No Data Protection for Sick and Disabled

A few months ago - again, thanks to FOI requests - we found that the forms we must fill in to apply for ESA (Employment and Support Allowance or "sickness benefit") were not all opened by Atos, the private company in charge of "assessing" our ability to work. Instead, they were being opened in a Royal Mail sorting office and sent on.

These forms contain the most sensitive information imaginable. They are nearly 50 pages long and you must describe every last detail of how your illness or disability affects your life. Often, one shares details that even a partner might not know. Mental health problems with a root in horrific trauma must be explained in black and white. Volume and frequency of incontinence must be listed and every last small failure of independence must be recorded. To learn that this information was seen by anyone but an assessor sent a shock through our community.

The DWP later admitted that "at least 5" assessment centres did not open their own mail.

The Spartacus Report made a nice publicity splash, but very few of the very serious claims it makes have been reported or investigated.

For me, one of the most shocking findings was that the DWP are already using the results of an ESA assessment to reject claims for DLA.

ESA is an out of work benefit paid to those with illnesses or disabilities who cannot work. It is a very modest form of income replacement. DLA, or Disability Living Allowance is a working benefit paid to cover the extra cost of disability - heating, transport aids etc. The two are entirely different and perform entirely different roles. What's more, those entitled to both ESA & DLA tend to be the most profoundly disabled.

As we were researching the Spartacus Report we found proof that the DWP are already using the decision from an ESA assessment to reject a claim for DLA. This:

-Despite overwhelming opposition to an ESA style assessment for DLA
-Despite legislation for DLA reform not yet passed in law
-Despite the clear data protection implications. 


I've been ill for 28 years. I've spent more time with my surgeon than Katie Price. I've spent months as an in-patient yet I am not even allowed to read my own notes!!!

So fiercely is my medical data protected within the NHS, that I must apply in writing, sending £10 to cover copying costs. I may not even sit on my own in-patient bed and ask to see them. This is true of GPs opinions for benefit claims, for employer requests and for insurance claims.

Yet, if you are the lowest of the low in the eyes of those who design policy, if you are so apparently incapable or poor or useless that you must throw yourself on the mercy of the state - a "claimant" or worse, part of the benefit "stock" as Lord Freud likes to call us - it seems you deserve no such protection.

In the name of proving your worth, you must be prepared for your most intimate personal details to be passed around like a hookah pipe. What's more, you get no say in this and no one feels they have any obligation to inform you.

Now, if ESA assessments worked, this would be, at least, slightly less shocking. But they don't. 40% of rejected claims go to appeal and up to 70% of them are successful. The assessments cannot deal with fluctuating conditions and have been found unfit for purpose by the CAB, the government's own advisory committee, the DWP Work and Pensions Committee and every other independent report conducted. Even the professor who helped to design ESA says it is a chaotic mess.

These assessments are the single biggest issue that disabled people have with ESA. They are designed to exclude many genuine claimants, some people are dying just hours after being found "fit for work" the assessment centres are often inaccessible to wheelchairs (yes, really) and the entire process is farcical. To use this disaster to decide yet another vital support that sick and disabled people rely on is absolutely unforgivable.

We call on the Government to maker an urgent statement on this issue. We ask them how our rights under the data protection act are affected by this sharing of information without our consent or knowledge and whether they are able to lawfully take this step before the welfare reform bill is passed?


We ask them if we deserve any respect at all?