Thursday, March 27, 2008

Well, that answers that question.

So much for wondering how I'm going to fill the hour or so per day that I've spent doing my DLA forms for the last few weeks.

This morning, as I was sat on the staircase putting my coat on in order to go to the Post Office and send my Enormous Wodge Of Paperwork, the postie arrived and shoved a brown envelope through my letterbox.

It's from HM Revenue and Customs, Tax Credit Office.

Click here for the previous episode.

The short version is:

2005 - 2006: I owe them £500, which I would happily pay, except I do not have it due to becoming ill, loss of job, going onto benefit, etc. They defer payment. They ask for this £500 every three months or so. I still do not have it. They defer payment. And again. And again.

At the end of 2006, they send me letters saying I don't owe them anything, £0.00, zero balance. Woohoo! I don't hear from them for the entirety of 2007. Huzzah! I figure my debt must have expired.

2008: they demand payment of £500, immediately, or else legal action. WTF? I ring them up. They send me a form for disputing overpayments. I write to them explaining that I don't deny that I did owe them £500, once, but that in 2006 they wrote to me telling me I don't owe it any more, and I think it's a bit nasty of them to suddenly change their minds and threaten me with legal action.

Today's letter was basically an explanation of how I came to owe them £500 in the first place.

I already knew that bit. I'm not disputing that bit. I'm disputing whether it's okay for them to go "You don't owe us any money any more. *pause* Whoops! actually, you DO owe us money, after all."

No mention is made of the letters (which I sent them copies of) that told me I owe nothing.

It just says that I owe them the money, and, direct quote here, "You cannot appeal against the decision to recover your overpayment."

So tomorrow, I must phone them and explain in great detail about how my income does not cover my essential living expenses (rent, electricity, water). I suspect that we will then enter the deferral cycle again.

Meanwhile, I enter into a written-correspondence argument with the "Customer Service and Support Group Officer" who was unlucky enough to sign this latest letter to me. Who thinks I should finish my letter with a demand for a copy of their complaints procedure?


Anonymous said...

Got my vote for asking for complaints procedure. They make it so hard to be disabled that only an able-bodied person could manage! Grr (at the system not you).

Mary said...

Yeah, it's good, isn't it?

It's even worse when you first become sick.

Eventually you have to bite the bullet and accept that you aren't going to be able to go back to work. Your contract expires and you go to the Department of Work and Pensions to ask for enough money to live off. Believe me, that's a very demeaning thing to have to do. You don't do it lightly. You've got to be *really* ill to exchange a good wage for an income of benefit.

And because you are that ill, they think it's the best time for you to fill out:
a 60-page DLA form.
a 40-page Incapacity Benefit form.
a 30-page Income Support form, just in case you aren't eligible for IB.
A 40 page Housing and Council Tax Benefit form.

All to different deadlines, too.

You're probably also trying to tackle loads of medical appointments, not to mention dealing with the basics of life (showering, cooking, that sort of thing) which have become so much harder and more time-consuming to tackle.

And now, with the Employment and Support Allowance, when you get to the point of being so sick that you have to give up your job, they will immediately jump on you to... get a job! WTF?

Anonymous said...

the alternative: everyone can write little notes to the DWP saying "I'm sick" and get benefits for as long as they say they are sick.
look at yourself next to others - yes you are sick, but you work part time, you get out. why shouldn't the DWP scrutinise your claim closely?

Mary said...

Of course the DWP should scrutinise my claim, as closely as they like. That is their job. What they should not do is hamper my ability to function, and make my life even more difficult than it is, by placing demands on me (to try and prove my disability) that I am not fully capable of meeting (because of my disability).

If they simply watched me for 48 hours they would learn far more about my capabilities than a thousand pages of form.

Yes, I work. The reason I can work is because now I live with someone. I started work a month after I moved in.

When I lived alone, I could not work. This is because I needed every scrap of spare energy, and every iota of pain management, in order to do the simple, essential and daily things that my boyfriend now takes care of - like grocery shopping, and laundry, and dishes, and cooking, and helping me get dressed.

This is not something the DWP take into account when considering whether or not a person should work.

The work I do leaves me in agony. When I get home, I have to lie on the floor crying with pain despite my painkillers and doing physiotherapy stretches until I am capable of getting up the stairs.

This is not something the DWP take into account when considering whether or not a person should work.

Yes, I go out. Once a week. I sit in a room with half a dozen women and knit for an hour or so. Some weeks I can't even do that - I have to cancel because I've overdone it at work. Weekends are spent resting. Is this a reasonable work-life balance? I think most able-bodied people would be pretty damn cheesed off if it was suddenly imposed upon them.

This is not something the DWP take into account when considering whether or not a person should work.

Anonymous said...

should they be paying a doctor or nurse for that then, or perhaps a civil servant or social worker? would you accept the opinion of the latter and is that the best use of the former's time?

Mary said...

To scrutinise my claim? They already DO pay a raft of doctors and other medical professionals (from a company called Atos Healthcare) to do that, as well as god knows how many civil servants to create the forms, create the guidelines, assess the forms, be part of the appeals process and so on. Not to mention the going-out-and-spying they do for those accused of fraud.

Or do you mean for watching me? In which case I suspect you and I have had this conversation before...

Supermouse said...

As long as they're going to stay anonymous, I'd assume the person above is just a baiter who is healthy enough to troll sick people for the laugh of watching them deal with poorly-worded and pointless arguments that are based on the lack of comprehension that comes with not having had to deal with an invisible disability.

Some people can never accept that a system is unfair. They believe all life is fair, because that means that so long as they're 'good' then the bad things they see happen can never happen to them. Therefore, if bad things are happening to you, it must be your fault and you're fair game to be blamed for your own ills. The alternative is to realise that there is no way out of getting shafted by life. That's too scary for some and the more scared they get, the nastier they are about kicking other people when they're down.

All I can say is that anonymous is going to have one hell of a shock when old age hits.

Anonymous said...

yes, anyone who takes issue with anything you say must be an idiot and a troll. great point supermouse.

yes I was talking about the 48 hours scrutiny you suggested. it is simply not feasible is it? and what would it prove, anyway?

Anonymous said...

"As long as they're going to stay anonymous, I'd assume the person above is just a baiter who is healthy enough to troll sick people for the laugh of watching them deal with poorly-worded and pointless arguments".

I beg your pardon? What part of, "should they be paying a doctor or nurse for that then, or perhaps a civil servant or social worker? would you accept the opinion of the latter and is that the best use of the former's time?" is badly worded?

Okay, I'll spell it out in plain and simple language. No-one is suggesting that Mary doesn't have an entitlement to any benefits. It is not, however, asking too much to suggest that people making claims for my money should be required demonstrate their circumstances and, since the alternative is having to hire medical professionals to travel out and assess you.

But, no. It's an alternative to your comfy world, surrounded by people that are propagating and enabling your views and are in no way assisting your recovery. As soon as someone has the temerity to challenge the argument made in the original post, they're labelled a "troll". What was posted above (and it wasn't posted by me) wasn't "trolling", but it's a handy fall back when you haven't got a convincing counter-argument. The argument over them posting anonymously (as I have also chosen to do - if you don't want people posting anonymously, just turn the option off!) is also irrelevant. What should I do, put my full name and address up here? What difference does it make whether it's posted anonymously. Supermouse's unbelievably asinine response only goes to confirm my suspicion that none of the regulars on here had a convincing response to (entirely fairly raised) questions.

Mary said...

First things first - can we keep this non-confrontational, please?

I'm not saying the 48hrs observation is a perfect solution. It's an idea, which I had, because the current system is too inaccessible. Welfare is there to protect the most vulnerable people in our society. If those people are having difficulty accessing that protection, it's a very big problem. The fault lies with the system for not being accessible to the people it is supposed to have been designed to help.

Being told about cost-effectiveness is not going to make my problems go away. Appropriate help will enable me to deal with things despite my problems.

The point of the 48hours (or more) scrutiny is threefold.

Firstly, if they want to know about things like how I get dressed and undressed, or how I have a shower, or how I walk, it is a lot easier for everyone to just watch me do those things, rather than me trying to describe it in writing and them trying to understand what I've written.

Secondly, in a "big brother house" sort of context, they could monitor several people at once. Since the people inside wouldn't know, at any given moment, whether they were being watched or not, this would weed out an awful lot of fakers and exaggeraters - anyone who could *act* this level of disability wouldn't need to settle for a disability-benefit income.

Thirdly, it would be safer. At present, new applicants for disability benefits are in a cycle of "you can't get A unless you get B, and getting B will take months". Being in a situation where people are *watched* will not only help for benefit claims, but also for things like provision of equipment, grab rails and so on.

Mary said...

Anonymous 11:35 -
I don't mind people posting anonymously although I will delete threatening or abusive comments. I WILL try to answer sensible questions - as I hope is already apparent. But much as I enjoy a good debate, I do not spend the whole day attached to the computer and I'm not always capable of reading/thinking/typing so these answers are not always immediate.

I understand that you are anxious about your taxes being spent in the most sensible way. The point I am making is that the current system may very well not be the most sensible way.

Anonymous said...

"The point I am making is that the current system may very well not be the most sensible way."

But I have yet to see any viable alternative suggested.

Mary said...

Anon 12:19 -
There are people who get paid a lot more than you or I do, whose job is to come up with viable alternatives, rather than just talking about how awful it is that £8 billion of DWP benefits is unclaimed from the DWP and a further £5 billion is unclaimed from Tax Credits.

Obviously I can only speak for myself, but here it is: I am a disabled person working 20 hours at minimum wage and I should, according to the rules, be entitled to Tax Credits. However, I dare not claim again, because of the complexity of the system and the problems from the last time I claimed.

Anonymous said...

Sorry, I missed a post there. I understand that filling in a form is not much fun but the point about viable alternatives remains.

Surely most people would find it completely unacceptable for the Government to send every person who wants to claim these benefits to a big brother house to be watched?

Quite aside from civil rights and privacy issues, the number of people claiming some sort of benefit because of illness is in the millions and who knows how many people apply for it and get turned down. Would everyone have to wait for a spot in the house in a queue? How long might that take? How much would that cost? How much doctor's and nurses time would that take up? And as to your point about fraud, what is to stop someone from putting it on for 2 days?

Mary said...

To take your points one at a time:

It has nothing to do with form-filling being "not much fun". It's to do with things like:
- it hurts to use a pen for more than a few words.
- my condition is variable, at the moment, I'm doing quite well and we're having a debate, other times, I can barely remember my own name let alone correctly fill in a form. cf a few weeks ago, I got my own postcode wrong.
- I cannot, on my own, get as far as the nearest post office. Even the mobility scooter is a Good Days Only thing.

Ability, not preference.

I can't speak for other people. I, personally, would prefer to be watched, than to spend hours thinking about how X causes pain and Y is impossible and I can't do Z any more. The forms are access-all-areas, there's no semblance of 'privacy' whatsoever anyway.

Yes, it would be expensive, but so is the current system. A hell of a lot of people make a hell of a lot of money out of being part of the machine, the Atos lot, the recent Freud report, the admin staff...

Fraud will occur in any system, however, I believe observation would lead to less fraud. Let's imagine someone trying to claim fraudulently with an invented condition.

Filling out the forms is EASY for them. They have the energy and capacity to write as much of whatever fiction they like on there. But it's difficult, painful, sometimes impossible for many disabled people.

They then have to persuade their GP (which would take several appointments). But they can easily get themselves to and from such appointments, and as you say, "put it on" for ten minutes. Many genuinely disabled people can't easily get to and from appointments and don't want to drain the NHS by demanding home-visits unless it's desperate. A fraudster is unlikely to have any such misgivings.

Then persuading an Atos doctor. Again, the fraudster will have no trouble getting to the appointment and acting for an hour. A disabled person will have no end of trouble getting there (it's usually in the next big city) and need a week or so to recover.

But to manage to act 24/7, that would take some doing and it would take a VERY confident fraudster to attempt it.

ian said...
This comment has been removed by the author.
Mary said...

A much simpler way of putting it would be that I'm all for anti-fraud measures, as long as:
1) they do make things more difficult for fraudsters.
2) they don't make things more difficult for genuine claimants.

Anonymous said...

Think about what prisons and hospital beds cost. Now think about the cost of someone sitting in an office extracting the salient information from a form which has been designed to extract that information. What is the point of detecting fraud if the cost is so high there's nothing left to give to people who do need it?
I suspect that filling in the form would be a lot less wearing if you could lose the persecution complex.

Mary said...

What is the point of a disability welfare system that is inaccessible to disabled people because of the exact same difficulties which make them disabled in the first place?

Anonymous said...

and the point of one which spends all of its money on assessment centres?

Mary said...

You are correct. A system needs to be cost efficient. My idea probably isn't cost efficient.

This may be due, at least in part, to it being the idle musings of someone who has no management experience nor any detailed working of the 'behind the scenes' processes. I never claimed it was a complete and ideal answer. For starters, it would be rubbish for mental health problems - observation won't show that someone is convinced the aliens are spying on them via the toaster.

I concede entirely, it's a non-viable idea. My bad. I assure you, an idea is all it was - I have zero input on policy.

The fact remains, the system is failing some of the people who need it most (and I don't even necessarily mean me - some people are falling through the gaps in astounding ways that make me realise just how lucky I am) because of inaccessibility and overcomplexity.

Supermouse said...

anonymous: it is not necessary that Mary need be able to design a fully working disability benefit system from scratch in order to say the existing one is bad.

I've been through the DLA system once, and qualified. It took a lot of professional help because I was disabled. I was driven to it because I was starving. I didn't have enough money to pay for a taxi to the supermarket and to also eat the easy-to-cook meals I needed. I couldn't afford a cleaner and I was living in squalor.

Recently, due to ME and to other problems, I've qualified again, but this time I am living with my husband and not starving. I could claim it. I am not claiming it, because it's too difficult and I need to be less disabled to be able to fill in the forms to claim it.

The system is broken, because it's easier to get the allowance if you don't qualify, a true Catch 22. I don't have to be able to design a better one to show that it's broken, and neither does Mary.

How would you solve this Catch 22?

Anonymous said...

mary: you and the millions claiming IB and/or SDA have managed it because you need to, as you both point out. help is available for those who most need it. you didn't. in the absence of any alternative, relentlessly complaining unconstructively seems about as worthwhile as complaining about having to pay tax or getting old. if it suits you to keep that comfortable persecution complex going though, you go on.

supermouse: you disagree with me, therefore you must be some sort of troll.

Mary said...

First of all, I should point out that last year, I *didn't* manage it. I had to make the decision to NOT go to appeal and live without the money because I was too ill to deal with the appeals system. Even dealing with the reconsideration took a visible toll on my health. I then started cutting down on things and supplemented my living costs with what remained of my savings, until I moved in with Steve which of course changed my situation entirely.

Doing the forms which I did do, I managed because I have a great deal of support from family and friends, as well as a certain level of experience with the benefits system because of the nature of my old job. In addition, I am still able to use a computer, so I could access many useful online resources.

It is in no way a 'persecution complex' to acknowledge that there are many, many other people, with problems similar to mine or far worse, who simply do not have these resources.

Anonymous said...

As an amputee, I have an 'easier' time 'proving' my disability than any ME sufferer. However, the DLA still insist that the 63 page form be re-completed every 2 years. Is this because they think that somehow my leg will grow back? Surely someone at the DLA can see that my mobility needs will remain much the same till the day I die? But, no, every two years I go through the same performance. Go figure.
On a brighter note, the Citizen's Advice Bureau will send out an advisor to your home to fill in the forms for you - provided you are able to wait the (average) 6 weeks it would take in my area. I know this as I arranged a visit for my friend who is bed-ridden, as I was unable to get to her place to fill them in for her as I had previously. They won't, however, make copies for you - that you will still need to arrange for yourself.
Hope this helps for your next battle with the DLA Mary.
Regards, Terri

Mary said...

Hi Terri

I had a little bit of trouble trying to use the local Citizen's Advice Bureau where I was last time. Their phone number was more or less constantly engaged. Their email was down and kept bouncing back my mails from all three of the accounts I tried.

Going to the office itself was tricky but after a few days I got up the energy and managed to wangle a lift. But the waiting room was full. The volunteer on reception said that as well as the people waiting, there were a lot of people who'd said they'd come back tomorrow, so she recommended I come back the following week to see if it was any better then. I asked about appointments and was told they had nothing available.

I'm hearing how the CAB here is much the same, so I decided to just try to make what I wrote on my previous (failed) forms a lot clearer and more in-depth.

I don't blame them at all, they're an underfunded and understaffed organisation that has had far too much responsibility dumped on them for the available resources.

However, I did find some really useful online resources (particularly at and with Steve's help I've got the forms done, copied and sent.

Thanks for your comment :)

Mandy said...

I see what your saying Mary. This is not nice, just delete, anyone calling themselves anonymous is never worthy of a reply.

Mary said...

No, like I said, I've no objection to anonymous posters, even if they disagree with me, as long as it remains civil. "Anonymous" can include everyone who doesn't have a blogger/google account, not necessarily people with a reason to conceal their identity.

It is easier when Anonymouses do what Terri did and put some sort of name, real or otherwise, at the end of a post. It's handy to be able to tell how many people you're talking to, and who is saying what.

That said, making derogatory speculations about my mental health is crossing the line into uncivil. I think if that particular theme is pressed much further, I would get deletey.

Anonymous said...

I think calling people trolls is rather uncivil.

Terri - I agree that having to complete the forms again and again for something that you clearly are not going to recover from actually IS unreasonable and not to mention burdensome for the staff that have to do it again and again! Have you considered writing to your MP and representative groups about it?

Mary - You did manage, but you were rejected, you have managed subsequently.
If it helps you to think that the system is somehow inherently evil (as opposed to imperfect?) then carry on. But when you look at things in such an unbalanced and angry way you should expect people to take issue with you, especially when you label people who are trying to do hard jobs and that you expect to help you as, for example, "muppets", "bureaucrats" or "useless".
When you look at things in a rational way there are (slow) ways and means to change them.

Mary said...

Anonymous - I did not call you a troll, or anything else. So that is not a valid reason for you to insult me.

When the term "troll" got bandied about I asked everybody to keep things non-confrontational, and continued to answer your questions in a calm and polite manner despite your aggressive tone towards me. Please don't imply that I have been nasty or unreasonable to you.

I have never, ever said the system was "inherently evil" or anything else of the sort - I have only said that there were aspects that were inefficient, frustrating, and/or inaccessible. Do not put words into my mouth, and do not then use those words to imply that I am being "unbalanced and angry".

You suggest we try to change things. Unfortunately, what with the disability and all, we've mostly got our work cut out managing day-to-day life. Like many others, I can type rubbish on my personal blog to wind down about the stuff that bothers me, no problem, but I do not have the energy or ability for any sort of "official" fighting.

I appreciate the hard work of the frontline staff. I've said so several times on this blog and also several times in writing to the agencies for whom they work. 90% of the frontline staff I have dealt with have been wonderful if a little under-empowered.

As for "managing" - no. The government states that disabled people are entitled to a certain minimum standard of living. When the system fails us, and we end up scraping by at a standard of living which is far below what the government says we are entitled to - that is not "managing".

Anonymous said...

but your blog is not balanced. "muppets", "bureaucrats" "useless" "morons" are quotes.
as is typical of the times, you have a very strong sense of what you are entitled to but none whatsoever of what you should contribute. ME is a not well understood condition that people clearly need help to deal with in a fair way, do they even know the extent of the problem? What exactly is to stop you pasting any of the content of this blog into an email to your MP/the DWP/a representative group? Calling it an "official campaign" does make it all sound very difficult, doesn't it?

Mary said...

Yes, those are words I have used. Usually in relation to specific instances of incompetence or bureaucratic cock-ups related to my own benefit claims. As far as I am aware, it is perfectly reasonable for me to vent my feelings on my personal blog when I encounter such frustrations.

As it is my personal blog, I am not accountable to anyone to keep it "balanced", least of all to an anonymous commenter who is aggressive and insulting towards me.

However, once again, I would like to repeat that I have praised people and agencies which have helped me, every bit as much as I have despaired of those which have been obstructive.

Anonymous said...

indeed it is, however disagreeing with what you have said or asking questions is not aggressive or insulting.

(and are you aware that your personal blog is published for all to see, including those who might not wholeheartedly agree with you?)

Mary said...

Disagreeing with what I have said and asking questions is not aggressive or insulting.

Making derogatory speculations about my mental health, ignoring polite questions put to you in favour of creating new arguments, using an unbalanced sample of quotes from my blog to try and claim that I am unbalanced, and consistently adopting an accusatory tone... that IS aggressive and insulting.

Of course I understand that not everyone agrees with me. If I objected to that, why on earth would I enter debate with you? I'd simply delete your comments, or turn off commenting altogether.

I am aware my blog is published for all to see, right across the world. That's why I described it as "personal" rather than "private".

It is personal in the sense that it is for me to write whatever I want to write as long as I remain within the bounds of the Blogger Terms and Conditions. I can ramble, I can change my mind, I can write about whatever subjects I feel like, I can write fiction or nonfiction, I can stop writing when I'm not well enough. I'd lose all of that if I was trying to be any kind of 'official campaign'.

Anonymous said...

yes, it was me who failed to answer a perfectly valid question. you carry on telling yourself if it's easier to digest. bye.

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