Tag Archives: benefits

PIP – my recurring nightmare

17 Monday Oct 2016

Posted by in Blog, Disability, DWP, Mental Health

≈ 2 Comments

Tags

, , ,

Sunday night, late September

Well, it was a blissful four months without any DWP contact at all. A glorious summer devoid of this specific anxiety, along with the harsh, tinny compressed tones of the Four Seasons that inevitably accompany it (due to Vivaldi-specific PTSD, I will never listen to that piece for pleasure again). It was also a summer of drastically worsening illness, in terms of fatigue and autonomic dysfunction, but also, paradoxically, much improved mobility as my powerchair arrived in June.

Now summer is over. The brown envelope arrived the day after our return from our late holiday in Vienna. The timing couldn’t have been more symbolic.
Your PIP runs out on December 17th. Please reapply.
I knew I would be facing reassessment this year, even though I only received my first payment in January. I knew I’d only get a year. But I didn’t realise that I would have to fully reapply, not renew. This has sent me into something of a mental spiral, remembering all the stress, anxiety, extra dissociative episodes which occurred while trying to complete the original form – and realising that I will probably have to do this all over again – perhaps only to be told that I don’t qualify after all and that I will have to go through another appeals process.

It’s past 5 in the morning. I’m too anxious to sleep even though tomorrow is only the phonecall to clear up the renewal/reapplication confusion. My brain kittens figure it never hurts to panic early.

Monday evening, mid-October

The forms have arrived. It took me over a week to summon the courage to call the number and wait on hold through 40 minutes of pain and intrusive noise last month. I asked about reapplication vs renewal, and got told that whatever was on the letter I was sent, that’s what to do. So starting again it is. The deadline is November 7th, so I doubt I will be assessed in what remains of 2016 (last time I waited 7 months from sending the application to the initial assessment).
This means that I will lose almost £62 a week from December when my PIP runs out, until it  is (potentially) reinstated, as the Severe Disability Premium added onto my ESA is reliant on my getting PIP. It’s almost like they expect me to fail.

We’re doing the forms tomorrow evening, using the ones from 2014 as reference. I know that a worsened condition (both physical and mental) gives me no guarantee that I’ll get the points to reflect this. Cynically, I think it would be a miracle if I even matched last year’s results (Enhanced rate care; nothing for mobility). I had to go to a tribunal to get that. I’m not sure I can deal with another year of my life essentially put on hold so I can ensure I have the support I need. It’s a bloody grotesque system.

DWP: Disabled Woman, Persecuted.

12 Thursday May 2016

Posted by in Blog, Disability, DWP, Uncategorized

≈ 4 Comments

Tags

, , , , ,

I had two weeks of breathing easily, knowing I had all I was entitled to.
Two weeks of planning for the future, and not fretting for it instead.
Two weeks of optimism. Two weeks of happiness.
That’s all I got.

It took me 16 months after applying to get my ESA and PIP approved, the latter through a gruelling appeals process. It took another 5 months to convince the DWP that I was eligible for Severe Disability Premium so I could afford to pay for my own care. That fight took more energy than I thought I could ever muster; it could have mentally broken anyone, even if, like me, they didn’t already have serious mental health problems.

Then on Monday I got a letter. The brown envelope.
My rate of ESA is changing in December. Dropping drastically.
A phone call cleared it up:
I am being reassessed for PIP before December 17th, which Severe Disability Premium relies upon me receiving. So they will be taking it away pre-emptively, because they’re so confident they won’t need to reinstate it when I fail to cling onto the desperately needed PIP points. (It’s not even worth noting that my illness is incurable and progressive, is it?)

And just like that, my brief respite is over. My week has been punctuated with crying fits, temper, feelings of hopelessness. I am so scared that the remaining seven months of this year will go much the same as those sixteen limbo months, full of dread, apprehension, self-loathing and despair. I would have dearly loved a longer period of time without this hanging over me.

One week ago I was starting to prepare for the accessible-home-hunt, as things in my family home (which I was only ever supposed to be in very temporarily) are deteriorating. Now I can’t do it- not if there’s a chance I’ll lose PIP, and the Severe Disablement Premium with it. If that happens I’d have to move out again and back to here and that would take more energy and self-esteem than I could ever afford to give.

The Problem With Money Policing

05 Tuesday Apr 2016

Posted by in Blog, Disability, DWP

≈ 5 Comments

Tags

, , , , ,

When I deactivated my Ask.fm account over a year ago, in the face of multiple unpleasant messages (messages! not even questions!), I had naively assumed that the anonymous abuse would stop. I guess I forgot I had a blog.
There was the usual stuff about being fat, ugly, faking my disability yada yada, but in the blog comments there is also something quite specific to people who rely on state support to get by: money policing.

People who claim benefits are frequently subjected to scrutiny from the general public about where “their” (the taxpayer’s) money is going. Just look at comments on certain newspaper websites (or don’t, please don’t): any article about a family on benefits will have reams of comments underneath policing all aspects of their life from the flatscreen television to what they got their kids for Christmas, or their new-looking trainers, and whether the parents smoke or not. No one seems to point out that it’s more than a little difficult to get a cathode ray TV these days (never mind the fact that there’s no analog network any more), or that  these “luxury” items are often purchased on credit, or with the help of an unscrupulous doorstep loan company.  It’s not proof that benefits are too generous, it’s proof that even families in poverty want their kids to be happy on Christmas morning despite the cost, or to have the same as their more well-off peers. And the smoking? This seems to propel the commenters into an authoritarian frenzy; pre-paid “benefits cards” are a popular suggestion, redeemable only at supermarkets for “worthy” goods. Can you even imagine the exploitation possible here? Will one lucky supermarket chain will be chosen for the DWP’s partnership? What happens if a claimant is vegan, or coeliac, or doesn’t live near a supermarket, or is disabled and relies on home delivery (because I bet they wouldn’t let you use them on Ocado)? Not to mention the other things that people need aside from food: clothes, replacing broken appliances, kids’ toys….are tampons too much of a luxury? What about medicine? The bus fare TO the supermarket?

This brings us back to the problem of the public deciding what is a “worthy” use of “their” money. A cheque sent by my gran when I went away to university specifically had “not for raves” written on the back, but benefits aren’t a benevolent gift, they’re a payment that doesn’t depend on kindness but on eligibility. Once that money is paid, it belongs to the person who holds it in their account. But that doesn’t seem to stop members of the public weighing in what should and should not be done with it.
My luxury purchase (bought entirely with “taxpayers’ money”) will be a powerchair. A brand new powerchair because it’s the only one that will fit into the flat without removing the door-frame (and I’m definitely not allowed to do that). I had most of the money from a benefits backpayment but I needed help to raise the last quarter, so I set up a GoFundMe page (now closed, I met my target within 2 weeks).
It’s then that I realised someone was either on my Twitter or Facebook scrutinising it for things to complain at me about.

blogcomment0

Despite the accusation, I know I am not in poverty – not any more. Before January I was living well below the poverty line and had been for almost 2 years. Before I was approved for a travel concession I would exacerbate my condition by walking instead of taking the bus, so I could afford food. My own mother kicked me out because I couldn’t afford the tiny amount of rent she charged me (maybe I should have skipped the food?). I am well aware of how lucky I am to have a stable financial situation now, but the commenter seems to be shaming me for spending the money I now have.
It feels very strange to have to point out that seeing “The Manics” (twice) is costing me under 1/100th of the amount I put aside for the powerchair. That is an amount of money I can afford. I couldn’t (and still can’t) afford the target I set on the fundraiser within the time that I need the chair by. I don’t get how that’s hard to understand.
The more I catch myself justifying my spending the more I get angry with both myself for feeling like I NEED to justify it to the anonymous arseholes, and with the scrutiny that benefit claimants get over their spending in general.
Or even their future plans:

blogcomment1
(no I’m not writing my own abusive comments – they just seem to lack imagination)

blogcomment

Heaven forbid I leave my flat and go out further than the nearest coffee shop, right? Oh, what? Coffee’s a luxury?
THIS is the problem with money policing. It starts with “no frivolities” and ends with “the bare essentials only”. Benefits don’t work that way. The DWP doesn’t calculate the bare minimum each individual needs to survive and award them not a penny more (though you could be forgiven for thinking that’s how it works). I realise I’m pretty lucky for someone in my situation. I’m not being charged for household bills, which means I have extra spending money (though I’ll happily forgo this in order to live somewhere actually accessible). I also have a part-time job under the permitted work scheme which the commenter doesn’t seem to have noticed me “regularly posting” about (which I do post about, because man I love grammar).They also haven’t noticed that before my benefits came in, after 18 months of waiting then the stress of an appeal, I didn’t do many of these things unless it was through my partners’ or friends’ generosity. Now I do have the benefits, I’m being policed over how I spend the money I am entitled to. I can’t win. This blog post might as well be called “The Pointlessness of Justifying Yourself to People”, and I might as well end by  saying, loudly:

What I spend my money on is my business and no one else’s. People who aren’t on benefits don’t have to put up with this money policing crap and neither should we. 

 

Malevolent Incompetence: a short post about the DWP.

24 Tuesday Nov 2015

Posted by in Blog, Disability, DWP

≈ Leave a comment

Tags

, , , , , ,

“It’s not enough that they’re cruel, they’re also incompetent with it and that makes it so much worse.”

My ex said that about the DWP sometime last year. I can’t remember over what, which is a worrying sign of how often they cause their victims stress and upset.
I’m still in pre-appeal limbo as far as PIP is concerned (occasionally sending them new and relevant letters from docs/specialists). But now my WCA has come up, and I’m having to try and deal with both benefits being “tested” at once.

My Work Capability Assessment was scheduled for the afternoon of the 11th of November. This didn’t happen. As soon as I got the letter with the date of my assessment, I called to request transport as it would be just too sensible for the assessment centre to be near an accessible station. I was told I needed a doctor’s letter for this. Fine. It took about a week and a half to secure an appointment, get the letter written up, and have it faxed over to the DWP, and then I called to see if it had been received. It had, but then I was told for the first time “We need three weeks to process it”. BUT I ONLY RECEIVED THE LETTER THREE WEEKS BEFORE THE APPOINTMENT DATE! They said they’d try to prioritise it, but the day before my assessment I was told that “it still hasn’t been checked by a medical professional”. That’s right, it requires a “medical professional” to read a letter stating that I can’t walk safely right now and can’t use stations without level access therefore can I please have a taxi to the assessment. My appointment was cancelled with authority, and I spent the day of the 11th a mess, full of anxiety and adrenaline built up for nothing, with no outlet, panicking that my new WCA and PIP appeal would be on the same day and both would therefore be cancelled. (DWP stress does interesting things to anxiety disorders.)

The DWP employee on the phone had been uncharacteristically reassuring, promising to phone me back personally when he heard any news of my rescheduled appointment. Any reassurance quickly dissipated from my mood when I got a form two swift and efficient days after my assessment should have been (how come they’re always quick with the bad things and not the things we need?). The form had questions (here paraphrased but not exaggerated): 1. Why didn’t you attend the assessment we had prearranged either by letter or by phone with you? 2. Why did you not let us know you could not attend your assessment as soon as you found out that you could not go?
The accusatory tone of the questions sent me into a spin. I felt like even though I could write “My assessment was cancelled by someone in your office on 10/11 because appropriate transport  could not be arranged in time”, the wording still made it sound like it was my fault, and as one of thousands of claimants flailing around in the huge system designed to fuck them over, why would they believe me? Anxiety through the roof.
That afternoon I got a phone call from Frank, the kind DWP employee. As promised, he had called to check up on me and update me on the situation. I told him about the form, and he told me it was an automated letter, in this case an error and not to send it back. Okay then, I had a minor meltdown over nothing.  Also would I like a normal taxi, or a wheelchair accessible one?

Another few days passed and Frank called again to tell me that I would have to be seen at Marylebone, not Neasden. But doesn’t Neasden have a lift? “Yes, but it’s policy that wheelchair users have to be seen on the ground floor.” Ah, so I’m guessing there’s a lift at Neasden, but no safety plan should wheelchair users need to be evacuated.

And now I have another WCA date. December 14th. I’m calling on the 7th to make sure there’s transport in place, and I’m calling Frank directly if not.

(Postscript: They forgot to send the taxi, any taxi. When a last minute taxi did arrive, it wasn’t a wheelchair accessible one either. Depressingly predictable.)

Zero Points – the PIP nightmare continues

28 Tuesday Apr 2015

Posted by in Blog, Disability

≈ 4 Comments

Tags

, ,

Zero points. When I first read the decision letter, I honestly laughed. Then I tried not to cry, and now I’m stuck in righteous anger mode (so apologies if this post is somewhat disjointed). But anger makes me productive, motivated.
Let me tell you how I got here….

It took me weeks to get my PIP assessment sorted from the time I was first offered one in March (after applying in August 2014). Initially they sent me an appointment for 8am – in Chelmsford. Since I’m in North London, this would have required me to get up at 4am to ensure I could take medication, get dressed, and leave the house in time to get the nightbus to the station for the first train. It wasn’t going to happen. I was allowed to rearrange the appointment for a more local centre, but missed it by 15 minutes – a broken lift at the “accessible” nearby tube station and a hellishly long walk to the assessment centre after already having done the station stairs on a bad pain day conspired against me. In the end I had to get Atos involved on my behalf when the DWP cancelled my claim, as Atos had promised me when I called them in tears from the assessment centre that they would send me another appointment. You’re only meant to be allowed one rearrangement, you see, and moving an appointment from another city entirely to one it takes under 4 hours to get to is counted as such.

The assessment, when I finally had it, left me feeling cautiously optimistic. The assessor was a nurse who’d specialised in chronic pain and had actually heard of Ehlers-Danlos Syndrome. He said he wouldn’t put me through the physical examination because he knew how painful the condition was.
Reading the decision letter over I can see now why there was caution in that mood:

“You said that you have difficulties with preparing food, taking nutrition, therapy or monitoring a health condition, washing and bathing, dressing and undressing, communicating verbally and engaging with others face to face. I have decided you can manage these activities unaided.“
It’s just a bit of a kick in the teeth isn’t it? I sat facing the assessor and told him that I’d managed to have a grand total of one bath and one shower completely unsupervised since January, meaning I often go for most of the week without a proper wash (ask me about that time I had to have my new bf to supervise me in the bath before we’d even seen each other naked!), and that I can only cook if someone is there to make sure I don’t fall (not to mention the issues carrying pans, chopping veg, opening jars etc). If I can’t get up on bad days, then I can’t get food, therefore I can’t take my medication. As for getting dressed? My partners learn quickly how to put tights on misbehaving legs. If I’m not leaving the house I just DON’T get dressed. It saves pain and energy.
“I have decided you can stand and then move more than 200 metres”
This was written without actually seeing me walk further than the short distance to the assessment room, on crutches, in pain. That is how I walk: in pain. He didn’t even want to see the letters I brought with me from the GP. Somehow I thought that was a positive thing.

So the next step is to ask for a Mandatory Reconsideration, and call a local disability service for more advice. I’ve checked with a few disability activists I know, and apparently being awarded Zero Points is fairly common – a tactic they use to discourage appeal (after all, it’s not even CLOSE to the minimum number of points needed for any award). It just disgusts me that they do this. I’m angry, and anger makes me want to fight it. Many other people in my situation may get depressed, disconsolate, feel helpless and abandoned. They do not fight. I’m angry for them. This system is incredibly broken if it thinks that only those who are strong enough to fight the decision made against them “deserve” help.

A bad poem for the upcoming General Election.

19 Thursday Mar 2015

Posted by in Poetry

≈ Leave a comment

Tags

, ,

On a cold rainy night I was lounging at home
With a Pinot, and Tivo, and porn on my phone
When in burst the skipper all flustered and stressed
By expenses and bankers and all of that mess
So I said to my boss, turning off Geordie Shore,
“Dave, have you thought about blaming the poor?”

“They’re already downtrodden, they’ve nothing to lose
We’ll say they waste money on gambling and booze
They have too many children and live far too long
They’re shirkers and scroungers, it’s morally wrong!
Supporting them goes against what we stand for,
So let’s have a toast to scapegoating the poor!”

“My god!” exclaimed Dave, “You’re really spot on!
If we just shift the blame then our worries are gone
A few skewed statistics are all that we need
So the voters ignore our corruption and greed
I’ve got friends in high places with morals on the floor
They’re sure to help us with exploiting the poor.”

So this election when you cast your vote
Just think about who got you into this boat
Not us, Dave and Gideon, we care for your rights
We feel so acutely your middle-class plights
It’s the ones who take most yet keep asking for more
Yes, we sure did a great job of blaming the poor.

n.a.j.Grant 2015