Sunday, 15 January 2012

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? 



54 comments:

  1. Sue. Thanks for uncovering this. It's just more proof of the way Government abuses disabled people by treating us with contempt.
    Could someone compose a suitable pro forma letter that we could send to our MPs to ask them to act on this contempt for our rights and privacy.

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  2. We are stock in the parlance of Freud and DWP

    We are fodder for a flawed and fanatical state machine



    Urgent Statement by government yes and needs to be brought to attention of The Information Commissioner’s Office is the UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.

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    1. This is absolutely horrifying, to Fraud and the Condems we may be 'stock' but we are human beings with 'agency' now, we must use that agency to raise more funds and challenge that obscene process, one can just imagine some people in the sorting office laughing at the 'sickos'

      Btw, how on earth can Fraud use terms like stock he must know his relatives would have been described as such in the camps...

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  3. I would like to say thank you to all the people who have been involved in this report and the campaigning. It is heartening to see that somebody is trying to stand up against the ills that the government seem hellbent on trying to inflict upon the sick and disabled, even if it has to be the people who are affected by it themselves because nobody else will. It gives me a bit of hope for the future.

    I feel I should try and do something to help as well, but I don't use social networking and I struggle interacting with people. Is something small I could do that would help out?

    Regards

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  4. This is a disgrace. This government are beneath contempt.

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  5. Thx sue. This problem happens in birmingham a LOT. There have been many times me and my partners sick notes have been lost or simply left in a pile waiting to be proccessed and its shocking to know our ESA 50 forms could be treated the same @daz_sheldon

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  6. Thx sue. This problem happens in birmingham a LOT. There have been many times me and my partners sick notes have been lost or simply left in a pile waiting to be proccessed and its shocking to know our ESA 50 forms could be treated the same @daz_sheldon

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  7. H - You are Spartacus simply by reading and supporting. I'm sure you'll find one day, a little thing you can manage, that suits you. We have a fighting fund (top of page) and writing letters to your local paper could help?

    You'll find the thing that works for you xx

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  8. As my GP stated to me "It's all about data collection,not data protection".

    Scary that to be disabled or sick in the UK your worthless as a human being.

    I'm too sick to get angry,i just weep alot.

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  9. My son has just been granted ESA, in the return to work group. Yet he is profoundly disabled from brain injury, subject to a court of protection guardianship and in a rehabilitation unit,

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    1. Appeal. My daughter is Autistic, ADHD, SLD and they did the same to her; I just wrote back to them pointing out things and asking how could they put her in the return to work group, they put her straight into the support group without having to go to tribunal.

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    2. The fact your son has brain injury and has protection guardianship and in a rehabilitation unit is proof of the level of his disability. I am suprised they think such a person is even capable of being put to work without being a danger to himself and others are not considered let alone the fact he obviously needs someone to support him for any decision making. I would get an "advocacy" worker helping you like from the CAB, MIND, or other organisation who can be very helpful with matters like this. Also try to get yourself help from the CAB or MIND or RETHINK as they will be better able to help you in preparing for an appeal and collecting the evidence needed.
      The system is full of clerks who only know how to tick boxes made worse by "Medical officers" whose ability to practice medicine is highly questionable

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  10. Is there a solicitor in the disabled/carer community who can advise the campaign? Should we be fund raising to employ someone who can draw together evidence of this blatant disregard of rights? We are hearing so many reports of abuse of people's rights that should be protected by Law. No wonder Cameron wants to drop the Human Rights Act...

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    1. This is spot on. Several years ago, the organisation I was affiliated to wrote to all 3 party leaders about the then mooted issue of the repeal of HRA. We were specifically concerned about the human rights aspects of Data Protection. We got positive responses from the Labour and Lib Dem leaders but heard nothing from Cameron

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    2. There must be some lawyers who would take up these truly appalling cases on a pro bono basis:, Mike Mansfield, Imran Khan and other super lawyers do great work for migrants, alleged terrorists, etc but so few do work for this vulnerable group, get in touch with them..

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  11. Does not surprise me having worked on Tribunals for 19 years, were using Incap forms as evidence for DLA often way out of date from decision thinking we, the Tribunal would not notice

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  12. Is there any way fo finding out which centres use royal mail to open their mail. Would returning the forms by recorded delivery ensure they were only opened at ATOS?

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    1. It is unlawful for the Royal Mail to process (this definition includes holding) the medical data of someone. Only a health health professional is permitted to hold such data. It may be a good idea to mark the envelope as "The contents of this envelope are protected by the sensitive personal data provisions of the Data Protection Act 1998. I do not give my consent for anyone other than the addressee to open this envelope. To open this envelope without my explicit, freely given, and specific consent breaches the Data Protection Act and is actionable in a court of law"

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  13. Elindal - No, it was sending by recorded delivery, yet not getting forms in in time that alerted us to the problem. Now they say they will record every rec delivery in a log.

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  14. Hi..
    My GP centre want £50 (!) for me to see my notes but not allowed to photocopy anything for evidence!! What use is that?! My Neuro-Consultant is very good but it is taking 4 months for letters & care plans to reach my GP because of under staffing.. There is 40 yrs of evidence of my situation But i don't have access or strength.. I now also have a CPN but she has no access either.. Where do any dots join??
    I have to write also about rape & sexual abuse.. Not being horrible but I was a Post Woman for a long time & how I feel about them opening my ESA form is indescribable... How I now feel about attending a WCA & describing my situation to untrusted 'HP's' face to face is very desperate..
    How crazy that all evidence is there.. I have no data protection but they can't put what they DO have together.. I don't stand a chance...
    'Oh they all go to appeals now' says my CPN.. I don't have strength for appeals!... And when forced to appeal a new rule from a month ago means a Decision Maker can say i decided to stop my appeal over the phone & it would be down to crippled old me to reinstate it in time!!
    Maybe I am sill but I don't see myself as entitled to benefits.. I felt saved by my community when i was directed to DLA 9 yrs ago.. I found some peace for 1st time in my life.. That is how significant hte support & acknowledgement was.. It helped even more thanc ounselling because i felt less like a victim..
    Now i constantly feel abused again.. I've my assailants confused & now I feel huntad by abusers again...
    I am now seeing an extra Consultant & a CPN.. I am costing more money now & yet without all this threat I would not need them! Nita
    I am #spartacus

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    1. You have a right in law under the Data Protection Act 1998 to receive a copy of your medical records within 40 days of requesting. There are very, very, exemptions from the requirement of the NHS and anyone else from providing this information. Health and medical records are not exempt and don't believe anyone who tells you they are. Only a health professional is permitted to look at your medical records unless you agree otherwise (never agree).

      I am not sure about the £50 charge. The standard charge is £10. I believe the NHS MAY charge £50 under certain circumstances but not as a matter of course. £10 is the standard fee (which may be waived).

      The information in your medical records is being used to support decisions. You are permitted to see it and to challenge any inaccuracies your records contain. This is stated in the DPA 1998 and was confirmed in Durant v FSA 2003 by the Appeal Court.

      You can seek to enforce your right of access to your medical records in the County Court. I believe, although I am not certain, that it is not necessary to employ a solicitor or barrister for this kind of action.

      Let me know if you need further info,

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    2. I spent years trying to sort out my medical records. They can charge £50 for health records if you want a photocopy as it is to 'cover costs'. You are allowed to go to your surgery or outpatient and read them through there for free. My GP wouldn't even release my medical records to a research trial I took part in unless they paid him £50.

      Trying to change your records is also pointless. The most they will agree to is a letter in the back of your file listing what you disagree with which I think is likely to go unread. Their rationale for not even changing proven inaccurate data is that the inaccurate data informed medical opinion at the time and therefore cannot be removed even though it is factually proven to be incorrect.

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  15. My DLA was rejected at first because a botched ATOS assesment (which was being appealed) disagreed with all the evidence from my GP, hospital consultants & psych team. It was overturned a v.long 18m later at tribunal where I was placed in the higher mobility & care groups. I thought this was standard procedure?

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  16. I'm slightly confused here TBH, why are the Royal Mail opening the assessments, that doesn't make any sense.

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  17. Because the powers-that-be think this is an appropriate way to "outsource" the opening of the envelopes. It's thoughtless and terrible. Maybe even my dreaded MP would agree. Grrrr.

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    Replies
    1. It is unlawful for anyone other than a health professional to hold or to inspect someone's medical records.

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  18. Has anyone mailed those finding to the Data Protection Agency?

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  19. After giving tick boxes asking for consent to pass on personal info to other care agencies, health professionals, etc., the social care assessment form states:

    'We may pass on information without your consent if we feel it is in your best interests.'!

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    1. To disclose your medical data requires your explicit, specific, and freely given consent. The sentence "We may pass on information without your consent if we feel it is in your best interests" does not constitute specific consent (eg for what specific purpose? Why is it being passed on?). I would further argue that it does not qualify as freely given consent because if you decline your application will be rejected.

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  20. absolutely despicable. i have medical problems that are embarrassing and most of my friends and family don't know about them i certainly don't want the royal mail reading them.our local postman likes to gossip to 1 of my neighbours about info gleaned from his rounds so heaven only knows what sort of people are opening our forms.
    you r right about esa decisions being used to deny people dla. this has happened to me. i was found fit for work, which was overturned on appeal after the dla decision was made. it was clear from their statement of reasons that they hadn't even read my medical evidence or the atos report which backed up my dla claim (i scored 12 points). i think they saw fit for work and they pushed the no button for dla which gave standard answers. according to them i don't have the conditions that were apparent even at the atos assessment. i so fed up with the constant fight to get what i am entitled to.

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  21. Hi All,

    I was alerted to this situation some months ago however when I sent in a detailed FOI request to the Royal mail I received a reply from them admitting they have some centres for this purpose but would not provide any further information stating it was commercially sensitive.

    The only way to avoid this is to send your paperwork on-line.

    Also in light of proposed new centralisation concerning our NHS medical records I wondered if anyone could please explain to me how I can opt out of this system? I have searched the internet and made several telephone calls trying to find out how but to no avail. Even my doctors surgery say they don't know how to do it.

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    1. Write to your doctor via a registered letter telling him or her that you wish to opt out of the NHS database. Be sure to date and address your letter correctly as this can be pivotal if the matter goes to court.

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    2. ""The only way to avoid this is to send your paperwork on-line.""

      It ISN'T POSSIBLE to send your paperwork on-line. My DEA at the local Jobcentre checked last week. ATOS aren't on the shared system and even if they were, you aren't allowed to bring foreign memory sticks into it for security reasons.

      All I can think of is burning the documents onto a CD-ROM.

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    3. The same would apply to a cd rom. Government agencies are not allowed to use any from of portable media from an outside source. Only government issued media can be used on goverment computers. This is incase we try to sneak in a virus!

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  22. Please, please, please, refer to the Information Commissioner.

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  23. Yes, you must refer your concerns to the ICO. Medical data are SENSITIVE data. There are special provisions in the DPA concerning sensitive data. The DPA gives you the right to see your data and to be given an intelligible copy of them. There is no general exception to this rule by virtue of the data relating to someone's health or medical condition.

    Sensitive data can only be held and processed with the subject's explicit, informed and freely given consent. It is against the law for medical data to be held or processed by anyone who is not a health professional. This means that medically untrained individuals, even if DWP bureaucrats or Post Office workers are breaking the law if they have access to an individual's medical records.

    The Court of Appeal in Durant v FSA 2003 confirmed that the Data Protection Act gives data subjects the right to inspect their records (and to receive a copy of them) for the purpose of checking their accuracy. If the data are being used to support decisions (benefit claim decisions), it is vital to exercise this right of access. The DPA gives data subject the right to correct any FACTUAL inaccuracies in the rfecords and to append dissenting opinions.

    The right of access to medical records and correction can be enforced in the County Court. The ICO is often not a very effective body to enforce your rights because it tends to be biased in favour of organisations, not individual data subjects.

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  24. I applied for ESA and had the usual inaccurate and blatant dishonest medical report giving me 0 points. I have heart problems and waiting for a heart operation at the moment. I suffer blackouts 2-3 times a day. I can fall asleep standing up, chatting to people and have so many scars on my body from falling over I look like a dot to dot puzzle book. I was advised that just from losing consciousness each day I should have scored the 15 points needed for ESA entitlement. I have peripheral neuropathy and lots of mobility and manual problems where I cannot hold even a pencil or a cup at different times during the day.

    I appealed this medical report and waited 18 months for the tribunal hearing. They blew the ATOS medical out of the water and even enquired if it was written for me it was so inaccurate. The tribunal awarded me 32 points. How can there be such a difference from 0 - 32 ???? Even getting these 32 points I was still placed in the work related group !!!

    This medical is still having reprecussions on my life. I applied for DLA and it was refused and it stated due to the ESA medical report. I am appealing this decision but it has been nearly 18 months and still no tribunal date. How can they base the decision for DLA on a medical report that a legal tribunal found so inaccurate ???

    Finally as I was placed in the work related group I am being made to attend the mandatory work programme. This is mandatory as it is based on the inaccurate ESA medical report which stated I would be able to return to work in 3 months.

    The work programme dont know what to do with me. They have had to contact the head office as I am too ill to attend most of there activities and I am over qualified to attend the courses they run as it is only level 1 + 2 basic subjects and I have a degree. If I was to attend those courses they dont get paid as I am beyond their level of training. The programme are disgusted and ashamed at the people they are being sent to work with. Every week an ambulance is called for someone attending.

    So as you can see just from the inaccurate ATOS ESA medical report it has affected my claim for DLA and attendance at a work programme which lasts 2 years and the chances of my finding employment with my health problems compared with a young fit person are pretty remote.

    I won my ESA appeal in October and I have just been sent another questionaire for them to assess me again !!! No one can tell me this is not a witch hunt against those to ill to defend themselves. How anyone can support this non elected government with there dishonest underhand approach to policies is beyond my belief ???

    I hope and pray that Spartacus will start to peel away the veil of dishonesty and show the country what is actually happening to the vulnerable citizens of this country.

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  25. Summary Care Record opt-out:

    http://www.nhscarerecords.nhs.uk/options/

    NHS projects are always in a state of flux but the Summary Care Record project appears to still be trundling onwards:

    http://www.connectingforhealth.nhs.uk/systemsandservices/scr/staff/communiques
    or
    http://preview.tinyurl.com/7pdlq26

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  26. good post, having just clicked the link and read what it was about, having worked as a casual xmas worker at Royal Mail in 2007 , I already knew that Royal Mail staff opened those type of documents. Also recorded delivery post does not get sorted separate from 1st or 2nd class mail even though people pay extra and sometimes special delivery mail gets tipped with ordinary mail because as a casual worker I used to take it to the 'locker' area.
    I think I've mentioned this in my Tribunal posts and also in my blurb book about the Tribunal as well.(contact me if anyone wants an 'invite' to buy it.

    that's why Royal Mail wanted me and hubby to sign to keep quiet after the tribunal settlement but being a stubborn Yorkshire female, I refused! :-)

    hubby also had to pay £50 for his notes for the Tribunal against Royal Mail

    Josie x

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  27. This comment has been removed by the author.

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  28. mentioned this to hubby and he said that DSS letters are opened as well.

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  29. Shall I contact my friend who does a lot of community care law? Annie

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  30. Hi Sue, I hope you are feeling better.... Congratulations & a big thank-you for the sparticus report and your appearance on question time. This happened to me last year ESA & DLA assessed together and medical information went missing in the post! (I believe it may have been opened by royal mail and lost!!) I had to appeal as was refused both... won appeal in july 11 put in support group until apr 2012, then I get sent re-assessments sent in oct 11!!! way earlier than I should have! no reason for it and I am sicker than before and i won't get better there's no cure for my diseases this is as good as it gets some days I cannot eat, sleep, walk, sit or get out of bed and reliant on medical treatment at home now self administered, refused social services help (independent living fund) and awarded low care DLA and high mobility, and support group for ESA- now I am back to square one re-applied/review forms wca assessment sent in oct 11 still not had a response for ESA or DLA and I know they are assessing them together like last time!!! I thought this practice wasn't policy/law yet!! I fear I will loose it all again and have to go to appeal, sometimes I feel like ending it all but my kids stop me from doing so, I am a single parent with no support and I am having inadequate NHS treatment (need to complain), GP's are rubbish, and fighting the DWP as well and fighting my multiple diseases/conditions and nothing left to begin to fight my diseases for some improvement.... god help us all x x x x

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  31. Not shocked just embarrassed to live in a Country that openly abuses its citizens and gets away with it

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  32. After reading this I'm terrified! Ive had my dla and incapacity benefit rubber stamped for yrs but im waiting to be assessed for ESA. Im ill with worry, a friend was denied hers as she was asked if she could brush her teeth, when she said yes, they said it meant she was fit to work! What chance have we got when they use spurious reasoning like this?

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  33. According to my source, an ex-post office sorting office worker, it isn't just us. DHSS too.

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  34. I know for a fact that mail for Totton and Cosham BDC's and mail for the local ATOS centres was being opened at Southampton Royal Mail Sorting Office in 2007/2008!

    I had a 2nd nervous breakdown in 2007, so into the nightmarish dance that is claiming benefits I go (hindered my recovery- that goes without saying!); and as is typical demanded evidence went missing. I asked what the hell the BDC was playing at and was told ,with no trace of apology in the womans tone of voice that ALL benefits related mail was opened by this sorting office!

    By the way the sorting office in Southampton is in the industrial park next to Southampton Airport- If they don't give a shit about claimants privacy, i don't care about thiers!

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  35. My partner has just been sent all his appeal notes,as we were looking through them,I came across a mans medial record,his name,address,national insurance number,date of birth and his medical condition,this man is from Edinburgh,we live in Liverpool,we have sent the gentleman his copy along with a letter explaining what's happened,we are worried now that my partners information is floating around the country,we have been on to dla who said they will ring us back,but have failed to do so,can anybody give us any information on what we can do,this is not acceptable,this information could fall into the wrong hands

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  36. very very sad day

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  37. I was wondering if anyone could provide any information on what a pacs system is and what it's used for. I would like to become more familiar with this.

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  38. Thanks for sharing here with us.

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  39. Thank you for posting such a great article. Keep it up mate.

    Downloading JK payslips at jkpaysys.gov.in

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