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.

The forms are how you are half the time. Not your worst day. They'll turn you down for that. It's fraud.

I am in the same boat as you.

Do you in inject humera by any chance?

I would suggest trying again for PIP and taking it all the way to tribunal if you have too.

This is what I did and mine was awarded by the appeal tribunal.

I work 3 days a week from home and do a bit of freelance work now and then and get PIP at the basic rate.

This allows me to do the things I need to do to manage my condition better and try to reduce my chronic pain.

@Workinghardeveryday no (but I've heard of it!)
I'm on GCSF and Xolair

Strange how these injections can make you feel so rubbish after!

I injected on Sunday, spent Monday in bed constantly sneezing with a major runny nose, felt rubbish, like a heavy cold.

Since I started them in July 2019 I have been constantly exhausted, most days I just want to sleep all day.

Are you the same?

YANBU. You absolutely should. I’m sorry it’s hard for you. 💐

Fellow Crohn’s sufferer here! Was in remission for a good few years but the last 6 weeks have been hell.

I have a job in finance, however it’s fully remote. If it weren’t for being remote, I wouldn’t have been able to work at all in the last 6 weeks.

I don’t think I’ll ever be able to do a non-remote role again with my Crohn’s.

I’ve heard the NHS are quite poor employers if you have health issues (which was the opposite of what I expected).

I'm similar, UC and RA, can only work about 25hrs a week and have more time off than other people. I'll have a rubbish pension and the mortgage has to be in DHs name only as insurance for me was more than the mortgage itself.

The biological drugs have made a huge difference, to be fair, so I've been able to have children, but I'll only have had half a career by the time I need to stop working, despite having exhausted myself completely.

Occasionally I feel lucky as I used to be so ill I didn't think I'd find a job at all, now I pass as healthy most of the time. The getting older with less achievements under my belt is scary though.

Thankyou so much for all the kind replies. I'm reading them all. I think I'll try again for PIP. Not sure I've got the energy to go through it all but the money would be a huge help even if its the basic.

Sorry for all of you who are also struggling. It's a rough hand to be dealt.

Agree 100! People like you should get help, it frustrates me so much that so many take the piss, yet those who need help don't get it.

@Workinghardeveryday yep, always tired

Just regards the Appeals as the decision makers is the best overall tip I had for PIP.

It felt like for me they were the only ones seemed to look at it fairly but by that stage many have been put off / given up.

The appeal success rates are around 70% but the actual numbers are about 40% prior to this.

My Dh has crohns and is on humira, he was on that and methotrexate but I think it was around the pandemic he managed to come off the latter and just take the humira.

I think that was because he is self employed and he needs to work outside the home and the MTX put him in the clinically vulnerable group (perhaps?)

Anyway he too gets no PIP etc, it is hard and I think work stress makes his condition worse at times.

Oh another tip I have not related to benefits is if you have crohns you should be able to have regular colonoscopies as slightly higher risk of developing bowel cancer.

I mentioned to DH and he had to ask the IBD team at the hospital. Now they do this (sigh) it shouldn't have taken that but there we go.

Also citizens advice can help you with your pip forms! So might be worth giving them a call and setting up a meeting! Good luck 🤞🏼

That guide on the Crohns and colitis uk site looks really good, think they have improved it perhaps

OP you have inspired me to try and put in a claim for DH who does struggle but tends to minimise his problems.

I think he may get standard rate for just 2 descriptors - the one about prompting for eating (as he avoids it all day due to it setting off pain) and the one about cooking (as again the food sets if off and he needs to leave the cooking to go to the loo which is an example on the site mentioned)

OP you would probably qualify for more by the sounds of it but even those 2 things would be 8 points so standard rate care.

Something else the site mentions is the descriptor just needs to apply at one point in the day to qualify. I'm a bit unsure how that links in with 'the majority of the time' though.

It's a bit of a minefield.

Thankyou again for all the replies, they've been wonderful, they've meant a lot to me.

I'd geared myself to try for PIP again but looking at the form online I just don't see how I'd ever qualify. I can cook, wash myself, toilet myself, manage my finances, I can travel, I can manage my medications. Yes I'm in pain, I'm nauseous, I'm fatigued etc but it doesn't stop me looking after myself.

My problem is that I can't manage what's required of me in work, in any work. I mean, I am managing but by a thread. I feel like I'm heading to an early grave!

Needing to reduce my working hours and not being able to look after myself at home are 2 completely different things. I feel like I'd have to lie to get anything.

I'll give you a typical evening. I'll cook tea (something quick and simple but I know nutrition is important so I always make sure I eat). By 6pm I'm on the toilet. DH will do all the evening jobs around the house while I'm basically on and off the toilet all evening but I don't need any help with that. I can run .y own bath, I can wash myself, dress myself and get into bed, I take my meds and that me done for the day. Every day. I never go out in the evenings.

I dont know, I just don't tick any of the boxes.

And another thing is that I look the picture of health when I leave the house. I go from looking like something out of the living dead in the evening to a normal, healthy human by morning! I make a huge effort because I can't stand the sympthatic 'gosh you look pale/tired etc' so the hair is gone, make up on and I wear bright colours and a gradual tan. I dont want anyone in work to know how I really feel, I can't stand the pity or gossip. I can imagine walking into a pip assessment and them making a decision before I've even sat down.

There's lots of us out there with so-called hidden illnesses/disabilities.

I have a CFS/ME diagnosis and have only felt well enough to work full-time again since 2019, but in order to do so I have to prioritise rest similar to your life, OP. For a good while, I just felt grateful enough to be able to do this, but that's wearing off a bit now!

Nothing very useful to add, but you're certainly not alone and it isn't fair for people like us.

Why not it’s completely true, benefits should never be a lifestyle choice. Yes, OP, you should be entitled to something!

OP you really need someone experienced to help you fill in the PIP form, for example from a charity for your condition.

I recently applied for PIP. I filled in the form and then spoke to an advisor from Debra, the charity for people with EB. The advisor pointed out loads of things I hadn't thought of. For example on cooking, DH has to do all the chopping for me or I have to use pre chopped veg like frozen onion. So he counts as an 'aid or appliance'. She also pointed out that sometimes he has to cook as I can't stand up long enough to. Also, I have to use silicone spatulas as my hands are less likely to blister using them compared to a wooden spatula. So they're an aid or appliance too.

Someone who knows what they're doing, what things to consider mentioning, how to word things etc makes all the difference.

The system makes me so angry. There are people like the op who get refused help and have no choice but to work, yet others seem to get pip just for having a ' bad back '
A good friend of mine is in the same position as you op. She was knocked down by a car a couple of years ago, leaving her with severe injuries including a leg so badly smashed that amputation was considered.
She had no choice but to return to work before she was fully fit to as she only got SSP and was getting into debt just for rent, much less everything else.
She is single, so no DH to help out.
She is in agony with her leg and back by the time her shift has finished as her work entails being on her feet for most of it.
As she says, she's almost sixty, being a care assistant is all she's ever known and she can't afford to retrain for anything else, beside who would hire her at her age anyway, especially with no experience.
She can't retire until she's 67 either, so what is her choice? None.
So she lives doped up on pain relief with no life whatsoever.
She doses on pain relief, goes to work, comes home, cries and goes to bed dosed up again.
Despite applying and appealing more than once, pip don't want to know!
It's a disgrace of a system.

With PIP, it’s not about your condition, it’s about how your condition affects your life. Go on the CAB website and it tells you question by question how you should be answering. Just by your description of how tired you get, it sounds as though it’s worth at least applying.

I don’t know where I got this from but it’s been on my phone for years and is quite relevant in the case of chronic/fluctuating illnesses and conditions.

“This is the key bit for people with ME claiming and fits with the repeatedly, reliably, safely and in a timely manner rule:
This is the key bit for people with ME claiming and fits with the repeatedly, reliably, safely and in a timely manner rule:

'The HCP should explore all of life’s key activities in the
process, such as feeding, cooking, keeping the house clean, shopping, gardening,
social life and so on. This should include clarifying details such as how often the task
is performed, is it repeatable and is there any after effects? Evidence of consistency
should be sought in how each of these activities is managed. This in turn should be
confirmed by informal observation where possible.
It should be noted in interpreting this evidence that one of the common complaints of
claimants with CFS/ME is that although tasks can often be accomplished they
cannot be sustained; or reliably performed again without significant detriment (e.g.
exhaustion, to the extent of being unable to continue with any other activities for the
rest of the day/ next few days). '
And; ' Taking all of this
into account, if a claimant cannot repeat an activity with a reasonable degree of
regularity, and certainly if they can perform the activity only once, then they should be
considered unable to perform that activity.”

In other words just because you can do something once, doesn’t mean you can do it ‘safely’ or without detriment.

There’s this FB group too which gives advice for free. Then there’s Fightback who are a chargeable service but I think reasonably priced.

The paragraphs above reference ME/CFS but it’s relevant for all conditions really, particularly chronic and fluctuating ones.

@PogoThePunk
Didn't your friend claim the loss of earnings & compensation from drivers insurance?
She shouldn't be suffering through someone else's actions.
If people can get compensation for whiplash, a broken leg should definitely qualify!