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 NHS does have some dodgy nutrition advice floating around, but unlike diet coke which has zero benefit, can see why coke might be recommended- it gives energy from the sugar & caffeine despite the drawbacks.

A non-disabled 15 year old? Sure. We don't know what the 15-year-old's disabilities are.

I’m very sorry for all your health and benefit struggles, but I want to mention your diet too. I would feel like death if I ate like you every day. You need nutrients to function and you’re getting none at the moment. It doesn’t have to be complicated, but what you’re currently eating can’t possibly keep you healthy.

I know it’s really hard but it would make a huge difference if you could manage to put together one online shop with some fruit and vegetables in it, and then just repeat that every week, so you only have to do the thinking once. Choose things you can eat raw straight from the fridge so it doesn’t use up energy to prepare, and some easy things like tinned pre-drained tuna for protein.

Why? The mechanism is exactiy the same.

This is getting ridiculous now. Suffice to say one can see why reforms are sadly needed.

It makes me sad for those who have to go through the whole review and reassessment process because of the soaring of spurious claims.

Let's imagine OP has sat down and reviewed her diet. She now eats chicken stew in the slow cooker, baked beans on jackets and other approved MM meals.

She still has CF and it doesn't help her core symptoms so she still needs to only work 10 hours. Maybe the diet helps her work 15! A massive percent increase

It's going to be very hard on people who can't work full time to have to look for full time work. She won't be the only person in this situation. It's going to be very hard.

I do think this bizarre change of linking pip to capacity to work is isn't the right step. When pip was never about work.

What about ready fresh soups? Pre-prepped chicken that just needs to go into the oven? Take out of the package pop into the oven or microwave. I even saw potatoes ready for roasting in the roasting tin! Buy cordial and poor it into glass of water or bottled water, definitely won't take more effort than can of coke. All supermarkets have all this stuff nowadays. Also healthier food might be more expensive than frozen pizza, but it goes much longer to keep you full. Last time I checked pot of noodles is £1.30 and it's just a snack which has no nutritional value, so you'd be reaching out for one every couple of hours.

There's a lot of ways in this day and age to eat healthier with minimal effort, sorry that t it is so obvious and you just don't want to hear it.

cancel the cheque

You have listed so many already, I am surprised that there are even more. Oh well, if the coke thing works for you, better do what the dietitian recommends!

And OP should not be driving either I would bet if she is that exhausted

'Ah, but that assumes those drinks are suitable for the patient. Again, you don’t know a person’s circumstances. Generalising isn’t a good look.'

I know that coke would never be advocated by a competent dietician when there are a myriad of oral supplementary drinks available. A myriad.

I think so too. Keep being told that Coke and baked bean cans are different metals and I lack critical thinking. Reached the point of feeling I am going a bit mad.

I haven’t actually listed any diagnosis in this thread, do you mean on MN in general?

Funnily enough I don’t actually even like Coke that much and drinking it often put me right off it! I can eat now so I don’t need it anymore. I do find it ironic that so many people are saying or hinting I must be lying / recounting this wrong, though.

My understanding of SEN is it covers a very wide range. Sorry, maybe I've missed something?

Please read the previous pages. I, and others have explained this many times.

So are you accusing me of lying?

None of the supplement drinks was physically tolerable for me. You don’t know as much as you seem to think. “A little knowledge is a dangerous thing…”

And who asked you?

The conversation seems to be centring around food prep. It might interest those commenting that the PIP test for preparing and cooking food involves fresh ingredients, prepared from scratch and cooked either on a hob or in a microwave. It doesn’t consider emptying a frozen packet of something on to a plate, or a frozen jacket potato, or ready meals. Many of the claimants l saw who lived alone had help from family or carers to batch cook and freeze so they could lift something out and put it straight into a microwave. For PIP this is not cooking, it’s reheating.

The PIP cooking test looks at whether you can stand or sit at a kitchen height counter top for any length of time. It looks at the ability to handle hot pans and lift hot dishes out of a microwave. It doesn’t consider the use of an oven and the help needed from someone else has to be directly linked to preparation and cooking. The assumption is that all ingredients and utensils are magically in front of you. Fetching and carrying and stretching up or down to cupboards is not included in the assessment.

The government promised a root and branch reform of the PIP assessment, including employing more qualified staff as assessors - currently there are no doctors and assessors are mainly made up of general nurses, physios and paramedics. They are recruited from NHS and receive five weeks online training as ‘disability analysts’. Then they’re unleashed on claimants whose conditions are often far outside their medical expertise or remit. DWP pay assessment providers on a bonus basis for getting through assessments faster. And medics don’t make the benefit decisions. They award points and an office case worker makes the the award decision, despite having no medical training.

Does anyone here really think this is a fair way to treat sick and disabled people ? The results reflect the methods and despite trying to do it on the cheap, there are massive costs attached to genuine claimants taking their cases to expensive tribunals and winning. If the government really wanted to save money and support the genuinely disabled, they would keep their promise to reform the system to something fairer and more transparent with properly qualified and trained staff. Perhaps then the decisions would be right first time and the tax payer wouldn’t have to foot the bill for tribunal experts to deliver decisions which should have been made properly in the first place.

And STILL not acknowlegding the whole picture.

It is a bloody disgrace. The food is one small way to perhaps improve things.

I have several inflammatory autoimmune conditions that cause severe fatigue at times, not to mention painful physical symptoms.

But if you allow fatigue to control you, it ends up in a downwards spin. The less you do, the more your muscles atrophy. The less you use your brain to complete essential tasks like an online shop, the more cognitive functioning declines.

My condition flares up then improves (albeit with lots of steroids and pain killers, pacing, re-adjusting my activities). I also had to change how I think about my responsibilities, both to my chikdren and husband and to myself. Forgetting important things like ordering my prescriptions, finishing a weekly online shop, making quick nutritious meals... it isn't an option to forget. If I don't have meds and food, my health crumbles. So I set reminders on my phone, and get regular meds delivered. You say you keep meaning to 'set this up' then presumably forget.

I suggest sorting your priorities so forgetting certain things isn't an option.
You have a daughter to care for.

Even during my worst flare ups, I still have to drag myself up early to look after my young children, feed them, take my meds, make sure we're all washed and dressed, get eldest to school. If I didn't order the meds and food, none of this would be possible. I always feel better after the short walk to school, even if it feels impossible setting off (I have inflammatory arthritis, which causes severe fatigue). But my mornings are carefully timed so I can take my meds before the walk.

You're able to drive daily to school, stop at the garage for food on way, type eloquent articulate posts here, make simple meals etc. So I can understand why some posters are getting upset over the PIP indignation. We all have to make choices to take care of ourselves. If you have the energy to stop for a can of coke, what stops you picking up some healthy groceries (or even some tinned fruit, instant porridge, cereals, wholegrain pasta?)

The more you tell yourself you don't have energy to do anything but grab the coke, the more you enable that downward spiral. Every time you reach for a pot noodle, you could reach for instant porridge or heat a tin of soup.

I'm sorry you're feeling so low. But instead of worrying about potential cuts, you could focus on the daily responsibilities you have, plan how to improve your energy levels and functioning. Plan how to get stronger. Which starts with how you talk to yourself. We can't rely on extra funding from government long term, even people with serious physical conditions may soon be denied PIP. We all need to be striving to help ourselves as much as possible, especially if others rely on us.

I would strongly urge you to get some help when the time comes for a review and filling in forms.

The Citizen's advice offer help with such things- free of charge.

I have attended meetings with CAB at my local carers support charity and the help was incredible.
These staff spend their time helping claimants, will have up to date information, and know how applications are assessed, and how points are allocated.

With CAB help I have applied for PIP and ESA for my adult son, lower rate and then higher rate attendance allowance for my mother.

All the awards were granted first time - with no appeals necessary.

The support is invaluable.

They are different metals.

How lucky you are to have a body that means you’ve never had to notice this.

I couldn't take this no more, so here is the link to Tuna available that requires no drain, no can opening. Literally pot of noodles, but it's tuna. Solved!

www.john-west.co.uk/product/no-drain-fridge-pot-tuna-steak-in-spring-water/

As I said, we don't know what disabilities the kid has, we just know she can't care for OP, cos OP said so

🙄