Farewell, Brown Envelope…

That’s that then. On Friday I posted off my last DLA renewal. Here’s hoping, eh?

It took me the better part of a week and cost me about six or seven seizures, not counting the one I had on the way back from posting the damn thing. That last one turned a five minute walk into almost two hours, and cost me a few pounds in impulse purchases made when I wasn’t fully there. Having a seizure is like being drunk. You’re not fully in control of your body, even when you can walk and talk. And that side of things can last for a good hour or so either side.

In either case, Friday was a write off for me. I came home and I was out of it for most of the remainder. Had a nightmare that night as well. I guess I can’t prove causality on that one, but it’s an interesting coincidence.

I had a fairly large seizure yesterday too, and another this morning. Yesterday’s involved falling off my computer chair and landing head first on the floor. I jarred my left knee, and caught my right foot on one of the chair’s wheely-feet. Both still hurt this morning, along with various other ouches. And then in this morning’s seizure I’ve jarred my left shoulder.

For such a tiny mark, my foot still hurts
one heck of a lot 

In essence, everything hurts, to a greater or lesser degree.

Is this my life anyway? Well, kinda. But the severity of the seizures and how close together they are (three “big ‘uns” in three consecutive days, plus auras on the side) is striking. And that’s *after* the form sat on my worktop for three days, complete and envelope’d, just waiting until I had a chance to post it.

It was demeaning, and horrifying, to list in detail all the things I can’t do. All the dangers I can pose to myself and to O&M. All the measures I put in place to protect my family seem so frail at times. I can “manage” (at the cost of regularly injuring myself), but I take for granted having that extra money there to buy takeaway when it’s not safe for me to cook and I’ve already used my “emergency ready meal” from the freezer. Or if I have no food because I couldn’t get out to buy it.

I try to cover up the fact that there are times I will lie on the floor in the kitchen and my children will come and stand watching me for a minute before they get bored and go and play. I downplay it to friends: “Oh, I’m fine; the children are as good as gold, they know what to do.”

I don’t think they really know what to do at all. It’s normal for them, they aren’t scared. But they do poke me, or climb on me, or fail to realise I’m having a seizure. They tell me to get up, ask me why I’m lying on the floor. (Sometimes they get rather cross that I won’t fetch them drinks etc.)

I gloss over those aspects on a day-to-day basis. One of the other mums has authority to collect my son from school if I don’t turn up, so seizures at pick-up time can be resolved, but other than that I do all I can to not make concessions. I’m a fighter. Well. You have to be, and I’m lucky enough to come from a family of women who are stubborn as all hell anyway. I still hold that faint hope somewhere that one day I’ll get my driving license back, and if that’s not a faint hope in reality, I don’t know what else is.

I’m a writer, I make up worlds, so my most common coping mechanism is to pretend there’s nothing wrong with me all the time I can. I take risks. Last week I went to London for the evening. I spent the next day exhausted and had seizures as a result, but at least I had my fun night out.

And then, there I was, confronted with that God-forsaken form and an instruction to list, in detail, all the things I can’t do. All the inhibitions on my life, all the ways that epilepsy gives me the finger on a regular basis. There’s quite a few. Of the many sections, I think there were four or five, maybe six, that I could leave blank. I probably could have said more. I certainly would have said more, had I lots of consultation notes to hand in, but as it happens there’s no access to specialist support here, so I don’t have any. I did at least get to point that one out.

And now the wait. Fingers crossed I “pass”, eh? Because I still need that DLA. Whether I meet the increasingly stringent criteria or not won’t change the fact that most days, the longest I spend out of the house is an hour. In term time. Taking my son to school and picking him up.

And now that M is 3, I somehow have to start volunteering when term starts. Good old ESA, tailor-made to stretch me to the limit. Let’s just hope it doesn’t make my seizures worse, eh? Maybe double up on those crossed fingers. I might need the extra luck.


ESAendgame and Me.

So, I’m hauling myself back from the shadowy realms of the dead blog god’s domain. Not just for epilepsy this time either, though that is why I started this little space. Today though, I want to talk about a bigger issue.  A wider one which affects hundreds of thousands of people up and down the country and has led to hardship, despair, fear and even death. I’m going to be as impartial as I can in this blog despite that though, and lay out just what the system is that people are protesting.

For a long time now, I have been a recipient of Employment and Support Allowance, or ESA as I will refer to it from now on. This is the benefit that replaced the old Incapacity Benefit, and is a benefit for people who are too sick or disabled to go on Jobseekers Allowance.

That point is worth repeating. This is a benefit for people whose health prevents them from working as an able-bodied or fit person can. Obviously, this is a wide ranging bracket, so ESA is split into two groups. The “Support Group” is for people who are incapable of any kind of work, and who are highly unlikely to ever be able to. The other group is the “Work Related Activity Group” (WRAG), for people who probably could work, or whose health condition may not be permanent, but still, they’re not fit or able-bodied enough to look for a conventional job as would be required by Jobseekers Allowance claimants.

People in the WRAG (such as myself) are encouraged to participate in “work related activity” such as training programmes, voluntary work or work focused interviews – some of which are mandatory unless you are a lone parent with younger children.

By far the biggest hurdle people face, however, is getting placed into a group and then staying there. Claiming ESA is easy enough, at first. You go into the assessment phase and have to provide notes from your GP stating that you are not fit to work. And if your GP is willing to state that, then chances are, you aren’t. Because a doctor that knows you and your medical history (and all the back and forth between any specialists you see) can make that judgement, and is hardly going to lie. I see my GP a lot and he recognises me when I come in, but I can’t for the life of me imagine him or any other GP committing fraud on mine or anyone else’s behalf.*

However. When you apply for ESA, it’s not just a matter of providing doctor’s notes. You also get put on the list for a “Work Capability Assessment” or WCA. This is an interview process outsourced to a company called ATOS, wherein a “doctor” who has never met you before over the course of one interview decides whether or not you are as sick as you (and your GP) say you are. This would be problematic enough on its own, but ATOS has a track record for getting the decision wrong. (Note: that article is two years old and yet ATOS are still in charge of WCAs)

Terminally ill cancer patients have been found fit to work. People with severe epileptic seizures have been found fit to work only to die a few months later from those same seizures. Profoundly sick and disabled people have been left destitute, forced to appeal decisions which took away their only income, and 40% of those appeals against ATOS are being upheld. 16% of ATOS’s decisions overall are being found to be incorrect.

The principle behind ESA – to support the sick and disabled who cannot work, and provide the correct assistance to those who can work to help them find employment – is one that few disagree with. People want to work. I want to work. But I also don’t want to go through the stress and fear of waiting for a letter to arrive on the doorstep telling me that a stranger I have never met has decided that I don’t need that extra support.

WCAs are repeated. The “brown envelope” that comes through the door periodically can re-summon you to display your incapacities, or demand that you fill out an exceedingly long form with tickbox options to display how you are sick or disabled. This side of things is the other problem with ESA. Sickness and disability does not fall into neat little tickboxes. Yes, some people are demonstrably disabled or sick. Blindness, cancer, use of a wheelchair, the lack of motor control to pick up small items, these are all tangible ways in which some people can “prove” they are disabled.

What, then, about those with learning difficulties – those who spend their lives trying to appear normal, only to be forced to tell a stranger all the cannot do; those with autism or aspergers who are severely traumatised by having to talk to a person they have never met; those with mental health issues whose health rapidly deteriorates from the stress and fear of having to prove themselves and the prospect of losing everything if they can’t; those with conditions which vary, such as ME or fibromyalgia, with few “tickbox-worthy” symptoms but whose lives are dominated by these problems?

The answer is that many of them are found “fit to work” and shunted onto Jobseeker’s Allowance – only to be told by the jobcentre that they are too sick to work and therefore cannot claim that benefit either.

This is a system which is deeply and inherently flawed. It was flawed from the outset, too, because it was designed to save money, to reduce the welfare bill. Let me direct you to my asterix point below, and that 0.5% fraud rate. The only way to reduce the cost when there is a remarkably low fraud rate on a particular benefit is to take said benefit away from people who are entitled to it. This is what has happened. ESA has been taken away from deserving people so as to reduce the welfare bill. And as a direct result, people have died.

This is where the ESAendgame campaign is coming in. Such a system, which knowingly lets down society’s most vulnerable people, has to change. Has to be replaced with a system which supports and works with them, instead of against them. And to do that, we need everyone to work together, to stand up and make themselves heard, to say “Not In My Name”, and demand that change comes. Now.

*As it happens, the proportion of ESA and DLA claims which are fraudulent is around 0.5%

Waiting Makes Me Think More.

The waiting game is telling on me now. It’s so frustrating to go week after week with the same problems, the same hazards to my help, and know that all I can do is sit tight and carry on as I am, waiting for the appointment where I might start to get some help. It’s made worse by the fact I don’t particularly expect that appointment to change anything overnight for me. Apart from surgery (which isn’t an option for me) nothing can change your epilepsy overnight. Certainly not in a good way, at any rate.

What’s possibly the most frustrating thing is how my health directly impacts how my whole family lives. Because I cannot work due to my epilepsy, it is also not safe for me to be at home alone with O and M. That means that W cannot work either. Well, okay, he does work. He gets a princely £55 a week for working 24/7 as my carer. Thanks, The Government. That’ll keep us going.

We survive because of the welfare state. Housing Benefit, Child Tax Credits, Child Benefits, DLA and ESA, for which I am in the “Limited Capacity to Work” category. Apparently ATOS thinks there is something I can do, and okay, at the time I had the interview there was. It’s just that my health has gotten a lot worse since then but I can’t face the additional health interviews which would result from me telling them. Likewise, I should probably have informed the department in charge of the DLA, but I figure that not telling them things are worse is better than telling them things are worse, and then having to go through all the hassle again when they fix it and put me back where I was when I started getting DLA in the first place. All that paperwork really stresses me out, and is only likely to make me have more seizures anyway.

So we are stuck. We started renting our house when we were both working and I was pregnant with O. So it’s a two-bedroom house, quite small. Now we have M as well, and they will have to share a room soon; M currently has her cot squeezed in next to our bed. Neither situation is ideal. O is a heavy sleeper, but still wakes in the night, and makes noise when he does. M sleeps through, but gets woken by noise and still doesn’t settle herself back to sleep. When she wakes, it’s for at least half an hour. Nor O’s room a good size and shape for two children and their things.

We can’t move, either. Now that we receive that nice list of benefits, most of the landlords and agencies around here don’t want to know. And I’m not well enough to trawl around them all proving that I’m a nice person really, not one of those nasty “benefit cheats” that everyone knows cheat their landlords and trash houses, while filling them with large televisions. The negative stereotyping everywhere gets me down, frequently.

Still, I refuse to be ashamed of my life. I refuse to hide from the fact that no, I am not working, and yes, W is at home during the day as well, since he is a full-time carer earning a fraction of the minimum wage. Personally, I don’t think being ill or disabled is something you should have to be ashamed of. And, given the amount of stress and pressure that W is under, and the absence of any real time off he has, I think people who are carers should be lauded from here to eternity, and not suffer the implication that the people they look after are feckless scroungers.

I find myself defiantly holding my head high. Something completely beyond my control has put me in this position, and I refuse to allow it to beat me. I will get better, however long it takes. I will  find a job somewhere, and I will not let it crush my spirit.

Benefit Cuts.

Honestly, I don’t know what to make of all the cuts in the welfare budget yet. So much of it is subject to speculation, or relies upon medical assessments that have not yet been rolled out.

What I do know, however, is that I have no security for the future. The next few years rely on a wing and a prayer, and the hope that some arbitrary figure will not decide that I am no longer disabled because I don’t look it, or because the government can no longer afford for me to be.

What is “disabled”, anyway? I don’t feel it, most of the time, but whenever I fall to the ground involuntarily, and start twitching and shaking, or stop breathing, my opinion changes pretty rapidly. I guess not being able to look after your own children alone is pretty disabled. I’m certainly disabled enough to not be permitted a driving license, too, and nor can I go skydiving, abseiling, rock-climbing, scuba diving, or anything else which requires you to be alert at all times.

My son is two years old and I have never bathed him without supervision. I won’t be able to until he is able to look after himself, and the same goes for his little sister. I will never drive my children to their friends’ houses, or take them swimming by myself, because it’s unsafe. I can’t even have a bath myself unless someone else (preferabbly W) is in the house with me.

That’s not to say I don’t take risks. Just that, to me, taking a risk is leaving the house by myself, and being alone for an hour or two.

I’ve gone a little off-topic here, but maybe that’s because the whole subject is off-topic. Yes, we all know that (to a greater or lesser degree depending on who you talk to) the UK is in serious financial difficulty. But taking money from the poor and needy, who have so little to give, while failing to adequately chase those who try to duck out of paying their fair share is equally off-topic. I know you can’t always trust what you read, and subjectivity abounds when politics rears its ugly head, but when huge companies avoid paying several billions in tax from year to year and are allowed to get away with it, it seems to me that you’re missing the boat. If that figure of £6 billion which Vodaphone alone is reported to have avoided paying is correct, then the money taken from the sick need not have been cut at all.