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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
ArchesOfsunflowers · 30/04/2024 16:52

tocancelthis · 30/04/2024 16:42

Will they though?

In the five years before my mum was diagnosed with dementia - I quote:

ESA assessment - mum on the floor actively fitting, me trying to support her and explain to the bewildered ATOS assessor what was happening (despite the fact that they claimed to be a GP…)

Assessor - ‘but she isn’t doing this every minute of every day is she? I mean surely you could work and just stop, have the seizure and then carry on working? That shouldn’t stop you from a job somewhere.’

ESA again -

Work coach - ‘I see no reason why your mother cannot work, and she legally has to attend a computer training programme where she will learn new skills to get a job, or her benefits will stop.’

When I explained mum couldn’t go without a carer as she was getting lost in her own neighbourhood never mind make a 50 min bus journey alone - ‘that’s not what I’m asking, her work capability assessment says she’s perfectly capable of working, to refuse is ridiculous.’

PIP -

‘Given she is only unconscious for 30-40 minutes of the day 4-5 times a week there is no reason she cannot care for herself otherwise.’

In the end we had to go through tribunal and mum won the maximum amounts - but in that time my mum had very, very little money and zero quality of life, lost 5 stone through not eating (despite me ordering her food off my own minimum wage job at the time). She was permanently freezing cold as she refused to use the heater.

I had to move in with her and stop working. I was told to claim UC, money taken off mum to give to me. Then I was told to apply for CA. Then I was told they’d given me too much UC and I was slapped with a £400 bill. Remember the DWP ringing me and the voice on the other end ‘£400 isn’t that much is it’ - I had £20.

Eventually she was diagnosed with dementia. By that point she was sectioned and yet again, benefits whipped out from under her immediately - you don’t get PIP if you’re in hospital or care. You get the bare minimum. Family top up her money for clothes, toiletries, snacks, music for her room, etc.

It’s absolutely absurd and I break my heart over the fact that my mum’s last few years of awareness were just endless stress and anxiety. How do you block that out?

Quality of life is an absolute joke, it was non existent. I got to the point of five sleepless nights and I threatened something truly awful of sheer desperation - at that point I got help immediately, up to then I was left to it. How the hell do I get that out of my head?

The system is not fit for purpose as it is, it’s awful.

As sad as that is I worked with a women in a retail role who was having frequent grand mal seizures, often in public view. Pushed into work for similar reasons given about being gone most the day.
The supermarket’s sick policy was so supportive as the job centre seemed to presume! ‘Adjusted triggers’ allowed for about 1-2 absences due to being unconscious a month. She was ultimately sacked. And carried on being hounded at the job centre.
It all ignores that employers aren’t wanting to employ anyone slower/ absent more or harder to train are they? Presuming people want to actively work and fight to do so- the employers aren’t eager

Tahinii · 30/04/2024 16:54

Bumpitybumper · 30/04/2024 16:44

It's so frustrating when posters deliberately misrepresent what has been posted.

Nobody has said disabled people shouldn't have help with mobility and getting to places. The extent of this help was questioned, just in terms of there has to be a limit to everything. If a non disabled person can use a train to get from Edinburgh to London for a leisure trip for £20 does that mean that disabled person should be funded the £500 to take a taxi for the same route?

There is also the misleading concept that only the disabled have extra costs associated with mobility and their physical health. At least four members of my family aren't disabled but have mobility issues. One can't drive at all and is too old to learn now (80 plus) and lives rurally. Her husband died so she is really stuck. Another (also a widow) can't drive at night due to extreme astigmatism. One has attempted a driving test 6 times and can't pass (no disability). The other is morbidly obese and would not be able to manage a walk to the local bus stop. Should all of these people have taxis funded or at least subsided by the government? This will be the reality of an aging and sicker population.

Your ignorance is astounding. It’s quite likely if a person would struggle so much with a long journey (Edinburgh to London), then they’d struggle with the events there so wouldn’t be going anyway!!!

Fresh1ndia · 30/04/2024 16:54

Bumpitybumper · 30/04/2024 16:44

It's so frustrating when posters deliberately misrepresent what has been posted.

Nobody has said disabled people shouldn't have help with mobility and getting to places. The extent of this help was questioned, just in terms of there has to be a limit to everything. If a non disabled person can use a train to get from Edinburgh to London for a leisure trip for £20 does that mean that disabled person should be funded the £500 to take a taxi for the same route?

There is also the misleading concept that only the disabled have extra costs associated with mobility and their physical health. At least four members of my family aren't disabled but have mobility issues. One can't drive at all and is too old to learn now (80 plus) and lives rurally. Her husband died so she is really stuck. Another (also a widow) can't drive at night due to extreme astigmatism. One has attempted a driving test 6 times and can't pass (no disability). The other is morbidly obese and would not be able to manage a walk to the local bus stop. Should all of these people have taxis funded or at least subsided by the government? This will be the reality of an aging and sicker population.

No that’s exactly what you are saying. There is no extent to be examined. It’s not a huge amount
and for the disabled to use it as they find the most helpful.£28 a week for standard, £75 for enhanced. That doesn’t go far How many disabled people are going on leisure trips to Edinburgh? They just want to get to appointments, college and work. Just quit with the inflammatory language and scenarios. If disabled people need help with mobility they need help. If you don’t agree with that own it.

ArchesOfsunflowers · 30/04/2024 16:55

Bumpitybumper · 30/04/2024 16:46

That's how you have chosen to define it, not what is in the dictionary.

It’s the literal definition . Something that is not necessary

To be terrified about PIP?
SummerBreeze1980 · 30/04/2024 16:58

GoodnightAdeline · 30/04/2024 14:59

Emotional support isn’t something I would classify as deserving financial compensation. Don’t we all do that for family or friends? I feel like it’s getting slightly ridiculous tbh

What do you think staff do in supported accommodation for people with mental illness? Those carers don't deserve to be paid for their work? Their friends and family should just divvy up the shifts between themselves (if they have any). I think it's getting more than slightly ridiculous. Some people on here are so naive!

societies · 30/04/2024 17:00

3usernames · 30/04/2024 16:39

Disabled people don't get subsidised council tax

some get their CT paid for though. point is, the council do the gardens of disabled etc whilst taking care of the local parks. I have seen some who had this done for them.

Boomer55 · 30/04/2024 17:00

Fresh1ndia · 30/04/2024 16:54

No that’s exactly what you are saying. There is no extent to be examined. It’s not a huge amount
and for the disabled to use it as they find the most helpful.£28 a week for standard, £75 for enhanced. That doesn’t go far How many disabled people are going on leisure trips to Edinburgh? They just want to get to appointments, college and work. Just quit with the inflammatory language and scenarios. If disabled people need help with mobility they need help. If you don’t agree with that own it.

To be clear, I’m a Londoner with no wish to go to Edinburgh.

I just need to access essential services, a mile or so away.🙄

Boomer55 · 30/04/2024 17:01

societies · 30/04/2024 17:00

some get their CT paid for though. point is, the council do the gardens of disabled etc whilst taking care of the local parks. I have seen some who had this done for them.

Wish I did. I pay a gardener.

SummerBreeze1980 · 30/04/2024 17:03

GoodnightAdeline · 30/04/2024 15:05

I think the majority of the British public would agree if asked. Feeling you deserve financial compensation for providing ‘emotional support’ to family and friends is nonsense, sorry.

The discussion was about working as a carer! That isn't usually with your friends and family is it? Goodness me, you're hard work!

Fresh1ndia · 30/04/2024 17:04

SummerBreeze1980 · 30/04/2024 16:58

What do you think staff do in supported accommodation for people with mental illness? Those carers don't deserve to be paid for their work? Their friends and family should just divvy up the shifts between themselves (if they have any). I think it's getting more than slightly ridiculous. Some people on here are so naive!

Exaxtly. When you are a carer the endless appointments,meetings and hospital
admissions cost a huge amount in non paid work days. Many carers are lucky if they can keep their job.

Noras · 30/04/2024 17:05

So in essence people who are born disabled and who cannot access fun activities and are unable to work should

1 Never go to the cinema
2 Never go to the theatre
3 Never go out to a museum
4 Never have a meal out
5 Never go on holiday
6 Never take trips around the UK

They should just exist and eat basic food ( hopefully that they can create as ready meals are a luxury) They should have cell like existences and do pretty much nothing except a walk in the park as long as it did not require a Pa to have a drink and a snack.

My goodness, 20 years ago I wanted to throw me and my disabled baby under a bus because I felt that I had failed somehow and his life would be awful. Maybe I was right to have felt like that.

ArseInTheCoOpWindow · 30/04/2024 17:06

Boomer55 · 30/04/2024 17:01

Wish I did. I pay a gardener.

They don’t do mine. I have to pay someone. Im on the highest award.

SummerBreeze1980 · 30/04/2024 17:06

Bumpitybumper · 30/04/2024 15:14

Taxis are luxuries. They are expensive, allow people to travel in more comfort than public transport and you don't need to drive yourself. I am genuinely sorry that this is the only means of transport that you can realistically use and I can understand how they feel like a necessity to you. I would fully support you being able to use taxis to get to necessary appointments.

I think many would think having a car and being able to drive yourself wherever you want is the biggest luxury! Would most people really want to give up their car to be restricted to only going somewhere if they can afford the expensive taxi - i.e reducing your freedom and ability to leave the house significantly? If taxis are so great why are people still driving I wonder??

3usernames · 30/04/2024 17:07

Everyone who thinks that people with disabilities are rolling in money and need the funding stopped, what are you proposing, and who do you vote for?

SummerBreeze1980 · 30/04/2024 17:09

Bumpitybumper · 30/04/2024 15:14

Taxis are luxuries. They are expensive, allow people to travel in more comfort than public transport and you don't need to drive yourself. I am genuinely sorry that this is the only means of transport that you can realistically use and I can understand how they feel like a necessity to you. I would fully support you being able to use taxis to get to necessary appointments.

So who pays for the medication and therapy this person needs who only ever leaves their house for necessary appointments once they've developed affective depression?

societies · 30/04/2024 17:11

Boomer55 · 30/04/2024 17:01

Wish I did. I pay a gardener.

Approach them. The garden was so professionally done, all year round, every year, when the Council came to tend to the nearby local park. It is the first I 'clocked' the couple had limited mobility. Years later, the husband died. Last I saw the lady, she too had got on in age, so I am sure the Council still tends to her garden. Lovely people. They also had an adjusted car. They own their own home, so never thought the car could have been funded, but now I guess it was.

SummerBreeze1980 · 30/04/2024 17:11

pointythings · 30/04/2024 16:31

Personally I think that if your only way if getting to where you need to be, e.g. medical appointments, is a taxi, then a taxi is an essential, not a luxury. It's only a luxury if other, cheaper options are available.

Exactly that's how most people would define it too.

Soukmyfalafel · 30/04/2024 17:15

I work but get DLA for my son with complex needs. The costs don't disappear and he doesn't stop being disabled because i work, but people just assume I don't work. DLA would get swallowed up by bills if I gave up work, so I wouldn't be able to provide the things he needs that children who aren't disabled don't need. So no, it shouldn't be means tested. It means we have a normal life and still provide what my son needs because let's face it, the local authority and NHS don't do a great job of it. If it was means tested, I'd just give up workor cut my hours down! That works doesn't it?!

The DLA goes on OT equipment (no we don't get given this), nappies, huge water bill (hes incontinent), speech apps (he is non verbal), replacing things he breaks (he has severe LD as well as autism and doesn't understand) and to plug the gaps that shitty failing services can't provide, like afterschool clubs or holiday clubs (nobody will take my son, I have to pay someone to look after him in the holidays, which is more than a club). Any left over will be for when services fall off a cliff when he is an adult. He will just get PIP as he won't be entitled to anything else, which is hardly anything.

These ADDITIONAL costs I have compared to non disabled kids do not disappear because I work. I work so I can still have a normal life as much as I can for my son and his sibling (and not live in poverty) and still be able to provide the extra stuff a disabled child needs.

IAm I worried about Rishi Sunak? Nah, because i dont think there are THAT many people who are this hateful or derranged, just maybe a little ignorant. He has looked like he has lost the plot since he called that random press conference about extremism. He has not been right since. He has left the building already and is just waiting to get his india trade deal over the line. Then he will fuck off (hallelujah!). He is toast and I hope the Tories become near extinct.

Willyoujustbequiet · 30/04/2024 17:16

Noras · 30/04/2024 16:04

Personally if people resent paying PIp for my adult son to facilitate a PA to take him to the cinema then I resent anyone claiming child benefit taking their children on holiday or to the cinema or zoo. Why am I a tax payer paying for kids to go to the Zoo - that’s a luxury. Why am I paying benefit to people with upwards of £120,000 combined income. I hope anyone begrudging a disabled person’s trip to the cinema has never claimed child benefit and gone on holiday.

Indeed

There are countless threads complaining about the child benefit threshold ( they found the money to increase that in the budget surprisingly though didn't they?!) and others complaining that people on £100k plus get no help with childcare etc..

But the disabled are fair game? The double standard is ludicrous.

It takes a special kind of person to attack the most vulnerable in our society.

Bumpitybumper · 30/04/2024 17:17

ArchesOfsunflowers · 30/04/2024 16:55

It’s the literal definition . Something that is not necessary

Not in the Oxford Dictionary it's not!

societies · 30/04/2024 17:18

Never thought disabled people are rolling in money. In fact, I believe, funding them is a no brainer. isn't PIP only £170 every 2 weeks? So around £340 per month? Then UC and all other benefits, which would add up, if someone shouldn't be eligible?

I don't know. The point people are making is that the more people who shouldn't be receiving any of those benefits receive it, the less there will be for genuine cases as it will make the whole system unsustainable. So, the proposal is to relook at the process. Can you argue with that?

Boomer55 · 30/04/2024 17:19

ArseInTheCoOpWindow · 30/04/2024 17:06

They don’t do mine. I have to pay someone. Im on the highest award.

Nor me, and so am I. Where are all these free gardeners? 🙄🤷‍♀️

Willyoujustbequiet · 30/04/2024 17:20

GoodnightAdeline · 30/04/2024 14:48

Can you care for someone else if you’re so disabled you need disability benefits?

Yes.

Many thousands do as there is no one else and people would simply die otherwise.

You really don't have the first clue do you?

Bumpitybumper · 30/04/2024 17:20

SummerBreeze1980 · 30/04/2024 16:52

Where are you getting that figure from? Since when did it cost £100 to go to the cinema? I mean we don't go as it's too expensive but it's not £100! A ticket is like £8?

Read the original post about this. The trip was undertaken with a PA and involved a considerable amount of their time due to issues around transport and also the use of an Uber. £100 is probably an underestimate if you properly factor in the cost of the PAs time.

Think what you like as to whether the trip was a good use of public money but the figure quoted is accurate

Boomer55 · 30/04/2024 17:21

societies · 30/04/2024 17:18

Never thought disabled people are rolling in money. In fact, I believe, funding them is a no brainer. isn't PIP only £170 every 2 weeks? So around £340 per month? Then UC and all other benefits, which would add up, if someone shouldn't be eligible?

I don't know. The point people are making is that the more people who shouldn't be receiving any of those benefits receive it, the less there will be for genuine cases as it will make the whole system unsustainable. So, the proposal is to relook at the process. Can you argue with that?

PIP can be more than that. It depends on the level of award. But, it doesn’t automatically entitle anyone to anything. It’s a separate benefit.

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