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Thread: Incontinence Question

  1. #1

    Incontinence Question

    Hi All!

    Just looking for a bit of help…

    Applied for PIP was turned down, MR turned no change and now I have received my tribunal paperwork so in the process of building my case!

    Bit of info I have a lesion on L5 area of spine and damage to my root nerve. This effects everything below my waist so I have numbness and weakness in my legs etc but one of the main things it effects is my bladder/bowel. I have an overactive bladder caused by nerve damage so basically urgency and pretty much no control.

    In my form and MR explained in great detail how this has an effect on me going out and using public transport etc. Obviously wetting myself in public is a great fear and does cause me stress and anxiety but I have no diagnosis of anxiety from the GP and do not have treatment for this. My GP understands how my incontience effects me but doesn't feel I need to be medicated for anxiety.

    So on my appeal paperwork DWP have stated that my incontinence cannot be considered under the planning and following journeys activity and my toilet needs is addressed under managing toilet needs activity. That I have no diagnosed mental health condition and has no prescribed medication for anxiety.

    I was given 2 points in the managing toilet needs for using pads… although in my case pads do not manage my incontinence at all but was told this was the maximum points I would get because I can change my pads myself and take medication.

    I have spoken to a PIP adviser who told me that if you have incontinence the effect on your everyday life for example going out should be taken into consideration.

    So basically where on the managing toilet needs does it cover something like going out? For me I have to be within meters of a toilet at all times. My mobility issues have an effect as well as I can’t always get to the toilet in time.

    I find it crazy that incontinence is so overlooked!

    Any help or advice would be great


  2. #2
    Senior Member
    Join Date
    Mar 2014
    The problem is that the planning journeys activity only looks at whether you are mentally capable of planning and following a journey - i.e. normal cognitive function, can read or ask the way, follow directions, know where you are etc. The moving around activity is purely about the physical act of walking. Neither of these take into account incontinence issues, which as you say, rely on your ability to physically deal with using the toilet or cleaning yourself up after an accident. I think DWP would argue that you are able to plan a route and follow it successfully but chose not to for fear of incontinence problems as they seem to take all these things in isolation.

    I have bladder problems for similar reasons and the gynaecologist I saw prescribed self-catheterisation along with medication which has helped as my bladder doesn't overfill and then overflow, and the meds help a bit with the urgency. I still leak at times, but using the catheters three times a day to make sure I'm properly empty has made it more manageable. It also means if I have to go out to hospital etc I can properly empty my bladder with a catheter before leaving the house and that minimises the risk of a major accident. It might be worth asking your continence nurse/doctor if this would help you.

  3. #3
    Thank you for your reply.

    It's so frustrating! Yes can totally understand how incontinence doesn't stop me from planning and following a journey and more my fear.

    I am currently seeing a continence nurse so trying different medications to see if it helps before they move me on to catheters which I personally think is my only option.

    I mean I will try and ague my point, I haven't been awarded PIP so might as well try! I just can't believe how little consideration is given to incontinence. I can understand it can be managed but its still very disabling.

    Thanks again

  4. #4
    Senior Member
    Join Date
    Jan 2015
    North Lincs
    The toilet needs question doesn't take into account whether you can actually get to the toilet in time, which to me isn't fair at all and they will only give you 2 points for needing aids (ie pads etc) if you can actually use the loo and clean yourself up whether you have continence problems or not. I have arthritis and IBS and can't always get to the loo in time because I'm so slow at getting up the stairs, and I only got 2 points on toilet needs because I need grab rails to get on and off the loo. Like you, I'm anxious when I'm out because I have had accidents while out in town and couldn't get to the loo in time and it's horrible, and I did tell them that it can happen even when I'm stood right outside the toilet at home as it comes on so suddenly and urgently sometimes there's not a lot I can do about it, and it sounds like you're the same. On the journey planning you can get 4 points if it causes overwhelming anxiety and I explained my constant fear of having accidents since it has actually happened to me and longer journeys have to be planned around toilet stops, but even though I'm on anti depressants they took no notice and assumed that just because I go to uni then I'm fine, even though I told them about having to dose myself up with immodium and my high strength codeine painkillers to make sure I get there without having a flare-up. I even explained that I can't do this too regularly as it makes me go the other way and I end up with impactions so it's a constantly stressful balancing act, but they still didn't take it seriously.
    It does seem that the points system is set up to trivialise incontinence and how badly it affects people's anxiety levels as well as the physical side of it. It's ok them claiming it's not a big deal and it's manageable, but until they've been in that situation themselves, they wouldn't have a clue just how disabling it is!

  5. #5
    Senior Member
    Join Date
    Nov 2011

    I have incontinence the other way and I explained I get ill dizzy and feint due to my bowel problem as well as other physical problems including anxiety.

    I need someone with me to manage this due to being ill.

  6. #6
    Thank you for your replies.

    Incontinence is really underestimated in PIP. For myself if I have an accident I am unable to wash my clothes due to mobility, my partner does all that as I am unable to bend down to reach the floor and can't get clothing in and out of the washing machine. I was told by DWP that washing is classed as housework which is not taken into consideration! My arguement is that if someone has to wash my soiled clothes then surely it means I need assistance to manage my incontinence?

    I mean I do not have anxiety as such, my anxiety is caused by a physical problem and only comes when I am faced with having to leave my home so in DWP's eyes as I do not have anxiety and not treated for a mental health condition therefore I do not fall into that catagory. Anyone who has incontinence and has had an accident in public will understand how degrading it is but the DWP fail to have any understanding of this.

  7. #7
    Senior Member
    Join Date
    Mar 2014
    The problem is that no domestic chores are taken into account for PIP. Managing toilet needs only covers the ability to get on and off the toilet, wipe oneself, change pads, deal with catheters and when necessary change clothes. Washing clothes isn't deemed relevant as clothes have to be washed whether or not you have continence issues. To gain more points for assistance you have to be able to show that you are unable to use the loo or change pads or clothes or use catheters etc without the physical intervention of another person.

  8. #8
    Senior Member
    Join Date
    Apr 2014
    I would like to discover what is the definition of someone who cannot manage incontinence of the bowel.

  9. #9
    New Member
    Join Date
    May 2016
    I had a home assessment on Friday one of my problems is bowel incontinence, I also have mobility problems so need help getting washed and changed, the lady that assessed me explained that because another person has to physically help wash me that's classed as cannot manage incontinence needs. When she first came in I mentioned that I had bowel incontinence and that I want her to be aware incase I have an accident during the assessment, when it came to the part about being anxious outside it was her that said to me I clearly was as it was the first thing I mentioned when she came in. I did explain to her that when I'm out I get myself in that much of a state at the thought of messing myself that I do it and that its a vicious circle, she seemed to agree with me and said that's very understandable.

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