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managing toilet needs or incontinence

This activity is about your ability to get on and off the toilet, to clean afterwards and to manage emptying your bladder and/or bowel, including the use of collecting devices. This activity does not include the ability to manage clothing, for example fastening and unfastening zips or buttons, as this is covered in activity 6.

Activity scores

A - Can manage toilet needs or incontinence unaided 0
B - Needs to use an aid or appliance to be able to manage toilet needs or incontinence 2
C - Needs supervision or prompting to be able to manage toilet needs 2
D - Needs assistance to be able to manage toilet needs 4
E - Needs assistance to be able to manage incontinence of either bladder or bowel 6
F - Needs assistance to be able to manage incontinence of both bladder and bowel 8

Notes

  • This activity is not about whether you are incontinent (lose control of your bladder or bowels), but about how you are able to manage this if you are. Collecting devices include catheters.
  • ‘Aids’ might include commodes or incontinence pads.
  • This activity might apply to you if you are incontinent (wet or soil yourself) during seizures. If this applies to you, explain:

- whether you are incontinent of urine (wee) or faeces (poo);
- during which types of seizure this happens to you, and how likely it is to happen during this type of seizure;
- how often it happens; and
- whether you need any help, for example to clean yourself afterwards. If you need help, explain how often you need this and for how long you need this help.

  • You can include the social impact that this has on you. For example, some people are reluctant to go out due to the risk of having a seizure and being incontinent, and the embarrassment of this happening.
  • If you use any aids or appliances at home due to the risks from having a seizure while using the toilet, you could explain this. This might include having grab rails beside the toilet, having a toilet door that opens outwards, or using an ‘engaged’ sign rather than locking the door so that someone can help you if you have a seizure.

Things to think about

  • What could happen to you if you have a seizure when using the toilet? What is the likelihood of this happening? Include any real examples of when this has happened, and how it affected you physically and mentally.
  • Does anything else about your epilepsy (including your seizures, recovery from seizures, medication side effects, or impact of your condition) affect your ability to do any of this activity? You can include any impact on your confidence, or any anxiety about this happening to you.

Remember to include:

  • whether you can do this activity reliably (safely, to an appropriate standard, repeatedly and in a timely manner);
  • whether you need aids, appliances or help from another person to do this activity;
  • how often your condition affects your ability to do this activity (the 50% rule); and
  • the impact of any other conditions or disabilities that you have on this activity.

You will get just one single score for this activity, so make sure that you include as much relevant information as possible. You can continue on a separate sheet of paper if you need to.