To think I am completely fucked if PIP changes happen?

[PIPsqueakybum]

I get standard rate PIP due to having CFS. I’ve had CFS for 10 years and at the moment I’m going through one of my ‘better’ phases, during the bad phases, which can last weeks or months, I am virtually bed bound, and although I manage my condition as much as possible through pacing, stress is a big factor in making it worse so one majorly stressful event and I’ll be back to square one. I am self employed and manage at the moment maybe 10 hours of work a week, which is better than no hours which is where I was for many years. This is in part due to finally winning my battle for PIP and being able to afford therapies which have helped me have at least some kind of a life.

To give you an idea of an average day (bearing in mind this is as good as my health gets), here’s what I did today:

7.30am woke up as usual feeling completely unrested, aching and like I’d been hit by a truck.

8.30am drove teenage DD to school. Already felt completely exhausted and had to stop at a garage on the way home for a rest and to buy a can of coke to try and wake myself up enough to drive home.

9.30am got home and got back into bed to rest, as I had a meeting at 1.30pm and I felt too tired to manage a conversation. Fell asleep for a couple of hours.

12.30pm got up, had a pot noodle for breakfast/lunch, as I didn’t have the energy to make anything else.

1.30pm met up with potential client, which went well and I have some work as a result of it, but was left completely wiped out by having to be ‘on’ for an hour.

2.30pm got back home, tried to do some jobs around the house but was too tired and went back to bed to rest and then slept for another hour.

6pm got up and put a pizza in the oven for tea.

7pm - now, rested in bed, aching all over and watched TV/zoned out for the evening.

This is a typical day, and I repeat this is as good as things get for me. The fact that I was able to get DD to school and go to a meeting is a HUGE improvement on where I was for years, but CFS is a fluctuating condition and I could very easily be back to being completely useless.

If the proposed PIP changes happen, I will lose my PIP, and ergo also lose the LCWRA element of UC. It was a long battle to get PIP and I don’t have any more than 2 points in any descriptor. I will then be on the basic rate of UC, and my self employment will not be seen as gainful so I will be expected to job search for 40 hours per week, and will be sanctioned and lose further money when I can’t do this. I honestly can’t do any more than I’m doing, and even what I am doing now is a struggle. I’m doomed aren’t I?

I agree.

Completely agree. we can't continue to have a two tier system which is so unfair and unaffordable. I regularly see both of a couple on higher rates of PIP , the amounts they are getting are staggering. then all the pension credit on top, both claiming carers premiums for each other, two severe disability premiums etc. The pension credit alone runs into hundreds a month.

Wow, you must mix in dodgy circles.

How do you expect to personally benefit from disabled people being plunged into poverty? What do you expect to see in terms of financial benefits, for yourself?

The fact that you describe it as “feeling tired” highlights the complete incomprehension you have of these conditions. It isn’t “feeling tired” it’s at times being exhausted to the point you don’t even have the energy to sit up and keep your eyes open, It’s brain fog so severe that you cannot think straight and your brain feels like it’s made of sludge. It’s getting dressed being a monumental effort, which you then have to lie down and sleep to recover from. It’s not leaving the house for days and weeks on end because you are too exhausted to “live”. Our “good days” would put the average person in bed thinking they had flu. Some of the “advice” on this thread is hilarious. I honestly wish that everyone could experience just one day of living with one of these conditions.

What are the fraud levels associated with PIP?

Probably when her pip payment is reviewed.

I have lived with a similar condition. Things like cans of coke and pot noodles would have been actively unhelpful.

How could you possibly know that? Of course you couldn't. That statement suggests a high degree of egotism.

@CockSpadget I think a lot of people do understand that, but it’s hard to understand why eating a pot noodle is so much easier then eating say a banana and same goes for a pizza versus cooked chicken.

Sleeping and waking at abnormal times is a choice

It really isn't, otherwise my sleep pattern would be much better.

I dont believe it or not these are people who you wouldn't suspect people who foster children for example trust me some people will do anything for money. I will personally not benefit in anyway but I hope the money we spend on benefits could be redirected to policing or the nhs. I'm not against disabled people accessing money but we need to root out those lying. What would be wrong with vouchers for gas, petrol, electric or food I dont see a problem with that to support people. I dont want my children thinking they dont need to work as the benefit system is so easily accessible. I dont want people saying let's move to the uk they get great benefits there its completly unsustainable I want longevity of the benefit for those who genuinely need it.

So you have a can of coke for breakfast, a pot noodle for lunch, a pizza for dinner and feel crap. And then want working families to pay higher taxes so that you don't have to work more than ten hours?

Sorry, but no.

Voucher schemes would be deeply dehumanising for disabled people. And completely impractical too.

The vast, vast majority of disabled people are scrimping to get by. I know people like to share stories about people rolling around in cash but for people like me who are surrounded by disabled families every single day, it's just not reflective of what we're seeing.

People with a disability need to use their disability money for a wide and varied range of things. For example, on heating bills in the winter because they can't move as easily to keep warm, or because their condition worsens in a cold house. They might need to buy pre-chopped veg or ready meals because they can't stand and prepare food to cook. They might need to pay for taxis because they don't drive/too ill to drive/don't have a car and can't manage public transport.

The wide-ranging and variable needs of disabled people make a voucher scheme unworkable. Picking aids or equipment from a catalogue, which is roughly what the Tories were suggesting, is just a tiny, tiny part of the costs that a disabled person has to pay to navigate through life. It's the regular costs that are usually massively inflated and no one is suggesting that vouchers would cover these very fundamental costs....

FWIW also, doctors tell people with depression to exercise and to go for a walk as part of their treatment plan. Not everyone with depression has a sad face on the outside - there's been thousands of cases of people committing suicide and their closest loved ones having no idea how badly they were suffering inside.

You don’t understand OP’s condition. I don’t have CFS/ME but I have many friends who do and my condition has significant overlaps with it. She isn’t doing anything wrong and deserves empathy, not criticism.

So you are happy to completely dehumanise disabled people. Have their decision making abilities taken off them and handed vouchers. Utterly degrading.

Not to mention the fact that for many people, they do not have enough money coming in to be able to direct their PIP money towards therapy or aids or whatever. For many, the PIP has to be part of the household income and needed to pay bills. You want to take that away from them and instead hand out vouchers. Class.

She isn’t well enough to cook. Do you think that’s OP’s idea of an ideal day’s food? Think for a moment. Imagine feeling like you have the flu every single day. That’s what her illness is like.

No she’s actually doing a lot wrong when it comes to managing her condition.

Baffling that you’re arguing the opposite.

OP driving when so tired is worrying. i dont have a solution though.

No other country in the world has our insane benefits system.

People have to survive on UC so perhaps those claiming the PIP is critical need to have some sympathy for those who dont get it now- many of whom are also in difficult circumstances just without the PIP

the PIP should be for additional necessary suport - in OP case she does mention private treatments

I do agree that the pot noodle and pizza diet is probably making things much much worse

(Expensive decent) toast a slice of cheese and an apple don’t take more effort than a lot noddle

jacket potatoe and a bag of salad would be better than the pizza and no more effort ( precooked chicken could also be added - most supermarkets sell them )

This! We use PIP to pay our electricity and gas bill, our phone bill (on the BT cheapest tariff), and other essential expenses. We’re on a very, very low income despite my spouse working full time. Of course we also use PIP to meet disability related costs, but it can’t all go to that (so I just do without) because we can’t meet our basic costs without using it for them. I got clinical hypothermia one winter…

And eating better!
Anyone would feel tired on a diet of coke, pot noodles and pizza!

I wonder how many people receiving PIP are high earners? That would be interesting data.

I saw on a previous thread someone suggesting that instead of PIP being viewed as a levelling benefit for everyone, it was only available up to a certain level of income. I think as long as the cut off wasn't ridiculously low like the change in the winter fuel allowance, that would be an entirely reasonable alternative.

I wonder how much money that would save? And bearing in mind disabled people have higher living costs, what would be a reasonable cutoff point?

The thing is, you are imagining it’s this diet vs healthy diet. But for people with a condition like OP’s, it’s more like this diet vs Don’t Eat. Nutritional compromise and becoming drastically malnourished / underweight is actually a huge risk in CFS/ME, so she is doing absolutely the right thing medically by eating anything she can. It’s a “fed is best” situation, akin to if a child has ARFID and seemingly has an “unhealthy” diet.

Many of the suggestions on the thread for “quick” or “easy” meals are not easy at all with severe fatigue. I don’t have the same condition as OP but have overlapping issues and when I lived independently with carers, I could not have made any of those things.

The whole changes are really scary. I'm in a weird place now where if my mental health improves I'll not score a 4 in any category. Then I'll be screwed. No one wants a schizoaffective employee. The stress of work sends me delusional anyway and it wouldn't be fair on anyone I worked with. But because I work my arse off to be stable enough that I'm not damaging my children(who I had before I developed this sickness) I might be penalised.