Tuesday 17 January 2012


On Friday, I went to the House of Lords.

(For a second may I digress? It was utterly beautiful. For a big fan of history, a politics geek and art lover, it was almost too much stimulation at once. I sat on a bench!! Hopefully archaic looking guards with big swords aren't on their way to cut off my head for that?)

Anyway, back to terribly grown up, sensible stuff.

I went to meet "The Amendment Lords" (7 yr old asked if they were Jedis and what colour light sabres they had.)

With a clutch of emails of support from charities and groups and of course, every one of you there with me in spirit, I explained why we felt there had to be a pause to PIP.

-I explained how worried we were that legislation would pass with so few details decided. I said we had lost trust in politicians to act with transparency - and even integrity. Leaving so much in their hands to decide under secondary legislation, later, means we don't actually know how the law they are passing will affect our lives. Or the lives of our carers.

-They asked me what the single biggest concern was. I hope you agree that I suggested it was fear over another ESA style mess. I argued that unless assessments were designed by disabled people and took all medical evidence into account, they would just add to the disaster we already face with WCAs (the assessments used to decide Employment and Support Allowance)

I suggested that in any case, the ESA assessment process was already creaking under the strain of the sheer numbers of people the DWP want assessed. In my opinion, the DWP would find it impossible to train enough extra people to assess 3.2 million DLA claimants anyway. I suggested a paper assessment as a first stage, and only once all medical and social evidence had been considered should an assessor decide whether or not to conduct a face to face assessment.

Most importantly, I begged them not to roll this out until we could make sure we had a policy that would work. 

ESA is a three year experiment using real people as guinea pigs. The DWP admitted there were serious problems with it, yet maintained it was better to modify the ongoing process rather than pause it while they got it right. That means that every day, for three years, vulnerable people have been let down, denied support they need and been forced through stressful appeals. While we wait for Harrington to decide our futures, every day, people are suffering.

We can't let that happen again.


This morning, the following amendment has been tabled :

Clause 80 - Amendment 50E


Page 58, line 26, at end insert—

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.

We have just 7 hours to make sure that as many peers know about it as possible. To show them that it has a coalition of support difficult to ignore. Charities, politicians and journalists are all ready with statements and letters and articles. TV interviews are lined up all day. We have done all we possibly can to make sure that if the Lords decided to table an amendment expressing our concerns, we would be able to tell peers about it.

The reform of DLA will cost £675 million. Half a million disabled people will lose support. We have made a very strong case in our report, Responsible Reform, arguing that ill conceived reform will simply end up costing the taxpayer hundreds of millions more in costly appeals and further strain on NHS and social care budgets.

Please, write emails, tweet, contact journalists, blog, plead and persuade. Use evidence, tell them how it will affect you, urge peers to attend the debate and vote for amendment 50E. 

We MUST get this right. Lives and futures depend on it. The lives of those very same "vulnerable" people the Government have pledged so publicly to protect and support.

We are just asking for reform to be safe. At the very least, surely that is not too much to ask?


  1. Losing my DLA means losing my Living Allowance, this can't be right?

  2. PAUSE? FFS it shouldn't be 'paused' it should be opposed. I can't stand idiots who didn't see this coming when they were warned years ago this was on the cards. Get your bit of publicity and then get the fuck out of it because a 'pause' does no one any good

    1. For anyone who is angry at asking for a pause, the request from the Spartacus Report had to be reasonable in order to be heard. Simply stamping our feet and demanding PIP be thrown out would have been rejected out of hand. We need to do this in stages.
      Whether we like it or not, compromise is the order of the day.
      This is already more than we ever hoped for.

      From co-author of the Spartacus report.

    2. @Other Anonymous

      I don't think you understand, Sue and everyone else are trying to get a fairer deal for disabled people everywhere, the fact the Goverment are trying to cut 20 percent of claimants from DLA although fraud is at 0.5 percent is alarming, although it looks like DLA will go, people want to make sure each and every disabled person gets a fair deal from the goverment and aren't just cut for the sake of being cut from vital support to save the goverment money.

      I'm currently having to fight my corner to get my ESA back, I don't want to do that with DLA every year too, if somehow the DLA successor can be made fairer, it cuts the stress of having to appeal appeal and more appeal to get what you deserve.

      I think Sue and everyone else have done a great job, against overwhelming odds even. They should be supported not criticised.

      - Matt

    3. Anon. 01.17AM: Of course we'd all like the whole WRB chucked in the bin, but this is the real world and it doesn't work like that. What is utterly remarkable is how Sue,Kaliya, Spoonydoc and anyone else I haven't mentioned but should have, plus the efforts of other very unwell and disabled Spartaci, have forced these issues very visibly into the public eye, transforming the ugly "scrounger" rhetoric, getting some good spots on the Beeb at last,and the Mail even. Not to mention the fact that Lord Fraud himself felt driven to write to all peers cos he was so rattled by the Spartacus report! This is huge. Be grateful, and please support Sue and co who have made such efforts to the detriment of their health.

  3. Excellent news :o) Well done Sue!

    Firing off another email as soon as I finish typing :o)


  4. Pause guy: Hey, we are all angry. Don't shoot the messenger! At least Sue has the courage to do something - what? You expect her to convince all these Disableists to just roll over in one meeting? How do you overturn generations of discrimination towards 'difference' and disability in one meeting? We are showing these bigots that the backhanders they get from disability denial will cost them far more than the few lousy quid they will get!


  5. As well as the £675 million cost of creating the PIP tick box test, Miller confirmed that it will cost between £300 million and £500 million to run PIP over the next 3 years.

  6. I know and believe me, I worried that some would be cross at just a pause.

    The problem is I am just one person. The bill is going through. In just a few weeks it will be law.

    Was it better I got everything I could or cut off my nose to spite everyone's faces? We either accepted PIP straight away or made a last minute bid to pause it.

    People either got hurt very soon, or I did everything I could possibly get away with to minimise it.

    If I'd gone in arguing to keep DLA at this stage, I'd have been laughed at.

    That does't mean that politicians, charities and media couldn't have done a zillion more things before they accepted PIP, but they did and just days before the bill passes, I had no way to overturn the whole policy.

    At the very least, I may have helped to buy us time and an opportunity to redesign PIP.

    1. Absolutely right Sue... you've also brought to the attention of some very important and influential people the injustices going on in the welfare reform. Hopefully they will now look into what the government has been doing, ie: unfair Atos assessments etc. And, if we are really lucky, perhaps the media will at last start reporting on this.

      Wonderful work Sue, Go Girl!!!!

  7. You're doing such a great job Sue. 'You say, 'urge peers to attend the debate'. I saw on twitter a big list of Lord's e-mail addresses. But I don't know who to contact. I don't want to blanket e-mail them if that will piss them off (i.e have them not read my e-mail). Or is that the best strategy? I don't have the knowledge to know which peers are Conservative/Lib Dem, in support of us, etc.

    Basically, help! Who do I contact. I want to do something.

  8. I am currently writing a post with a template letter and compiling a list of Lords who may be most sympathetic to the cause and their contact information. May I link it to you when I am done so it can be shared?

  9. Bez, could you do that. I was looking at Sue's request for us to email Lords and thinking that I haven't a clue where I'd find their email addresses. Could you possibly put a link so we can all find out via this blog? Thanks. Annie

  10. Sure. Here's the post, as I mentioned I am updating it every few minutes with more names.


  11. "I argued that unless assessments were designed by disabled people and took all medical evidence into account, they would just add to the disaster we already face with WCAs."

    This is exactly it.

    Anonymous - what part did you play in this? I'm sorry but you're berating a chronically ill woman who uses up her time and resources to fight for disability rights. One person cannot take on the world. I think Sue has done an amazing job. I will be retweeting, Facebooking and everything else I can on this.

  12. This may help identify which Lords to contact, it should give details on their voting record.
    I'll try to contact some today in my lunch break. Go Spartici!!

  13. PS I'm not the same 'Anonymous' as the PAUSE critical guy. Sue and everyone else doing the best possible job in our undemocratic democracy

  14. That documentary on Radio 4(second part next week)about welfare was another stich up from what I heard of it(I had to go out)I haven't played back what I missed yet!

    Today on The Today programme around 8.05am-8.15am A government Minister and a Lord(Lowe?)discussed DLA/PIP and he had grave concerns about the change and abolishment of DLA and especially as he felt that the PIP replacement is not ready and is still being worked on.

    He really is one of the good guys and understood our concerns...worth a listen if you can use the BBC Radio I-Player. Naturally I was not impressed with the Minister but I would say that wouldn't ...

    I still like the idea that we would still be allowed to submit our medical problems via a paper form as we do already(and how much more detailed could that form be?)and to allow information from Dr's and Consultants and those who know us best.

    1. Anon., since you wrote the above, Sue appeared on the World at One, light sabres blazing at Maria Miller! Sue did brilliantly and managed to make strong relevant points providing much more information than Lord Low was able to earlier on the Today program. (No disrespect to Lord Low at all, but he wasn't given much time).

  15. People do not neet to use the 'they work for you' link is list of Lords & their emails up posted up somewhere already, but not sure where right now. Maybe Bendygirl's blog?

  16. here you go guys -


    sending as a mass email - just put one name in the "To" bar of the address bar and then copy and paste the rest into the "BCC" bar. (Not cc bar) No time to do them all individually - it is happening in a few hours!!


    1. Thank you for this, am adding to my post.

  17. Dear Lord/Lady/Lord Bishop/Archbishop/Duke xxxxxxx,

    I am sure that in the past few weeks, the emergence of the Spartacus Report will not have escaped you. It contested the reforms to the Disability Living Allowance benefits as being a costly enterprise which ultimately will have serious and life-threatening consequences to the people in this country who rely on Living Allowance to do just that – live.

    I am writing to you today to urge you to support Clause 50, Amendment 80E, which calls for a pause to Personal Independence Payments in light of the research published in the Responsible Reform report, viewable here (https://skydrive.live.com/view.aspx/Responsible%20Reform%20for%20screen%20readers.doc?cid=cba86408918caa9e)

    It is vital that this reform, which deals with benefits that are necessary to the lives of families and individuals up and down the country, is not sped through like this with so many problematic aspects and a lack of consultation with those affected.

    Please be a voice for the rights and the lives of disabled people and their families and support Clause 80, Amendment 50E. Thank you.

    Yours sincerely,

  18. It only needs to be simple. No time for anything else now! Just write something like this - or just copy and paste this into your email -

    Dear Noble member,

    I am writing to you today to ask you to vote for
    Clause 80 - Amendment 50E


    Page 58, line 26, at end insert—

    “( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

    (a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

    (b) disabled persons organisations to be involved in formulating the assessment process.

    It is vital that this amendment is passed to ensure that the government takes the time needed to consult with those affected on all aspects of the proposals and to trial the assessment process before sick and disabled people are subjected to it.

    yours faithfully,


    Then do as instructed in the post above with all the email addresses, put a subject in the subject line - something like -


    and send.

    Hope that helps.

    1. Thes two links take you to pages that 1) allows you easily to email any Lord, and 2) is a list of all the different lords and ladies.




  19. A word of caution folks.

    Let the arguments speak for themselves now those who want to know the detail already know the strength of feeling and level of support that argument has the amendment says it all and jamming their email accountrs with proforma emails certainly wont impress them and runs the risk of losing some new found friends.

    Leave it to Maria to hang herself with this mythical £600 million even the DWP's own research via the forensinc examination of a random sample of all claimants as part of the Right Payment Program proves this.

    The simple truth is that the system needs reform because what we already know is that the the system is resulting in more underpayment of benefits than is lost to overpayments especially when underclaiming is so high more likely to be error on their part than ours.

    Maria Millers mythical £600 has never existed their own research via the Right Payment proved this.

    It was only ever a gestimate based on nothing but a misguided belief disabled people were as corrupt and fraudulent as say Bankers or MP's but the truth is we have far fewer rotten apples in our barrel and if anything the problem with the system is one is far more likely to be underpaid than over paid especially due to official error and the system itself disuades many legitamate claiments from claiming at all.

  20. Had a very useful reply from Baroness Smith. She asks that we encourage as many Lib Dem Peers as possible to turn up and vote for the amendment/s, as this time the amendments won't be won with just abstentions.

  21. Hi, can only send a couple of emails as have to go to important hospital appointemnt, can someone tell me who i should send them to, by local bishop doesn't seem to be in the HOL, etc.

  22. I have e-mailed all the peers in that list and will share this on facebook. Doing something is allaying the terror I feel over all of this. I am so desperately scared of losing my DLA. Keep up the fantastic work. It has helped me so much to read all the Spartacus stories and see that I'm not alone in feeling very scared about my future.

  23. i used the following Twitlonger to tweet all my followers.
    you can use it if u want 2 tweet urs



  24. Lord Greaves should be sympathetic

  25. sue on world at one with Lord Freud RADIO 4 today NOW!!!! GO LISTEN!!

  26. just heard its miller now, not freud!

    1. http://www.bbc.co.uk/radio/stations/radio4

  27. I've been usung a wheelchair for 43 years I was only 13 when in a near fatel road accident so I've missed the best years of life + now you want to scrap the D.L.A so this why you should surport Clause 80 Amendment 50E or live with your consencise if you think you are guilty of man-slauter for causing me to lose more oppertunity's to live with out restriction's

  28. Heard you on BBC news Sue, at something like 20 past 2 I believe, wasn't paying much attention to the time, anyway I thought you did well, and put your points accross nicely, just a shame they didn't give you much time to really put the point accross to the general public.

    I think you were only on for like 2-3 minutes? It said live from Brighton on the TV lol

    - Matt

  29. Heard you on 'World at One' Sue. I also thought you did well. And I enjoyed your being the first to speak!
    Have you noticed, one and all, that both 'Today' and 'World at One' are now talking of the government's welfare 'changes' (they're no longer 'reforms')? That seems to me a shift in perception. Well done one and all - and well done BBC.

  30. Lets hope that the Lords come forward again and put a stop to madness such as this recent example.

    Coma patient refused ESA benefit..

    I couldn't help but notice this on the CAB website/forum just now....


    "Yep- it has finally happened (or near enough).

    Client’s husband is in hospital in a coma. He was sent ESA50. Client contacted DWP to explain situation and was asked to obtain letter from hospital confirming he is in a coma. Did so. Was told to send it to ATOS rather than local BDC. Did so. Husband has now received decision letter- yep, as he has failed to return the ESA50 without good cause and is therefore capable of work and no longer entitled to ESA….

    You couldn’t make it up."

    Is this what those on PIP will be experiencing in the future? Dear god I hope not.

  31. You know that almost makes me want to laugh. It's like having stepped into a parallel universe and my brain can't compute that this is all really happening and a company could be so incompetent.It is so utterly insane and inhuman.

  32. My view point that i made months ago in which you were assessed for benefit in your own home by a independent doctor accompanied by a DWP benefits adviser to make sure you were in receipt of the right benefits is the only way to go

    The independent doctor would have all of your medical records to hand and your health care worker if you have one would be able to put any points across so that you would be assessed in a fair way

    My conservative mp thought that was the way to go also and i still believe that is the case

    And if lord fraud had any common sense he would also agree I'm sure

    So i would say to him let's cut the bull and do this reform process in a proper and fair way which is the only way

  33. nothing on BBC Parliament about this debate - spent the last 4 hours checking on HoC debate about town centres - important - but not as immediate as the DLA debate. Surely BBC are not biased?????

  34. When the dust settles and the post mortem begins, though as Sue says it may be a phyric victory for Fraud, we have to consider setting up a national network: This was was considered when the N/L welfare bills went through. Now with advanced social media, and the momentum all the hard work has engenderd, the time is now. Incredible things have happened this week and leading up to it: small victories have been won, people are listening, donating, supporting, the media is definitely at least for now re-orienting on welfare reportage. even the binary divide that has often existed between 'sick' and 'disabled' people has been bridged,The Spartacus model has made political and social media history and will be studied by politics and media students for quite a while. The charities have finally come on board, theough they have have been weak, vacilliating and in some cases corrupt, accepting Govt contracts in return for aquiescence, in the first instance, we must do it ourselves...

    My first suggestions are

    Perhaps most crucial at present, Sue or other Spartaci could make an application to speak at the Levinson media hearings, (perhaps asking Greg Philo too) they way disabled people have been portrayed in most of the media has been criminal and has had an impact on public opinion

    a lobby of the DWP or Atos or even No 10,

    Lobby to get Sue or Tanni on Question Time

    make explicit the links between ATOS and the Para-Olympics

    Make links with unions esp Unite and the PCS, they may help with funding

    Get the report endorsed by the Occupy movement and other new social movements

  35. link:


    1 amendment withdrawn
    1 ammendment not moved

  36. In touch on Radio 4 8.40pm-9pm devoted the whole programme to the debate and the outcome...Should be available via the I-player...I am very disappointed at the outcome...

  37. As i have posted before I was very much involved in campaigning against Nl's welfare reforms, it was a thankless task and i often felt very alone, now I don't and i am certain many others feel the same way..

    That is our victory,

  38. I've done a blog...not done very well and just too tired to properly edit but there is one there, with the little video I tried to make...need new memory card before I can do more x

  39. we lost

    The government won the Lords vote by 229 to 213.

    what now it's all over i knew that lord fraud would bounce back he quoted that stalling the process would cost over one billion pounds

  40. I suffer from enduring health problems and associated disability. I laid in bed tonight clutching my phone while reading Sue's twitter updates. I don't have any back-up of friends and I have felt painfully alone, depressed and afraid. It has been relentless and I am tired. The light was off and I laid there hoping for a final lifeline from the Lords today. I never got one.

    But thank you Sue for sharing it all with us, even with people like me who are too afraid to tweet or speak up. I didn't cry alone tonight.

    1. Anon 02.07pm - it's bad enough coping with chronic illness even with the support of a partner, friends etc., so i feel really sad for you that you are having to deal with all this alone, and the same goes to anyone else out there who is feeling like Anon.
      the likes of Lord Fraud, Grayling and co. really are on another planet.Shame on them. Goodnight Spartaci, rest and regroup to fight(knackeredly) another day! So many more Press on our side, so much more accurate info.in the public domain, we DID get the govt. rattled.

  41. [QUOTE]Anonymous has left a new comment on the post "CLAUSE 80 - AMENDMENT 50E":

    I suffer from enduring health problems and associated disability. I laid in bed tonight clutching my phone while reading Sue's twitter updates. I don't have any back-up of friends and I have felt painfully alone, depressed and afraid. It has been relentless and I am tired. The light was off and I laid there hoping for a final lifeline from the Lords today. I never got one.

    But thank you Sue for sharing it all with us, even with people like me who are too afraid to tweet or speak up. I didn't cry alone tonight[/QUOTE]

    sue and her team have done their best and am not sure how they will go from here

    [QUOTE]But thank you Sue for sharing it all with us, even with people like me who are too afraid to tweet or speak up. I didn't cry alone tonight[/QUOTE]

    yes there will be thousands like you there were tears in my eyes as well not sure why maybe just reading your plight that i know so well :'( :'(

  42. Well guys, remember this. Two weeks ago, no-one listened to us at all and we didn't expect they ever would.

    Boy did they listen to us today! xxxx

    More tomorrow, but sleep with a smile.

    Look at what we achieved!! An amendment. On Hansard. Forever.

  43. Sue - thank you for all you have been doing for us and thank you to all reading this who have worked with you.

  44. And it was by and for sick and disabled people. Even the peers who defended us so strongly were disabled.

  45. Very balanced and indeed emotional package on DLA/PIP on Newsnight, the best for many years, after all this is the programme that invited the inventor of Workfare in the U,S to do an unedited package, (read advert) on the programme and of course there was last week. But, credit where its due, tonight was very good and in the old humane and balanced traditions of Newsnight, we don't need special favours just equal treatment.

    Oh, and its shows we are having an effect


    1. Not sure it was that balanced.

      The minister on the committee seemed flustered certainly but went on to confirm that the assessments carried out by non-medical ATOS people (sic) were about determining people's ability to work rather than their needs for support - even on DLA - I would suggest the majority of people on DLA would find it very difficult to 'work' in the usual meaning of the word. The minister also was disengenious when talking about it not being about saving money rather reckoning that because no one on DLA has been reassessed the likelihood would be that many are well, fit and better now and therefore don't need the benefit. A more ludicrous statement would be hard to find.

      There is no doubt in my mind that what is happening here is part of a total 'cleansing' of poor, disabled and unemployed people. It is ethnic cleansing of the disability kind. It is vile. It is fascism.

  46. I've sent this to Cameron today. I've told him it's a first draft and that I hope to finish it before his government kills me:

    I’m sorry that I no longer have the energy to be busy all the time
    I’m sorry for being old
    I’m sorry that I can no longer work 14 hours a day
    I’m sorry for being disabled
    I’m sorry for being forgetful
    I’m sorry for appearing to be distant
    I’m sorry that I can’t carry a cup of tea from the kitchen without spilling some
    I’m sorry that my moods are such that I am depressed most of the time
    I’m sorry that I sometimes, increasingly, want to take my own life
    I’m sorry that I don’t conform to your media friendly view of the world
    I’m sorry I won’t be watching your Olympic Games
    I’m sorry that my sight is failing
    I’m sorry that my hearing is not all it could be
    I’m sorry my knees are not strong and that makes walking difficult
    I’m sorry that the pain in my back creates discomfort for me
    I’m human
    I’ve been here over sixty years
    My spirit is being crushed by you

    1. Be like me...Don,t let the bastards bring you down.
      But you post was very good,straight to the point.Sums up how I feel too.have done since I was 9 years old when I first tried to kill myself.
      But keep smiling...they hate smiles.


  47. Just found this blog linked from the NAS site.
    Very interesting.
    considering I just heard Ian Duncan Smith say there will be NO trial of PIP in response from a comment by Tanny Grey-Thompson.
    I was diagnosed with Aspergers Syndrome last September.My life has been a nightmare and the diagnosis hinted at a way forward for me.
    As a middle aged man of 51,you can imagine things like these reforms fill me with dread.
    Don,t get me wrong.SOME form of reform of the welfare system as a whole is long over due.
    Unfortunately,this "unelected" governments starting point is,"How can we save money".
    Not,"How can we ensure the right people get what they may be entitled to".
    I will continue to read the blog with interrest.
    At least it stopped me from wanting to kill myself today.