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.

Not sanctimonious at all. Just putting my point of view across from the angle of having worked with the disabled in a professional capacity for a very long time, and being familiar with the complexities of the PIP assessment. As with all threads on subjects like these, there is lots of misunderstanding and misrepresentation and they tend to be short on fact. I was trying to redress the balance.

Of course there should be discourse but generally speaking disabled people have lived experience, and it’s always been my experience that this leads to a better understanding of the complexities of disability, and that everyone’s experience is different. The poster was making generalities based on something the poster had said about mobility, and completely ignoring the multiple disability also mentioned and l felt it was unnecessarily judgmental, especially coming from someone with lived experience of their own disability. That’s all.

This. Well said.

♥️To you op

My Autistic dd has had sick day today due to overwhelm and panic attacks. She said what the point of living if she can't even hold down a part time job.

Have had to talk her down again

But it's ok. Labour will stop her only tiny bit of govt support and expect her to hold down a full time job.

PIP is not an out of work benefit. If you have a look at the assessment which does assess the ability to work, you’ll find that walking ability doesn’t have much bearing. The more important elements are things like continence and cognisance. If someone is incontinent to the point where they have no voluntary control over bladder or bowel and they soil themselves, it doesn’t matter how many steps a day they can walk, they would still be judged as unfit for work.

Have a number of medical issues/disabilities myself, I am very concerned that I could potentially lose a lot of my income, so, sorry, no advice OP, other than to say I’m with you in spirit ❤️❤️❤️

Mansplaining ? I’m not a man. I thought a thread on disability benefits which is high on opinion and low on actual fact as to how they are assessed and why they are in payment may benefit from someone who has had many years professional experience in both dealing with PIP and sickness benefits, and working with a wide range of disability over many years. But if that makes me sanctimonious, thread policing and mansplaining, I’ll leave it there. Clearly someone who actually knows what they’re talking about and is prepared to share that knowledge, isn’t welcome on a thread where ignorance and conflict between disabled and non disabled people take precedence to sensible discussion.

You have made an invaluable contribution to these threads@Rosscameasdoody. It is a shame that these threads tend to spiral downwards.

I'm bowel incontinent, due to my spinal Injury, I have to use an Anal irrigation system which then means I could have leakage for 12 hours. However due to an issue with my hands I can no longer use the equipment. I have to rely on 10 sachets of bowel prep medication or ask my DP to pump the equipment for me...horribly demeaning and embarrassing. I got 2 points on my failed PIP application.

Someone who is incontinent really could not walk 14 miles a day, that's the equivalent of 28000 steps that was mentioned, so I doubt that is the issue meaning they can't work.

I rarely leave my house in case I shit myself and its happened.

I still have to work though, I manage with Acces to Work, reasonable adjustments as a disabled person and WFH. I guess I'm just lucky. UC wouldn't pay my mortgage.

I think we can agree the whole assessment process is flawed.

Bowel prep is the absolute worst. I really feel for you. It's not just what it does, but it's the getting it down. I naively thought that I've had worse in my mouth (ahem) and I could handle it no problem. Ha.

Exactly. The care element is because someone needs care. The clue is in the name. Even if the poster isn't getting the mobility element, how can someone who walks a marathon a day, be someone who can't wash, dress, feed themselves, be independent etc. It's bollocks.

You have me confused with another poster.

But again, PIP doesn’t assess the ability to work. The work capability assessment does that and incontinence to the point of no voluntary control and self soiling is a stand alone category which would put the person in the support group of ESA and they would not be required to look for work. So the distance they can walk wouldn’t be a factor.

I wholeheartedly agree with you that the whole assessment process - both for PIP and ESA isn’t fit for purpose. In your case it demonstrates how PIP is designed to screen out quite high levels of disability. And l’d hazard a guess that your PIP assessor had no experience of your particular circumstances with incontinence and didn’t understand it. Which is totally unacceptable - needing help from another person with managing your incontinence should have scored you six points just in that one category, leaving you just two points short of the standard rate daily living, which should have been possible if you have difficulty with your hands.

I also think that posters who are able to spend large parts of the day cogently arguing with people on the internet are capable of an awful lot of office jobs these days....

Are these 'office jobs' jobs that they could do working from home? Some disabled people would struggle to be able to commute to work, on a daily basis. Are these 'office jobs' employers, also open to the fact that their disabled member of staff may need time of to go to hospital appointments, or require later starts in the morning, due to needing meds to kick in, allowing them to be able to function without pain, on awakening? There is so much more, and none of them mean that a person is not able to form a cognitive, coherent rebuttal on the internet!

How many of those office jobs don't require any qualifications / experience

When you wrote this I just knew that posters would instantly respond with a plethora of reasons as to why someone that can write coherently on Mumsnet for hours at a time absolutely can't work. The interesting thing is that in many ways there is so much more opportunity for disabled people now than there ever was before. So much can be done virtually and it is much easier to do some freelancing work or to start a business online. I absolutely understand this isn't possible for everyone but there are always so many posters who seem to want to emphasise what can't be done and downplay what is possible.

My employer (and pretty much every employer I have ever worked for) has made all of these allowances and makes them available for all staff members. Flexible starts/ends are routinely agreed for parents, no-one bats an eyelid at medical or dental appointments as long as the work gets done, we've made extensive alterations to labs to accommodate wheelchair users. There is also a process for requesting full time WFH, if the role allows it.

But it does require both parties to be open minded and flexible, and open to trying things out. Not just saying "oh no, employers will never do anything different".

Yup. Always reasons why they can’t possibly, always the focus on what they can’t do rather than what they can. Such a shame - for want of a better word - to not want to even try and expand your horizons.

Maybe giving a shoutout to who these companies are would be useful. Who is your employer?

No chance of everybody being flexible and open minded and willing that with this lot

How to get these jobs though (and I know someone is going to say apply that’s not what I mean) but I more mean, if they’re fairly basic and very flexible, they will have a lot of applicants, are they going to hire me, someone with looooots of gaps on my cv (as many disabled people do) and the disabled baggage, or will they hire the person with a full cv, no gaps etc? My experience as someone who has applied for many wfh jobs (with hundreds of applicants) is that the gappy cv gets binned.

.

Over the course of my career I have worked for universities, NHS trusts, pharma companies and research institutes. The only time I faced any issues wrt lack of flexibility was with an EU-based NGO (so outside UK employment law).

Not sure what is funny about my post. How about answering it, with your list of employers, with vacancies, who are willing to take on disabled applicants@Julen7!

What makes you think we haven't tried these things before though? Or spent years looking for opportunities that fit? I can write a coherent response on the internet and indeed I used to work as a writer online and tried out every kind of freelance job I felt I could realistically do over a course of a decade. I had to work 16 to 23 hours a day as standard when I had a project on in order to be competitive and meet deadlines (I have a lot of brain fog so I can't work as quickly as most people - in fact, I'm about 50% slower). In the end this made me really ill and I actually ended up getting a type of cancer that is associated with an extreme lack of exercise (I had no time for exercise because I was working 16 to 23 hour days and was so exhausted after a project ended that I had to sleep for a week at a time). So that put an end to that idea and I am now fully focused on keeping myself alive and not progressing to stage IV on top of all my other disabilities. I also didn't come near to earning minimum wage from all that effort and my parents still had to subsidise me although I was very good at some of the work which was quite challenging/technical. I had many clients who said they would only work with me out of the other people at the same agency. So good for the ego but not viable for earning a living with keeping myself alive unfortunately. Many people who haven't tried online work have no idea about how poorly paid it is - many of those who could work at a more normal speed earned the same paltry sums and had to be subsidised by family or spouses from the general industry chat I read. Very few people made any sort of reasonable living from it.

Ok, thanks for replying.