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

[bluebirdblackbird]

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.

The trouble is, there are people claiming benefits who could probably be working. I think they should just reassess everyone first.

I say this a single parent who is on LCW for universal credit for very good reason. I'm now being pressured by my new work coach into finding more work to the point that my mental health is now spiralling again and I may even have to leave my current job that i love and am doing well at - it's crazy. I need to earn more anyway l, I only dropped hours to pick up new skills which I now have and will hopefully be able to pick up more hours soon.

Instead I now have to stress about doing pointless tasks like updating my CV and spending 35 hours a week preparing for work and attending meetings at the jobcentre when I am already working a minimum of 12 hours a week.

I now haven't slept for two nights, my youngest dc was late for school. Another DC has just started exams and now their mum is loosing it.

I do feel like I'm being treated as someone who is fraudulently claiming LCW which is not the case at all. If they need to get rid of people claiming without good reason, I would welcome reassessment if this would make them realise.

Of course they need cars, especially those who go to work. The lack of accessible (and sometimes any) seating on public transport makes it difficult to rely on for those of us who can’t stand for long.

The noticeably huge increase in young people and children with hidden disabilities whose need to sit down on public transport trumps the need of those with mobility issues or the obvious frailty that accompanies old age must be a concern for the future.

I know you currently can. Nobody is denying that. I would wager that the majority of the population do not support their taxes being spent in this way though. This is why change is needed and will come I believe. State money shouldn't be spent on designer bags and expensive holidays.

It's sad because I feel that the radical insistence that any use of DLA is 'fair' use as long as it has some tenuous benefit for the child will lead to the whole system being brought into disrepute and seriously challenged. Inevitably this will lead to restrictions that will impact those that are genuinely using the money for what it is clearly intended for.

The implication is clearly that the disabled 'deserve' all these things by virtue of the fact they're disabled whereas able bodied people don't.

Able bodied people have many fewer barriers to achieving those things. It’s not that disabled people are more deserving, it’s about levelling the playing field a bit so that disabled people can live meaningful lives, study and work.

An able bodied person can access education, can change jobs, change careers without needing to think about whether their care arrangements will accommodate a new job, or whether their employer will support the adaptations they need, or whether their colleagues will resent covering them attending health appointments etc.

Its not that able bodied people don’t deserve good things, its that they’re in a much stronger position to build their life without the very real barriers that disability brings.

Not really Autism for example is a huge spectrum
You could have one person with the diagnosis who.is independent ,of at least average intelligence is able to work Tec
And then a,second person with a diagnosis who needs 1:1 care 24/7 can't speak ,won't be able to work etc
Same diagnosis very different care needs.

You do need evidence but ''Jack is diagnosed with Autism'' won't be enough evidence without other evidence from medical professionals to back it up.

Which is why plenty of children receive DLA without a diagnosis. As I said, my son receives both high rate care and high rate mobility despite the fact he no longer has a diagnosis and reporting a change of circumstances such as remission from cancer means they look over his whole award to make sure he is getting the correct rates.

Others really aren't doing it.

It's ignorance. I get pip. I have a social worker, 3 support workers, and 2 therapists. I need to see a specialist every day for support, as well as have a carer. At the moment there's no money for the specialist so I'm using an ai programme provided by the NHS. It's not ideal.
I also work.

Not one single one of my friends knows how much support I need to be able to see them for a few hours a week and work part time. Not one.
I don't tell them. I haven't even told my mum.
I'm quite sure there a few people that know me that are fuming that i get something for nothing.
I should not have to explain my disability to anyone other than my care providers, my assessors, and occasionally my employer and family.

I work in benefits and I have never seen so many people who are suicidal precisely because of the thoughtless narrative around these benefits cuts.

People who already feel they have to hide their disabilities to escape judgement are now being told they cost the state too much to live. They are a burden. The rhetoric is disgusting.

Yes, but this could still be preferential to having to work everyday in a NMW, long hours, away from your family and having to deal with difficult customers for hours on end. Couple this with imperfect mental and physical health (45% of Brits have chronic health conditions) then you can see why a life on benefits appeals. You may need to go to tribunal but most people are successful in their claims

I never said it was sufficient in itself. Just that it's a very strong piece of evidence, especially when you're initially claiming.

How would you change DLA? I can't see how it could be changed without it potentially costing even more overall to implement or making things even more difficult for parents who have disabled children.

Especially because the needs of children getting DLA are going to be so incredibly varied.

This is why change is needed and will come I believe. State money shouldn't be spent on designer bags and expensive holidays.

Neither PIP or DLA are means tested. If I have a well paying job and claim DLA for my DD (because DLA is a gateway benefit to access practical supports she needs), I should never have a holiday, or buy a nice bag, or drive a car because I have state help? Or maybe I shouldn’t claim DLA for her meaning she won’t also get access to accommodations she needs in daily life.

I’m in a similar place - I’d gladly swap for my health back. 😟

👏 and often, it’s a higher vehicle aka the much-loved Mumsnet 4x4, so we can get into it and out of it in as little pain as possible….wait for it….

Great opening post, I also hear you x

I dealt with someone via my job who was getting pip for the sort of minor depression you describe. It’s not as hard as you think or at least not consistent.

But people seem to forget that it would involve their child becoming disabled to get DLA. No parent would really prefer that no matter how many difficult customers they have to deal with.

Give me difficult customers any day over watching my son almost die.

Any system will be imperfect but this current one is unaffordable, unsustainable and blatantly unfair. I think we need to increase the thresholds on what counts as a care need and benchmark more broadly against what could reasonably be within the realms of 'normal'. I mentioned upthread that a teenage boy needing reminders to wake up on time, refusing to shower and eating unhealthily is actually really quite normal if undesirable. This kind of thing shouldn't be included in DLA claims at all.

I also think we need a broader acceptance that the state can't equalise everything for everyone. Too many of us have ailments and chronic conditions that massively impact our lives. Sadly, we have to sometimes accept that the state can't step in to remove the financial impact of our struggles. We have to shoulder some ourselves either as individuals or in a family unit.

this is the great debate though- is it for the able bodied to pay out their wages to level the playing field for those who can’t. And if the answer is yes, where is the cut off point? The majority of posters on here complete agree the OP needs support but 99% of the people who get into arguments about benefits are arguing about the ones further along he line who need a degree of support. For instance as someone mentioned, should benefits ever pay for a holiday for someone if the working person themselves can’t afford one. That is where the arguments happen.

Those complaining about MH being assessed as a disability don't understand how debilitating it can be. DD has severe anxiety and depression. She's attempted suicide multiple times, not because she wants to die but because she is exhausted and wants to rest. Her brain is constantly going a hundred miles an hour because she's constantly fixated on what could go wrong, and she can't stop it. Sometimes she feels so incredibly sad that death would be preferable to living with the grief, but she doesn't know why she is sad or how to make it better.

Someone on a thread likened it to people having a certain number of cups to spend each day. People with chronic fatigue disorders have fewer cups than "normal" people. DD liked that analogy when I read it to her. She thinks she has the same number of cups as "normal" people, but every day activities cost her more cups.

So, for me and you, going to the local shop for milk might cost a quarter of a cup. We don't have to think about it. We just do it. For DD it would cost 5 cups. She can't just go to the shop. Her brain forces her to assess every possible outcome before she can leave the house.

What if she sees someone she knows and they say hello to her? What would she say back? What if she sees her rapist? Does she run? Does she ignore him? Will she have a panic attack? What if there is no milk? Does she buy something else? If she doesn't, will the shopkeeper think she didn't buy anything because she hates him or thinks his shop is dirty? What if he asks her why she hates him? What if she starts crying in the shop? She sometimes cries and doesn't know why she is crying. What if she falls over on her way to the shop and breaks her ankle?

Every choice she has throughout the day, no matter how small, forces her to consider every possible outcome, no matter how unlikely, and it is exhausting. Some days, she uses all of her cups just getting out of bed. So many things can go wrong between her bedroom and making it to the kettle, and she has to think about all of them.

She also has a constant sense of dread, not worry, actual dread. She says it is like being on a rollercoaster all day. That feeling you get in your stomach when you reach the top and are about to go over the edge. She has that constantly. The days she only has that feeling are good days. On her bad days, it feels like there is something wrapped around her lungs and stopping her from breathing normally.

I've been at work when the fire alarm malfunctioned, and DD was in the house alone. She knew she could see no fire or smell any fire, but what if it was in the ceiling? What if it wasn't the fire alarm, what if it was the carbon monoxide alarm? If she phoned 999 what if they shouted at her or arrested her for wasting their time? What if the fire was in the ceiling in the hallway, and when they opened the door, they triggered an explosion? etc etc etc.

She didn't phone 999. She didn't look for the fire or escape the house in case it was carbon monoxide. She went back to bed and waited to die instead. She genuinely believed she would die, but she didn't have enough cups left to save herself.

Who the fuck are the 35% of people who think you are being unreasonable?

There but for the grace of God go I. I’m not religious, but that makes sense.

For those of you who want to stop benefits, what do you fucking want us to do.

Do you really think it cannot possibly happen to you?

I hear you op. Ironically I get higher rate element for severe mental health issues that I won't go into here because it could trigger others ... they ignore everything else. I can't do any of the following for myself: wash, dress, feed, manage medication, walk, stand etc but they have literally ignored all of that plus the evidence. I don't mind the money aspect, they can keep it and choke on it because my DH works additional shifts to keep us going but so many other people with my conditions do not have the "luxury" of a partner and carer who picks up the slack. I would love to see someone hire me as I'm sure employers are calling out for narcoleptic childminders, office staff and carers these days ...

I bet I rile people right up as I work, yep full time!, and I get pip.

This money is used on carers who I pay to help me get up, washed and ready for work. It used to also pay for my specially adapted car to get to work but I have seizures most days now so it’s spent on taxis as public transport here is awful for disabled people.

so yeah this money enables me (for now) to be able to hold down a job and pay my taxes.

but I had to fight for it. As soon as the pip assessor heard I work they immediately shut down on me and I was refused. Totally ignored occupational health assessments, gp letters, my neurologist paperwork, social workers letter, wheelchair assessment report etc etc. so I appealed and rolled into my appeal in my wheelchair with my paid carer there to assist me as I’d be needing help to empty my catheter bag at some point that afternoon. Judge was appalled. I was awarded high rate for both.

im no better off financially on pip. It is what it says ….personal INDEPENDENCE payment.

Honestly OP, please don’t let other people get to you. The vast majority can’t imagine things that haven’t happened to them and therefore just don’t understand. Don’t add extra strain by giving them a second thought

Your poor daughter. You must be taking some of this stress on, too. I can’t imagine. I guess medication hasn’t helped her? 💐

I feel very proud to live in a country that can help households like yours. I worry that with ever increasing public expenditure, reduced affluence and the flight of top rate tax payers, that people like you will be hit. Something has got to give as we face bankruptcy and then there will be nothing for anyone.