At the end of April, I published a blog post here about the nightmare my husband (and, by extension, myself) was facing. At the start of May, I wrote an update. Well, it’s August now, and we’re still facing the Same. Damn. Thing. It’s exhausting just thinking about it, but let me give you a recap:

When I met Steve, two and half years ago, he was already ill. He was diagnosed with diabetes maybe four years ago. Six months after that, he collapsed, was in a coma for a bit, and woke up to find he had the bonus condition of seizures. Fatigue came along for the ride, happy in its task of exacerbating his existing mental health issues (anxiety and depression) – I speak of all this with levity, holding fast to the old adage, “If you didn’t laugh, you’d cry.”

About three years ago, Steve moved back home with his parents and got a new job. He collapsed again, while at work, and had to be removed in an ambulance. There was just no way he could go back, so he did the obvious thing of applying for welfare. (I hate the word ‘benefits’ and the connotations it conjures up, but that’s a different rant for a different day.)

So, three years ago (give or take), he applied for Employment Support Allowance (ESA), which he was awarded. A few months later – around the time we met, I think (it can be so difficult keeping track of all these events, so bear with me if I’ve approximated some of them) – the government brought him in for an assessment and decided that he, in fact, wasn’t deserving of getting financial help. He wasn’t told that for a few months, though. We were happily falling in love, on top of the world, not knowing that a shit-storm was brewing.

Eventually, when they told him his ESA claim was denied, Steve had to enter the appeals process. Said process dragged on and on and, in the meantime, we moved in together. We informed the Social Security Agency (SSA) about the move and they stopped Steve’s payments instantly. (To that point, he had been getting some payments at a lower rate, while the appeal was ongoing.) I had been in receipt of Working Tax Credit to help subsidize my meagre wages from being self-employed, but lost those at the same time as well as being forced to reduce my working hours because of eligibility requirements on Steve’s claim, now we were a joint household.

I had to send off all of my financial records, both personal and business, going back years. And we had to wait, and wait.

For six months, we had literally no money to live on beyond what family could help us with, which was just enough to cover food. (Rent, thankfully, was covered by housing benefit.) Steve’s ESA tribunal finally came and he was in and out in two minutes – as soon as the doctor heard he had seizures, he approved Steve’s claim without needing to hear any more.

Despite that, though, it still took a few weeks for the money to start coming in again. They had to process all of the paperwork they’d gotten from me, twice, apparently. But it all got sorted out in the end. Ongoing payments were reinstated and we got a lump-sum of back payments, too.

Happy days. All was well. At least, for a while – about another six months. At the end of the six-month happy period, while we were busy planning our wedding, Steve was told to come in for another assessment. We went together and answered all of the questions, again and again.

We went home, time rolled on some more, and we heard nothing. All was still fine, we assumed. We’d passed, hooray!

Except, yeah… no. No news was not good news, it was just a case of the SSA taking forever to reply to us again. A letter arrived one day – I think this was just before the wedding (like I said, there has been a lot of letters; almost too many to keep track of) – to say that Steve had once again been found not sick enough to claim.

We couldn’t believe it. Simply could not believe we were being told this after everything.

We restarted the appeals process, put in a claim for Disability Living Allowance [hoping that, if we got it, we wouldn’t struggle so much each time hitches with our ESA claim happened*], and we got married.

After a few weeks, the SSA again decided to put Steve back on lower-rate ESA payments while his appeal was being looked at. In the meantime, his DLA claim was considered and they decided not to award it. So we started an appeal on that, too.

At one point during all this, we received the report from Steve’s second ESA assessment and were horrified to learn that A – the person who “assessed” Steve was not the same person who wrote the report, or the same person who made the decision based on said report. Also, B – everything in the report, all of Steve’s answers, had been twisted as they were passed down in the series of Chinese whispers.

Steve had a DLA tribunal and lost, but we were told not to give up. This point in the story, I think, was when I penned the blog post mentioned at the start of this one. We were waiting for an ESA tribunal date and waiting for a report about the DLA tribunal decision to come back before we could challenge it.

The ESA date came, and we went, and we were sent away again without ever being seen. Apparently they didn’t have the report from the first round of appeals, so they’d have to put it on hold until they did.

I said in my first post on this topic that I almost didn’t want Steve’s ESA tribunal to come, as I feared it might bring bad news. Well, as it turned out, it being postponed was it’s own fresh kind of hell. Initially, I looked at it like a stay of execution, but Steve saw it as having his time in purgatory extended. Thinking on it now, I think he was closer to the mark. The dragged-out process was just dragging itself out even further, not offering any kind of relief at all.

Another thing Steve was waiting on, all this time, was a neurology appointment. That, at least, finally came. And that was positive (thank god!). The consultant is convinced Steve has this thing called Non-Epileptic Attack Disorder. Steve calls it being allergic to stupid, but it’s essentially having stress levels so high that, when any little thing goes wrong, his body completely shuts down in response, having a panic-induced seizure because it hasn’t found any other way of coping. Any amount of straw can break the camel’s back, so you can imagine what the stress of this of this whole thing has been doing to him. (I’m sure anybody still reading this is feeling quite stressed on his behalf by now, too. I do hope you’ll forgive me as I carry on.)

I’ll fast forward to now. We have a new date for Steve’s ESA tribunal, coming up at the end of the month, and our DLA case has been taken on by the Law Centre NI. We got a letter from them just this morning confirming that they are our representative and outlining the next steps of the process.

Get this – we have to wait for a reply from the SSA, submit some more papers, and then do some more waiting. We’re appealing to the ombudsman and he has a year to get back to us. ONE. YEAR! After that, if we’re successful, the thing isn’t resolved. Oh, no, our prize is that we get a new tribunal.

All in all, we’ve been fighting for literal years, and it could easily go on another few. It’s beyond belief. All we want is to live our lives. Steve wants the time to recover that having this money would afford him, but the system is making him worse. Not giving him a chance to heal.

…I’m trying to come up with some way to end this post but, the point is, there’s no conclusion. Not yet.

Just, thank you for reading, I guess. Writing all of this down has helped me get it all out of my head, if nothing else. Steve, unfortunately, is not so lucky.

*We were told that, legally, the SSA can call Steve in for an assessment and repeat this process every year. We were also told that, in a lot of cases, they exercise this right.