Help Scope inform the government on WCA - We want your story

Jimm_Scope

Hi community, as some of you are aware the government is currently going through a consultation process to change certain criteria in Work Capability Assessments (WCA). 

We are collating experiences and stories about how these changes could impact those who are disabled. These will be anonymised and then submitted to the consultation, as well as used in communications with MPs or Ministers to try and clearly get across the impact this could have.

 

We would love to hear from current claimants. However, if any of these criteria would change a WCA assessment for you, even if you’ve not had one or aren’t considering applying for ESA or LCWRA we would still like to hear how these changes would affect you.

The Government is considering removing, changing or lowering points rewarded certain criteria that would affect:

• People with mobility impairments
• Those with incontinence issues
• Claimants who face barriers getting about
• Those who face barriers coping with social engagement due to cognitive impairment or mental disorder
• People who would be at substantial risk of harm to self or others if not placed in LCWRA group.

If you fall into any one of these 5 we'd really like to hear how this would potentially affect you and current barriers to work you face. We want to hear your story, we want the government to know how this will affect people.

Everything will be anonymised before it is sent to the consultation. 

I understand many people can struggle to talk openly about the issues above. I myself had loss of bowel control when I was very ill with my Crohn's disease and it can be difficult to talk about even online. So I've also made a form that you can fill in that will be anonymous. Please let me know if you're having any issues with the form.

Jimm_Scope

To hopefully help people answer this I've written a little about how I would have been affected if my Crohn's was still as bad as it was many years ago. Please don't worry about how bad this might sound! I am much healthier now

The changes proposed give me great anxiety around being made to work when I am not currently capable. The pain that prevents me from walking around also prevents me from being able to think clearly,  I would not be able to concentrate or focus work. My lack of bowel control means I often must spend a long time on the toilet at home to try and avoid making a mess of myself which I find incredibly upsetting. Am I expected to work from the toilet? 

Both of the previous issues heavily affect my ability to get about. I avoid travelling when possible due to the bowel control issue, I would be limited to working from home jobs. While there are more than before covid they are in limited supply, the stress of being expected to find a job while also removing some of my income would exacerbate the symptoms and effects of both my mental health and my Crohn’s disease.

I hope you'll share, either here or in the form, how you could be impacted by these changes.

We want to hear from everyone but please give it extra thought if you're currently a claimant of LCWRA or ESA.

MW123

Jim, I appreciate Scope's efforts in collecting stories from individuals who could potentially be impacted by changes to the WCA criteria. Even though I do not fall within the specified criteria, I wholeheartedly endorse your mission to emphasise the significance of raising awareness about these potential changes.

It's praiseworthy that you're providing an anonymous form, acknowledging the challenges people may encounter when discussing personal health matters. 

I wholeheartedly encourage fellow members to actively engage with Scope in this endeavour, as it is vital to impress upon the government the importance of reconsidering the proposed changes. Once these changes are set in motion, the consequences for many could become irreversible.

Biblioklept

The substantial risk change is honestly ludicrous and those the most impacted by it will be those least able to speak up and most at risk when their income is slashed as a result.

I understand the logic behind their claim that people in these groups could now work from home but it isn't as simple as that or even close to true in most cases. Plus it completely ignores the fact that work from home jobs are few and far between with huge amounts of applicants and mostly require high levels of experience or education, people in all of those proposed groups are statistically less likely to have either.

I've been very lucky to have done many jobs from home but it hasn't been easy and relied on using contacts I had from when I was well enough to be out. I couldn't go through an interview again, even if it were from the comfort of my home. I can't use video or the phone.

Biblioklept

Coping with Social Engagement due to cognitive impairment or mental disorder

34. We are considering two options for change:

• remove the Coping with Social Engagement activity entirely (both LCW and LCWRA)
• reduce the points awarded for LCW descriptors for Coping with Social Engagement

Getting About 

35. We are considering two options for change:

• remove the Getting About activity entirely
• reduce the points awarded for LCW descriptors for Getting About

If these changes were to go ahead I would be found Fit for Work and expected to do mandatory work search and work preparation and face benefit sanction should I not. 

They would agree I cannot leave the house, they would agree I cannot interact with others, but argue I am still fit for work and capable of finding, securing and working a job reliably.

There is absolutely zero possibility.

So to answer your question "how would this affect me"? I would lose my ESA and face endless sanctions on UC.
Being without income I'd not be able to pay my bills so would end up homeless and in a cycle of debt. This would impact my health and put strain on other services and eventually, I imagine I'd end up dead.

So what would happen if these changes went ahead? I'd die. 

MW123

Hello Biblioklept 

It's clear that these proposed changes would have a devastating impact on your life and well-being. The fear of losing your ESA and facing sanctions on UC, leading to potential homelessness and financial instability, is an incredibly distressing prospect, and it is shameful that we are even having this discussion in 2023! 

Promoting working from home as a universal solution for people who are housebound overlooks the complexities and challenges faced by individuals with health conditions or disabilities. Moreover, many individuals may struggle to sustain regular work even from home due to their health conditions. This raises legitimate concerns about their financial stability and overall well-being. 

Trimming down the eligibility criteria for ESA isn't a universal solution that miraculously restores individuals to a state of employable health. This shift in proposals seem to reflect a worrisome mindset reminiscent of the historical Victorian workhouse mentality, which is very troubling to me.

 

perdita

Hi, 
I am currently in the support group for ESA due to not being able to mobilise more than 20 metres. I use a wheelchair when outdoors, it is a transport wheelchair due to muscle weakness I can't push myself. I also have bowel incontinence due to bile acid malabsorption. This type of inconvenience can happen many times during the day despite medication which does help. This is accompanied by acute pain as the bile burns the colon.
As said previously in other comments, I understand the thought process that I would be able to work from home. However I wonder how many employers would be understanding of the time it takes to clean me when this occurs as my husband has to help me shower and change. This is not including the pain which wouldn't allow me to concentrate on the task in hand. I have no control over when and where this happens. 
If these changes were to go ahead then I potentially would no longer be in the support group and would be expected to look for work. I definitely wouldn't be able to return to the workplace and I am frightened that I wouldn't have the skill set to secure a remote job as I don't believe they are as readily available as we are led to believe. 

Bettahm

I cannot cope with social engagement due to autism and now mental health conditions including agoraphobia, believe the mh conditions mostly due to the late diagnosed autism. I have depression and bad anxiety, the anxiety has been lifelong leading to IBS and other anxiety related issues.
I have never been able to hold down a job or deal with people. It has lead to me using alcohol to cope.
I could never cope with school as a kid.
If they said I can work from home, doing what? Totally independent of contact with others. I cant use the phone and have no computer or computer skills. I have no qualifications and no training as anything. Depression and OCD leave me with days I cant even function.
So if they cut my UC I will eventually lose my home and the way things are the will to live.

Not that they care.
Haven't they got enough blood on their hands?

cymbalfern

Thank you to Scope for the opportunity of allowing probably the most vulnerable in society to try & have some form of voice to the government. I truly believe this is a cruel & unjust potential decision that the government are trying to implement onto people who require a lot of protection, help, empowerment & support in our society. I feel if the new rulings were to happen it would be detrimental to so many innocent peoples lives. I can only reiterate how cruel this would be & a complete lack of understanding of humanity. The government should be helping the most vulnerable in society instead they seem to what to degrade people whose lives are extremely complex & challenging beyond what could ever be fully explained. How they could have such disregard for people’s lives ? Maybe a way forward for the government would be to give people CHOICE if to participate in such a work from home program. Please give people their dignity. Thank you Scope for standing for everyone. 

deelee

Hello everyone, Thank you Scope for opening up this platform to enable us to voice how we feel. I dont quite know where to begin or how to say how I feel, other than echo what others have said. In a word - scared. No one in their right minds would put themselves through a PIP "interrogation",LCW or LCWRA etc unless they really have something wrong with them. We are being judged by people who have no understanding or perhaps are not interested in understanding the needs of people with mental health issues or physically unable to get about or take care of themselves.

What was supposed to help make our lives easier, with new changes, to UC and PIP - we all hoped that this was going to be the case, but as more information leaks out, the scarier it sounds. I have been waiting for my PIP review for over a year now, and I recieve help from UC. I am not sure how I will manage when they do remove us who get help from UC off it and fully upon PIP - which would not be enough to pay for rent and food and I would need to live on the street. I haven't claimed for my mental health issues which affect me greatly and IBS. 
 I have only ever claimed for my mobility problems.

The thought that any help would be taken away from anyone with mental health issues - mobility issues - regardless of if the government assessor who would be able to decide if youre sick enough to work or not from home, just seems so contradictory.

It is like giving a stress test to a very old car or faulty car with bad breaks to test to see if the breaks really will fail going full speed down the hill. If the cars breaks are just a bit faulty or a lot faulty - a stress test will certainly cause the cars breaks to fail. This is basically how I see this whole new testing system of the governments to work. Anyone who has mental health issues will only have increased mental health issues and of course many could attempt to take their own lives. 

The government always say they will learn from their mistakes when this happens - yet here we go again down another road to diminish the support of the most vulnerable in society.
Give us a little push off the edge of the building. The suggestion that they wont need your GP results or testimony but rather rely on one of their trained people also sounds weirdly like another way to cause immense harm rather than helping us. 
 
If someone cannot work because of a mobility issue or pain or mental health issues in the first place, how does working from home improve this? Surely only the person who is living with the disability knows if they can or cant, more than any health professional ? Most of us want to live better lives and want to work or earn a living without needing to rely upon the grudging support from the government. But the reality is that most of us who claim simply cant. 
No day is the same. Every day has new challenges. Illness change and get worse as we age. 
It is so hard to speak about the daily trials I face and I read of others here. 
I fear so many of us will suffer as a result from the new proposed changes. No political party seems to want to show us the support we need. IF there is please let me know! 
We have been though enough with the pain and suffering from our own bodies. Do we really need to go through more? 

cymbalfern

I would just like to say thank you to Deelee. Please Scope & I am sure you will do your best to express to the government how awful & stressful this would be to the innocent people who struggle with health conditions & disabilities. I hope the government can see this is not progress but will make matters worse. Thank you Scope for all your help.

C_J

@deelee fully agree couldn't have said it better.

Jimm_Scope

I want to thank you all for the responses so far, including anyone who submitted anonymously via the form. We're still collecting responses so please don't hesitate to tell us how you would be affected. 

cymbalfern

Hi I was reading on the disability rights uk website regarding the dangerous cost cutting WCA reforms. If anyone is interested the news article is very informative also for individuals & organisations has advise on how to voice your opposition to the proposed policy. 

Crazyone

They make it sound so easy, just work from home! The reality is that getting employment that involves working from home permanently and from the get go, are as rare as hens teeth and not at all easy to get, especially if you are new to that sector or have issues with speech.

I've been trying for a long time to get a work from home role as I needed a needle in a haystack job to actually have one that was outside of the home. Instead I found that needle in a haystack job and then struggled in it for the next almost 6 years until I was signed off in the summer.

I am not without qualifications or experience, so I have a head start on some but with the myriad of issues I now have and my aphasia, it has made it virtually impossible.

I've no idea what I will do if they bring the proposed changes in, I cannot walk very far at all (a few steps at most) and I cannot self propel, my speech is not to be trusted at all and limbs jerk and spasm all over the place and with my chronic fatigue, any hours I would be able to manage (from home or outside the home), would be extremely limited and not enough to actually survive on....and who the (insert a not very nice word), would want to employ me anyway?

carbow32

I am currently in LCWRA as Substantial Risk. Bipolar Disorder.  I can keep myself reasonably stable without having to work and look after my children.

The last time I worked (may I mention FROM HOME .. the magic solution).  I felt the pressure of it exactly the same as I have done in the passed (out of the home).  The fact though I did have some extra money because of working I look my children on holiday for a weekend (aged 11 and 9).  I ended up having a full psychotic breakdown with voices in my head telling to take all the pills I had on me (60 Diazepam).  I called for help seconds before falling unconscious.  My children were taken in the ambulance with me to the hospital and Social Services had been called.  Luckily another family member had called a long term friend who was able to take them and it spared them going into care.

So if this is not substantial risk then I do not know what is.  It feels that they wouldn't really care if I was in the LCW group as substantial risk as long as they have taken £90 a week off of me.  Then I am back into above scenario to try and make that money up.

Another occasion I ended up in a psychiatric unit for a month.  My children were put into care.  There were no spaces in NHS hospital.  This cost the state a fortune.  Children in care and paying a private hospital.  

It does not make sense to try and do me over this £90 a week.

Antipsychotic medications have paralysed my bowels and I am having to use a lot of laxatives.  I don't think I need to explain any further.

It is lucky my children were not left without a living mother (WHO TRIED TO WORK FROM HOME).

cymbalfern

Crazyone & carbow32 comments are very insightful & useful. What is the government trying to achieve ?? It feels like the government are wishing to punish people who are suffering from health problems. Already within a cost of living crisis, why is the government looking to hurt the people who are at present just trying to exist against all their complex struggles. The government should be helping individuals who are already in desperate need not frightening people & warning them that things in the near future are going to become impossible for them to exist. What is actually going on ? I do not understand the government’s objective? Also further more I don’t trust the government to actually get this right. I am very concerned about the government’s proposed policy & I find it very distressing. What are people who are struggling with their health supposed to do ? I am in disbelief of how unjust the situation could be. Surely they can’t bend laws against human lives just to suit them ?

deelee

I personally feel that the language being used by the government is very telling.

It is put in a way where the correct language is being used - such as that it is all about giving disabled people more choices when it sounds anything but that.

Initially when they brought up the new ideas on these changes, it sounded like they were going to make assessments easier by improving how stressful it was etc and that they had taken note of the fact that about 70% cases were overturned in the claimants favour, when refused at first. 

Now it seems that this was never the case and that instead of making things easier, it will be even harder and more stressful than ever before and it now sounds like they want to make sure that the 70% of claims that are overturned, by making it even harder to qualify. 

As many have discussed here - working from home in most cases won't work for them either because instead of making life easier it sounds increasingly more stressful, which in many cases lead to becoming perhaps worse.

It seems that the motive is cost cutting and getting as many people off benefits as possible, being the main objective -  as there is a cost of living crisis and perhaps to score points with voters. 

To assume that some disabilities are almost like not as bad as others - the list that they are targeting - are all really serious issues and are not any different to any other disabilities. 

A key issue for most of us, is that if we are unable to work -  from home or a workplace -  in most cases will make very little different.

For those who are able to work -  from home or from a workplace - very often it is finding the job in the first place - that does not discriminate or does not mind you downing tools whenever your illness /disability kicks in. 

Personally, I found the LCWRA with the UC and PIP system worked and all these changes that they are wanting to introduce are designed to cut the benefit bill for the government and not to help us at all.

Instead of genuinely wanting to protect and help us it feels like they are trying to find excuses not to. As usual disabled and elderly people are easy targets. 

cymbalfern

I agree with Deelee I just hope the government in their process are not going to cut lives. Hey why not try saving lives ? 

Jimm_Scope

I want to thank everyone who gave their responses, here or on the anonymous form. We received some excellent stories to give to the consultation and MPs. Thank you so much.

onebigvoice

I have read the posts here and agree with every person here.
  This at the moment is a proposal, and as such is up for discussion.  But the government are good at what they do, be warned if they give a discussion period where people can "voice there opinions" of agree or disagree, there should still be an element of who is actually pleading our case to the DWP?
  In order for a system to go forward it has to be reviewed from time to time.  In order for this to happen, history should play a big part.
  How many success stories of "getting it right first time" to how many are actually shown that require rework, an MR or FOI because information was left off, or simply the "team decision" to award or not award is an opinion, based on what legislations says.
  Looking at the above comments, how has altering the 5 bullet points improved the ability of the person trying to claim support at a time when they need it most improved?
  It hasn't, again where are the people from the Medical Board stance in all this, this is not negotiation to get a better system its another cost cutting excercise.
  You are allowing the assessment system dictate the measure of help given.  Have any of you looked at the "new PIP's 2 Form"  This is not in plain English, its supposed to be understood by people that do have mental issues, that do have disabilities seen or not, and this also includes the Attendence Allowance forms for people over 65. 
  Things are not getting simpler and refined to allow a quicker response to forms submitted its worse, paperwork being submitted to the government by the white paper produced twice last year are still being cherry picked by the government.
  The bullet points raised were not up for debate, yet they seem to put there own slant on every thing.
  The NHS went to work and risked there lives to keep us safe, and died in some cases yet the support they received?  Millions of pounds of PPE that was unusable, run out of the protective PPE where known cases of the "Bug" were in full quarantee, yet still looked after those patients again some even died, those that looked after loved ones in care homes and could not leave for fear of infecting their own families, those people known to be infected and sent to care homes killing others including staff who went to work knowing the risk, and its these same MP that now want to decide what or how you will be assessed?
  You have already given these clueless MP's the ability to privatise parts of the NHS, get them to give it back to the NHS so that the NHS can get back to what it was designed to do.
  Explain how many involved in the Draft of this document actually has a |Medical Background, and not "I've been doing it for years so I know what is what?"  This is why we are were we are, GET BACK TO DUTY OF CARE THAT THE NHS HAS AND NEVER LOST.  The pandemic ended two years ago yet what has changed?  nothing it still takes twenty weeks to get any sort of reply?  If they were working from home then and still are then how did we get a back log, since the NHS is not working from home?