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Managing toilet needs

bigglesworth Member Posts: 23 Connected
edited March 2019 in PIP, DLA, and AA
Hi, new person here :)

I am currently going through the MR stage for PIP (I was on DLA before) for a few health conditions. I have been receiving support from a local organisation for dealing with the MR but I am looking for a second opinion on some of the advise.

One of my conditions is quite bad IBS, it leaves me exhausted, causes a lot of pain and leaves me trapped in my bathroom for what can be hours on most days. It also causes a great deal of anxiety about whether I can get to a toilet in time when out.

I have been told that the toileting PIP descriptor does not take into account pain, frequency or duration of toilet visits and only counts if you either use an aid or receive physical support from another person to use the toilet. Is this correct? I have struggled to keep myself employed due to my IBS difficulties, so they really have an impact on my life and it feels a bit odd that no matter how bad it is, it still does not count :( I have plenty of evidence of treatments tried but nothing has helped much so far.


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @bigglesworth
    The CAB have a lot of information about this question - PIP descriptors for toileting.

    This question is about how your condition makes it difficult for you to: 

    • get on and off an unadapted toilet seat 
    • clean yourself afterwards
    • if applicable, manage your incontinence

    The DWP is not interested in the difficulties you have getting to the bathroom or managing your clothes - for example, unzipping your trousers or undoing a belt. If you have difficulties with these, you can explain them in question 8.

    Try not to feel embarrassed, miss out information or put on a brave face. If you do, the DWP won’t get a true picture of how your condition affects you and this can make it harder to get PIP.

    Question 7a

    Do you use an aid or appliance to go to the toilet or manage incontinence?

    • Yes 
    • No 
    • Sometimes

    You should probably tick “yes” if:

    • you're incontinent and have to use aids such as incontinence pads or grab rails
    • you use an adapted toilet seat or toilet - for example, it has handrails 
    • you don't use a toilet - for example, you use a commode or catheter instead
    • you use an aid either all the time or sometimes

    Question 7b

    Do you need help from another person to go to the toilet or manage incontinence?

    • Yes 
    • No 
    • Sometimes

    You should probably tick "yes" if:

    • someone helps you (even if it's just with your aid - for example, dealing with a used portable bidet) 
    • someone is around in case you need help
    • someone reminds you to go to the toilet
    • someone explains how to clean yourself properly 
    • you need help but don't get it 

    Extra information: 

    It’s important you tell the DWP more by explaining your situation in the box.

    It's your chance to give the DWP a true picture of the difficulties you face because of your condition. They'll use this to decide if you get PIP.

    You can also use this space to explain what help you need but don't get. 

    Aids you use

    List all the aids you use: 

    • to help you get on and off a toilet seat
    • to clean yourself
    • to manage any incontinence - clearly state if this includes incontinence pads, a temporary or permanent catheter, a colostomy bag, or similar

    Never miss any aids off your list because you think it's obvious and always:

    • explain how they help you
    • explain if you have to use them because you can't use a toilet 
    • make it clear if a health professional advised you to use them
    • include any that would help you if you had them

    Someone helps, assists or reminds you

    Make it clear if you need help but don’t get it.

    if you do get help, give the relationship of the person to you (for example, carer or friend) and explain: 

    • why they help 
    • how they help  
    • how often they help

    Make it clear if you need them to: 

    • always help you on and off a toilet seat
    • always help you clean yourself 
    • help with just some of your toilet needs
    • be on hand - for example, to help only if needed or to make sure you're safe 
    • remind you to go to the toilet, empty your colostomy bag or wash your hands
    • explain how to use the toilet or clean yourself 

    Always explain what happens (or would happen) if you don't get help. For example:

    • you're more likely to soil yourself
    • you're more likely to have an accident - for example, you're epileptic and at risk of a seizure while on the toilet
    • you're less likely to go out because you might need to go to the toilet

    It's ok to estimate how often you need help but say if you are. If it's too difficult to estimate - explain why. For example, because your condition fluctuates. 


    Safety: accidents and risk of injury or infection 

    Tell the DWP if you have or think you might: 

    • slip or fall when getting on or off the toilet
    • fall sick or get an infection because you find it hard to clean yourself

    Make it clear: 

    • why it can happen
    • how often it can happen
    • how badly it could affect you
    • how you try to prevent it - for example, you rely on a handrail or someone to help you
    • if it's because someone didn't help you
    • if it's because you get confused or have trouble remembering 

    Time it takes

    Tell the DWP if it takes you twice as long as someone without your condition to do any of the following: 

    • get on and off an unadapted toilet seat 
    • clean yourself 
    • wash your hands afterwards 

    Try to explain how long it takes. It's ok to estimate but say if you are. If it's too hard to estimate explain why. 

    Remember to: 

    • include time for breaks if you need them 
    • explain if it takes you even longer on a bad day 

    Good days and bad days

    Explain how you cope managing your toilet needs on both good days and bad and how you manage over a longer period of time (like a week). This gives the DWP a better picture of how you cope most of the time. 

    Make it clear:

    • if you have good days and bad days
    • how often you have bad days 
    • if you have bad days more often than not 
    • how your difficulties and any symptoms differ between goods days and bad

    It's ok to estimate your bad days but say if you are. If it's too difficult to estimate - explain why. For example, because your condition fluctuates. 


    Symptoms like pain or frustration 

    Explain if the difficulties you have getting on or off the toilet, cleaning yourself or managing your incontinence cause you any physical or mental symptons. For example, pain, tiredness or stress.

    It's helpful to explain the symptoms and give an example, including: 

    • how often you have them 
    • how long they last 
    • if they're likely to increase the risk of an accident or you soiling yourself
    • if they affect your ability to carry out any of the other activities on your PIP claim form - for example, you're so anxious about managing your incontinence that it prevents you from going out  


    Sarah finds it difficult to manage her toilet needs so she doesn't eat or drink properly or go out with her friends as much as she used to because she's anxious about having to go to the toilet. 

    Senior online community officer
  • bigglesworth
    bigglesworth Member Posts: 23 Connected
    Hi, an update to this. I did get PIP in the end, I failed the MR stage, waited 14 months for the Tribunal and then the Tribunal only took 15 minutes, most of that was with the Judge asking the DWP representative why X mistake had not been picked up. I barely had to say a word.

    I did not receive any points for toileting in the end, I had already received enough points in other areas and the Judge simply asked if I was happy to accept what had already been awarded without going into extensive detail about my IBS issues (which made me feel they were at least considering it, rather than outright rejecting it).

    At least this is a weight off my shoulders for a few years.
  • poppy123456
    poppy123456 Member Posts: 28,468 Disability Gamechanger
    Great news, thanks for coming back to update.
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Great to hear @bigglesworth. Thank you for sharing this.
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