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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be terrified about PIP?

1000 replies

BobbyBiscuits · 29/04/2024 15:10

I've tried to blank all this out for ages, but today it hit me when the government basically are saying I'm going to (they want me to) have my PIP cut off?
My main illnesses are severe depressive disorder, general anxiety disorder and severe anorexia. I've severe PTSD symptoms and also think I may have ADHD but have not been able to get diagnosed due to phobia of MH services since I got sectioned.
I now have physical symptoms also and severe osteperosis which I put on my last forms. But had no assessment for several years.
I'm praying this is BS from the Tories and they can't do it anyway as they'll be kicked out.
Or could labour still continue this assault against disabled people?
It would halve my already tiny income, other half is from ESA, and they could kick me off that too even though I can't do anything!?

What do people think?

OP posts:
Thread gallery
13
ThisOldThang · 30/04/2024 10:07

GoodnightAdeline · 30/04/2024 10:06

We all know it can happen to anyone because probably the majority of people have some kind of condition.

The issue is the rising numbers and inaffordability. Does this projection look okay to you?

That graph doesn't seem to be showing any signs of levelling off at £35 billion...

MistressoftheDarkSide · 30/04/2024 10:08

Blackcats7 · 30/04/2024 08:34

@BobbyBiscuits
I think disabled people are going to have to start direct action and protests. Can you imagine any other group of people being scape goated, slagged off, marginalised and demonised as we are and it being tolerated?
The country will march for gay people, black people, people from Palestine, trans people but who will come and support disabled people? Probably nobody so it will just be up to us with the irony being that many of us can’t bloody march in the first place.
I am sick to the back teeth of the ablesism of this scummy so called government, of the press, the public and of course much of mumsnet.
I am a retired nurse who spent most of my life looking after others until I became disabled through no fault or choice of my own. I loved my job and lost my whole identity when I had to give it up.
I am now housebound with advanced arthritis and degenerative disc disease. I can barely walk a few steps even with crutches, can’t stand for more than a minute without severe pain and leg giving out, can’t sit for more than a few minutes without pain, spend most of my life on my bed.
I also have stage 4 cancer and immune related colitis from treatment side effects. I have anxiety and depression, OCD and panic disorder. I am newly diagnosed with autism. I live in constant chronic pain. I can no longer bath or shower, cook, drive let alone do the things I used to love like ride or walk in the countryside or garden. I struggle with social contact and my anxiety is so bad I can’t even open my own post. My depression is so bad I am now only allowed a week worth of my huge regime of medication at a time.
Life is not exactly a bowl of cherries.
Despite all this I am apparently a lazy scrounger who this country cannot afford to sustain with “handouts”.
When I renew my PIP claim I have to vomit out all my symptoms and the many embarrassing truths about my so called life for some unqualified unsympathetic DWP robot masquerading as a human being to pick through to see if I am deserving enough.
Believe me if I could possibly afford not to go through this torturous process I would.
As for help and adaptations well I asked for a disabled facilities grant because I have not been able to bath or shower for five years. Although I qualify as clearly in need because I get a tiny nurses pension I am assessed as rich enough to pay the first £7k myself even though social services assessment team had copies of my bank statements and could see I have nowhere near this amount in savings. So it seems I will never be able to bath or shower for the rest of my life.
Every time there is a story in the press or a thread here on mumsnet about disabled people being frauds/cheats/bone idle I feel under attack and as if I am hated. I feel I often can’t tell anyone I claim PIP because I will be judged. This adds enormously to the stress and worry of everyday life. If I ever fell out with someone would they decide to lie that I was a fraud and spread stories or make malicious report to dwp?
So when you think about us as work shy scroungers draining the country dry with our insatiable and unsustainable benefit grabbing ways just remember this could happen to you too one day and only then will you truly appreciate the damage your views and your words cause.

Good morning vipers,

Just playing catch up after giving my Dad breakfast and comforting him as he cried over our particular current situation. Quite something seeing a naval nuclear test Veteran in absolute bits over the shambles that is elderly care, which is a whole other can of world but somewhat adjacent.

And I am now leaking having read this post.

All I can say right now is I'm so sorry. So fucking sorry. When I've re-starched my upper lip I'll be ready to re-enter the fray somewhat intermittently in between my UC spot check phone call and jumping through housing hoops. But in the meantime, Sending love and solidarity.

Willyoujustbequiet · 30/04/2024 10:11

Elleherd · 29/04/2024 23:04

May i hold your coat, Mistress?

I can help hold your coat too.

I reported them on a recent thread because they told a vulnerable poster to die under a bridge.

ThisOldThang · 30/04/2024 10:18

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Rosscameasdoody · 30/04/2024 10:18

ThisOldThang · 30/04/2024 09:15

Reduced capacity for work

  • that seems to be very open ended and could mean anything.

Need to use taxis as prohibited from driving

  • I don't think anybody would object to somebody with severe physical or learning disabilities getting taxis when there's no viable public transport. People that simply prefer not to use public transport, not so much.

Needing to buy ready meals or take aways

  • Again. I can see how this could apply to the infirm, leaning and physically disabled. I don't consider 'burning the food and needing to order a takeaway' to be at all convincing.

Needing to buy adaptive clothing

  • Sure. I'm happy to find that for amputees, etc, but not for sensory complaints - "i can only sleep on pure silk sheets. Give me a grant."

Needing to pay for treatments and therapies not covered by the NHS

  • Perhaps. It depends what it is.

Paying for a cleaner

  • For the infirm, learning and physically disabled.

Paying for a gardener

  • Same as a cleaner, but with a maximum garden size - e.g. maximum of 10mx10m front and back.

Paying for a car

  • Maybe.

With every single post, you are demonstrating that you know absolutely nothing about what PIP is intended for, or how it’s assessed. Despite the fact that it’s been explained to you to the point of exhaustion. From your behaviour on this thread and a previous one I’m now beginning to think you’re a troll, because I can’t believe someone would stick to the same warped narrative in the face of so much evidence to the contrary.

Let’s take your points one at a time. Reduced capacity for work is completely irrelevant as it has nothing to do with PIP - and PiP is what this thread is about isn’t it ? It doesn’t assess the ability to work - the assessment criteria for this belong to the work capability assessment and similarly to PIP this assesses how the effects of disability impact on the ability to work - but using a completely different set of activities to assess. I’m not going into detail about how this is achieved because all of the information is there, you only have to google it - suffice to say nothing about the assessment is ‘open ended’ or without specific meaning.

The mobility assessment does not consider the ability to use public transport, or the availability of it. At all. So there is no a question of that particular component of PIP being awarded just because someone prefers not to use public transport. That’s ludicrous.

The cooking test for PIP sets a high bar and like all the criteria looks at whether the claimant can carry out the task safely and to a reasonable standard, in a reasonable time frame - in this case cooking a meal from scratch using fresh ingredients, not takeaways or ready meals, but actually peeling, chopping and cooking fresh ingredients. The assessment assumes they are either standing or sitting at a counter top with all the ingredients and utensils needed placed in front of them. It does not consider the ability to use a conventional oven, only those appliances which are within reaching distance. Again, as with all the other descriptors, PIP also considers whether the claimant is safe whilst carrying out the task, whether they need assistance from someone else, or whether they need special aids or appliances to be able to better carry out the task. It also looks at how long it takes them and the effect that doing the task has on their ability to do other things - for example if a cancer patient would be so tired after cooking a meal in this way that they would be unable to do anything else without resting. It does not, as you so ignorantly suggest, award benefit for people simply because they burn food and have to order a takeaway.

PIP doesn’t assess for the need for adaptive clothing. It assesses the ability to be able to dress upper and lower body in standard clothing, how much help the claimant needs doing it and whether they could use aids or adaptations to help them. The assessors are absolutely not allowed to suggest that the claimant uses, or could use any form of adaptive clothing as an alternative as the criteria are designed to assess how well the claimant manages with normal everyday clothing, and suggesting they can use something specifically designed for disability in this context is discriminatory. And your assertion that sensory disabilities are somehow not deserving of consideration and that claimants would spend the money on silk sheets as the norm is ableist. Not to mention utter bollox.

The assessment for therapies the claimant needs, doesn’t focus on the cost of those therapies or whether NHS provides them. It focuses on any therapy or treatment taking up various periods of time, which the claimant needs to undertake at home, and which is recommended by a healthcare professional. It’s intended to give an idea of the severity of the disability, and therefore an idea of any significant ongoing cost, such as help carrying out the therapy or treatment.

The ability to clean a house is not assessed by PIP. So you can’t claim directly for that. Claimants can use their PIP award to pay a cleaner - the way PIP is paid at the moment, there is no restriction on how the benefit is used.

Same with paying for a gardener. Not assessed for. And your assertion that disabled people should be restricted in the size of garden they are allowed to have is ableist, discriminatory and downright offensive.

The mobility assessment of PIP is paid at two rates. The standard rate is paid to those with milder mobility problems which may be caused by physical or mental health conditions, or a combination of both, who find it difficult to travel unaccompanied or have to use mobility aids to walk, and who would benefit with help towards the cost of getting about. The enhanced rate, and I cannot stress this enough, is only paid to those disabled people who have high levels of need. Those claiming the enhanced rate are the only claimants who can lease a car through motability. They are assessed as having significant difficulty in moving around and the enhanced category includes some of the very most disabling conditions. For these people, the opportunity to lease a car is seen as the cheapest and most practical way of staying mobile and being able to engage in society - including work.

You, and several other posters here have lost sight of the fact that disability benefits do not cover all of the extra cost of disability. The assessment is designed to assess how disabled someone is as they go about their everyday life, and the higher the level of impairment, the higher the assumed cost. It then makes the appropriate contribution towards those costs based on the assessed need.

It’s by no means a perfect system but its design didn’t come about by accident. The government knows that making a contribution towards the extra cost of disability by assessing in this way is the cheapest way of doing things. If we start looking at what things actually cost in terms of living with disability, the real expense faced by disabled people would quickly become evident and it would be much more expensive to target effectively to provide any meaningful support. That’s why a contribution is made, and it’s left up to the claimant to decide how best to spend the money - after all, they are the one with the disability and they know their own needs best. What you’re actually saying is that this autonomy should be taken away because disabled people can’t be trusted not to spend their disability benefits on silk sheets and other luxuries. When you consider the difficulties faced by these people on a daily basis, that attitude is utterly abhorrent and you should be ashamed of yourself.

I’ve reported this thread because the ignorance, and ableist and discriminatory comments are not helping anyone. Least of all the OP.

Elleherd · 30/04/2024 10:19

@GoodnightAdeline (responding to idea that few disabled are in S/H - council, with gardens)
Here, unless you're rich, if you're wheelchair disabled you're automatically in a ground floor flat, usually of a converted house with a garden, that you must maintain including if it is actually physically inaccessible to you.
There are definitely large numbers of wheelchair bound people in London in this position, who take the single housing offer made, grateful to be housed.

I'm simply trying to help you see what people may mean when they say a gardener is someone they have to hire because they're disabled.

Of course society can’t mitigate every last thing for everyone, it can barely mitigate the basics!
Precisely why a 'leveling up' payment is awarded and you then have to cut your cloth to it, rather than needs based which would be prohibitively expensive.
In many cases inc. mine, the payment that allows me to go out to work, must also cover an increasingly large amount of other things, and while I work, I'm automatically often underpaid because I have to accept whatever pay I can get for my labour even if it is less than NMW,, because I have to take whatever contracts I can get and not be choosy, because of the state of me.

Rosscameasdoody · 30/04/2024 10:20

Elleherd · 30/04/2024 10:19

@GoodnightAdeline (responding to idea that few disabled are in S/H - council, with gardens)
Here, unless you're rich, if you're wheelchair disabled you're automatically in a ground floor flat, usually of a converted house with a garden, that you must maintain including if it is actually physically inaccessible to you.
There are definitely large numbers of wheelchair bound people in London in this position, who take the single housing offer made, grateful to be housed.

I'm simply trying to help you see what people may mean when they say a gardener is someone they have to hire because they're disabled.

Of course society can’t mitigate every last thing for everyone, it can barely mitigate the basics!
Precisely why a 'leveling up' payment is awarded and you then have to cut your cloth to it, rather than needs based which would be prohibitively expensive.
In many cases inc. mine, the payment that allows me to go out to work, must also cover an increasingly large amount of other things, and while I work, I'm automatically often underpaid because I have to accept whatever pay I can get for my labour even if it is less than NMW,, because I have to take whatever contracts I can get and not be choosy, because of the state of me.

Edited

This.

GoodnightAdeline · 30/04/2024 10:21

ThisOldThang · 30/04/2024 10:07

That graph doesn't seem to be showing any signs of levelling off at £35 billion...

Literally not a single person arguing against controls on benefit spending will address that projection
Not. A. Single. One

3usernames · 30/04/2024 10:27

GoodnightAdeline · 30/04/2024 10:21

Literally not a single person arguing against controls on benefit spending will address that projection
Not. A. Single. One

You address it through prevention not through stopping the support of people already in need. You look at why are so many people becoming disabled and work on preventative measures early on (which is also unpopular).

Noras · 30/04/2024 10:28

A) there isn’t that facility and B) many autistic young people struggle with public transport."

A) Write to your local council and suggest it.
B) Preferring a taxi isn't a valid reason to have the taxpayer fund a taxi. Autistic young people need to learn to function in society as best they can. Overcoming an aversion to public transport seems to be essential IMHO.

To be clear it’s not overcoming an aversion to public transport - it is learning to overcome the feeling of pain to intense neural input akin to being electrically shocked.

The ASD brain cannot field out sensory input so they feel light touch acutely, they sense smell and noise more and they have no filter.

They have to learn to overcome ‘pain’ - that’s the more appropriate word. So you want them to be tortured in other words so that they can function in society. Why not refuse taxis to people with CP?

The saddest thing is that my son wanted to always stay home even when offered the zoo or a museum or theme park. It’s taken years to get him used to going out and constant repeated trips going out. But even with buses at times he would rather walk 3 miles or get wet at times then get on that bus. The thing is his PA or me will also have to get wet or walk 3 miles. I have spent years walking him home from school about 2,5 miles each way because he refused the bus from time to time - we even had free bus passes as part of SEN transport. None of this is choice by me that’s for sure. I’m not sure the state can make a PA wait for hours in the pouring rain it might make recruitment of PA hard and their wages might have to increase. So what do you suggest then? Make the PA also suffer or make the PA pick up a 20 year old man and chuck him on a bus?

GoodnightAdeline · 30/04/2024 10:28

3usernames · 30/04/2024 10:27

You address it through prevention not through stopping the support of people already in need. You look at why are so many people becoming disabled and work on preventative measures early on (which is also unpopular).

It’s mental health driven, and also neurodivergence.

In the case of the latter what can you do?

wemademagic · 30/04/2024 10:32

Perhaps if I simplify it - if you have a patch of soil and you sprinkle on 10mg of water and you shout, ‘fucking grow, why aren’t you growing?’, it won’t.

If you buy the correct soil, seeds, feed, water and sunshine you get a nice garden.

You have to pay in to get something back. If people with disabilities and mental health issues are supported correctly from the offing, if GPs and HCPs are valued and respected more, if public services are funded better, if housing is done correctly and more affordable, if education caters for all, if workplaces support neurodivergent employees, if people have chances and opportunities, then people thrive more readily, there may be less disabilities, the workforce increases, some spending goes down. Levels of intergenerational trauma, poverty, substance misuse, obesity and preventable cancers drop, spending goes down.

Perhaps if we didn’t fuck about wasting billions on failed schemes and policies, too, hmmm?

You have to put money in to care for people correctly on the first instance though. Whipping out their life from under them and screaming at them for not being as you want them to be doesn’t work. It will only make the problem significantly worse.

Its easy to blame vulnerable people when the real fault lies within our entire society, and our government.

3usernames · 30/04/2024 10:32

GoodnightAdeline · 30/04/2024 10:28

It’s mental health driven, and also neurodivergence.

In the case of the latter what can you do?

In the case of mental health and neurodivergance (which often coexist) you support the individual in a way that suits their needs. Remember these individuals used to be thrown in an asylum and left to rot in years gone by, thankfully we are more humane now and welcome everyone into society. With that comes the responsibility to look after them, and that means financially supporting them to be able to live as independently as they can.

GoodnightAdeline · 30/04/2024 10:34

3usernames · 30/04/2024 10:32

In the case of mental health and neurodivergance (which often coexist) you support the individual in a way that suits their needs. Remember these individuals used to be thrown in an asylum and left to rot in years gone by, thankfully we are more humane now and welcome everyone into society. With that comes the responsibility to look after them, and that means financially supporting them to be able to live as independently as they can.

But how do we ‘support them in a way that suits their needs’ when the increasing number of people ‘needing’ is unaffordable and spiralling?

wemademagic · 30/04/2024 10:35

GoodnightAdeline · 30/04/2024 10:28

It’s mental health driven, and also neurodivergence.

In the case of the latter what can you do?

Re neurodivergence - a great deal actually.

Have just spent six months working with HEI to introduce measures to improve staff and student attendance by working on equality and diversity, improving experience for all neurodivergent staff and students. Most of it very simple common sense measures.

Final report was 40 pages long. There is a huge amount we can do. We just need to actually do it.

GoodnightAdeline · 30/04/2024 10:35

And the asylums ended in the 1980s. There was a 25 year gap between then and the sudden appearance and rise of ND people with extreme needs.

3usernames · 30/04/2024 10:36

GoodnightAdeline · 30/04/2024 10:34

But how do we ‘support them in a way that suits their needs’ when the increasing number of people ‘needing’ is unaffordable and spiralling?

A large number of PIP claimants work - as has been repeated many times in this thread. We support them by helping as many as possible enter or stay in the workforce in any capacity.

Elleherd · 30/04/2024 10:36

GoodnightAdeline · 30/04/2024 10:21

Literally not a single person arguing against controls on benefit spending will address that projection
Not. A. Single. One

I am not arguing against controlling benefit spending, I am arguing against the ways being proposed of achieving it, and the goady ignorance from specific posters who just want to punch down.

A big part of the reason we have a rising MH crisis amongst the young working age population, Which is what everyone sensible is really concerned about, is because the services needed to create good MH, prevent poor MH, or learn how to live better with it, adapt to differences etc, have been cut to the bone and often no longer even exist at all. And then we forced them through lockdown and wondered why the figures spiraled.
We used to put money into preventing poor mental health in the young, now we just firefight the inevitable end results of ignoring all warning signs until they have become past the stage of ignoring.

GoodnightAdeline · 30/04/2024 10:36

Literally nobody is answering where the money will be found if the projection continues 😂 why not

GoodnightAdeline · 30/04/2024 10:36

3usernames · 30/04/2024 10:36

A large number of PIP claimants work - as has been repeated many times in this thread. We support them by helping as many as possible enter or stay in the workforce in any capacity.

How many work?

Elleherd · 30/04/2024 10:40

GoodnightAdeline · 30/04/2024 10:36

How many work?

Why don't you go and do the research instead of insisting everyone does everything for you?

wemademagic · 30/04/2024 10:41

GoodnightAdeline · 30/04/2024 10:36

Literally nobody is answering where the money will be found if the projection continues 😂 why not

If we can find billions to leave the EU I’m fairly certain we can find billions to support others. At this point I’m sure you’re being deliberately ignorant. I suggest you spend your day off (as clearly you aren’t at work - if you are, you’re wasting your time here!) educating yourself. I can provide you with some useful links should you wish.

I’m off to finish my dissertation and a presentation I’m delivering next week, both on these very issues. Cheery bye now.

TigerRag · 30/04/2024 10:41

GoodnightAdeline · 30/04/2024 10:36

Literally nobody is answering where the money will be found if the projection continues 😂 why not

They could start by getting rid of Capita and face to face assessments. They could save a bit by getting the decision right the first time

They could bring back lifetime awards for those of us who are unlikely to improve

Rosscameasdoody · 30/04/2024 10:41

GoodnightAdeline · 30/04/2024 10:21

Literally not a single person arguing against controls on benefit spending will address that projection
Not. A. Single. One

And Not.A.Single.One of those advocating for the cuts will address the fact that these cuts are ideological rather than necessary. The Tories have always hated disability benefits and over the last fourteen years have done their best to reduce the numbers who qualify for them by any means fair or foul. This is just another ‘look over here’ tactic employed by the Tories to distract from the dogs’ dinner they’ve made of the country since coming to power. And the sick and disabled are always the low hanging fruit, first to be picked for the cuts.

I don’t doubt that the disability benefits system could be cut considerably if the government looked closely at the assessment process and employed properly qualified doctors to carry out assessments rather than the under qualified and poorly trained ‘disability analysts’ who in many cases have neither the qualifications nor the experience to assess the very conditions they’re looking at. This would offer fairer assessments and reduce the need for the expensive tribunals which are currently the only way some claimants can get a fair assessment and award.

They could also look at closing the PIP system to temporary conditions - at the moment a condition has to have been present for at least three months and expected to last another nine to qualify. This criteria could be broadened without too much impact on the more severely disabled who genuinely need support. As things stand, it’s the severely disabled who will once again bear the brunt of the cuts because, as the government very well knows, it they who cost the most to support.

And as far as I know, no-one has addressed the question I asked upthread. If the cuts were aimed at child benefit and childcare/nursery costs, would people still be as zealous in their support for them. I think not.

MistressoftheDarkSide · 30/04/2024 10:44

wemademagic · 30/04/2024 10:32

Perhaps if I simplify it - if you have a patch of soil and you sprinkle on 10mg of water and you shout, ‘fucking grow, why aren’t you growing?’, it won’t.

If you buy the correct soil, seeds, feed, water and sunshine you get a nice garden.

You have to pay in to get something back. If people with disabilities and mental health issues are supported correctly from the offing, if GPs and HCPs are valued and respected more, if public services are funded better, if housing is done correctly and more affordable, if education caters for all, if workplaces support neurodivergent employees, if people have chances and opportunities, then people thrive more readily, there may be less disabilities, the workforce increases, some spending goes down. Levels of intergenerational trauma, poverty, substance misuse, obesity and preventable cancers drop, spending goes down.

Perhaps if we didn’t fuck about wasting billions on failed schemes and policies, too, hmmm?

You have to put money in to care for people correctly on the first instance though. Whipping out their life from under them and screaming at them for not being as you want them to be doesn’t work. It will only make the problem significantly worse.

Its easy to blame vulnerable people when the real fault lies within our entire society, and our government.

This. This in spades.

And the bit about spunking money on failed schemes and initiatives is hugely relevant- things that look fine and dandy on paper, but nothing concrete materialises for the targeted "problematic to the economy" groups.

I think it's no coincidence that AI is being introduced as part of the proposed measures, because this is a primary area of "economic growth and progress" - so which major tech corporation has offered a proposal to the government under the pretence of saving money for a large chunk of tax payers dollar first?

As many posts here demonstrate, issues around health and disability are extremely complex. The lack of human input to analyse and sift through evidence will mean that algorithms- which are built by humans remember with biases and agendas - will mean that people will be kicked on and off the system and the chances of getting human input will be even more difficult than it is now.

Complex cases are already passed around agencies like a hot potato. Important information is not recorded, recorded wrongly, dismissed etc already.

Thus will get worse - and ultimately cost more money to put right that's even if the claimants involved are able to keep plugging away in the bureaucratic mire on top of their existing challenges.

Dystopia. We are migrating to Dystopia.

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