Oh momma dear, we're not the fortunate ones. And girls, they wanna have fun
Girls Just Want To Have Fun - Cyndi Lauper
Your dose is nearly over. This is like the bit where the IV machine goes “beep beep” to warn you you’ve got five minutes left, only the nurses are always too busy to disarm it, so it just “beep beep”s for those five minutes *. Just be warned… the last five minutes can seem to take an eternity. My steroidal state could write, at length, about the range of beeping patterns emitted by machines (and some associated madmories), but I’ll show restraint, and stick to important stuff. This is Part Three of this little sequence, and - for now - that’ll be all. We’ll take your cannula out, and you can go. You’re not feeling light headed are you? If you feel at all unwell, call us immediately.
If I “need prompting to take nutrition” (which I do, but it’s a relatively trivial part of my condition, and it doesn’t come with a financial cost, just awareness and monitoring by Marisa), I get 4 points toward my “daily care” Personal Independence Payments (PIP) assessment (need total of 8 points to qualify). Whereas if I can “walk 50 metres” I automatically, get 0 points for the “mobility” part of PIP. Yet getting PIP Mobility is a requirement of applying for a blue badge (that’s a disabled parking permit). So, 50m equals no blue badge, but “you need to take another protein shake Alex” means I’m halfway there to having daily care needs. This is by no means the only absurdity of the benefits system. I ignored benefit claims almost entirely for most of the time I’ve been ill. I continued to work. I’m not hard up. I don’t self-identify as a claimant. But I increasingly recognise that my myeloma has had impacts. My ability to work is severely curtailed: “limited capacity” in Department of Work and Pensions (DWP) jargon. I need practical support such as a blue badge due to mobility problems. I’m even facing up (slowly - coming out of ICU has been the trigger for this), that my mental health suffers from myeloma too. Not only do I suffer anxiety now, but I’ve suffered social anxiety for the entire time since my diagnosis. I avoid situations where I might have to meet new people who might ask me
“So, what do you do?”
If you want one simple action towards being a nicer person, find more inclusive ways of breaking the ice, please. Some of us can’t “do”. But before we digress too far…
I was advised by a social worker that I should make a PIP application, because it would help if I could answer “Yes” to the question “Do you get PIP Mobility?”. It’s not the (honestly, very small) sums of money involved that I’m primarily interested in, it’s the recognition of my disability.
Part of the issue for me is the complete inability of the system to understand relapsing/ remitting conditions. I had a long conversation with an advisor at MacMillan/ Citizens Advise about what constitutes a “good day” or a “bad day” for me, how often each occur, and how often they are likely to continue. Not only are these quite hard questions to answer (he called when I was full of steroids. Right now, I think I could climb Everest. Sometime in the next 48 hours I will crash and not even want to get out of bed), but they’re not reflected on the PIP application - so we will have to encode our answers. Basically, can we legitimately claim that “bad days” occur most of the time? (Answer, because it’s true and because it has to be true: Yes.)
A similar issue occurred with the only benefitI I currently receive, Employment and Support Allowance. (ESA). In order to qualify as part of the “Support Group” (the only way I can continue claiming), I must have “limited capacity for work”, be working less than 16 hours a week and earn no more that 16 hours at minimum wage. I just quit my job entirely, because it was too much. I was only working 11 hours anyway and I’d been off sick for most of the last year, so the hours constraint is no issue for me. But, for one month early last year, the DWP was under the misapprehension that I’d exceeded the income threshold by
1p. Some DWP jobsworth [expletive deleted] decided that this meant I no longer had “limited capacity”, stopped my benefit with immediate effect, and entirely cancelled my ESA claim. I kid you not - here’s
my letter in the paper about it, and here’s their letters to me…
A woman phoned me up. This should have been my warning of what was coming, but I was ill at the time (beginning to relapse, it transpires), and maybe didn’t pick up the signals, and anyway, she finished the call by saying she’d come back to me. I was expecting another call. What I got was two letters, dated the same day but posted separately, as though this was a process. One informed me they were reviewing my claim. The other said, having reviewed it, they were cancelling it. Aside from the insult of doing this without properly consulting me, and the fact that they were wrong in their calculation, it’s preposterous to link my earnings in a month to my ongoing “capacity”. Within two months of them cutting my benefit, I was off sick again.
The published information defines earning thresholds weekly, which is in and of itself an implied judgement about the calibre of people who might need support. Weekly pay is traditionally associated with low pay, blue collar work. And that’s who the system thinks benefit claimants are. The problem occurred because I got a monthly payroll payment. “I calculate this by dividing the monthly payment by four”, she explained. “But there’s more than four weeks in a month” I replied. If we’re to be pedantic - and they started it by arguing about 1p - there’s more than 52 weeks in a year, but I never got that far because she simply told me “That’s how I calculate it”, and that was the end of the call. The issue was made worse by conflicting information on the government’s own websites and small print. (The big print turning out marginally more generous than the small print. Quelle surprise.) Some sources said you must earn “less than” the £143 threshold (its higher now, but not in line with inflation), others that you must earn “no more than”. This would be basically academic… as long as no-one was quibbling about 1p. The DWP did, eventually, admit they were wrong and reverse their decision, but only after I had engaged both the appeal process and my MP - though the DWP denied any of those had at all affected their review and reversal. They acknowledged they were wrong, but not precisely how. Was it the calculation or the miscommunicated threshold; the lack of process or the unwarranted extrapolation to assumptions about my capacity? Last time I checked they had done nothing to remedy the inaccurate information online - even though I provided them with screenshots and urls for the sites and pages concerned.
Nor have they defined a monthly limit, which would squeeze out all the ambiguity. But that would probably require political, not just administrative, engagement, and the last I head from the government on benefits, was a promise to step up the surveillance for “sanctions”. It doesn’t sound like the government has any interest in making the system better, just meaner. Perversely, I’d like a system that might enable me to claim less and contribute more. But while government thinks I’m a weekly-earning nobody they presumably have no aspiration for my potential. (To be clear, that “nobody” is my assumption of their pejorative, not my own.) Limited though it may be I am not without potential, but for administrative reasons, I can’t act on it. In truth, the “lucrative employment” bird has probably flown now for me, but there was ten years of my myeloma life where “the system” and I could have had a constructive relationship. I might plausibly have got my recent employer to pay me more per hour, for example, and paid some of it in tax (and they could have tapered my benefit too, if they only had the wherewithal). Fundamentally, one’s per-hour earning potential has sod all (technical term) to do with one’s capacity for work. Nor does, in the short term, being able to work more hours, when the underlying condition is expected to return. Both might be justifications for tapering - or even zeroing - the benefit in the short term, but the system can’t distinguish between these two very different things. It doesn’t understand what a relapsing/ remitting life is like.
They did, in the end, give me the £3,000 they by then owed me. It’s a good thing I wasn’t using that money to buy my kids food. More importantly for me, my ESA claim counts towards National Insurance (NI) contributions. My pension and (more likely) Marisa’s pension is at stake here and that does matter. My issue with benefits, personally, is not so much about the money. I’m not hard up. On the other hand, I can’t work. I’m fortunate that my previous career means I have a reasonable pension, and that I took the decision from the very start not to leave it, legally, in a pension scheme. Twenty years ago I imagined I might want to retire early, and I didn’t want to be forced to wait until 65 to access the “pot”, only then to be forced to buy a poorly geared annuity. As it turns out, I retired not of my own volition, but the intended effect is there - my “pension” is all in savings I can tap as I see fit. And there’s enough of it I can afford to tap some of it now. I can effectively award myself early retirement, and not be too hard up as a consequence. Not everyone living with a relapsing/ remitting disease, a TBIC (keep up), or any other benefit-need that the system hasn’t planned for, is as lucky. If the money counts every week (or month), then being cut adrift for months on end could be a real crisis. No apology, either, of course, from DWP for the hardship their “error” might have caused.
Still, I can downplay my need, but the bottom line is: I can’t work. If/when I could, an hour in my old business would disqualify me from ESA potentially forever. There’s not much incentive to seek a tactical project in the good times on that basis. I’m diverting my energies, as I recuperate, to seeking some voluntary engagement. Will be fun for me; could be a social good; but if we’re just fixated on the money (as DWP appears to be) then it’s lost revenue for HMRC. I’m effectively in a benefit trap. What I’d really like - the benefit system that would reflect my circumstances - would be to be able to work when I could, with my benefit tapered potentially to zero depending on what I earned, but without short term earning being used to judge long term “capacity” and without having my claim cancelled. I’d like the acknowledgement of my mobility need in the long term, even if I don’t deserve support payments in the short term. I think were I ever to get kicked out of ESA Support Group, I’d never be able to persuade them to put me back in. The mere fact that I had, on one occasion, been deemed capable, would mean I would struggle to meet the Support Group entry criterion of it being “unreasonable” to expect that my capacity might in the future return. I’d have to reapply on the basis of short term limited capacity. I could only claim on the “contributions” based route (sick leave for the self employed, in effect), which is how I got in the door last time, but that route only entitles you to six months support, which I’ve already used up. And I’m no longer “contributing” (to NI, they mean. My ESA is my NI contribution, that’s the entire point).
So, in short, Marisa’s pension depends on me never earning more than 16 hours times minimum wage in any single week, now or for the rest of time. Looking holistically at me as a potential earner, and at the condition I live with, that’s obviously a stupid restriction to put me under. I could be more productive, potentially generate tax take for HMRC, be a “contributor”… but only if I’d be willing to sign away, in perpetuity, official acknowledgement of my capacity, and with it, a portion of Marisa’s future pension. And, back to the top, my entitlement to a blue badge will come down to how often I am able to walk 50m. As it happens, I think I’ll be able to say, hand on heart, that much of the week I can’t get out the door, due to feeling shit from side effects, plus fatigue, and that when I do, I’m walking with a stick and severely limited by back pain. That should legitimately meet the criterion, but I’m still struggling with being compelled to tick a “can’t walk 50m” box. Walking was always one of my passions. Myeloma has stolen so much from me. This year it seems to be taking both walking and travelling away from me and I find that very difficult. I don’t really want to be thinking, every time I go to the door, about how often I’ve been out and whether some DWP assessor will try to cancel my PIP claim - and with it my ability to seek support I need. I should be trying to be as active as possible. Yet the system requires me to be physically, as well as economically, inactive. Again, it doesn’t understand relapsing/ remitting conditions. However far I might walk tomorrow, I’ll need driving somewhere soon, where parking will be a problem. That’s what blue badges are for. Or, what if I need to take luggage? I can’t carry anything any distance. Not on the form. No points. Come winter, I might well conclude that buses and trains are unsafe environments for me (infection risk), and be forced to take taxis. That’s a real expense that PIP explicitly exists to support. And I can apply for a “taxi card” entitling me to some discounted fares… but again, only if I can answer “yes” to the question “Do you get PIP Mobility?”
None of these benefits are overly generous. Let me spell them out here (2023-2024 rates). You might be surprised.
ESA Support Group = £128.85 a week
(ESA if you’re only getting it short term, is less = £84.80 a week)
PIP “daily living” = £61.85 a week
PIP “mobility” = £24.45 a week
(PIP has “enhanced” rates of £92.40 & £64.50 but I won’t qualify for those)
Yes, “daily living” pays more than “mobility”, even though the criteria are demonstrably easier. Yes, the 50m boundary is in place to save the government from having to spend £25 a week. Yes, the knock on effect of their penny pinching (and really, I don’t need the money), is to deprive people of the ability to get recognition of their needs. It’s recognition I crave. Even ignoring the intermittency of my particular challenges, do you really only have a mobility issue if you can’t walk 50m?
(There’s a looser 200m boundary but it’s worth fewer points, so with that you’d need to tick other boxes to do with getting confused, needing to be accompanied.)
As far as I’m aware, all other benefits come with means testing. Fair enough, you might say, if you ignore my wider point about status as opposed to mere cash, and about conditions that come and go. Maybe I should have PIP when times are bad, but not when times are good. Except I’ve already been told my PIP application will take anything from four to six months. With a bit of luck I will get it at exactly the moment when I’m most able, and I’ll be desperately emphasising my limitations for fear of being rejected. Perhaps, each time I’m well, I could put in an application, on the off-chance I’ll be crook by the time they get round to assessing it? Or there could, of course, be a better system. But the state of our country’s politics makes me suspect even a change of government won’t lead to any progress in this kind of issue (prove me wrong, Helen Hayes!). And the tories are only interested in portraying people with needs as scroungers and skivers, or, failing that, just as worthless low potential nobodies.
There's such a thing as Carers' Allowance, but Marisa can't claim because she earns too much (it's the old 16 hours minimum wage thing again). The fact that she was recently forced to take a month off, when I came out of hospital, is overlooked. From the government's perspective "care" only has any value at all (£76.75 a week - don't get too excited) if it takes up at least 35 hours of your time every week on an ongoing basis. There must be a million carers in Britain who don't qualify. Now, the right-minded among you (right in the wrong way!) may think this is all a bit take take take. “Where's my benefit?” demands hardly hard up Alex! But the amounts are so small, the needs so great, the criteria so strict, it’s simply a Daily Mail fantasy that anyone is profiting here at the expense of others' hard work. If you live in the UK you’ve been subjected, at some point, to messaging about a “cap” on benefits of £20,000. For a start, that’s not a lot, if you think about it - and the cap went down, while prices go up - but anyway anyone qualifying for “capped” benefit would almost certainly be claiming for housing (we all have to live somewhere) so wouldn’t see most of the money. And if daily living benefit plus housing benefit exceeds £20,000, you can be certain the landlord doesn’t take the hit.
And, before you get too comfortable, because you, like me, aren’t a self identified claimant. Remember, needs tend to just materialise uninvited, whether through illness, redundancy or change in circumstances. Do you know what the savings means testing limit for Universal Credit is? (UC incorporates most other benefits - jobseeking, housing etc.) It’s £6,000. Beyond that whatever UC you might be entitled to would be tapered - on the assumption you’d be drawing down “income” from your savings. If you’ve got £16,000, you’d get nothing. Their definition of savings excludes your home, and anything tied up in a pension scheme, but includes pretty much anything else - they’ll even include your kids savings if they have any, in your total. And no, you can’t deduct mortgage payments or anything - it’s your assets being judged, not income. So no deductibles. I’ll never be eligible because my pension savings are not in a pension scheme. But even so, £16,000 is just one ISA - and I’m sure many in my readership have that much tucked away. Be clear. The benefit system is not for you. You’d be expected to drain down the rainy-day fund, the deposit-to-buy-a-house fund, the support-for-my-kids-in-case-I’m-no-longer-there fund, the buy-a-new-car fund, the family-holidays-are-expensive fund, until your entire assets were less than £16,000 to qualify for any UC support. It’s hard to quantify how much of the population this covers - statistics on assets often include your home; those on savings often ignore ISAs and investments. Maybe a third of UK households would qualify for UC with no tapering. The rest of us would have to burn whatever prospects we’ve earned and saved, only being eligible once we’re skint. I’m not complaining here about means testing, and merely repeating myself (blame the steroids) when I say I’m not really in this for the money. But I do think that’s a staggeringly low bar for support. I suspect a lot of people imagine they’re better supported than they are. I still laugh at the memory of the friend in the park saying to me, early covid lockdown, having just been laid off,
“I can’t live on £100 a week! I’ve got kids!”… apparently oblivious to the fact that I have long been expected to do precisely that. I don’t know how many people think they’d be entitled but aren’t. I bet it’s more than the number of people who give the tories their majority. Ignorance is a wonderful thing!
As a general rule I try to keep Dialm non-political, and I’ve just slagged the tories off repeatedly. But how a society supports those in need is inherently political. In this context I make no excuse. Britain’s “welfare” system is disgusting, and only supported by a combination of ignorance and complacency. Those who know the truth because they live the reality are already diminished voices both through actual circumstances and through political and media denigration. I try, in my little way, to be an exception to that.
That wraps up this weeks updates for Dialm. If you’re wondering about any progress on my complaints about care after discharge from hospital… Nothing better has happened, and I’m in discussions with the hospital about it (fortunately for me I have an “in” to at least get my concerns heard). It’s all quite detailed so would make a long post. But it’s also case specific to me (in a way my gripes about benefits are not), so on that basis I don’t think it justifies me subjecting you to it. The underlying problem - those in most need lack agency and so get disadvantaged - is much the same. If and when I extract a more generalisable conclusion, I may yet post it up.
* In the quest for transparency, I’ll note that my current treatment doesn’t actually involve an IV. But I couldn’t extract much creative prose from the source material of “sitting around for hours on end waiting for a prescription”
