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.

I have done a paper appeal in the past, these are not as successful apparently but in my case was due to MH. The stress of going to the thing would have made it much worse.

You can even appeal online now - easier than the actual PIP form.

I don't really understand why people don't appeal when they seem much more understanding and successful than DWP.

I suppose that the length of time and treatment by DWP puts people off.

You have my sympathy OP. The system is ridiculous and illogical, and even if you get PIP it in no way covers the cost of disability.

I have been chronically ill for over a decade. I am a lone parent, work full time, and every year my health deteriorates. I receive PIP but with a mortgage to pay and two children to support it makes no significant difference.

My children both have disabilities. Still fighting for DLA for them but even if they get it, it will come nowhere close to covering the 1:1 childcare they require whenever I am working. It's a pathetic amount of money.

Somehow I'm meant to manage my own health with no respite ever, work full time, provide for and care for two disabled children and pay this huge childcare bill with only 24 hours per day to do it all when a couple have 48. But the couple can earn twice as much as me tax free, twice as much before paying higher rate tax or losing child benefit etc. My effective tax rate is now so high that if I manage to get a payrise it won't benefit us. So no possible way to improve our situation, no help, and I'm being hammered with twice the tax that a two parent family would have to pay on the same household income.

It's completely illogical because the situation is unsustainable. If we were provided with a sensible amount of support for our needs, or even just taxed fairly, I'd still be a net taxpayer by some margin, and then I could get my health stable, continue caring for my children, continue working and contributing to the tax for services for everyone else. Whereas if things carry on as they are my health will crumble entirely and I won't be able to work at all. I don't understand why the system is designed to make it impossible for us when this will be to the detriment of me, my children, and the taxpayer. Ridiculously, if I didn't work and we rented we would get a large amount in benefits and we'd have triple the income after bills that we have now.

Ultimately if disabled people who are doing their very best to continue to work are provided with such an insulting level of financial support (if they get any) then more and more of them will become unable to work at all and will cost the state far more. The focus of the welfare system is entirely wrong and the people who should be the very highest priority for support receive an absolutely pathetic amount of money. I can't for the life of me understand why as a disabled lone parent I'm being taxed to the extent that I'm getting into debt paying for my disabled children's childcare so that money can go to often able bodied people or two parent families.

Decent countries do not do this. Disabled people get proper support that reflects their costs. And single parents do not have their inbuilt disadvantage compounded by taxing them more than two parent families on the same income, which is also discriminatory because over 90% of single parents are women. The UK system is absurdly unfair and self-defeating, hence the horrific outcomes when compared internationally. Good luck finding a politician in any party who intends to fix this, though.

Also with the new changes to the WCA and focus on PIP instead means many may not qualify at all. maybe that is the intention

What is WCA? How will that affect PIP? PIP and DLA for children are so low anyway, I really cannot believe that this is all the help that the UK thinks disabled people should receive. It's shocking.

DLA higher rates plus Uc higher disabled child element are not insignificant amounts ! I do understand that not all disabled children get higher rates though but a lot do. Like I said in my post above, a couple where one was unable to work and claiming PIP were getting around £1200 in UC and PIP even with the wife working and the husband disabled. It's not bad, in fact almost equivalent to a full time wage for some people. And he was only on standard rate of PIP.
WCA is the work capability assessment for UC or ESA.

I am single parent with multiple conditions, work pt, have mortgage, can't drive due to disability and can't not work due to mortgage etc.
I finally managed to get pip last year with help from citizens advice.
It's taken me out of food bank territory, please try again but with help.
Cab can complete the forms for you in your presence or over the phone

Can you claim PIP?

The OP has been turned down

Can you look for another job or transfer your job to home-working? You’ve typed in this thread more than I type in a day in my job. Most of it is by phone or Teams calls. We have several employees with disabilities because the job involves minimal physical activity. The most I have to do is walk to the other side of the room to the printer/scanner. If you took away the journey to and from work you’d have more energy for your job.

Instead of expecting the taxpayer (ie other working people who are also struggling) to provide you with more money, think about the changes you can make that will benefit you physically and financially.

DLA higher rates plus Uc higher disabled child element are not insignificant amounts ! I do understand that not all disabled children get higher rates though but a lot do.

My children should get middle rate if the DWP ever process their forms: it has been sitting with them for months. Yes, it is an insignificant amount when their childcare per month averages out at more than £2k, for me to be able to work, because they cannot cope with holiday clubs, after school clubs etc. And that is before any of their other needs are met. I mean, I could just not work, but then the state would lose way more than that in monthly tax payments.

Again, PIP is a pathetic amount, given the above plus a mortgage to pay. The mobility part is used for that, through motability, which is actually decent value. But the remainder, the "care" part, obviously doesn't even touch the sides of the costs of disability.

Like I said in my post above, a couple where one was unable to work and claiming PIP were getting around £1200 in UC and PIP even with the wife working and the husband disabled. It's not bad, in fact almost equivalent to a full time wage for some people. And he was only on standard rate of PIP.

Well yeah if people get UC as well it may be very different. I have read posts where able bodied people, even in two adult households, are receiving incredible amounts of UC that far exceed anything provided in disability benefits.

WCA is the work capability assessment for UC or ESA.

I see. It's the non-means tested disability benefits that I think are shocking because they come nowhere close to covering the costs of disability and therefore levelling the playing field at least financially for disabled people, which is their purpose. I've no idea about means tested top ups, we don't get anything like that. Surely if you have disabled people who are managing to work - often in significant pain - and contribute to taxes this should be supported, rather than leave them to struggle until their health collapses to a point where they can't work and have to have all of their living costs provided by the state. It's a stupid system that increases the isolation, physical and financial hardship of disabled people and also costs the taxpayer more money than it would to fund PIP and child DLA properly.

I actually don't think that the answer is always more benefits, no. It does sound like you are in an unsuitable job for your condition. Are you public facing?

More understanding, and ways to help you retrain might mean that you can work in a role that is more flexible around your condition.

Even if people do this, there are still additional costs involved in being disabled. It is these costs that the non means tested disability benefits like PIP are supposed to meet. And they don't, because they are around half the amount that they should be.

Same issue for child DLA. And for those caring full time for severely disabled children, carer's allowance is an absolute joke.

The way disabled people and their families are treated in the UK is disgusting.

If your income is too high for UC, the it's probably best to get another benefit check done once your kids are in receipt of DLA as that would bump up your UC award considerably. You can also claim significant help towards ofsted registered childcare on UC.

If your income is too high for UC, the it's probably best to get another benefit check done once your kids are in receipt of DLA as that would bump up your UC award considerably. You can also claim significant help towards ofsted registered childcare on UC.

Thanks for that. What's the income threshold for UC as a lone parent if the children are awarded DLA? I had no idea that affected it as we've never got any help like that, not even child benefit. The childcare costs for them needing 1:1 are the absolute killer. I couldn't believe it when I heard people getting UC, with non-disabled kids, were getting up to 85% of childcare cost paid while I am being hammered for tax and put into debt to fund childcare for disabled children as a disabled lone parent with just the measly 20% discount, while having my health crumble more every month. It is unbelievably unfair.

The threshold will be different for everyone depending on circumstances. It would depend what rates of DLA your children were awarded and you could also claim a carers element as long as one of your children was awarded middle rate DLA. If you have a partner then if both your kids were awarded ,middle rate DLA you could both claim a carers element each. If awarded highest rat care component of DLA then the disabled child higher element is a lot more than middle rate. All these elements added up together can make your total UC entitlement high. Then childcare elements added as well. The total award is then reduced by earnings. Families with multiple disabled children can end up having significant Uc entitlement even with decent earnings. Sorry I can't remember whether you said you are getting PIP yourself but if you are then if claiming UC you can also ask to be assessed for work capability if your illness limits the number of hours you can work. This could potentially ( depending on the outcome) increase your award further. then on top of this you would still get the actual DLA and PIP amounts paid separately.

Thanks @Babyroobs . I just ran our details through a couple of benefit calculators but with the presumption that both of my children will receive middle rate DLA for care and lower rate mobility - which should be the case given their needs and the huge bundle of professional reports sent to DWP with the claim forms - and the calculators still say that we're entitled to nothing else but their DLA and my PIP. Basically we are completely stitched up by me having worked all the hours under the sun to increase my earnings and bought a house before I became chronically ill. It does make you wonder why you bothered, if after decades of paying all of that tax, when I become disabled and have disabled children and ex-H buggers off and leaves me with two babies to support alone so we actually need some help from the services we've funded for everyone else for years with no complaint, the answer is "no".

Eventually my health will collapse, they'll lose their home, I'll lose my job, and the state will have to pick up the tab for us all. All because they wouldn't provide us with a sensible amount of support to make it manageable and sustainable for us to continue as we are with me funding all of our living costs but needing help with just the extra costs that result from our disabilities. It's so demoralising, I really am on the verge of a nervous breakdown at this point from the financial pressure, the pain and exhaustion, and fighting constantly to get help that doesn't seem to exist. DWP, SS, schools, NHS, all utterly, utterly useless. But quite happy to take our money each month. It will never make any sense to me.

Eventually when my children are left with a parent who is either completely incapacitated or dead, my one comfort will be that it serves the state fucking right not to continue to profit from my pain anymore and treat us so inhumanely when I have done everything I possibly could. I've survived on 3-4 hours of sleep per night for years, because all of this admin has to be done and I have a demanding professional job. I am in constant pain. Nobody cares. It's just "give us the money and fuck off". Fill in some more forms, and we'll tell you to fuck off again. I am on the verge of giving up now, there is only so much one human can manage. And to know that if I'd never bothered, never worked, never bought a house we'd be much better off financially, my health would not be so ruined, and I'd have much more time with my children to support them properly, it is all such a kick in the teeth.

Thank you for trying to help. Sadly, I think that for us, there is no real help. 😔

Yes I do get PIP. I'm a lone parent. No savings: all spent on the children's health needs not met by services and now in debt in fact just to continue providing their childcare so I can work. Nobody gives a shit about disabled people.

OP have you tried applying for ESA it's not means tested

I think op would have to drop hours to less than 16 to apply for ESA which is possibly a risk especially if it then wasn't awarded. And £77 assessment rate is maybe unlikely to make up for lost earnings by dropping hours ? It could be an option.

Yes, you are likely a victim of pretending you are ok. The absolute opposite of the people who get lots of help. It is ridiculously unfair OP. I'm so sorry you are in this situation. I do agree with PPs though that you should be getting some level of PIP and should appeal. Absolute joke, I know, to have to go through all of that: the stress and intrusion and humiliation, on top of the existing struggle of having to cope day to day with work and illness. The system is broken.

PIP is how the condition affects your life and ability to live a normal life, not how unwell you are as people can have good days and bad days.

I look in perfect health on the outside. I am definetly not.

I'd apply again, thered loads of support online for filling out the form

I really feel for you and am in a similar situation. I have ME and have just negotiated down to 3 days issue is the job is still 5 days of work and end up working on days off. I too feel ill all the time and work or rest - no life or many friends at all. It’s lonely and scary. Also horrid to how many similar posts are on here. Sending hugs and 💐

@SweetSakura , please go back to your local council re blue badge, I had a family member with myasthenia and they definitely had one and was much needed.
I happened to go with them to apply( pre COVID) and the guy didn't know what it was had to Google as is so rare. When having a flare up they needed a wheelchair. Perhaps get a persuasive letter from your neurologist?

The blue badge people can also join the list of utterly useless idiots making disabled people's lives hell for no reason. Having received medical reports stating that most of the time I am pretty much housebound, a PIP report stating I get higher rate mobility, and evidence that I am having to pay nannies just to take my children to school and back because I can't, they are still arguing with medical professionals over a year after I applied for it claiming they "don't have enough evidence" to issue the badge to me.