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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Ok who wants to swap £2500 a month in benefits for my husbands MS and my epilepsy, narcolepsy and fibromyalgia.

1000 replies

bluebirdblackbird · 30/04/2025 02:30

Well according to a lot of people on here we are on a good thing.

the 20 seizures I have in a week, chronic pain and night terrors, losing my memory after a seizure, pissing myself, hallucinations. They are all great fun. Not to mention the amount of times I have been accused of being drunk after a seizure.

or there is my husband. Diagnosed with progressive MS. Cronic Pain, shaking, cronic pins and needles, weakness in limbs plus losing mobility. Had to give up his teaching job 4 months ago after gradually reducing hours.

Not to mention the judgement when we use a blue badge because we look ok in that moment. And apparently labour are going to find us both work. Yippee cant wait to meet the employer who is going to take us both on. I am sure pissing my chair on a reg basis won’t matter to them or the losing counciouness at least a couple of times a day.

i am just fed up of yet another they are on benefits and get money and it’s not fair stamp stamp stamp. The bastards have saved up for a holiday- it’s not fair. The bastards have a mobility car but they look fine, OMG- they have got new carpets or a new sofa.

since I am guessing they none of the moaners would actually swap places with us if they could then STFU.

oh and that pip that is easy to get- my husband gets lower rate for both and that is despite providing all the evidence and appealing so we are off to tribunal. He can’t even dress himself most days and he can’t hold a pan safely or manage his medication plus many other things. If he stays on the points he is on he will lose his pip completely under these new labour proposals.

but most people know someone who’s friends, aunts, nephews, stepdaughters, cousin twice removed who lied and got it. I was taking to a lady in a wheelchair who does not get any mobility component of pip at all.

OP posts:
Thread gallery
5
CentralLimit · 01/05/2025 18:57

@Bumpitybumper

Look, I'm glad you're softening your claims but honestly I don't know how you can look at 4% and dig your heels in.

4%.

That just isn't swinging an election, no matter what cherry picked trends you think you see.

And if you're concerned about the far right getting in, the evidence suggests that comprehensive welfare systems - including adequate disability benefits - is actually protective against this.

www.tandfonline.com/doi/abs/10.1080/01402382.2021.1886498?journalCode=fwep20&src=&utm_source=chatgpt.com

ASimpleLampoon · 01/05/2025 18:59

I am a carer to my autistic son so if dh and I had those God knows what would happen to him and DD12

Bumpitybumper · 01/05/2025 19:07

CentralLimit · 01/05/2025 18:57

@Bumpitybumper

Look, I'm glad you're softening your claims but honestly I don't know how you can look at 4% and dig your heels in.

4%.

That just isn't swinging an election, no matter what cherry picked trends you think you see.

And if you're concerned about the far right getting in, the evidence suggests that comprehensive welfare systems - including adequate disability benefits - is actually protective against this.

www.tandfonline.com/doi/abs/10.1080/01402382.2021.1886498?journalCode=fwep20&src=&utm_source=chatgpt.com

You seem unable to move on from the 4% figure. We have actual evidence that when the government actually cut disability benefits (i.e. the PIP reforms) far more than 4% support them. Polls conducted at the time show this

The trend is clear from 1998 -2021 . There is no cherry picking going on. Support is dropping and the fact you claim it's increasing in the long term is unfathomable. I can't even be bothered debating this as it's in black and white and evident to all.

BooneyBeautiful · 01/05/2025 19:10

Flopsythebunny · 01/05/2025 15:04

Unfortunately, the ones that I got through the incontinence nurse made the whole of my genital area blister. one of the conditions I have is lichen sclerosis which flares up frequently using their pads

Oh no! That's not good. Incontinence pads are not cheap!

CentralLimit · 01/05/2025 19:22

Bumpitybumper · 01/05/2025 19:07

You seem unable to move on from the 4% figure. We have actual evidence that when the government actually cut disability benefits (i.e. the PIP reforms) far more than 4% support them. Polls conducted at the time show this

The trend is clear from 1998 -2021 . There is no cherry picking going on. Support is dropping and the fact you claim it's increasing in the long term is unfathomable. I can't even be bothered debating this as it's in black and white and evident to all.

What I actually said is that support for cuts is persistently extremely low. Reposting the link here incase anyone would like to verify this for themselves (page 12). It certainly is there in black and white!

Don't blame you for bowing out though, I'd do the same in your position 😅

natcen.ac.uk/sites/default/files/2023-09/BSA%2040%20Poverty.pdf

LadyKenya · 01/05/2025 20:00

uncomfortablydumb60 · 01/05/2025 13:13

With the changes to the descriptors coming in November it is easier to get 4 points
i have CP and my previous highest was 3 points.
I will get 4 points on 3 descriptors then.
The point of the new descriptors is to disqualify less severe conditions who can wash and dress themselves and cook a simple meal, therefore being able to work.
just because people claim, doesn’t mean they receive an award.
I’m furious they have imposed these cuts on the most vulnerable and instead still spend billions on overseas aid which could be reduced Not to mention housing the migrants
Labour appear to find every loophole to avoid paying taxes and the facts are emerging now.
I voted labour as I thought they would support the most vulnerable but they have u turned on their promises
Reform have 4 years yet to come up with their plans
Whilst I don’t like Farage as a person, I believe he has the country’s best interest at heart

Ah, the old migrants theme raising its head again. Don't worry, people will lay off bashing disabled people, and blaming them for the Country having no money, and turn their attention to them ole migrants again in due course.

Rosscameasdoody · 01/05/2025 20:11

thegoodlifeha · 01/05/2025 18:29

If only it were that simple…

Exactly. What most people would describe as prompting or reminding and what a DWP assessor thinks are two entirely different things. IME unless people have engaged with the assessment process in some way they have no idea just how difficult PIP is to claim. So every time government wants to cut these benefits they don’t have to make much of an effort because people believe the shit churned out by press and media repeating the same tired old tropes about scroungers and cheats and how disability benefits are given out to anyone who asks.

Rosscameasdoody · 01/05/2025 20:33

Bumpitybumper · 01/05/2025 13:04

If it's a necessity then it should be equally available to everyone. This means the government should look at funding able bodied people's holidays too.

If it's a luxury then I believe nobody should have their holiday government funded. We simply don't have the money or resources to fund luxuries for people when so many people are going without the very basics.

Do you seriously think that parents claiming child benefit don’t save it for holidays or major purchases ? Because a trawl through MN threads will tell you that they most definitely do. How is that any different ? There’s a double standard going on here and you’re forgetting one important fact. PIP is not an out of work benefit, so you’re effectively telling people who work and claim PIP that they can’t have a holiday.

You have a very odd idea of why PIP is paid. It isn’t for specific disability related expenditure. It’s paid in recognition of the significant extra cost of disability and the barrier that presents to disabled people being able to fully participate in society. There is no restriction on how it is spent, and nor should there be. Disabled people are best placed to decide how best PIP can support them, and if that enables them to save a bit for a holiday they couldn’t otherwise afford, then l think it’s pretty small minded to single them out for scrutiny given how difficult their lives already are.

and how do you propose to police it ? Because decreeing that just the disabled should be up for scrutiny is clear discrimination. You would have to police all other benefits to ensure no claimant is taking a holiday. It’s batshit and mean spirited.

WatchingCometsLand · 01/05/2025 20:55

CentralLimit · 01/05/2025 19:22

What I actually said is that support for cuts is persistently extremely low. Reposting the link here incase anyone would like to verify this for themselves (page 12). It certainly is there in black and white!

Don't blame you for bowing out though, I'd do the same in your position 😅

natcen.ac.uk/sites/default/files/2023-09/BSA%2040%20Poverty.pdf

I did check, and can corroborate. Support for taking benefits away from the disabled is persistently low. It really is there in black and white. I don't know what you're playing at @Bumpitybumper.
Beyond that, I think your concern about the fat right is disingenuous. Very much sound like you're saying we have to adopt their policies or else they'll get in power....

Rosscameasdoody · 01/05/2025 20:55

uncomfortablydumb60 · 01/05/2025 13:13

With the changes to the descriptors coming in November it is easier to get 4 points
i have CP and my previous highest was 3 points.
I will get 4 points on 3 descriptors then.
The point of the new descriptors is to disqualify less severe conditions who can wash and dress themselves and cook a simple meal, therefore being able to work.
just because people claim, doesn’t mean they receive an award.
I’m furious they have imposed these cuts on the most vulnerable and instead still spend billions on overseas aid which could be reduced Not to mention housing the migrants
Labour appear to find every loophole to avoid paying taxes and the facts are emerging now.
I voted labour as I thought they would support the most vulnerable but they have u turned on their promises
Reform have 4 years yet to come up with their plans
Whilst I don’t like Farage as a person, I believe he has the country’s best interest at heart

The changes to PIP will be implemented in November 2026. You are talking about ‘new descriptors’ but currently there are no plans to change any of the descriptors at all - let alone to make it easier to score points. Why would they do that when the intention is to reduce the number of claims ?

l think you’ve misunderstood. The only change will be that claimants will have to score four or more points in at least one category of daily living to qualify at all, regardless of the overall points scored. That will make it much harder for claimants to qualify, not easier and the thinking from disability experts and charities is that up to 1.2 million people will lose benefit altogether as a result.

Rosscameasdoody · 01/05/2025 21:08

LadyKenya · 01/05/2025 20:00

Ah, the old migrants theme raising its head again. Don't worry, people will lay off bashing disabled people, and blaming them for the Country having no money, and turn their attention to them ole migrants again in due course.

There’s something really odd about this post too. The poster seems to be under the impression that the PIP descriptors will change to make it easier to score 4 points in any daily living descriptor. There are no plans to change any of the descriptors. The only change will be the mandatory scoring of four points in one daily living descriptor as the qualifier, regardless of the overall points scored. PIP will be hugely more difficult to claim even for those with significant disability, so l’m not sure how this poster has arrived at the conclusion that it will get easier when that would defeat the purpose of the change.

LadyKenya · 01/05/2025 21:17

Rosscameasdoody · 01/05/2025 21:08

There’s something really odd about this post too. The poster seems to be under the impression that the PIP descriptors will change to make it easier to score 4 points in any daily living descriptor. There are no plans to change any of the descriptors. The only change will be the mandatory scoring of four points in one daily living descriptor as the qualifier, regardless of the overall points scored. PIP will be hugely more difficult to claim even for those with significant disability, so l’m not sure how this poster has arrived at the conclusion that it will get easier when that would defeat the purpose of the change.

Edited

I agree, they are spouting misinformation that could cause upset for some people, and when challenged claims not to know how to link anything. Anyone would know that the Government would seek to make scoring a 4 for whichever descriptor harder, not easier for goodness sake! Odd indeed.

BottleBlondeMachiavelli · 01/05/2025 21:27

There’s some very odd posting this week.

I wonder if it’s all the Reform supporters?

caringcarer · 01/05/2025 21:28

EnhancedVampireEyeballs · 30/04/2025 04:45

Oh god, I feel your pain. My epilepsy is not well controlled by meds, and the seizures, the dropping to the ground often cracking my head off the pavement, the seizing in public, being gawked at whilst pissing myself in the middle of the street, losing huge chunks of time, and often my memories for days. I'll be honest, it's made me suicidal. It's a fucking never-ending nightmare.

I also have Crohn's Disease, I have been in utter agony for days now with my current flare-up. I have shit myself several times in the past two days. I challenge any fucker to swap lives with me. I don't even qualify for any benefits, but aside from that, losing my career, my quality of life, my independence, my dignity, has broken me.

None of that wittering is helpful to you, but please know that you are not alone, and I understand how unbearable it is

You should absolutely get PIP payments.

caringcarer · 01/05/2025 21:30

BottleBlondeMachiavelli · 01/05/2025 21:27

There’s some very odd posting this week.

I wonder if it’s all the Reform supporters?

Reform are not cutting disability payments it's Labour.

Rosscameasdoody · 01/05/2025 21:34

caringcarer · 01/05/2025 21:30

Reform are not cutting disability payments it's Labour.

Judging by what l heard from snippets of the Reform party conference there would be no disability payments to cut - their stance seems to be the complete obliteration of them so that the disabled are either reinstitutionalised or reliant on either family or social services care. Sixty years of progress wiped out.

BottleBlondeMachiavelli · 01/05/2025 21:45

caringcarer · 01/05/2025 21:30

Reform are not cutting disability payments it's Labour.

I know but there are some very “Reform” sounding contributions on this thread and others.

It’s fear of Reform that’s sent Labour into this uncharacteristic panic spiral of cutting anyhow.

BottleBlondeMachiavelli · 01/05/2025 21:46

caringcarer · 01/05/2025 21:30

Reform are not cutting disability payments it's Labour.

It’s quite sweet the way you phrase that as though Reform has the power to make major policy changes, though. You’ll have a wait, yet.

WiddlinDiddlin · 01/05/2025 21:52

Jabtastic · 01/05/2025 17:54

What annoys me is that there is a cohort of people whose disability becomes their identity. They tend to have high functioning autism, mild depression, fibromyalgia. They spend a lot of time online making demands and in identity groups. 'Neurospicy'. 'Fibro warriors'. You know the type- and it's certainly not all the people with these conditions but they are a noisy minority with lots of time on their hands. Some of them are barely out of school or uni.

The people I know with genuine physical disabilities and severe mental illness are just getting on with it as best they can. They work, they have families, they survive. They tend to be pretty stoic.

Society has always been inclined to support the latter. It's the first group who in my opinion have started causing resentment, plus the scammers claiming to be ill with unverifiable conditions. It really angers me that genuinely disabled people are getting caught in the trawl because the government are too cowardly to directly address the people they WANT to target. It is pure cowardice.

That's just them though, that's because across any group of humans, some of them will be insufferably irritating pricks.

You'll find it absolutely anywhere you look, people making some tiny thing their entire identity and wanging on about it endlessly.

They used to be limited to small in person social groups or the odd internet forum, now they're all over TikTok and Insta... but such is life, this is the way we apparently live now.

CoastalCalm · 01/05/2025 22:02

I think people are deliberately missing what the government said about the realignment of the benefits structure so more can be done for the most in need like you and your husband

WeylandYutani · 01/05/2025 22:10

CoastalCalm · 01/05/2025 22:02

I think people are deliberately missing what the government said about the realignment of the benefits structure so more can be done for the most in need like you and your husband

OP said that Labour will be expecting both her and her husband to work, which suggests they will get caught up in the benefit changes.

If they don't score 4 points in one aspect of daily living in PIP, then yes, they will have to look for work

EilonwyWithRedGoldHair · 01/05/2025 22:41

@uncomfortablydumb60

Whilst I don’t like Farage as a person, I believe he has the country’s best interest at heart

That's a joke, right? He has his own interests at heart and nothing else.

Jabtastic · 01/05/2025 23:52

WiddlinDiddlin · 01/05/2025 21:52

That's just them though, that's because across any group of humans, some of them will be insufferably irritating pricks.

You'll find it absolutely anywhere you look, people making some tiny thing their entire identity and wanging on about it endlessly.

They used to be limited to small in person social groups or the odd internet forum, now they're all over TikTok and Insta... but such is life, this is the way we apparently live now.

I agree but their reach through social media means more people see their insufferable wanging on and harden their hearts against disabled people generally. Because these absolute bellends act like 'the only disabled in the village' and act like narcissistic children. Blue hair and septum piercings are part of the uniform and they like a good screaming hyperbole video at the idea they might have to work ever.

Meanwhile the actual disabled people are either quietly grafting away OR quietly trying to stay alive, often in bed dependent on family or external carers.

WeylandYutani · 02/05/2025 00:01

Jabtastic · 01/05/2025 23:52

I agree but their reach through social media means more people see their insufferable wanging on and harden their hearts against disabled people generally. Because these absolute bellends act like 'the only disabled in the village' and act like narcissistic children. Blue hair and septum piercings are part of the uniform and they like a good screaming hyperbole video at the idea they might have to work ever.

Meanwhile the actual disabled people are either quietly grafting away OR quietly trying to stay alive, often in bed dependent on family or external carers.

I don;t thing part of a PIP assessment is asking if yu post about your disabilty onliine, as a way to judge if you are genuine or not

And it is distrubing tot think that you must put up and shut up about your disabilties otherwise it means you are not genuine.

I do know some people who post on Tik Tok etc about their illness and struggles. It is how they cope with them. And a couple of the ones i know are middle aged, not early 20s with blue hair and piercings.

sorry for the typos. I dont have the spoons to correct anything right now

BlackeyedSusan · 02/05/2025 00:08

Yabu. They don't want the money. They just don't want you to have it either.

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