Tag: ESA

Sleepless at the latest precipice on our path – PIP, and hospital

I so want to be asleep right now but my brain’s awake with useless whirring energy. This week has seemed so long already. My partner was admitted into hospital on Monday night after a fall and worrying symptoms. He was “only” in til Tuesday evening and thankfully is now safe at home but more question marks are hanging over his complex health difficulties right now. We feel so lost navigating the way through to get him the treatment he needs and cope with the process.

On top of this we found out today – through a text message he received whilst he was in hospital – that a big chunk of his PIP (a Benefit paid to people with disabilities) has been taken away following a review he had a few weeks ago. No warning, just stopped; just a text message with no details and no support. We are waiting for the letter detailing the decision. It seems crazy as his condition has worsened so much since his last assessment but it was what I feared would happen, because of my own prior experiences with PIP assessments. This is what seems to happen to so many claimants. With this cut, he will lose his car, because he has it through a mobility scheme tied to the component of PIP they’ve taken away from him. We are both dependent on the car to get anywhere. I will now be housebound except for when I can afford door to door taxis as I am too physically disabled to reach the bus stop and can’t manage on and off a bus without help. He will be in a similar situation. I don’t know how we will get to his almost daily hospital appointments. £25 – £30 per day on taxis there and back is impossible on our budget. I don’t know if we will qualify for hospital transport. Thankfully there are a few weeks before the car is taken away. We can appeal the decision on his PIP but I doubt a new decision will be made before we lose the car. His other Benefits may well also be affected because the rates paid are linked to receiving a certain rate of PIP or not.

So at a time when my partner is already under utmost pressure and stress with his physical and mental health, a legal case relating to one of his injuries, anniversaries of painful bereavements and traumas, finances, and multiple problems involving lies and deceit from people we placed trust in (leading to the collapse of several projects that we so hoped would bring stability and security to us and another family member and the apparent loss to waste of hundreds of hours of work) – now this. Now that one bit of security is gone.

It is hard to know how to carry on. It is hard to know where to get the emotional and physical energy to do what we have to do. I don’t know how to act or respond seeing the person I love suffering, hurting, being treated terribly, being let down and abandoned. My brain kicks into gear with the adrenaline in some way and buzzes with lists of what we have to do now, different outcomes and scenarios. But my emotions can’t keep up. Nor does my physical body. Right when my partner most needs me and I most want to be there.

It feels as though we are trying to find our way on a path through a jungle. Each side of us is dense vegetation and tall trees we cannot see through. We work our hardest at following the path, staying on the path, walking onward. We cannot see far ahead as there are always blind bends. Beyond each blind corner we don’t know how the track may twist or split. Even trying to be prepared for each possible eventuality isn’t enough. There’s always a stone, a thick fog, a sudden precipice you couldn’t see. Worse still, sometimes there are gaps in the foliage and you see through to sunlight and in the distance, a view stretching ahead of a safe and beautiful place. You work out the route you need to take on the rocky path you’re on right now, to reach that place, and your steps are a little lighter. Then without warning, a branch bends down from the trees surrounding you, coils round your middle, it drags you high in the air, spinning, crushing you, and then flings you as hard as it can and you fall back into the jungle again. Any sign of the safe place is gone. You find yourself beside another path but you have no idea what path it is; certainly it’s no longer the one you had worked so hard to follow.

It’s hard to keep on getting back on the path and you lose hope that any of the paths really lead out of the jungle. You almost know that the moment you think of the beautiful place, a branch will grab you and fling you as far away as possible from everything that have you hope.

That’s what it feels like. It’s self indulgent to express it but that’s what it feels like. Focusing only on our pain does no good, but that’s what it feels like.

We do still have homes. We do have the chance to appeal this decision. We can choose hope. We can do all we can to save money. We have so much more than many people and our lives are so different together. I can at least be here always, for my partner. We can trust that Jesus is with us, beside us, reaching for our hands.

I just needed to get it out tonight. Thank you for listening.

Ginny xxx

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Constant anticipation of the next error – and consequential disaster: Part #1

I try hard to look for good things to appreciate. I’m trying to counteract my anxiety and overwhelming emotions by looking for the positive, hopeful things that can come from a situation. (It’s something of a DBT technique which I’ll elaborate on in another post.) I’m told I’m not yet very good at finding positive things about myself. I think gradually I’m getting better at seeing positive things in the outside world.

However in some areas it’s hard not to not only feel overwhelmed by both emotions and external negative events and also to expect them.

Benefits is a case in point right now and it has been for years, every single time I’ve needed to claim a Benefit when I haven’t been able to work / haven’t been able to work full time, because of my health.

Today, I received a letter from the Tax Credit Office about an error made in my tax credits earlier this year, when I was working at the department store. I was aware of that mistake. They had incorrectly recorded the income figures I had given them and given me only partial information about eligibility. Consequently they paid me tax credits I wasn’t entitled to. The letter I received today was rather confusing but essentially confirmed that. So far, that wasn’t too bad – I will have to pay back the overpaid money when they ask for it but I already knew that.

Next, I opened two letters from the Housing Benefit Department. The first contained two award notices both almost the same but with completely confusing dates, entitlement and income figures. What’s that about, I wondered. One of them was marked “change in personal circumstances”. What change in circumstances? I haven’t had a change recently. I opened the second letter from Housing Benefits, with a certain sense of foreboding!

Yup, disaster again. The letter told me that the Housing Benefit Department had been informed by the tax office that I am in receipt of working tax credit, therefore I am working and my housing benefit has been suspended until I give them details of my new job and current income.

Oh my days. I assume they have received a copy of the letter I got from Tax Credits. If they took time to actually read the letter, they would have seen it was saying that I am not entitled to tax credits. If they had looked at the dates in the letter (not to mention previous documentation I’ve supplied them and previous discussions I’ve had with them about my receipt of tax credits) they would have seen that it referred to a period earlier this year, not to now. They also know that I am not working – I have given them proof that I am currently in receipt of Employment Support Allowance because I am not working because of my health.

So, my housing benefit has been stopped. I will have to contact my landlord on Monday to explain why the benefits payments have stopped. I will have to contact Housing Benefits and try to prove to them that I am not working. This will probably involve chasing around the tax office and the other oxus involved in my employment support allowance. I have to make a written statement and gather together copy documents from my employment support allowance claim and tax credits. Quite probably I will have to take this in to the housing office, queue for a long time to see someone, which physically I cannot cope with at the moment as I can walk so little. My anxiety has skyrocketed because of the financial problems this suspension in my housing benefit will cause. Worse, from my past experience, once one benefit gets stopped, all the other benefits get stopped too. I am anticipating that I’ll be contacted by the employment support allowance office next week saying they’ve received information I’m working so my benefit has been stopped. Then I’ll have nothing coming in.

This may sound like an exaggeration but it has happened to me and to friends of mine before. And it could all so, so easily have been avoided. How easily the housing benefit office could have seen that the correspondence referred to months ago. How easily they could have checked with the tax office to see if I was working. How easily they could have made a quick phonecall to me or my support worker, if something wasn’t clear or they needed a particular piece of evidence. Wouldn’t this have cost them less, as well as me? The situation would have been resolved in minutes. Instead they have sent out a letter, required a statement, someone has to take copies of this, take copies of documentation, probably see me for an appointment, restart everything, set up payments to my landlord again (God willing!). Even without counting the cost and distress and anxiety caused to me, it is a hive waste of resources and confusion for nothing.

Since I first had to claim Benefits in something like January 2015, I reckon I have been paid the correct amount I was entitled to for a maximum of one month at a time, before the next error or mess-up has occurred and at least one of my Benefits has been cut, stopped or refused incorrectly – and completely avoidably. Last year when I rented as a lodger in a private landlord’s family home, this array of errors left me so very close to being on the street; if it were not for an extremely generous friend who paid my rent one month, I would have been out with nowhere to go. It is hugely fortunate that I now live in a housing association flat where I will not be thrown out immediately if there is a problem with my housing benefit. It is hugely fortunate I have the expertise of my support worker who will help me get this resolved as fast as possible and stop me going to pieces in the meantime. Most people don’t have those two blessings.

I don’t want to complain and whinge and expect money for nothing. I don’t think I deserve other people’s constant support. I could very well have nothing. I need to try to become independent and able to support myself. Support doesn’t come for nothing and I should expect to take responsibility, not have everything handed to me.

I think one thing that makes it so hard is when you have been through every process as well as you can, given all the information asked of you, taken all the steps you can, and despite this everything still crumbles. My experiences over the years tell me as soon as there’s any stability, it gets taken away again through error or miscommunication, despite all your best efforts. And the error seems to have an effect like tumbling dominoes on all the other areas of your life there is any stability. Losing stability has immediate big consequences when you have very little to live on. It also drains all your energy, time and emotional resources, which go into trying to correct the error before disaster point (losing your home, no money for food, etc) rather than leaving you any strength to recover, contribute something to your community in your day to day life, benefit from opportunities that might make your situation better (and even maybe less dependent on social and state support, not that needing it is a bad thing). When you are constantly using all your resources fighting the next mistake and next disaster, trying to ensure that you have the basics you need to get by, in a state of anticipation of the next disaster so you can try to minimise or allow for its impact; when you feel as if you’re being knocked back, kept vulnerable, denied any security, despite your hardest work to set things right; then there is no way you can do more than just get by, in a constant state of strain.

So, I’m wondering what I can change. It seems I cannot change the fact that mistakes constantly occur, despite me trying my hardest to do the best I can for my part and to take steps to pre-empt the problems. I don’t want to feel so spent, trapped, angry, vulnerable and at risk as I do at the moment as a result of the repeated cycle of mistakes.

So, what can I change?

[Part 2 to follow, not that I have any answers yet! Thoughts are most greatly welcome, as ever.]

Ginny xxx