To think people like me should get some sort of financial help

[Shimmershine819]

I'm at my absolute wits end. Crohns disease for 25 years. I work part time in the NHS (25 hours per week). I cant afford to drop any more hours. I've done the calculations, we'd get no help as a family. We can't survive on DHs wage alone.

No more accommodations can be made for me. I'm so ill. I've just finished a 4 hour shift, 4 short hours and they felt like an eternity. I was in so much pain, nausea, sweating. Trying to put on a brave face.

The multiple treatments I'm on don't seem to be making a jot of difference.

I think of all of those out these like me, with chronic illness, quietly struggling through each day with no help. Not ill enough for PIP, too ill to try and live any kind of normal life. My life is now work and bed. Thank god DC are older now.

Just needed somewhere to offload.

yes, I know several people in this position- too ill to work full time, not considered ill enough for disability benefits / any other kind of assistance. It’s truly shit xx

Yes! This is what the benefit system should be for, not for people that prefer to work part time because it's more convenient and would not be better off if working full time.

Many people are too ill to work full time.

Yanbu. Like you I have variable, fluctuating condition (myasthenia gravis). Sometimes I can be reasonably well if I am careful, but right now I am in the middle of a long flare and whenever I am not at work I am in bed. I can barely hold my head up , I can barely hold my arms up. Yet because it fluctuates I can't get any support (not even blue badge)

Yanbu. Like you I have variable, fluctuating condition (myasthenia gravis). Sometimes I can be reasonably well if I am careful, but right now I am in the middle of a long flare and whenever I am not at work I am in bed. I can barely hold my head up , I can barely hold my arms up. Yet because it fluctuates I can't get any support (not even blue badge)

This is crap, you should get something

Yeah this is shit. There should be something for you. I'm sorry

I'd appeal the pip decision and tell them only about bad days

YANBU.

Anuerin Bevan will be turning in his grave if he knew the scheme he set up to help those in need is now being used as a lifestyle choice.

The people who need help are being refused in favour of those who choose to live on benefits. And no matter how much they get it’s never enough!

It makes me wonder why middle earners bother to get up in the morning to spend a day in work for less than those who CBA to worse tbh 🤷🏻‍♀️

I’m only working now to build up my pension - which has been taken away. I guess I’ll need to work until the day I die!

I’ve worked since the day I turned 16. I’ve paid into the system all my life. Now my health is failing Im entitled to nothing. Not even the pension I was promised!

Yet those who have come out of school, and pop out baby after baby with various partners get everything.

Why would they work when they can get everyone for nothing? The current system is a joke!! 🤬

It can’t last.

The benefit system will have a major overhaul. Unfortunately it will be too late for you and me OP.

I'm sorry. That sounds really awful :(

i think maybe you should seek advice about applying for pip. Especially if you can barely manage a few hours work.
Benefitsandwork.co.uk has a fantastic guide. You do have to be a member but it's worth it. If you sign up to the newsletter there's a discount code in it for 20% off (down to £16ish for a years membership)

When you say not ill enough for Pip have you been turned down at appeal.

Same here, though perhaps not as severe as you. Fibromyalgia, so easily exhausted. No way I could work full time.

Same position. I do 27hrs NHS. My life is pain, exhaustion, bed and work. Too tired to do anything in days off.

Same. Fibromyalgia here. I work FT, rest the rest of the time. Take a bucket of painkillers just to survive. No treatment plan because it's not life threatening. DH cleans, gardens etc because I can't. Very few friends or hobbies because I have no energy outside work. Over 40 years working and paying tax. Yet entitled to no help at all. Not even the year I was bed ridden. It stinks really. One of the reasons I won't be voting for this govt.

Same but single, work 40hrs a week and multiple health conditions

Why don't you qualify for PIP?

Probably the same reason as me
I'm capable of cooking, cleaning, managing money, working, and exercise
But on a bad day I work then go to bed and I prioritise work over social stuff. I couldn't for instance work the day then go for a meal

But don't you just say you can't do it any day - rather than you have good days and bad days? My MIL gets PIP, there's nothing she can't do except walk more than a very short way I.e about 10 houses along max is the most she can walk due to breathing. But she can cook, clean, etc. She's retired so doesn't work anyway. I don't see how she qualifies and someone like this doesn't.

No need for that AT ALL.

I’m in the same boat. Also NHS 25 hours.
It’s depressing. I don’t know how much longer I can actually go on. Until I collapse I suppose.

Why don't you qualify for PIP?

This is the big question.
I see people suffering far less than I do, they tell me all about their holidays and what they’ve been up to, decorating, days out etc. All stuff I’m not actually able to do. 5 hours in work then bed. Weekends sat in the house in agony 24/7 trying to recover from working.

It’s so messed up that we have a system where single parents are forced to be unemployed and are penalised for working when they desperately want to, and sick people are forced to work when they need to stop.

Makes me want to scream.

So sorry OP. Can I ask the nature of your work (as in admin or nurse or suchlike)?

A family member has this and its awful - he can be bedridden at times. He does have a blue badge - please do try and investigate further as that seems wrong that you can't?

It's not that simple. It's about if you can do it 'for the majority of the time' and 'reliably, repeatedly, in good time, safely' etc

This is why it is so important to get help with PIP as you need to know the wording.

I get PIP, I have MH conditions, a bowel condition, I explained I can do the things but most of the time it takes longer, about safety e.g. spilling stuff cooking due to meds.

You can points for different diets for example for crohns (I have a low fibre diet) and needing prompting to eat due to pain.

There is a site pipinfo has changes for PIP on there as it does change as appeals take place and the years go by

Sounds to me OP qould probably get it if they got help and went to appeal.

I would try again for the PIP but make sure you tell them how bad it is on the bad days. Don’t make every day a worst day case because that would be fraud but you can absolutely explain that some days you are bedridden which you say you can be. Explain how awful it is as though the person reading the form has no knowledge of Crohn’s at all.

My Mum had Crohn’s disease all her life and successfully claimed PIP and then attendance allowance for it. I helped her do the forms. I am also on PIP for lupus and other conditions. If you’re not getting it you’re not doing the forms right. You don’t have to be unable to do things all of the time to get it, that’s a complete myth.

Oh also crohns and colitis uk have a guide (DH has it, not PIP but IBD)