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?

The majority of people on PIP aren't in that situation though. I think around 750,000 people in work claim PIP. A very small % will be on three figures.

The PIP system is already very expensive for DWP to administer, means testing would cost more than it saves.

This is such rubbish and makes my blood boil. Stop pointing the finger.
Funding childcare has a net positive financial impact due to income tax receipts.

I am almost totally confined to bed, I’m unable to cook a meal, I haven’t been outside or gone anywhere alone in twelve years and I’ve been a mobility aid user since 2008. My heart, lungs, bladder, skin, joints, stomach and gut are all severely affected by my condition. I haven’t been able to have a bowel movement without help for several years. I was placed on the shielded list during Covid because I’m immunocompromised and so high risk for severe complications. I am still getting further Covid vaccines twice every year. We would LOVE to use all my PIP for disability related costs and when our income was higher, more of it was being used towards paying for my large number of hours of social services care (I bet you don’t know that recipients of this contribute to the cost). Now our income is so low they no longer require me to pay. I am now no longer able to afford various additional disability related things that help (eg supplements, treatments the NHS doesn’t provide). Do you think I should pay for these instead of heating? Would it more more cost effective to get hypothermia repeatedly and be hospitalised at great cost to the NHS?

btw I have the highest level of PIP and an ongoing award (which is the highest tier of award you can get) in recognition of the severity of my conditions. Sorry you think I shouldn’t be getting it, though.

Because living expenses are higher for people with a disability.

A disability might mean:

A phone is an essential to get help when needed - as you can't just nip out if you're unwell
Heating bills are higher because your disability stops you moving around easily so you get colder
Heating bills are higher because your disability flares up if you get cold
You need fans on to keep you cool because if you get too warm your condition worsens (Multiple Sclerosis, for example)
Food costs are higher because the disability means people can't shop around - they're limited to the supermarkets that do home deliveries (in my area, Aldi, Lidl, and Iceland don't do home deliveries - we only have Tesco, Morrisons, Sainsburys - who are all way more expensive)
Food costs are higher because the disability stops people from being able to chop veg, for example, due to limited mobility in their hands/wrists, or perhaps because they can't stand for long - this means more expensive ready-meals or pre-chopped veg
Clothing - if you can't manage your extremities, you might need to buy special clothing that you can put on yourself without help = more expensive

I could go on.

Disability affects people in many, many ways and if you don't know why living costs for disabilities are legitimately higher, then you're lucky. This IS what PIP was intended for.

But it's fine to point the finger at people with disabilities. OK.

You just keep parroting about how difficult fatigue based conditions are, but not actually addressing what’s difficult in putting a potatoe in a microwave or air fryer, and sprinkle on it a packet of ready grated cheese instead of making pot noodles and cooking pizza. Can you explain why doing a baked potatoe is so difficult?

Well your condition would improve if you ate decent food.
I would feel the same if i lived on pot noodles and pizza ffs.And fruit doesnt need to be cooked.

They can have the money I get, but they have to take the brain tumour and epilepsy too. Deal?

Please can you explain why it is harder to pour boiling water on a pot of porridge than on a pot noodle, and harder to put a potato and a mini-pot of beans in the microwave than a pizza, and how some one who can drive is too ill to peel a banana or microwave some frozen veg or pick up an apple?

The situation with unpaid carers in all this is something that seems to have completely passed the government by.

I completely agree and I’m so sorry you have to worry about this, it’s totally ridiculous that the government is being so thoughtless and cruel. I have my criticisms of the current system, but what’s proposed is just utterly inhumane.

Yes, that's very true. I hadn't thought of that.

We've just gone through it for DP and it was bloody painful. Definitely wouldn't have bothered unless we were desperate.

I'd still be interested in the figures though, just out of interest.

Sorry but if you don’t use PIP for the purpose to which it is intended you shouldn’t get it. This is what annoys people. Why should you get money to help with your bills that someone without a disability doesn’t?

How do you suggest disabled people pay their bills then? Would it make you feel better for them to become homeless?

I think the PIP and carers allowance system needs to be overhauled. The fact you can claim PIP and carers allowance is ridiculous. This would be a quick fix too. Before they start delving deep into eligibility they could easily take carers allowance off people who claim PIP and make all pensioners revert to AA. The most easiest administrative way to save some money quickly as a whole.

Yes they di but im sorry true clinical depression the type you should he on pip for does not involve garden parties daily gym sessions and turkey teeth with 4 holidays a year. I stay in my pajamas most days this person is up and out daily dressed and washed. Not being funny 99.9% of the country has days when they feel shite and would say they are depressed or on antidepressants but they still function to an extent

Well OP is a prime example of someone who could work more. She doesn’t take any steps to address her lifestyle and how it could be adding to her symptoms. From her posts there are clearly a great many things she could change which would have a positive effect.
People who work to pay their bills don’t particularly enjoy when others who could work to pay their own bills seem to choose not to.

The funded childcare hours are for parents that are working a certain amount. Those funded hours aren’t available if you choose not to work.
I don’t really see how it’s comparable? Government funded childcare should actually be more accessible across the entire of the UK. We’ve gone one of the most poorly funded childcare systems in Europe.

My DH would have trouble completing some of those tasks safely. But he can drive using hand controls. Very different condition to OP's, but just because a person is able to do one particular thing, it doesn't follow they can do everything else.

These are just a few examples:

who cleans the air fryer afterwards?

you can eat pizza with your hands. No washing up You only need one fork for the pot noodle. You are more likely to need multiple implements for jacket and beans.

Every additional thing you open is effort. Fatigue. Do you microwave two things together? Do one and then the other? I wouldn’t know where to start with this. It would take far longer to microwave a potato jacket than boil a kettle, so either I’d be up longer (couldn’t do it) or get up twice (couldn’t do it).

I can’t grate cheese. I believe you can buy grated but prepped food is always more expensive and most of us are on low incomes.

Its basically all these things. I’m not saying no person with fatigue ever made [specific meal]. I’m saying that when you don’t get it, you can’t think in terms of why these seemingly insanely tiny things matter. Also, something like registering for a new supermarket/pharmacy or figuring out the time for a delivery to come (will you have the energy to let them in? To put fridge stuff away?) can be insurmountable.

750000 currently, but with 8000 applications for PIP accepted daily, then that figure is going to massively increase over the coming months/years. People on pip are understandably loathe for the system to be reviewed, but we can’t have a situation where something is allowed to continue unchecked/not reviewed periodically, just because recipients are happy with the status quo. Nothing should be exempt from reviews just because people receiving it want it left as it is.

The situation for many disabled and those on UC isn’t as different as those on PIP are auggesting- there was a study in Glasgow that demonstrated just how hard living on UC isn’t

teh poorest people live in crap accommodation- cold and damp and too expensive to heat or repair and a healthy person can get hypothermia or mould induced asthma as much as anyone else
these areas don’t attract the low cost supermarkets within walking distant r -it would be expensive taxis or buses if they want to use them
if you are using pip for basics have some sympathy for those without it

Mobility needs don't vanish the moment you turn pension age.

'I stay in my pajamas most days this person is up and out daily dressed and washed'

Peopep manage their mental health differently. Getting up, dressed and washed is a well documented benefit to one's wellbeing.

I am sorry this has turned into another disability hate fest @PIPsqueakybum I thought it might.

I’m disabled and get standard care and enhanced mobility.

under the new rules I wouldn’t qualify for standard care anymore. I actually use that money to employ someone to help me get up washed and dressed three days a week. I didn’t get four points for washing and dressing as I can wash and dress myself from the waist up. But i still need someone to get me into the shower and then to wash and dry my lower half. Dress me. My dh could do this I suppose but he’s working full time and works away although he’s looking for another job atm. And I’m catheterised so I’d rather he didn’t have to do any of that.

I work those three days a week. I use my adapted car. Well I did until recently as I’ve had a series of seizures. So it’s bus or taxi now. Complete with either crutches or walking frame. It’s hard!.

if I do lose the standard care payment I’m going to have to consider leaving my job. I don’t want to. But I’ll have to apply to social services for care help. And I know from experience (mil has carers twice a day) that i won’t be able to guarantee what time they come. And I need to be at work and doing my job on time.

im actually up for review and have sent my paper work back. My condition has become more serious but my care needs haven’t as yet. So it’s in their hands now.

This is one of the issues with the concept of pip. It's meant to help with the extra costs of disability, but for many disabled people the extra 'cost' is the impact on thier ability to earn a full time wage.

But things like heating and groceries can be a disability related cost. Groceries you might need more pre-prepared food, particular types of food due to special diets etc. And with heating, a lots of conditions have poor temperature regulation as a symptom and you need more heating. My relative with MS has a hairdresser visit weekly to wash and dry her hair for her as she hasn't got the arm control to do it herself.