Feeling a bit lost

Life after stroke
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It’s been many years, my one year off after my last job resulted in me seeing the issues I was having, and now it’s been 12 years of not working. For only 4 of those I’ve been on Universal Credit, which has been SUCH a struggle. Meetings every two weeks, them telling me to apply for PIP and Capability to Work (but unable to help with any of it). It was during COVID, so I tried to do Citizens Advice, for the second PIP attempt.

In the end, I’ve had multiple PIP applications rejected (appealled all, all rejected). One of those was with Citizens Advice help, but for the appeal I couldn’t get an appointment in time for the appeal so it was rejected again.

At the same time, applying for “Capacity to work”. All those rejected too. BUT my last attempt I appealled in June/July, and then in the end of Oct I was told I got it! Hurrah!!!

Except… all that it seems to get me, is that instead of having Universal Credit meetings every 2 weeks, from start of Nov my next one is at the end of January.

I guess that’s good, don’t have to go for meetings with a new person every 2 weeks to re-explain it all, but nothing is happening. Then I was told to find out how long the Capability to Work lasts for, so I called them, apparently it’s 2 years. BUT it counts from when I first applied (this time, I presume) so it’s from January 2025 - December 2026. Despite me only “getting” it in the end of Oct 2025.

But now what…. I’ve been told to get PIP, but rejected so many times. I’m waiting for the end of latest doc appointments as they might get me some paperwork to use in the application, so will try again in a few weeks, just wondering is there a point. Should I go via Citizens Advice first, they applied for my PIP that was still rejected. Should I just move to a deserted island somewhere and live in a cave.

I’m liking the cave idea. Noone tell me that’s a bad plan…!

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Universal nightmare, it sounds like. And I have to talk to them on Monday !

Wishing us success in the cave

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@Toonah your experience echoes many ghat have applied for benefits and PIP.

There is a charity called Turn2us that can help with PIP applications. I don’t know if you are on Facebook but there is a group on there that are very helpful. Not sure if thia link will work but if not the group is called UK M.E. & Chronic Illness Benefits Advice Group.

Remember when completing the form you need to look at whether you can do thjngs Safely, Timely (no more than twice as long as the average person), Adequately & reliably/repeatedly.

As an example if you can do something once but by doing it you wouldn’t be able to do it again that day (if you needed to) then you are classed as not being able to do it. Itbis what applies for majority of time (i.e. over 50%).

Don’t give up. Good luck.

Ann

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Toonah, sorry to hear about both your stroke and all the issues you are having with benefits too. I’m not an expert but have both working knowledge and personal experience to draw on. Given the length of time you will most likely be able to try and get monies due to you backdated ( please don’t hold your breath on that) but not sure for how long though.

In terms of two weekly appointments there is the opportunity for your Job-centre+ contact to ask for a work capability assessment or whatever new or local heading this is given which should mean no need to meet for a good time - working experience was yearly of long term issue ( worked with homeless teenagers) PiP or ADP is a minefield in itself but in general UC in itself was created to make claims difficult worked in a pilot test area and worked closely with DWP staff on this all trained differently in the same thing.

Fot my dad we had to go( in Scotland) to a local unemployed workers service to help but that was after me trying my best. As Mrs5K said is try the charities she has mentioned, local churches/foodbanks such as Trussle trust may have someone there who can support you in claiming sometimes even Salvation Army can help or give you some directions locally. When I worked in youth homelessness word got round locally and a few of my team would help local families (made our boss mad which was a bonus too) so community contacts are great too may lead you to a champion. Good luck in all this hope you get what you need.

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I’m attending a tribunal this month for PIP at an actual court with an actual judge, there is actually a jury. I was refused twice, my second application was done by a support worker, still knocked back. What happens at court? Will I need to turn up in shades and a dark coat? Will the paparazzi be there? Will there be for and against protestors outside, waving placards, shouting pippity, pippity pip? Will they sentence me to life in a cave?

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Shwmae Rupert - this is very interesting.

I am pleased you have followed up on this as clearly you feel you are not being treated fairly by the DWP assessors (I am guessing it is the DWP). I must admit I did not know that appeals can include a jury, though I was aware you can go to a judge.

I suspect the questions you ask are humour rather than serious as I expect you have done your homework and are ready to taken on this beast. I believe that if you have taken the trouble to take this as far as you have, the likelihood of it resulting in your desired outcome is high. I say this because I feel I have come to know you and what you stand for and I believe you will get the ruling in your favour.

I am pretty sure you are one step ahead of me on this and I expect you are well prepared for the big day. On the off chance you are not, I happened upon this on the internut and it may be of use to you.

I wish you all the best and look forward to the update (confirming the ruling was in your favour).

Namaste|

:pray:

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I am aware that making notes is beneficial, but will they say, oh, he can make notes so therefore is not eligible? I have had this rhetoric spat out at me before. One of the key statements made by the assessor was that I did not appear anxious over the phone, not sure how they gaged that and in what respect to me every fifteen minutes or so pausing the conversation to check if my support worker was on her way (incidentally, she missed the first assessment but was there on the second) didn’t register as anxiety. However, their job is to reject someone in need, no matter what. It is a distasteful part of our society that is still Victorian in many ways. The amount of money spent managing this system badly, probably, far outweighs the amount spent on supporting it. Having said that, I have a nice coastal cave on standby, rent free, available driftwood for the fire, and an abundance of fish right outside.

Ultimately, it may come down to trial by combat. I hope I am allowed to pick my champion as I am a bit rusty using my walking stick for melee.

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And don’t get me started how expenditure is allocated to the military, the loss of life as opposed to supporting it. And this is coming from a person who is from a fighting family. Alas … Smith and Jones :rofl:

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Ha… I think I’ll have slipped off to my desert island WAY before court dates are calling, but I’m thinking I’ll find you a cave to live in too!

It is certainly a minefield. Being able to speak relatively clearly, I assume that is going against me a lot. I try to be casual, my way of coping with stressful situations is to crack a joke, I know that’s working against me. I used to try and dress “nicely" for my UC meetings every two weeks…then gave up and slipped into often wearing the same thing (not intentional, but I have realised I often do it). But they don’t notice as I rarely saw the same person anyway. So I dunno. I don’t want to try and look worse than I am, but I’m certainly not “normal”, and unfortunately they don’t see that. And me saying it isn’t exactly proof.

I always liked the sound of Fiji…. I should check how many uninhabited islands they have around there…

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The whole PIP system is a debacle really. So many people end up at tribunal and get awarded. I think the stats I saw said something like 70% of people win at appeal. That in itself tells you there is something wrong with the system.

Good luck @Rups hope it hows your way.

@Toonah don’t give up.

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I believe this to be true and I believe the reason they might do it is because they don’t expect challenges or appeals. I don’t know how many people feel able to or are willing to go to appeal.

Not sure there is something “wrong” with the system - it has been designed by some “evil minds”.
It is a feature and I expect it is working as designed and very successful.

I don’t have data to support my view, but I believe there may something in it.

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I probably meant the way they apply the criteria rather than the system. Bad choice of words on my part. But you’re right they hope people aren’t up to challenging or appealing.

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The way I look at it is this … we build a community … we develop produce … we develop a way to trade that produce … the more developed the produce the more developed the making of that produce. Produce can be at basic, food, shelter and clothing. We are born, unable to make produce and are cared for by those who do. We grow and make produce and care for those who don’t. We grow old and are unable to make produce but are cared for those who do. It’s a very simple cycle complicated by cravings of power, greed and entitlement. We look after our young, our helpless, our disabled, poor, and elderly. Before stroke, this was always my ethic.

PIP is a brilliant idea but dealt with in the Victorian manner. Come here laddie, if you don’t eat your meat you can’t have any pudding, and all that nonsense. It’s very outdated. Look at the current debate on palliative care, it makes complete sense to have a bespoke healthcare for those leaving this world, that makes sense to me. It would have made sense to most of our ancestors, and the basics haven’t changed, we live, we die. You can AI, DIY, Life Hack, Deep Seek, Wi-Fi until one is Blue-Tooth in the face but it changes nothing about entropy and mortality.

Sadly, I think thinking is now a secondary skill :rofl:

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I agree with you. Not totally , but enough not to argue! I’m thankful that my age calls for help are looked after well. I’m struggling at the moment recovering from Rituximab treatment which sometimes is worse than the disease it is treating. I usually have a week’s discomfort and then my energy starts to recover. This time my energy has not returned and household gardening jobs deferred are proving difficult to find energy to complete. Fortunately I have a family living fairly local and can be called upon to do the heavy jobs.

Getting very warm here in New Zealand and having to remember how to cope with last years summer!

Deigh

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I’m struggling with gardening at the moment, I’m missing crucial time to complete tasks because of my disturbed sleep patterns . I have banked up too many projects. The only reason for this is because I wanted something to be able to do at any given time … then fatigue sets in.

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Question for whoever might know…

I finally got accepted for “Capability to work” (2nd appeal, 10 months after first applying…well, applying for 3rd/4th time). But it’s only valid for 2 years and STARTED when I first applied apparently.

So if I want it again, when do I reapply? Should I reapply in Jan 2027 (when it’s run out) or in Feb 2026 to allow the 10 months of rejections and reapplications? :thinking:

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I imagine they will inform you when the application starts again but if you’re already on it and still unable to work, then it should be automatic if they approve.

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I’m in exactly the same spot! I’ll let you know if I find the answer!

Deigh

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hello you could see if you have a local carers trust near you. I found one near me, and they came to my home and completed my form for me. i was previously rejected. they told me to contact them again if i get rejected again, so they could help with the appeal. I have my assessment interview next week, they initially had it as a face to face appointment, I called them to ask for a telephone instead as my very high anxieties I could not get there even though I drive. his was okay with them. Hope that helps

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Hello again with regards to the multiple rejections, mention that you will take a legal route on this, on a general note they agree it straight away.