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Letter to Rt Hon James Purnell MP, Secretary of State for Work and Pensions.

Dear James,
I am writing an open letter to you on behalf of our readers regarding your work on the Disability Living Allowance – Special Rules Exercise.

The Special Rules Exercise which DWP commenced in November 2007 rightly acknowledges the huge advances in medical treatment and better prognosis for people diagnosed with HIV.

Until part way through 1996 there was little that medicine could offer in terms of HIV management. However, things did change and since that time the number of deaths from AIDS reduced in this country with the advent of Highly Active Anti Retroviral Therapy.

People I know who have survived cancer long term are in a very similar position to those lucky enough to have survived HIV infection that happened a long time ago. Even with successful treatment, patients with cancer live on with the worry that the disease reappears somewhere else. Both diagnoses are, in my view, life changing occurrences.

What I fail to understand is the ruthless way that adjudicators appear to be cancelling people’s benefit entirely with no regard to the full circumstances of claimants.”

Recently I became aware of the Special Rules Exercise and, in the scale of things, I think it is only right to look at the circumstances some long-term recipients now find themselves in. What I fail to understand is the ruthless way that adjudicators appear to be cancelling people’s benefit entirely with no regard to the full circumstances of claimants (“customers” as DWP would have it). For people totally reliant on the state for their income, the withdrawal of DLA has a domino effect on all sorts of other entitlements and exemptions from things like the personal capacity assessment; it thus plunges people into abject poverty at a stroke.

However, if we look at what the country did to people with HIV in the 1990s, it perhaps helps to clarify the position that many people, predominantly but not solely older gay men, now find themselves in, whether or not they would qualify for the same level of DLA awards if they applied for the benefit today.

First they were told they would be lucky to live more than six months and even if they did, they would die quite soon. They were likely to be surrounded by other people who were also very ill and dying, and experienced multiple bereavement, with consequent impact on their mental health. They were advised and helped to claim the benefits they were entitled to, many people gave up high profile careers on the basis of the limited prognosis. Those lucky enough to have a pension pot to spend, did just that and have subsequently existed in a kind of “economic house arrest”, stuck in a benefits trap that effectively requires an incredibly well paying job that many would still be incapable of holding down on a full time basis, in order to escape. Some have managed it; others would probably never be able to and, if they were, would perhaps have done it by now.

The vast majority of the DLA awards made to people with HIV that long ago were under the Special Rules and were “for life” (later amended to “indefinite” through statutory instrument in 1998). Many people with these lifetime awards consider that their lives were written off from that point onward.

More recently, the government confirmed the disabled status of people with HIV, multiple sclerosis or cancer from the point of diagnosis as part of the Disability Discrimination Act 2005. However useful this may have been overall, it is considered by some as confirmation of their write-off status: I know, people have told me this is how they feel.

Whilst there may have been improvements in prognosis and treatment, many people with HIV who were awarded DLA in the 1990s are likely to have been much sicker than anyone diagnosed with HIV in this country today is likely to get, with perhaps the exception of people who are diagnosed incredibly late, often with AIDS defining illnesses or co morbidities. Some are no doubt suffering a level of cognitive impairment due to the long term action of the virus on the central nervous system. They are also likely to be highly “treatment experienced”, including many given suboptimal treatments in the 1990s (one or two drugs instead of the now baseline triple combination therapy) which will normally make the current day treatment regimes more complex and continue to affect their future treatment options due to drug resistance. Moreover they are likely to be far more physically and mentally damaged by their journey through what was described around 1997 as the “Lazarus syndrome”, moving from preparing for death to having to plan for some kind of life. There are also people who the state effectively helped put out of the labour market up to 20 years ago.

Placed in this position, for which many are incredibly ill-prepared, with no real skills and perhaps a 20 year gap in their employment history, and as people against whom the bulk of society continues to act in incredibly discriminatory ways, there is limited, if any, support to any of them to consider a return to employment without targeted intensive support. Despite some incredibly successful projects funded initially by the London Development Agency and more latterly the European Social Fund, there is currently no funding for HIV-specific employment related programmes in England and Wales. The incredibly successful programmes in supporting thousands of people with HIV back into the workplace between 1999 and 2007 are no more. There is also very limited funding for HIV-specific (and thus relatively “safe” places for marginalised and worried people to approach) advice services. The experience of helping people with HIV back into the workplace proved that most totally lacked confidence, many lacked skills, and a large proportion who had previously worked were looking for a complete career change. For some, working to achieve a return to the workplace could take up to three years from initial engagement with an employment support service.

David Freud’s proposals on benefit reform appear to be alarming huge numbers of people, yet he asserts it would be cost effective to pay an agency as much as £62,000 per person retained in employment for three years. I question his accounting, but with maximum rate DLA working out at £6194 per year, a person on DLA would still have to be in receipt of nearly £15,000 a year in other state benefits before Freud’s calculations (which related to incapacity benefit alone) reach break even for the state.

Considering that many of the people currently losing or facing losing their DLA are less likely to be able to access reasonable employment that quickly, if at all, than their counterparts on incapacity benefit, the effect on those that lose this benefit in this way could have catastrophic effects on their physical and mental health, yet would not appear to save the state any money at all, particularly as the services to support them into an employable position are not there. Whilst I know far more people with HIV than I do those with cancer, I would have thought there are parallels for people living long term with a potentially life threatening illness even if current treatments have resulted in a period of disease management or remission that has made some aspects of their lives better than the trigger criteria for a DLA award. These are not fraudulent cases – any that were should be dealt with accordingly.

I feel that anyone stuck in this benefits trap should be given appropriate high quality, needs based support to move them at an appropriate pace from reliance on benefits to employability whereever possible, not being plunged into abject poverty which is highly likely to have deleterious consequences for their physical and mental health (remembering that we are still talking about people with long term health conditions here).

I would appreciate your views on this.

Yours sincerely,
Ian Thomas

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