Thursday 27 March 2008

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.

8 comments:

Anonymous said...

Dear John,

I found your 'cry from the wilderness' deeply moving. You are, like my wife, one of many forgotten long term survivors sold down the river by the THT. Nick Partridge in particular has been unforgivably Machiavellian in securing his own political future at the expense of the people he is supposed to protect and support. Beware the career altruists.

My wife was diagnosed HIV+ in 1985 and has been on a triple combination for almost 10 years. What the TCell-centric review brazenly fails to consider is the deteriorative nature and long-term organ damage and side effects caused by the anti-retroviral combinations. Anyone who has been taking these harsh if effective drugs for as long as my wife know that they represent the frontline of long term experience as they constitute the first wave of patients prescribed treatment. The many adverse effects are now becoming apparent - chronic liver damage; Heart disease; premature aging; disrupted sleep patterns and violent dreams; osteoporosis; mitochondrial toxicity; diabetis; kidney damage to name but a few. However, none of these are likely to reduce your TCell count to below 200 (and therefore prevent a review of your benefits) until it is too late, if the patient remains adherent - a tough enough challenge considering all these side effects. This seems to be a human rights issue. I would be interested to know what the European Court of human rights has to say about it?

Also, another thing that seems to have been conveniently 'forgotten' by THT and the Government in their zeal to push this through, is the stigma that remains around this condition. Regardless of attempts to 'normalise' it for political expediency, it is still highly unlikely that the vast majority of employers would look kindly and supportively on people with HIV. WE only need to look at the continuing demonisation campaigns around high profile convictions that have been driven by tabloids in recent months to highlight the difficult and narrow reality that is the HIV+ person's everyday experience. Until such time as the Government have played an active role in combating this appalling prejudice, thereby assuring that HIV be as socially 'acceptable' as any other disability, they should have a moral duty to continue to support and protect this extremely vulnerable section of society.

I know that, in the case of my wife, her disability allowance is the difference between her literally having the will to go on and giving up. The motorbility car for instance offers her a self-sufficiency that she just wouldn't be able to achieve without it. We are both so scared of the consequences of this latest review on her health and our life.

I am so angry with this government for even considering withdrawing this necessity, but a part of me has come to expect such a brazen disregard for cries from the wilderness. However, my main fury is reserved for Nick Partridge and the THT who have betrayed the very people who often laid down their lives to build its reputation and status as a Government funded organisation.

I intend to post notification of this important blog and your letter on my current websites and friends in an attempt to bring it to the attention of more people.

Please know that you are not alone.

Kindest regards,

Mark & Caroline xx

John said...

Thank you both for this. The experience of your wife also surpasses my experience but am aware that those that came before me. Who had the older drugs. Live with the long term damage of being the "guinea pigs" for the rest that followed. Though every generation of those with HIV has been through this to some but a lesser degree. What is clear is this review is only one aspect of the bigger picture that is the support "long term survivors" need but is seemingly unavailable.

If you want to me to link to your website please email me the address and I will add it.

Thank you for this. I feel there is a common benefit felt when we come together and share.

My best wishes to you both.

John.

Anonymous said...

Well, i want to thank you guys for articulating what's in my mind but cannot express that well. I am under review too since November and this situation is really starting to wreck my nerves and i am starting to develop physical conditions due to all this stress. Each day, my heart is pounding as the postman comes along, dreading a brown envelop with the dwp stamp at the back, announcing that "due to a change in your circumstances,blah, blah, blah (don't known the outcome yet).

I check this blog everyday and was very happy to find it in February, at a time when i couldn't get no help, no infos or anything about this review. I too have found the level of help from THT very lacking. They still helped me with my DLA556but their attitude was more like "You lazy sod, you ought to get a job" and when i actually asked what sort of help or assistance they may offer if i was forced to get back into a training or employement, i was told "There is nothin we can do, you'll have to go and check your local job centre".

Anyway, thank you John for leading up the fight and all the guidances you are posting here.

John said...

We are also waiting for the postman so I relate to your sentiments.

I am grateful to those who contribute such as you as without you this would be somewhat one sided.

I am please you received some help with your DLA556.

Please keep in touch and let us know how you get on.

Thanks,

John.

Anonymous said...

Your article reduced me to tears, what sort of society are we now living in when the sick are treated like this? Not the sort of society I regard with anything other than shame. How have we come to this from the brave beginnings of the Welfare State? The press are largely, with a few exceptions, happy to aid the government and the DWP in their scapegoating of the unfortunate: because that is what it is, simply a lack of fortune, that deals some of us such a bad card. Any of the smug and selfish 'healthy' people out there could end up at the bottom of the heap one day. I just hope you are successful at your next 'hurdle', but why should you have to suffer unending anxiety as well as a terrible sickness?
I am not religious, but I will go into the Cathedral tomorrow and light a candle for you, and for others in your terrible situation. It will cast just a small light in a dark world. But remember that there are people who care deeply about this: IT IS WRONG!

John said...

I am sorry you felt moved to tears with what you have read. But appreciate your sensitivity, thank you.

May I pass on thanks for lighting a candle. The significance not lost on any of us. I recall the significance of the candle light vigils I used to attend every year when I lived in Manchester.

Thank you again.

John.

Anonymous said...

Having carefully followed peoples comments regarding THT in this matter we now know that Lisa Power has declined an invite to KVN forum to explain what role, if any THT had in the setting up of the DLA review. She is sending a more junior member of staff who knows vey little of the situation to take the flack. To me they just sat back and then said well you can include our telephone number as a helpline. Well I did phone them and because I live outside London they asked me to contact my local Citizens Advice Bureau, which is what I would have done in the first place if they did not exist.
I firmly believe the likes of Nick Partridge and those at a more senior level at THT have been in post far too long and are quite happy to sit back earning their salaries(the ivory tower syndrome). THT has become politicised and therefore will not stand up for the people who put them there in the first place. I have been around with HIV for many years and have seen the decline in certain organisations that were originally set up to fight for the rights of people with this disease and all the baggage that goes with it. I hope we can force those at THT to come and face those of us who live with this illness to explain their role in this because to be perfectly honest there would be no salaries and jobs for them without us.

John said...

Thank you for this comment. I attend the KVN Forum and saw the messages about Lisa Power. I was not surprised as this seems to be a historic pattern of behaviour. That is when the going get tough ......

I am particularly interested in the advice they gave you and am grateful you mention it. It complements my partners experience mentioned in the PN article.

Thank you,

John.