World Toilet Day

19th November 2018 ~ #WorldToiletDay

I am 30 years old, and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.

Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold in the urge all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening. Living with dehydration, impaired mental function and recurrent infections, simply because adequate toileting facilities are not made available to you.

#FitToBurst

This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course, I didn’t want an operation, a General Anaesthetic (in itself a huge risk due to my poor lung function) or an indwelling catheter. By no means is this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.

So, I resigned myself to the only option available to me at that time; a suprapubic catheter. With this, I no longer need to transfer from my wheelchair or depend on other people. I don’t have to struggle and suffer the indignity of using small, dirty and ill-equipped public disabled toilets. But, 250,000 disabled people in the UK still do.

Often, there is not enough room to fit a wheelchair in a disabled toilet, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists…what hoists?!

The majority of disabled toilets I have used throughout my life have been vastly inadequate, filthy, often neglected or used for storage!

I think it’s important that there are Changing Places facilities everywhere, including smaller towns, villages and rurally as there are many disabled people (like me) resident in these locations too.

#incLOOsion

The lack of such essential facilities locally makes me feel restricted, excluded from society and considered less important.


The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began.

Each registered Changes Places toilet includes:

1. – a height adjustable adult-sized changing bench

2. – a tracking hoist system, or mobile hoist where not possible

3. – adequate space for the disabled person and up to two carers

4. – a centrally placed toilet with room either side

5. – a screen or curtain for privacy

6. – wide tear off paper roll to cover the bench

7. – a large waste bin for disposable pads

8. – a non-slip floor


Join the #RevoLOOtion!

Changing Places Awareness

Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold it in all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening.  

My experience

This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course I didn’t want an operation or an indwelling catheter. By no means was this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.

So, I resigned myself to the only option available to me, that being the suprapubic catheter. I no longer depend on other people, nor do I have to struggle and suffer the indignity of using small and frankly ill-adapted disabled loos. But, 250,000 disabled people in the UK still do.

The truth about disabled toilets

Often there is not enough room to fit a wheelchair in disabled toilets, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists… what hoists?!

Changing Places

The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began. I’ll admit it’s only relatively recently, through social media groups, that I first heard of Changing Places toilets. Though there are now 1000 registered Changing Places toilets across the UK, I have yet to see one.

What is a Changing Places toilet?

Each registered Changes Places toilet includes:

  • a height adjustable adult-sized changing bench
  • a tracking hoist system, or mobile hoist where not possible
  • adequate space for the disabled person and up to two carers
  • a centrally placed toilet with room either side
  • a screen or curtain for privacy
  • wide tear off paper roll to cover the bench
  • a large waste bin for disposable pads
  • a non-slip floor

To support and raise awareness of the need for Changing Places toilets, Muscular Dystrophy UK established the #FitToBurst campaign (Keep up to date on Twitter!)

As a Trailblazer myself, I offered my thoughts in response to the question (posed on Facebook): What does it mean to you to have more Changing Places toilets?

 

Here is my full response:

To be honest I’ve never seen or used one. I don’t know if it’s because I live semi-rurally (are they located predominantly in cities/larger towns?)

If so, I think it’s important that there are Changing Places loos in smaller towns, villages and more rurally as there are people in need in these locations too.

The lack of such a facility locally makes me feel restricted, excluded from society and considered less important. I don’t know if I’m correct in assuming that Changing Places toilets are mostly in cities, but if so, it makes me wonder why. Is it a funding issue? Is it ignorance, i.e. the belief that disabled people don’t live rurally?

The majority of disabled toilets I have used throughout the years have been vastly inadequate, filthy, often neglected or used for storage!

As I say I’ve never seen or used a Changing Places loo – unfortunately. But I can think of so many people locally, young and old, who would greatly benefit from having access to one.


To read what other Trailblazers have to say click here.

Find out much more about Changing Places by visiting their website.

Suprapubic Catheters (SPC)

Have you ever looked at a disabled person and wondered how they go to the loo?

I am physically disabled (Ullrich congenital muscular dystrophy) and have, in fact, asked this question myself many times over the years. As a wheelchair-user unable to weight-bear, toileting was always my biggest obstacle. Believe me, I’ve tried every method, technique and contraption available. But if you can’t stand or transfer, HOW do you do it?

Most wheelchair-users require the assistance of at least one other person to hoist, transfer or manually lift them. From experience, I can tell you this is time consuming and challenging enough when in your own, fully adapted, accessible home. When out and about, going to the loo can be an absolute nightmare!

Public facilities for disabled people are vastly inadequate. Bathrooms are barely big enough to accommodate a manual wheelchair, let alone a powered wheelchair plus carers and the necessary room to maneuver. They are often used as storage cupboards, occupied by cumbersome baby-changing equipment and the litter covered floors are filthy. This lack of consideration and basic adaptions in disabled toilets means that many are forced to lay on these dirty floors in order to be dressed and undressed. It is degrading and wholly undignified.


In October 2011, after careful consideration, I elected to undergo medically unnecessary surgery (on the NHS) to insert a suprapubic catheter (SPC).

I have always had full sensation and an otherwise healthy, fully-functioning bladder. Despite a lifetime spent severely restricting fluid intake and holding the need to urinate, I thankfully never suffered from urinary tract infections. I was not physically incontinent, rather socially or environmentally incontinent, since public toilets fail to meet my practical needs.


Following many requests for information and advice, I have written about my personal experience with a suprapubic catheter. Please refer to the document below, which you are welcome to download and print as required.

*Disclaimer* This is my experience only, and in no way represents that of any other person(s). 

Suprapubic Catheters – My Experience

Please feel free to ask questions and leave comments!