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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be frightened about the Government’s plans for benefits reform?

1000 replies

PilgorTheGoat · 21/04/2024 11:39

I am one of the millions of people currently on long term sickness benefits. I receive the LCWRA element of UC and PIP due to poor mental health and autism. I have severe anxiety and depression and I am awaiting an appointment to see if I also have PTSD due to sexual abuse in my childhood.

I have tried every element of support offered to me. I’m maxed out on 2 different types of antidepressants. I have had back-to-back (excluding the 6 month wait in between) 12 week sessions of counselling offered via the NHS. I am on a waiting list for intensive CBT due to my possible PTSD. I am currently having twice weekly private, video counselling appointments.

I can’t leave my house alone due to panic attacks. I struggle to meet my own care needs and my husband has to do a lot of the work for us both (although he works full time). I have a very understanding friend whom I force myself to go for a short walk with twice a week in order to stop myself becoming completely imprisoned at home but I find this very distressing and we have to take the same route each time.

I am so, so scared about the government’s plans to end sickness benefits for people like me. We don’t have a load of spare cash, we’re just about getting by. There is no support available. I’ve taken everything offered and my husband has been very proactive in seeking out other services for me to be involved with. I’d love to be better, I’d love not to live in fear but there is no help.

OP posts:
Thread gallery
11
Universalsnail · 22/04/2024 17:41

So here is what happened to me today as I think it's very relevant to this thread.

This afternoon I turned up to an online course for an area I think I may be able to find a job in that could be sustainable for me with the skills taught in the course. This course is similar to the one I wanted to do in person but wasn't allowed to do by the job centre, however I am allowed to do this as it's through the job centre so I have agreed to give it a try remotely. I found this course off my own back using my initiative.

I had a panic attack before the call but forced myself to log on. I was then told it was a requirement to have my video on. Tutor was rude when I tried to explain I had contacted the course provider a out reasonable accomodations around video. They said that I had to have it on.

So I put It on. I was then so overwhelmed I went mute and couldnt ask for anything. I started crying and had to sit in a video call crying infront of strangers. I haven't learnt anything. I've been told I have to screenshot my completed work tonight to pass to the next day.

Except I had a meltdown when the call was done and smacked my head hard against the wall. I now feel completely exhausted. Have a bad headache and have had to get the kids dad's to have the kids tonight as I don't feel able to care for my children

All for a course I have found off my own back to try and get a job and off benefits. Putting myself through this is apparently me not compromising and I should just get a job. Despite the fact this is what happens to me when I try..every time. ATM it seems unlikely I'll finish this course I've spent ages asking to do as I'm already crying over the anxiety about having to attend remotely. It's humiliating

It's really not as easy as people in this thread try to make it out to be to get job and keep one with autism and MH issues.

whistleblower99 · 22/04/2024 17:54

BIossomtoes · 22/04/2024 15:15

Why don’t you just give it a rest? The pile on and bullying of two very unwell posters on this thread is absolutely appalling. Please just leave them alone.

Like you piled on a suicidal single mother who couldn’t afford her home anymore?

SabreIsMyFave · 22/04/2024 20:32

@Universalsnail Flowers I hope you're OK now.

XenoBitch · 22/04/2024 20:38

@Universalsnail I hope you are feeling a bit better this evening. It sounds so tough. The posters berating you for wanting "the perfect job".... well, I have no words for them. Maybe a reminder that fewer than 3 in 10 autistic people are in paid employment.

Babyroobs · 22/04/2024 21:33

Kandalama · 22/04/2024 11:04

I think businesses effectively using UC as a fall back is a huge problem.
Paying low wages because they know their employees can get UC creates a huge tax burden.
The minimum wage needs to go up and zero hours contract needs to be stopped so everyone can work in the knowledge they can pay their bills.

Prior to UC when you worked ( assuming no disabilities) you got nothing more. You only picked up the ‘dole’ if you were out of work. Now with UC to top up wages businesses are effectively using benefits as a top up to their low wages.

I appreciate with higher wages everything has to increase in price and round and round and round we go……….I certainly wouldn’t want to be the one trying to sort it all out.

Prior to UC, we had 20+ years of tax credits which topped up wages in exactly the same way.

Babyroobs · 22/04/2024 21:39

TigerRag · 22/04/2024 14:26

Because of the post. They may send it out and say you have 4 weeks from the date on the letter. That letter may take a week or two to arrive

Just in case this helps anyone worrying about a short time to get a form back. You can ask for an extension. I have recently got a month extension for one of my clients because they were anxious and we needed more time to gather medical evidence. PIP were perfectly fine about it. They have also been very accommodating to change assessment times etc to fit round clients work schedule and me being available to support.

Kandalama · 22/04/2024 21:49

Babyroobs · 22/04/2024 21:33

Prior to UC, we had 20+ years of tax credits which topped up wages in exactly the same way.

Yep
i know.
I was referring to prior to that.
so just the dole and family allowance. No top ups

ThisOldThang · 22/04/2024 22:25

Universalsnail · 22/04/2024 17:41

So here is what happened to me today as I think it's very relevant to this thread.

This afternoon I turned up to an online course for an area I think I may be able to find a job in that could be sustainable for me with the skills taught in the course. This course is similar to the one I wanted to do in person but wasn't allowed to do by the job centre, however I am allowed to do this as it's through the job centre so I have agreed to give it a try remotely. I found this course off my own back using my initiative.

I had a panic attack before the call but forced myself to log on. I was then told it was a requirement to have my video on. Tutor was rude when I tried to explain I had contacted the course provider a out reasonable accomodations around video. They said that I had to have it on.

So I put It on. I was then so overwhelmed I went mute and couldnt ask for anything. I started crying and had to sit in a video call crying infront of strangers. I haven't learnt anything. I've been told I have to screenshot my completed work tonight to pass to the next day.

Except I had a meltdown when the call was done and smacked my head hard against the wall. I now feel completely exhausted. Have a bad headache and have had to get the kids dad's to have the kids tonight as I don't feel able to care for my children

All for a course I have found off my own back to try and get a job and off benefits. Putting myself through this is apparently me not compromising and I should just get a job. Despite the fact this is what happens to me when I try..every time. ATM it seems unlikely I'll finish this course I've spent ages asking to do as I'm already crying over the anxiety about having to attend remotely. It's humiliating

It's really not as easy as people in this thread try to make it out to be to get job and keep one with autism and MH issues.

I expect the camera is required to ensure people are who they say they are (i.e. not getting a government funded course that they're not entitled to) and also to ensure that people engage with the course and don't just sit scrolling social media.

I'm sorry you've had a bad experience.

Why do you find the camera to be so intrusive?

Could you perhaps tell a white lie tomorrow - e.g. place some black tape over the lens and say your camera has stopped working?

Universalsnail · 22/04/2024 22:32

ThisOldThang · 22/04/2024 22:25

I expect the camera is required to ensure people are who they say they are (i.e. not getting a government funded course that they're not entitled to) and also to ensure that people engage with the course and don't just sit scrolling social media.

I'm sorry you've had a bad experience.

Why do you find the camera to be so intrusive?

Could you perhaps tell a white lie tomorrow - e.g. place some black tape over the lens and say your camera has stopped working?

I am autistic. I find video calls really distressing. I'm not entirely sure why but I hate being on camera and I struggle to read other people's body language on camera and I feel horrendous self concious ok camera. Unfortunately I can't put my finger on exactly what it is that causes it so I don't know how to address it, but it makes me feel so incredibly anxious and overwhelmed. It's really frustrating.

I sent them an email making a formal request to have the camera off as a reasonable adjustment citing their disability inclusion policy. Hoping they then let me have it off tomorrow. Fingers crossed.

Willyoujustbequiet · 22/04/2024 22:34

Golftennis · 22/04/2024 14:24

I see. Why not give 2 or 3 weeks? Do you know?

From what I understand they started giving 30 days but sent them out 2nd class via their system and people were receiving them 2 weeks plus later. So essentially people had to fill them in immediately on receipt in order to ensure they were received back in time.

When you think how long it takes to get copy reports from the NHS its simply impossible for vulnerable people to meet those timescales.

Willyoujustbequiet · 22/04/2024 22:36

FuckOffTom · 22/04/2024 14:44

The math here is that 35 + 8 = 43 billion
So why can’t they tackle both?

They can tackle both clearly. But it's obvious which should be the primary target.

Willyoujustbequiet · 22/04/2024 22:39

BIossomtoes · 22/04/2024 15:15

Why don’t you just give it a rest? The pile on and bullying of two very unwell posters on this thread is absolutely appalling. Please just leave them alone.

It's awful isn't it.

As this thread has continued I've become acute aware that some posters are absolutely devoid of empathy and any kind of emotional intelligence.

It's disgraceful.

ilovesooty · 22/04/2024 23:16

Universalsnail · 22/04/2024 22:32

I am autistic. I find video calls really distressing. I'm not entirely sure why but I hate being on camera and I struggle to read other people's body language on camera and I feel horrendous self concious ok camera. Unfortunately I can't put my finger on exactly what it is that causes it so I don't know how to address it, but it makes me feel so incredibly anxious and overwhelmed. It's really frustrating.

I sent them an email making a formal request to have the camera off as a reasonable adjustment citing their disability inclusion policy. Hoping they then let me have it off tomorrow. Fingers crossed.

I think that's a good idea - much better than lying about the camera not working, which isn't a white lie but an outright one. You're entitled to advocate for reasonable adjustments. Hats off to you for having the strength to hang on in there and do that after such a distressing experience.

WiseKhakiGoose · 23/04/2024 10:46

PilgorTheGoat · 22/04/2024 14:00

I would like to know what some posters would like me to do.

What I’m hearing is a massive amount of ableism towards those who are mentally unwell that would never been deemed acceptable if applied to those with physical ailments.

I wonder if I had horrifically injured my legs in an accident, if I had been given surgery, physiotherapy and a wide range of pain killers and none of them had left me able to leave a normal life whether PP would advise that I just need to get on with it, forget about the pain, forget about the inability to comfortably walk and think my way out of the rut?

I’ve stepped away from this thread numerous times now because certain posters have caused me an awful lot of upset - it was perhaps my fault for starting it in AIBU rather than Health. I started this thread looking for some reassurance which many posters have offered (thank you) but many others have used it to attack myself and other potentially vulnerable posters. You have no idea about the realities of our lives, you have no idea what we are or are not capable of but you’ve decided to pick apart everything we had said to criticise and accuse. It is shameful.

This thread has now caused me so much harm that I am going to have to step away from social media for a while, thus further isolating myself.

OP I understand you and I'm sorry you've been through so much. Yes, I noticed it too, that a lot of people have no empathy towards people with mental health or even physical disabilities, especially if they can't work because of it and need to be on benefits.

You can check the threads about PIP where claimants are in wheelchairs and they aren't given the mobility rates because they can "move around" in mobility scooter. Or because they have prosthesis leg, they can "move around". It's totally unfair in my opinion how some PIP assessments are made.

The reality is, attitude towards people who have physical disabilities or only mental health issues and can't work because of it, is the same, most people don't understand and don't care about it. They don't even care to try and understand it, especially the government and DWP.

I would actually suggest to all those people, the next time when they feel really sick with cold not to stay home but to stand up and go to work. Maybe after a few days of working being really sick, they'll get it, why people with mental health issues or physical issues can't work and need to be on benefits. Although I bet most of them won't manage even to get up and arrive at their workplace.

I think the problem is that people can't understand how it feels something what they've never been through. They don't understand how because of C-PTSD you can't function at all. All they see is "free" money, instead of realising that everyone would prefer to be healthy instead of receiving this kind of "free" money.

It's the same with the victims of domestic abuse, where the victims are blamed instead of the abusers. People who have never been through it, don't understand why the victims stay for years. They don't ask questions with horror why and how abusers can do such horrible things to their victims? How society can stop them? Instead, they ask the victims why they didn't leave and didn't protect themselves?

In your case, being a victim of sexual abuse in childhood is terrible. I can't even imagine what you've been through, but you have all my empathy. I think you've done great after what you went through to carry on living instead of giving up.

Don't listen to people here or in your life who don't understand you. They are either ignorant or abusers themselves. For real, what kind of person will blame you for not being able to work and function after you've been sexually abused in your childhood? Telling you that you should "move on"? When obviously you have tried your best all your life to carry on living, not give up, went to therapy, tried medication etc.?

Please don't lose your hope and carry on trying to get better. If you need to access even more therapy, try it, even if it won't work, at least you know you tried your best. You never know what may help you.

Don't be in any kind of contact with someone who blames you for not working. Always ask yourself what kind of person is that? Can you really trust their judgement? Maybe they are abusers themselves, and you don’t know about it? Maybe they can't understand you because they've never been through it? There may be a lot of other reasons why they are so cold hearted and blame you for something what's not your fault!

I really can't understand why and how anyone can actually blame a person for their health issues, be it physical or mental health issues. Nobody can choose how they feel today, sick or healthy!

OP do what you can, even if it's a tiny little thing, be proud of doing it! Carry on having short walks with your friend, I think is great that you do it despite all your struggles. You are a very strong person 🌹🌹🌹

WiseKhakiGoose · 23/04/2024 10:53

caringcarer · 21/04/2024 16:54

@PilgorTheGoat, I say this gently but if you've already had so much counselling, and none of it has worked, do you really think having yet more counselling will work this time? I didn't even know you could claim UC for yourself if your DH works.

Out of interest, what do you expect OP to do? To stop having counselling at all because it didn't help her enough in the past to start working? Like really, what do you suggest she should do in order to get better?

SabreIsMyFave · 23/04/2024 11:03

Willyoujustbequiet · 22/04/2024 22:34

From what I understand they started giving 30 days but sent them out 2nd class via their system and people were receiving them 2 weeks plus later. So essentially people had to fill them in immediately on receipt in order to ensure they were received back in time.

When you think how long it takes to get copy reports from the NHS its simply impossible for vulnerable people to meet those timescales.

Yes, I know several people who filled in PIP forms in the last six to twelve months. They received the form to fill in on say the 15th of June 2023, and it was sent on the 1st of June! They filled it in as quickly as they possibly could, and posted it back on the 16th or 17th of June.

Then on the 24th of June, they got a letter from the PIP department (sent on 19th June,) saying 'we've still not received your form - you only have another 14 days to get it in or your payments will stop.'

So even though they thought 'well surely they must have got it,' they were still worried about that letter. They thought 'well what if they haven't got it?' Sad So they spent some 50 minutes on the phone waiting to get through, and the person who answered said 'oh yes we've received it ... Looks like your form, and the reminder letter crossed! It's all good. These 'reminder' letters always go out to everyone just ignore them!'

What the actual living fuck? Why do they do that? They should give people six weeks after the form is sent, if the bloody thing is taking 2 full weeks to get to people. So they have got a full 4 weeks after they get it, to get it back to the PIP department. (Or rather, 3 weeks - as you need to allow an extra week for it to get there.)

It's farcical. It's virtually impossible to get the form to them before the reminder is sent out!

WiseKhakiGoose · 23/04/2024 11:15

Nicetobenice7 · 21/04/2024 17:50

It's a fact there are ppl on benefits that shouldn't be on them like it or not

How many? 2%? And because of 2% criminals, another 98% of genuine claimants need to be put under more stress in order to prove again that they are really sick and unable to work? Do you think they need more stress? Did you check how much is Universal Credit and PIP rates? Do you really think anyone wants to live on that kind of money and spend their lives indoors? Did you enjoy Covid? Would you like for the rest of your life to have that kind of living?

Nicetobenice7 · 23/04/2024 11:39

WiseKhakiGoose · 23/04/2024 11:15

How many? 2%? And because of 2% criminals, another 98% of genuine claimants need to be put under more stress in order to prove again that they are really sick and unable to work? Do you think they need more stress? Did you check how much is Universal Credit and PIP rates? Do you really think anyone wants to live on that kind of money and spend their lives indoors? Did you enjoy Covid? Would you like for the rest of your life to have that kind of living?

I know someone on pip and uc and they get more than I get for working 50 hrs a week ...and do presume anything about me I never said ppl enjoy living on benefits

Thelnebriati · 23/04/2024 11:43

PIP is to help people cover the additional costs associated with being disabled; when you find yourself jealous of people who get PIP remind yourself they also have a significant disability.

BIossomtoes · 23/04/2024 11:47

Nicetobenice7 · 23/04/2024 11:39

I know someone on pip and uc and they get more than I get for working 50 hrs a week ...and do presume anything about me I never said ppl enjoy living on benefits

So why don’t you give yourself a life changing injury so you too can enjoy getting more than you currently earn?

Nicetobenice7 · 23/04/2024 11:49

Thelnebriati · 23/04/2024 11:43

PIP is to help people cover the additional costs associated with being disabled; when you find yourself jealous of people who get PIP remind yourself they also have a significant disability.

Who is that aimed at ..because if it is I sure as hell am not jealous my partner is disabled and I have mental health ...if thst helps you make a decision!!

Nicetobenice7 · 23/04/2024 11:50

BIossomtoes · 23/04/2024 11:47

So why don’t you give yourself a life changing injury so you too can enjoy getting more than you currently earn?

No thanks I already suffer MH and my partner is disabled grow up

Nicetobenice7 · 23/04/2024 11:51

BIossomtoes · 23/04/2024 11:47

So why don’t you give yourself a life changing injury so you too can enjoy getting more than you currently earn?

What a sick comment

OnlyComments · 23/04/2024 11:56

Nicetobenice7 · 23/04/2024 11:49

Who is that aimed at ..because if it is I sure as hell am not jealous my partner is disabled and I have mental health ...if thst helps you make a decision!!

Who do people always say they have mental health instead of mental illness? It’s really odd! It’s great to have mental health!

BIossomtoes · 23/04/2024 11:57

OnlyComments · 23/04/2024 11:56

Who do people always say they have mental health instead of mental illness? It’s really odd! It’s great to have mental health!

I know. Drives me mad. I love my mental health!

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