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?

Since I posted this, the person who said I shouldn’t be getting PIP has continued to post hateful comments on the thread but hasn’t responded to my post.

I wonder why… Do we think she now thinks I should get PIP? Did she change her mind? Or does she still think I shouldn’t since I dare to use it towards our electricity and gas bill (shocking! Breaking news! Disabled people are poor!) and not to spend every penny on additional treatments?

Lets remember that I have a history of clinically diagnosed hypothermia when we have tried lowering our heating. It would definitely be so much simpler and cheaper for everyone if we didn’t pay for heating and I was just admitted to hospital… right?!

The same way they get to the other podiatrist appointment, obviously. I would expect an NHS podiatrist to be able to make house calls if the GP deemed the patient housebound. That’s how the NHS is supposed to work.

so maybe look at ways of filling the pot? maybe from those huge corporations paying next to nothing in tax? that would be preferable to cutting money from some of society's most vulnerable people. I mean, I would be proud to live somewhere that tackled it from the top corporations and earners in that way Instead I feel ashamed the best we can do is pick on already vulnerable people, making assumptions about them, and giving page after page of so-called nutritional advice when the people giving it know a) nothing of the OP's situation generally, including what she may or may not eat every day and b) are not actually nutritionists themselves with experience in managing ill health and disability.

I am in my 50s. Never voted anything other than Labour. I will not be voting for them again. This is not what they are supposed to stand for.

@Pickledpoppetpickle do you know any countries that are doing as you suggest?
Taxing the top earners has already resulted in a flight of net contributors.

not top earners - who if every country taxed them would effectively have no where to flee to - but the highest earning corporations we seem to be terrified of. They have their uses - creation of employment, absolutely. But they need to fairly contribute. Close loop holes. Make new rules. Put in new legislation.

Filling the pot? Infinitely? We're already paying for more than ever before. How do you fill a pot that never stops growing?

It would definitely be so much simpler and cheaper for everyone if we didn’t pay for heating and I was just admitted to hospital… right?!

I think many people on this thread would just prefer disabled people to quietly shrivel up and die, tbh.

So in 1990 the average earner paid 28% of what they earned in income tax and NIC. The average earner currently only pays 19% in tax an NIC. In 1990 the top 1% paid 36% of salary in income tax and NIC. That’s now 42%. The higher earners are paying so much more than ever before while the average earner is paying very little tax. How much more do you want the 1% to pay? Where does it stop? What would be acceptable to you? We cannot keep loading our tax take onto the highest earners as these are the most mobile employees we have. They’re quite happy to move countries as a lot of them weren’t even born here. At some point you have to start looking elsewhere for a solution.

And as for multinational companies, they aren’t evading any taxes, they are complying with tax legislation as it stands.

Totally agree, this is not the Labour I know, utterly disgraceful!

No we don't. Families should take responsibility for the disabled within their family..

I think should work is the key
People should also have access to an NHS dentist and not be waiting 18 months for endometriosis consultation but….

This would take a massive change in tax legislation and would massively piss off the US who in the past have retaliated by slapping massive tariffs on good from countries that have tried this. And you are naive enough to think that this would be good for our economy? It would be horrendous.

I hope you do realise that those large corporations and people who work for them contribute very large amount of tax already? What we should be doing is become an attractive country to set up a business, which is getting worse and worse. Our young talent is looking for every reason not to work (too anxious), taxes are so high for middle ground experienced talent stop progressing and reduce hours, because it is not worth it after tax.

Be careful what you wish for, because they will get up and leave and so will the tax payers that work for them. UK is already unattractive for many millionaires who left for Switzerland and US. So yes, in your eyes they might not be contributing as much as you would like, but when they leave we all feel it.

You can't just knock on someone's door and demand for money just, because they are rich, they don't owe you anything. Very short-sighted view.

Not voting for Labour won't make a difference. Every party will trim benefits. They have no or very little choice.

Really not as simple as " Tax the rich!". There aren't enough of them, and not even enough net contributors.

Those companies would go somewhere else too. Half of big tech had their European HQs in the ROI whilst their corporate tax rates were lower than everywhere else.

We are entering a period where an unprecedentedly large part of the population have no expectation to work and correspondingly we are now on a downwards perpetual slide into lower living standards as the tax base continually narrows. It’s already happened at all levels of the PAYE income spectrum and in due course, those who rely on the government will have to take the poison too.

Yes, seems that way, doesn’t it. I do find it frustrating when people are like “but I just don’t get it… whyyyy is cooking hard” and then when you explain why, they’re all “nope, that’s not true”. I mean, it literally is true for many people. Just as we aren’t choosing to have our bodies be unable to keep warm. I don’t understand (and maybe this is my autism tbh) the point of the posts that ask for an explanation of something related to fatigue based conditions and then are just rude and dismissive when they get one.

It does come off as a determination to attack disabled people rather than good faith “not getting it” at that point. I am pretty patient but not with goading.

Tbf part of the reason these threads are cropping up is due to the mistaken idea by Labour that you can go for the private sector without decreasing funds available.

It’s linked in such a way that by hitting private sector it ends up hitting welfare after a lag of, in this case, a few months.

It’s such scary times we are living in. I can only offer my sympathies OP. I have ADHD and can struggle ordering shopping/ being motivated to cook but what helps me- Get someone to help you do one online shop and then just add all to basket each week so you have the essentials in. If you can afford it buy in cooked chicken and spinach, easily chucked into a pot noodle or on top on a pizza without much effort to make it a bit more nutritious.

Families already do. They live in poverty.

Not to mention how utterly soul destroying it is to a carer. Do you have any understanding of the difficulties? The physical and mental toll it takes?

I’ve had ME for 30 years so believe me, I do know how good food CAN help. It’s not going to cure you but anything you put into your body needs to be clean. It’s a long, slow process but it starts with recognising the need to put good food into your body.
I was hospitalised with it in the 90s I was so unwell.
I’m not just someone coming on here with no idea. I have dealt with this far longer than a lot of people have.

If you are ordering (or buying, in any case) the same foods for your DD every week it sounds like you could make yourself a healthy shopping basket and order the same for yourself every week?
I know you say your blood work is fine and you weren't eating like this before you were ill, but it's got to be affecting your energy levels.

I am not completely sure how the PIP rules are changing but from what you've said, if you were to arrange things so that you could cook and eat, dress and wash every day, order your medications on time, communicate and read accurately every day, engage with others every day, go out and about every day, move around as others do every day, you would need a full time (and probably quite experienced, to get things associated with work done properly) assistant.
So I'm not quite sure what's changing, as I said, but your ability to dress, wash, and cook every day would require assistance which comes under the new threshold unless I've misunderstood?

So on your bad days, when you can't dress/wash/cook/process written information accurately then if you had a full time assistant you WOULD be able to do that.

But what does this look like?

Lots of people take responsibility for disabled relatives but need outside support to do this effectively. Sometimes that support is financial, sometimes it's practical.

I’m more than happy to chat via PM OP x

My mother is 94 and housebound. Can’t get a podiatrist to do home visits.

Families should take responsibility for the disabled within their family

Which they already do. There are millions of unpaid carers looking after disabled loved ones, saving the state billions.

If these cuts go ahead, the issue will not just be the disabled person losing PIP, but also that the unpaid carers will lose the pittance of CA.

The loss of PIP and CA and the effect of that on household income will mean many of those carers will then need to go back to work or work extra hours. The state will have to step into the gap left, which will cost millions and millions.

Labour hasn't learnt from the mistakes Osborne made.