relationship and although my partner was negative everything was going well. I had bad days and sometimes I even founding walking difficult but hey I was stronger and still bloody here.
I was then reviewed by the DWP for all my benefits. I was awarded my Incapacity benefit and Income Support but my DLA was somewhat problematic. The DWP staff were rude and very obnoxious. The Terrence Higgins Trust most unhelpful and my local social services department stated that they didn't help people with DLA claims. At this point I began to feel anxious and started to panic again.
Fortunately, my clinic doctor put me into contact with an excellent social worker who had worked in HIV for the past fifteen years. She was excellent and sorted out my DLA review. It was difficult but expert help was essential to work through this mind field.
The DWP need to understand the emotional trauma that people living with HIV experience everyday. I found many organisations geared to help HIV be more than useless.... appointments rare and their work remit somewhat sketchy. Thank God I stumbled accross your website and that my clinic doctor and social worker were clued-up. My award was for higher rate care and higher rate mobility indifitely... but I have since decided to return to part-time work.
Remember if it doesn't kill you in makes you stronger.
The entire review, aside from the legal issues which we are pursuing, demonstrates a complete failure on the part of the DWP to have any understanding of HIV and thus in my view leaves any decision taken open to question.
We are pursuing the training issues.
As with yourselves, we strive to expose ALL the failures here.