PIP 5

Managing toilet needs

For me, this is my biggest issue in terms of day-to-day living. The nerves at the base of my spinal cord were crushed and there is now permanent damage. It's easy to see that I don't walk well but nobody sees what for me is the worst part. I am incontinent. I can't feel when I pee and I get unreliable messages telling me when and how urgently I need to pee. So I wear incontinence pads all the time. On top of that, I can't empty my bladder fully because the nerves don't communicate with the muscles properly, so I self-catheterise to make sure my bladder gets emptied regularly.

As well as the bladder issues, there is the fact that without help, I can't get on and off a normal toilet. Sitting down is easier - I can just drop. Getting up is sometimes impossible, unless I can find something to pull myself up on. I have to confess to having broken various toilet roll holders and door handles in restaurants and pubs that don't have an accessible loo.

So here's the PIP question:

Question 5 - PIP form

I was sure I would score highly for this category because my toileting needs seem huge to me.

My wardrobe - more full of catheters and Tena than clothes

My wardrobe resembles that of an elderly person. I used to be acutely embarrassed by my need for all this stuff but now I just want to rid the world of the stigma associated with incontinence.

A variety of catheters + hand sanitiser

Self-cathing was a huge deal for me. I really didn't want to go down this route and tried everything else first. Ultimately though, not being able to empty puts the kidneys at risk and means that I often went to the toilet several times per hour. Now, I'm used to doing it but there is still something deeply invasive about sticking a tube up your own pee-hole. In terms of cost, they are on prescription, so I pay a monthly fee to get a prepayment card.

Raised toilet and frame

I wish they made more attractive toilet frames. We've moved a long way with mobility aids but toilet aids still look like something for a care home.

Here are the points criteria for PIP:

5. Managing toilet needs or incontinence.
a. Can manage toilet needs or  incontinence unaided.  0 points.
b. Needs to use an aid or appliance to be able to manage toilet needs or incontinence.  2 points.
c. Needs supervision or prompting to be able to manage toilet needs.  2 points.
d. Needs assistance to be able to manage toilet needs.  4 points.
e. Needs assistance to be able to manage incontinence of either bladder or bowel.  6 points.
f. Needs assistance to be able to manage incontinence of both bladder and bowel.  8 points.

So in spite of having multiple toilet needs, I score 2. I've heard this morning that the planned changes to PIP have been scrapped but this was one of the areas where they were going to downgrade the 2-pointers to 1 point because, well, everybody has these kinds of things in their home now, don't they? I hope they were only referring to grab rails, when they said that!