New ESA50 incontinence question assumes 'wearing pads'.

[Kirby]

I am really distressed as I fill out a draft copy of the ESA50 questionnaire. In Question 9 I thought I would score points on needing to be near a toilet all of the time because I am at risk of incontinence but I saw they've now added 'wearing pads' and I've been informed they will assume you are wearing them and if it is believed that your doing so would lessen any problems you have in the area, then it may affect the points you migh score.

My way of coping is to always make sure I get to a toilet and not 'have an accident' if I can't get to one. So I don't want to go down that road of always having to wear a pad because that wouldn't help my distress and my anxiety because I would still be in pain and excessive anxiety trying to prevent going and also wearing pads all the time irritates me. This is inhuman and degrading and I'm wondering what rights a person would have against the enforcement of this rule.

I actually don;t have incontinence but frequency and urgency so eg sometimes I may need to go over 20 times a day in a 24 hour period.

[ladymoth]

Yes, there's also the fact that sometimes, especially first thing in the morning when joint stiffness is worse, it is difficult to actually reach the toilet.

If I didn't have an ensuite, I'd be in big trouble.

Perhaps I should wear pads so that the ensuite could be demolished or taxed or something!

[Kirby in reply to ladymoth]

Thanks Ladymoth for your reply. x

[hamble99b]

I'm wondering how these pads would be a solution?

when accidents occur we still have the difficulties of clean up and where at work is suitable to dispose of them? perhaps you cold point this out on your form.

regards,

sandra.

[Kirby in reply to hamble99b]

Good point, Sandra - thanks. Then there's having to carry them and being able to afford them!

K x

[Artmix in reply to hamble99b]

The pads often leak and you end up having to change anyway,

[chestnut7718 in reply to hamble99b]

Wearing adult briefs at work is a challenge - esp. when you soil yourself at least once per day at work. I also have a bm while asleep too. I wear top adult briefs and use insert pads and wear two pairs of gary active briefs.I change usually at a starbucks but sometime in the office bathroom.

[Maryjayne66 in reply to hamble99b]

Exactly. Only someone not suffering from it would say such a stupid thing, pads !! Really !!

[ladymoth]

That's a very good point, Sandra - I guess these idiots who compose the forms have no idea about disability at all.

Moffy x

[linlit]

i remember reading a blog on here about a lady at her tribunral hearing the dr suggesting she wore a pad to save her son having to be disterbed through the night.i often have to wake my husband through the night if i wore a pad id still have to wake him because i couldnt sleep in it .i asked my husband what he thought and he said hed sooner help me to toilet 10 times a night than have me laying next to him in soiled pad

[Kirby in reply to linlit]

Yes, and if we don't need to wear soiled pads, why should we? Is going to work so important at the expense of our dignity?

K x

[Hidden in reply to linlit]

Hi many of those better types are good as keep away from skin.

I only wear Washable when need to as don't like/get on with disposable types as no good for front/side sleepers as leak over top/side often esp as often can't deal with flood!

Where as washables like the Bambinex or snuggleblanks/blanken care wrap round with boosters and very comfortable.

Bambinex is great for day time use i had to go to a funeral in the cccold wore that and went quite a few times and didn't leak and also pretty discrete under clothes as wore to my inco nurse apponitment she said don't show your wearing and asked all about them.

Soiling side is something that i can't deal with as do have issues as lack any feel in lower back/bum/down back of legs over spine issues and said to my quack if got to stage where had no control would be off to dover and over the side of ferry with rucksack of bricks on my back!

So had better sort something out!

Has bad enough for us as is without being worse!

[pondminstrel]

hi,i think its disgusting..[.INLIT a member} read my blog and has comented on it in one of your replies..and was correct,i was asked about pads and said if i used them it would save my son getting up in the night!!...i said im NOT incontinant i have numbness in arms and legs,so i cant stand ,hence the need for my comode near the bed.other wise i would fall or wet myself...and what the hell am i supposed to do? just lie there and pee my self!! then what?whos going to help me pull the soggy pants off!!! cretins all of them !! and we have the right to dignity....whrn i requested a full report from the tribunal i recieved it written by the judge in his own hand writting and guess what he put CLIENT WAS ASKED WHY SHE WOULDNT USE PADS AND CLIENT REPLIED TOUGH...!! OMG i nearlly did pee myself lol..it was full of things like that,and as you know if they only use PART of a sentence it sounds completly different...it also said ..CLIENT CAN PEEL A POTATO!!! i was never asked that, anyway my CAB lady said we will leave that for the moment as i have asked DWP to re look at my claim as in their dessision{so sorry i cant spell today} they had used the ATOS medical Assesment in reaching their dessision...HELLO!! I recieved an appology from ATOS saying that they were going to investigate the doctor who wrote the assesment as there were to many inconsistancys!! and that they would write to DWP telling them of their findings and to disregard the doctors assesment of me!! when i rang DWP they didnt know anything about it! and seemed quite shocked and asked me to sent a copy of ATOS letter...so i of course have,im waiting now to see what the out come is,the CAB lady said that she cant see how they can refuse me....time will tell,i have only been fighting this since 2010 so lets not be hasty lol.........we have to fight and complain pet because if we dont they will win..sorry for the rant! keep me posted love jenny x

[Kirby in reply to pondminstrel]

Thanks Jenny. It is disgusting. I am not incontinent either - but if I had to wear pads all the time I would be sore and irritated because pads irritate me. It's bad enough having to wear them for my periods. The awful thing is this is the DWP who have written this into the new regs that came out on Jan 28th. And they make an assumption you are wearing pads. It is so degrading and barbaric. I hope you get some joy. I haven't got my form yet, lol, just the initial letter from the DWP but I have been reading all the notes about what ATOS mean. A lot of the questions have got nastier and meaner and less scope

K x

[esagestapo]

ATOS are always and will always play down physical symptoms, the idea behind this is, there must be some aid available to counter whatever physical disability you have. It is the Mental Health issues that can't or should not be ignored, even though ATOS will try to under score you here as well. You need a copy of the Descriptors they use, then you will see how many points you should get.

For eg Descriptor's 17 a; Cannot cope with very minor, expected changes in routine, to the extent that overall day to day life cannot be managed. 15 points. Getting about18 b; Is unable to get to a specified place with which the claimant is familiar, without being accompanied by another person on each occasion. 15 points.

I could go on but I don't want to bore you.

[Kirby in reply to esagestapo]

Yes, I have all the descriptors and the points they score! They will expect you to take meds or go for CBT for mental health. I also have mental health so should (in theory) score on both. The new regs mean they will only look at mental health q's for a mental health problem and physical descriptors for physical. It's unknown yet how they will classify fibro but whatever they do they will use it against us. They don't recognise it as physical and so can use it to justify that fibro is all in the head.

[jayjayboy]

Hi Kirby, just wondered if you had heard of the bladder and bowel foundation bladderandbowelfoundation.org You can request a card from them called JUST CANT WAIT.I just got one a few weeks ago as I have to be near a toilet as well at all times and plan everything around where the toilet is, its so you can show it in a shop etc and they are supposed to let allow you to use there toilet. You just fill in a few details on line and It was either 4 or 5 pounds. You can also go online and request a RADAR key Just go online type in Radar Key sure its £5 and you can use it in any toilets for the disabled. Hope this is of help to you.

[Kirby in reply to jayjayboy]

Thanks very much, Jayjayboy. I had recently heard about the toilet card and have it on my list of things to do! Thanks for reminding me. The thing that I've been hesitating about is wondering whether people will take any notice when you show the card! I can imagine embarrassing situations where you show the card and they look at you oddly!! It would be great if they do catch on though, make our lives a lot less stressful. K x

[jayjayboy]

My nephew has one of these cards as he has colitis and has not had any trouble using it. I was in Marks and Spencer outlet at a railway station and there was no toilet but asked and they allowed me to use there staff toilet, but can see it may be embarrasing at times.

[Kirby in reply to jayjayboy]

Thanks for your feedback - it's always good to hear of others experiences.

[nanatre]

I pee myself many mornings. Juat cant get to the loo on time, its normally running down my leg by the time I get there. I hate it! but I would hate to wear a piddly pad too!

Grrrrrrrrrrr

[Kirby in reply to nanatre]

I know what you mean!

[Maryjayne66]

Me too and I have no control of the backpassage, there is no stopping it, I too have been kicked off esa, they say I'm not incontinent because I don't wear pads ( I do wear toilet paper 24/7 ) that doesn't count apparently, shocking, I'm taking dwp to tribunal.