It seems lately that every day another minister for the DWP has something disastrous to say about claimants. The whole scroungers rhetoric took on a new slant in the beginning months of this year with statistics like, 71% of DLA recipients on life time awards left to languish un checked and 8,000 move in to work because of the benefit cap. These sorts of figures, of which there are numerous, are hard enough to swallow at the best of times, and these are far from the best of times. For disability campaigners it is hard to almost daily, see stats we know cannot be true, banded about like the crock of gold at the end of the welfare reform rainbow.

This is how our campaign started really, we were both on Facebook both bemoaning yet another press release from Esther McVey that announced another appalling stat that both Jayne and I knew to be nonsense; I said “someone should right an open letter to that woman”, Jayne replied “are you up for it” and I think my reply was, “what me!’” and it went from there. We drafted an Open Letter to Esther McVey the Minister for Disabled People and put it up on line asking people to sign it; over the space of a month or so, 866 people signed the letter and left comments, some angry, some supportive of what we where trying to do, and some harrowing stories of Work Capability Assessments and hardship brought about by the so called reforms.

Whilst we were promoting the open letter and collecting signatures Jayne approached change.org about setting up a petition. It had been decided early on to send a copy of the open letter to the Work and Pensions Select Committee, including any comments along with the list of signatories, asking them to investigate the misuse of statistics by the DWP. We sent a copy of the letter and signatures to Dame Anne Begg the chair of the select committee, and continued to update her as the open letter grew. So it made sense to address the petition to the same Work and Pensions Select Committee, given their particular interest in the open letter and pages of comments. They W&PSC are responsible for monitoring how changes in policy and laws, effect people on the ground and can investigate when things go astray; they can also investigate MPs behaviour.

We launched our petition and waited to see what would happen, not really expecting very much and we were pleasantly surprised when it started to climb quite quickly. In the mean time we had closed the open letter and sent both a hard copy (by special delivery) and an email copy to Esther McVey, and several other politicians. We had discovered after launching our letter that many other people were trying to get some action to stop the DWP ministers misusing stats; from other disability groups, through to MPs and even members of the select committee, so it seemed our letter and petition were timely.

We sat back and waited for a reply from Esther McVey…….. None came….. But…. The petition with change.org had succeeded spectacularly; currently standing at 100,593, it has also been mentioned in several national newspapers including the Guardian and the Newstatesman.

After a month or so we decided we needed to nudge the DWP regarding a response to the open letter, and so we wrote a second letter asking for such a reply; this was both emailed and hand delivered to Esther McVey’s office by a fellow campaigner. This time we didn’t wait and we drafted a template letter for supporters to send to their MPs asking them to find out why the open letter had been ignored. This got us an official reply very quickly, but it didn’t answer any of our original points and was very dismissive; we forwarded this to Ann Begg who did not seem amused, nor were we.

A few days later we were contacted by Anne Begg to inform us that…

“we will be questioning the Secretary of State himself on the use of Statistics as part of his evidence session on the Department’s Annual Report which will be at 9.30 am on Wednesday 4th September.”

Unfortunately the wheels of parliament run slowly and a couple of weeks later we received another email…

“Just to let you know that we are having to postpone our evidence session with the Secretary of State as the DWP won’t have published its Annual Report until after the House returns in October. As the Sept session was to include both the finances of the dept as well as its use of statistics, it is better that we have the information from the Annual Report before quizzing IDS.”

I don’t yet have a date for the session but will let you know once I know.’

So this is where we are now; we have in the pipeline another letter to Esther McVey demanding a proper and considered reply from her and not a sectary, and we have October to look forward to. We also hope to be handing our petition in to Liz Kendel MP outside the Houses of Parliament, where she will then submit it to the floor of the House of Commons. We are trying to arrange this as close to the date we get from the W&PSC, for the meeting with Iain Duncan Smith, as possible; adding the voice of over a hundred thousand people to those MPs and campaign groups that have also called for the committee to investigate.

In the mean time we intend to keep collecting signatures and evidence of the misuses of stats by MPs and Ministers and continue to try to get a reply from the disabilities minister.

Jayne and I had met some time before all this, on facebook and twitter and we are mutual members of many FB disability campaign groups; we have both in the last few years become increasingly involved in various campaigns and campaign groups. Jayne describes herself as a fifty(ish), disabled woman (including Fibro) who worked full time for over thirty years as a community activist, adult tutor & counsellor whilst also raising her, now adult children; until her health degenerated to a point her GP compelled her to leave employment 4 years ago. Since then she’s been fighting the system to claim contribution based ESA & DLA she’s had 4 ATOS assessments and has been through 3 reconsiderations, where she had to persuade DWP decision makers, that her Dr & consultants are actually correct and 2 tribunals (both successful). The trauma of these experiences alongside battling with officers at her Local Authority for Housing/Council Tax benefit on each occasion has made her very cynical about the rationale behind all of the ‘Welfare Reform’ cuts. She is also a carer for her partner who also has a chronic long-term condition.

As for myself I am a 48 yr old mum with Fibromyalgia diagnosed 17 yrs ago, I have a six yr old with SPD, and I’m a carer for my partner who has bone cancer and MSSA bone infection.
I get DLA and I have a job. I’m a community education art lecturer, I work with people with mental health problems, and I also have my own business that I’m struggling to keep a float with no help, because I don’t meet the DWP’s minimum income floor for the work programme.

I got involved with the We are Spartacus Network a couple of months after I had my own ESA assessment; which was a month before I was due to go self employed (what a waste of money that was), I was found ‘Fit for Work” no big surprise, even considering I am still ill. I am also a co founder of Disability Matters UK a disabled person led disability organisation.

I have watched my students and sick and disabled friends fall foul of the ESA process; people who ARE genuinely sick and disabled being left with next to nothing to live on and living in fear of the PIP assessments to come. And I have watched these same people as they bang their heads against a wall this government has created, a wall fashioned out of spin and misinformation to discredit all claimants of DLA, so they appear to be fakers, even though the fraud rate of DLA is a tiny 0.5%. The reality of these people’s lives is so much worse than most can imagine.

Iain Duncan Smith in his capacity as Minister for the DWP and the 4 junior ministers under his authority since the coalition was formed, have all persistently misused statistics and rhetoric to justify the changes to Social Security.

We feel it is important that ministers do not misuse statistics to push forward with controversial policies – Ministers have:
A) Duty to Parliament to account, and be held to account, for the policies, decisions and actions of their departments and agencies,
B) N/A
C) It is of paramount importance that Ministers give accurate and truthful information to Parliament, correcting any inadvertent error at the earliest opportunity. Ministers who knowingly mislead Parliament will be expected to offer their resignation to the Prime Minister,
D) Ministers should be as open as possible with Parliament and the public, refusing to provide information only when disclosure would not be in the public interest, which should be decided in accordance with the relevant statutes and the Freedom of Information Act 2000 Ministerial Code

It is important ministers take responsibility not only themselves but also for their ministerial team’s actions and this is why we wrote the Open Letter to Esther MCVey and started the Petition to ask the Work and Pensions Select committee to investigate.

Since writing this we have had a second hand reply via Michael Meacher MP who received a reply from Ester McVey in reply to his query about us having not had an adequate reply it is long winded and basically doesn’t answer anything … We will be following it up…

Thanks for spending time and spoons to read this I know its long Phew!
Jayne and Debbie

Groups we are involved with…
WOW Petition
Deaep
We Are Spartacus Network
Disability Community UK Facebook Group
Disability Matters UK (Blog)
Disability Matters Facebook Page
UK Fibro Facebook Group
Cornwall Fibro Facebook Group
Talk about Fibro/ CFS/ ME Only Facebook Group
Cancer support for Partners and Carers Facebook Group

Our Blogs
Jayne Linney
Debbie Sayers Ramblings of a Fibro Fogged Mind

Background articles about this story on our website

“Iain Duncan Smith not appearing before Work and Pensions Select Committee on 4th September to answer questions about his use of statistics to make political points“ published 27th July 2013
“Successful E-Petition on benefits heads to parliament” published 19th July 2013

I have had one of those collections of letters you can only get from DWP (Jobcentre Plus.) You know the type, it’s as if someone has cleared a printer jam and they have sent you all the rubbish the system sent to print!

It is so silly when you get multiple letters at the same, often containing contradictory information. Anyway, reading between the lines it looks like they are backdating my Support Group ESA payments after all. You get a four page letter each time a payment setting is changed. “From [Random Date] your payments will change to [Random Value] a week, if you disagree then you can appeal etc…….” it always seems that these dates are plucked out of the air and it’s almost impossible to work out if your getting the correct amounts. When you put all the letters together you have multiple dates, some only a day or so apart, the only true approach you can take is to total what you think you should be paid over a certain period, total what you have been paid and if there within a hundred quid of each other then accept it, if not, (deep breath) complain! Whoever thinks this process is fit for purpose needs a health check. Wouldn’t it be nice to have it layed out bank statement style in over a page so you can see exactly what’s going on! People say fuel bills are confusing…….

I will share a little story with you, my mum received a pile of these letters for her ESA, basically they all said from [Random Date] your payments will be £0.00, if you disagree……. Blah, blah blah!
There was no explanation as to why her ESA had suddenly stopped, there was no change in circumstances or further information at all. Obviously she rang them and got nowhere……. well after two days and HOURS on the phone she got through to someone who said “ah, I know what’s happened, we needed some information from you but the system isn’t capable of printing a letter out to ask you to provide it. So what we do is make the system send you a letter saying your benefit will be £0.00 as that usually makes people panic enough to call us, that way they will eventually get through to this department and we can ask them for the information over the phone. Then you will get another letter saying your payments will be the correct amount and if it’s put on the computer correctly it will be from the same date the system stopped the payments from!”

HOURS she was on the phone for! Bouncing from department to department getting false explanations until they got to the correct department! How much time and money is this wasting, can’t they just pick the phone up and ask for the information? Instead they send letters out to panic people into calling them? I’m surprised we’re not in some sort of national financial crisis where they are paying out more than they get in in taxes…………………….. “Oh, now wait a minute!”

I will cut to the chase……. I’m in the Support Group for Employment & Support Allowance!!! It’s taken a matter of days short of Three Years to get it though!

That’s right, three years of hellish backwards and forwards communication, involvement of MP’s threats of legal action, national and local media involvement, and even threats to publish my entire case file online have paid off! The truth is, since I left employment as a Police Constable I have been unfit for work and work related activity and as such I contacted the benefits hotline all those years ago and was advised that Job Seekers Allowance was the correct benefit from an adviser who hadn’t even heard of Employment & Support Allowance! This set the tone and was the standard of service I have received from “Jobcentre Plus” and the DWP at almost every turn. Looking at my file its sheer thickness is about the same as a pack of 500 sheets of A4 paper and my success is down to my painfull journey to learn about the law so I know what should happen, better than most of their paid “advisers” and hold the DWP to account at every turn.

One major objective for this site is to educate and inform, so that suffers of Fibromyalgia don’t have to do what I have done and can benefit from the lessons I’ve learnt, as its almost impossible to get the correct benefit unless you learn everything about the system and the law behind it. This is because the system does not work, the staff are incorrectly trained and the computer system that manages all claimants is unfit for purpose!

Obviously for me it’s not all good news, for some reason I can not fathom just yet I won’t be in the Support Group until the 28th August. I don’t yet know why I can’t be in the Support Group from now or even from the date of appeal. I also don’t know why my benefit isn’t being backdated, my latest appeal started last year and all my ESA was cut back in April/May time. Another thing I don’t know is how long I have been awarded it for, from experience I know it can be for as little as three months at which point I will have to start again with an ESA50 form and another probable ATOS medical. It is a joke that classification can take longer than the award is for and the appeal process can take over a year for an award of three months! So chances are a claimant will either be in the assessment phase or an appeal phase rather than being in an confirmed awarded phase! It’s o wonder the DWP have completely overloaded themselves with assessments and appeals is it?

I will now have to fight for my award to be backdated so the fight is far from over! I also want to write a comprehensive guide in PDF form on benefits like ESA & DLA. This will include advice on how to prepare for an ATOS medical, how to write a successful appeal and how to prepare for a tribunal. The truth is that this is going to take quite some time, my health means most of my time is spent in bed and incapable of working on such a document as frustrating as it is. In the meantime a lot of the advice I would write in a guide can be found on the benefits sections of this website. I can not stress enough how important it is to do your own points assessment using the links I have provided before you fill in an ESA50, attend a medical, file an appeal or attend a Tribunal. Also remember its all about evidence, your word is not taken at face value so get statements from medical professionals and inform all consultants etc you require a copy of all reports to your GP as trying to get them all copied afterwards takes time and probably money!

Of course, I will keep you updated with how I get on! Use the site and get in touch if you have any questions!