So How Am I? By Sue Marsh #spartacusreport
Well I can confirm categorically that Arbeit does not macht you frei.
Quite the opposite in fact. Far from "freeing" me, work has put me in a hospital bed chained with plastic tubes.
I'm almost certain none of the politicians so glibly deciding our futures know what the "spoon bank" is. If you have a long term condition, then you only have so much energy for any given day. When it's gone it's gone - WIGIG. Now that doesn't mean you can't borrowenergy, but just like the deficit, it has to be paid back.
When you borrow energy (or "spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you're a little too shrill, a little too twitchy, you're eyes a little too bright, but I'm sure Mr Grayling wouldn't have noticed any of that as he sat talking to the composed little scrap with her make up just so.
After a while, your natural instincts try to step in. "Go to bed" - the thought unbidden takes you by surprise. "Just close your eyes" - the siren call of rest as the adrenaline ebbs for a moment.
In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt.
And then I stopped.
When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you're not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those "niggles" that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain.
Quite the opposite in fact. Far from "freeing" me, work has put me in a hospital bed chained with plastic tubes.
I'm almost certain none of the politicians so glibly deciding our futures know what the "spoon bank" is. If you have a long term condition, then you only have so much energy for any given day. When it's gone it's gone - WIGIG. Now that doesn't mean you can't borrowenergy, but just like the deficit, it has to be paid back.
When you borrow energy (or "spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you're a little too shrill, a little too twitchy, you're eyes a little too bright, but I'm sure Mr Grayling wouldn't have noticed any of that as he sat talking to the composed little scrap with her make up just so.
After a while, your natural instincts try to step in. "Go to bed" - the thought unbidden takes you by surprise. "Just close your eyes" - the siren call of rest as the adrenaline ebbs for a moment.
In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt.
And then I stopped.
When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you're not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those "niggles" that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain.
And here I am. In a side room on an acute medical ward. So infected, such a blob of immune horridness that I am not safe to be around other humans. I must be screened for scary things, because scary things happen when you are "immuno-compromised". This is not the face you all saw all week eh?
I'm not the only one. We have at least two other spartaci that I know of in hospital - one in intensive care. Another collapsed two days ago after spending a week, non stop, sitting at his computer, building us a spreadsheet with one painful hand. Kaliya hasn't been able to speak for over 3 months as her oesophagus has collapsed on itself.
This is the reality of sick and disabled people fighting back. I can put it in very stark, unemotional terms, but that is what it takes. There is no doubt at all that some of us did this knowing that our lives were at risk. What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard???
Yet most of our media sit comfortably in their glass and chrome towers, desperate to be convinced that we are just a few snatching, greedy, shirkers. All we want is to "protect our special interest group" or "not take our share of the pain" You could see the irritation last week when they were forced to report that all may not be well with the welfare reform bill. Most took the government line. "But Sue, you must agree that DLA needs reform?" When I knew they didn't have the first idea why it might - hadn't read the research, hadn't done their job.
They ignored the coalition we built, they ignored every major charity backing the Responsible Reform report and issuing press releases and statements in support. They ignored the rush of Blairites to confirm that actually, some very bad things are happening. Not one did a serious piece on our research. Not one. they all wanted "stories" - the soldier with his leg blown off refused benefits, or the cancer patient who dies just hours after being found fit for work.
We wouldn't give them. We refused. Because that's not what the Spartacus Report was about. There were at least 5 serious news stories in it, and if that wasn't enough misery-porn for them, then our story will just have to wait.
I'm "in the best place" - antibiotics and saline drips and painkillers are oozing into my blood. Everyone is very kind. The nurse who admitted me knew who I was and actually grabbed my wrist to check my name - "Are you Sue Marsh??? You??"
I have no idea if we will be able to do what we did again. We knew it was unsafe. At some point, we need the more able to take some of the load. We need them to see what is being done in their name. We need them to act. Because we can only act for so long.
Clause 80 - AMENDMENT 50e #spartacusreport
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.
(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
BARONESS GREY-THOMPSON
BARONESS WILKINS
LORD LOW OF DALSTON
BARONESS CAMPBELL OF SURBITON
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?
Lord Freud's Letter to Peers re #spartacusreport & our response
- Today, Lord Freud has written to peers with a response to the Responsible Reform (Spartacus) report. This is the full letter, and our response to his claims :
- 16th January 2012
- Dear Colleague.
- I understand that you may have received a report recently entitled 'Responsible Reform' by Dr S J Campbell and other disability representatives. I believe this report grossly misrepresents the way the DWP has been conducting disability reform thus far, and I would like to briefly explain how the report's criticisms are misplaced and misleading. The reform of DLA is long overdue, and I am determined to improve the system of state support for disabled people and have made it a personal priority that this is achieved in an open, consultative manner.
I think we all agree that the reform of DLA is overdue, we just disagree that PIP is the right reform
Responsible Reform suggests that the consultation period, following the publication of the 'Disability Living Allowance reform' consultation document, was insufficient. The Government's Code of Practice on Consultation recommends a minimum 12-week consultation period for public consultations, unless there are good reasons for a limited consultation period. The formal public consultation on DLA reform ran from 6 December 2010 and closed on 18 February 2011. While we fully aspire to the code's recommendations, we felt a 10 week period was adequate, given that the consultation was limited to general principles only, was preceded by extensive engagement with a wide range of stakeholders and disabled people and will be followed by further extensive consultation on the detailed proposals.
The consultation asked specific questions that would affect the lives of disabled people, it was not "limited to general principles only." This letter does not explain in any way why the consultation period was shorter than recommended under the Code of Practise on Consultation. If anything, respondents felt the period should have been longer than 12 weeks as a "reasonable adjustment" to those disabled people who needed extra help or support to participate.
As outlined in the 'Disability Living Allowance Reform' public consultation document, the Welfare Reform Bill sets out the high-level legal framework of powers underpinning the new benefit. The detailed requirements will be set out in secondary legislation. I am committed to further consult on how we use these powers, and it is my intention to consult fully on the secondary legislation where the rules for Personal Independence Payment will be different to those currently applying to Disability Living Allowance. This consultation will build on the earlier one.
As the previous consultation took no account whatever of the opinions of sick and disabled respondents, we have no reason to believe that future ones will be any more transparent. We remain very concerned that legislations will be passed without these "detailed requirements" and call for a pause to PIP until it is clear exactly how it will affects us.
- 500 were from groups representing millions of sick and disabled people throughout the UK.
- 2,500 were template letters. We reject the idea that people sent template letters to the Government just to congratulate them and argue that these will almost certainly show some concern over the proposals in 100% of cases.
- Given the overwhelming opposition to the plans for PIP expressed by the 523 groups who responded (national charities, local authorities, local charities and disabled people's organisations) representing millions of disabled members, it would be remarkable if the 2,500 individual responses were entirely in support. However, we have put in a further FOI request for all 5,000 of the remaining responses - information that we would anyway, expect Lord Freud to make public in support of Lord Freud's claim that "All consultation responses, over 5,000 individual submissions, have been thoroughly and appropriately considered in the Government's analysis and have been used to inform the design of the new benefit and supporting processes."
- Responsible Reform further suggests that we did not take into account responses we received to that first consultation. I completely reject this. Can I make it clear; this report has only considered 10% of the responses we received and only those from organisations. All consultation responses, over 5,000 individual submissions, have been thoroughly and appropriately considered in the Government's analysis and have been used to inform the design of the new benefit and supporting processes.
- The Government received 5,500 responses to the consultation. Of these :
- The reform process for DLA/PIP remains open, consultative and with a real focus on co-production at all key stages. We have worked with disabled people and disability organisations and continue to do so; my Ministerial colleagues, Departmental officials, and I meet with them on a regular basis. We consulted informally with disabled people and disability organisations in advance of the formal public consultation, and we have developed the assessment process for the new benefit with an independent group of specialists in health, social care and disability, as well as some disabled people.
"Meeting" does not confirm co-operation or engagement. In our experience, disabled people and their organisations are increasingly frustrated that their opinions are ignored. In particular, whilst some form of assessment is supported, we can find no support at all for the ESA-style assessment proposed by the Government.
This has not been a passive relationship. The comments, input, advice and guidance has led to changes to both the assessment criteria and the overall policy, most notably that we will not remove the mobility component of both DLA and Personal Independence Payment in residential care homes.
An enormous coalition of disabled people their organisations and major charities are saying that they DO feel this has been a passive process. There are many, many elements of the welfare reform bill that we are all warning will cause real hardship. Removing the mobility component of DLA from those in residential care homes is just one proposal that would have been unworkable and discriminatory. There are many more and the Government have refused to consider alternative proposals. The assessment criteria remain a cause for deep concern across the disabled community and are still far from workable.
- The Department has also established the Personal Independence Payment Implementation Development Group, which meets regularly and involves over 50 organisations of and for disabled people. This dialogue is crucial as we design and develop delivery arrangements. The Department has also adopted the principles of user-centred design for Personal Independence Payment that places customers at the heart of the design process to ensure their needs are reflected in the way policies are delivered.
This response does not address any of the serious concerns raised by the Responsible Reform report. (Spartacus Report) That this letter fails to comment on the use of misleading statistics to justify reform, fails to comment on the repeated warnings that proposals for PIP may breach international and UK equality laws, and fails to understand what is leading to the growth in DLA caseloads is of great concern. They still do not explain where or how they decided to cut 20% from the DLA budget or look at the impact that this will have on disabled people.
It is what Lord Freud does NOT address in this letter that we believe ought to give peers the greatest cause for concern.
My Ministerial colleagues and I are personally committed to making Personal Independence Payment an effective, efficient benefit that targets support where it can help those facing the largest challenges in leading an independent life. It is in everybody's interest to make sure that disabled people and their representatives are involved as we design a solution that achieves those goals. I believe my Department has and is taking the right approach to achieve that, and we will continue that open dialogue as we during the implementation period and beyond.
- [signed]
- "Lord Freud"
- Response on behalf of the Responsible Reform report by Sue Marsh and Kaliya Franklin
- Minister for Welfare Reform
Spartacus Stories #spartacusstories #spartacusreport
This week, the focus in the Lords will shift to Disability Living Allowance (DLA) and Government plans to scrap it entirely and replace it with Personal Independence Payments (PIP).
It is this proposal that prompted us to produce the Spartacus Report or Responsible Reform.
Sick and disabled people, their charities and organisations do not support the plans, which are based on an ignorance of disability, flawed evidence and will do great harm to millions. The Government are steamrollering the changes through despite growing calls for PIP to be put on hold until the plans can be made safe.
We do not oppose reform of DLA - sick and disabled people want the benefit to be simpler and better targeted. We DO oppose plans that will fail causing millions to suffer. We call on the House of Lords to attend the debates tomorrow and vote for a pause.
This morning, we see desperate attempts at propaganda from the DWP. Once more, we must ignore it, however painful it is. We must ignore the fear that these attacks inspire and make our own case honestly, calmly and clearly. Once more, we must present the British public with evidence and trust that they will not accept this attack on the most vulnerable of all.
All day, we will be posting stories here http://spartacus-stories.
They will tell people what DLA is really used for and how it helps us to live as independently as we are able to. All over the internet, people will tell their side of the story and the blog will be updated all day. Please use the hashtag #spartacusstories to tell your own story on twitter or to post links to your own experiences.
Update your statuses on Facebook, calling for a pause to PIP and asking peers to attend the debate tomorrow. Blog, send the links to your local paper, ask friends and family to join in.
We must report our own news, we must be our own advocates.
It is becoming clearer every hour that the Government have no understanding of their own policies. Their arguments are unravelling by the day and no amount of lies or spin will hide us away.
If the best argument the Government can make is "we can't afford it" or "you don't deserve it" then we must just trust the public - and the Lords - to decide for themselves who to listen to. We must hope that they ask who they believe - corrupt, out of touch, ignorant, politicians or the very people they hope to silence and ignore.
I am confident they will hear our stories and reject the arguments of MPs who receive more in food expenses than we must live on for a month.
#spartacusstories is our chance to be heard.
You can email your blogged #spartacusstories to spartacusstories@gmail.com
It is this proposal that prompted us to produce the Spartacus Report or Responsible Reform.
Sick and disabled people, their charities and organisations do not support the plans, which are based on an ignorance of disability, flawed evidence and will do great harm to millions. The Government are steamrollering the changes through despite growing calls for PIP to be put on hold until the plans can be made safe.
We do not oppose reform of DLA - sick and disabled people want the benefit to be simpler and better targeted. We DO oppose plans that will fail causing millions to suffer. We call on the House of Lords to attend the debates tomorrow and vote for a pause.
This morning, we see desperate attempts at propaganda from the DWP. Once more, we must ignore it, however painful it is. We must ignore the fear that these attacks inspire and make our own case honestly, calmly and clearly. Once more, we must present the British public with evidence and trust that they will not accept this attack on the most vulnerable of all.
All day, we will be posting stories here http://spartacus-stories.
They will tell people what DLA is really used for and how it helps us to live as independently as we are able to. All over the internet, people will tell their side of the story and the blog will be updated all day. Please use the hashtag #spartacusstories to tell your own story on twitter or to post links to your own experiences.
Update your statuses on Facebook, calling for a pause to PIP and asking peers to attend the debate tomorrow. Blog, send the links to your local paper, ask friends and family to join in.
We must report our own news, we must be our own advocates.
It is becoming clearer every hour that the Government have no understanding of their own policies. Their arguments are unravelling by the day and no amount of lies or spin will hide us away.
If the best argument the Government can make is "we can't afford it" or "you don't deserve it" then we must just trust the public - and the Lords - to decide for themselves who to listen to. We must hope that they ask who they believe - corrupt, out of touch, ignorant, politicians or the very people they hope to silence and ignore.
I am confident they will hear our stories and reject the arguments of MPs who receive more in food expenses than we must live on for a month.
#spartacusstories is our chance to be heard.
You can email your blogged #spartacusstories to spartacusstories@gmail.com
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