Managing toilet needs or incontinence

dan6161 · June 4

Hi,
Just looking for a bit of advice please.

I am currently helping a Family Member to update his Scottish Adult Disability claim as he has had a change in circumstances, he currently gets the Mobility Component and Lower rate of Daily Living.

Because of the medication he is taking for his pain this has caused him to have very bad diarrhea, up to 3 Times a day. He requires his Wife (Who is also his carer) to help him with this, to help him clean afterwards, and to make sure his Incontinence pad is fitted correctly to avoid any leaks.

He has been assessed by the Bowel Nursing Team as requiring Incontinence Pads which they supply him with.

I have looked at the Managing toilet needs or incontinence section which he needs to complete, and I am unsure if he would qualify for:

a. Needs to use an aid or appliance to be able to manage toilet needs or incontinence. 2 points

Or

a. Needs assistance to be able to manage toilet needs. 4 points

Or

a. Needs assistance to be able to manage incontinence of either bladder or bowel. 6 points

Any Help would be much appreciated.

chiarieds · June 5

Hi @dan6161 - sometimes a 'Change in circumstances' doesn't lead to a higher award; it all depends on whether his difficulty with managing toilet needs would give sufficient additional points to change his standard award to an enhanced award for this daily living component.

However, I would say if he can't manage his toilet needs on his own, which seems to be the case, then 'maybe' 4 points might be the one, as he's not actually incontinent, so I doubt he'd get 6 points.

All you can do is describe his difficulties, & any problems he would face if he tried to sort out a fresh incontinence pad himself. So, explain exactly why he can't do this, & why, perhaps using an aid - there are bottom wipers, he can't manage to clean himself afterwards, as it could be otherwise argued that with an aid he could manage his toilet needs, & would therefore only possibly score 2 points. What has happened when he's tried to manage on his own?

Will he need to continue with this pain medication/is there no alternative, if not, say so? How long is he expected to need this pain med/is the treatment ongoing? I'm just going off PIP here, but normally with a Change of cicumstances, the 'change' needs to have been for 3 months, & be expected to last at least a further 9 months. If this is also the case with ADP, then say when this change began (even if it's before they put in for a Change of circumstances), & if it's expected to last.

The devil is in the detail.

Judyteen · June 5

@dan6161

You're absolutely correct in the information you have kinsmdly given. The only matter I think that when needs change, you are correct that you need to report it to ESA or UC and PIP if you're circumstances have changed. The only issue then is that both UC, or ESA and PIP will now reassess the claim as a fresh claim. Then there is the matter of the DWP payments. I know first hand from personal experience that PIP will nor reassess they will send out the original form , on which the change can be recorded, along with any other ongoing medical or mental health issues. So this gentleman and his wife, if they have a joint claim will have to begin the process from the beginning. Hopefully they won't have to wait too long for the new assessments to be carried out and assessed.

Oh , they have pull up pants for incontinence on Amazon. They give much more dignity than pads, been there done this myself, you can buy them in all sizes, and along with the wipes you've mentioned they may be a better or alternative selection for this gentleman. Hope he puts in for the 6 points as I believe his wife is the one who is doing the cleaning and changing herself. Good luck and I hope all gorges well

dan6161 · June 5

Many Thanks for everyone’s help, some things that may or may not be relevant is that due to arthritis pain he has been and will be on medication long term, the strong medication means that without the pads he would never make the toilet in time as they cause extreme diarrhea with very little warning (Minutes) and also cause the urge to continue to go when you have nothing left so to speak. There could also be a reaction between the Painkillers and his high blood pressure tablets making this side effect worse, and of course both Tablets he needs to be on. He is not claiming UC or ESA just ADP and his Wife gets carers allowance, I want to get the wording right, but at the same time not paint a really disgusting picture due to the nature of his problem.

Santosha12 · June 5

https://forum.scope.org.uk/discussion/comment/1034453#Comment_1034453

Hi @dan6161, I can see there's some really good advice you've received here; from your last post (and in particular, your last sentence which I can understand only too welI unfortunately), I thought I'd just add a bit of an example from my experience, in case any of it helps you at all. NB PLEASE: A LITTLE BIT (POLITELY) GRAPHIC ABOUT PRODUCTS NEAR END OF POST.

When I applied for PIP/had assessment in Dec 22, I was so politely wording my bowel issues I did not say/convey accurately, quite how severe it was, I was turned down and was awarded at my Appeal, at Tribunal in March 2024.

In between all that, I applied for LCWRA in Aug 23 and was awarded, I think 15 points, immediately and was awarded LCWRA. I did convey how bad it was (makes me housebound/5 bowel diagnoses since then, in addition to 25 other diagnoses - some of which also affect bowel problems because of medications so can understand/relate to what you say about the painkillers).

I guess the point I'm making is you can be direct about your family members' daily experience. When I was latterly direct, I wasn't impolite but if, to be honest, you have to use words that we might not like to (ie whether it's faecal incontinence, leakage, more full bowel evacuation/incontinence, on occasion, then you should IMO, in order to give the fullest picture you can of what he is experiencing.

On a point about pads. I was initially refused pads (lack of funding) eventually got them prescribed but they are only for urinary incontinence and my NHS won't prescribe anything else nor pull ups. I don't know if your family member has been prescribed urinary incontinence pads only, in my experience it's still much better than nothing so I'm not complaining especially after waiting nearly a year without which was both very costly and very distressing too.

Age UK Incontinence is particularly good, (Age Co is owned by Age UK). They have a section on bowel incontinence but you have to read each product prescription very carefully (I think there's c 10 listed) as they are not all for bowel incontinence, even though they're under that section. If your family member is going out and about, they might want to purchase something like this for added reassurance/security as they have proper odour control mechanism within them, some contain gel to dry up leaks. They cost around 50p each from memory.

Anyway, all the very best with the Disability Claim and take care. Please feel free to ask if you have any questions.

Managing toilet needs or incontinence

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