What it's like to be a regular 11 year old on a day out with your family, but you have an invisible continence condition which means you need to use the toilet in a hurry? Read on for a day in the life of Alice and her family as told by her mum...
Since the age of 2, Alice has been under the local hospital and Great Ormond Street. Diagnosed with chronic Constipation which then turned into Mega Rectum and enuresis. Alice would get frequent UTI’s which we later learned her bladder wouldn’t empty properly and she had some reflux in her right kidney.
Now at age 11 Alice self catheterises (with the help of me as she still struggles doing this herself) 3-5 times a day. She also has to use a bowel wash called Peristeen, along with Movicol and Bisacodyl to make sure her rectum is empty.
Alice continues to get UTI’s which is being investigated further. She has been given a radar key, ‘no waiting’ card and has an access card.
Using the toilet away from home
Alice relies on being able to use the toilet at short notice. This can make life very stressful when you have an invisible condition and are using the toilet away from home.
It’s always been a struggle with schools, but we took her out of her old primary school and she went to another where there were very supportive. They could do with a shout out especially the two teachers who were willing to be trained so they could help Alice to use catheters so she could go on the residential trip. This wasn’t easy for Alice as no one wants a teacher doing intimate care, but she dealt with this using her humour. The teacher was amazing and Alice felt comfortable with her.
Bad experience travelling by bus
Last weekend, we went to London, a science museum trip followed by the Theatre Cafe Diner.
Our trip there consisted of getting a train, bus and a train again as there was a rail replacement.
Whilst on the bus, Alice suddenly felt poorly, had terrible pain and desperately needed a wee. My husband took her to the toilet on the bus but found it locked, there was an emergency box that said a key was inside.
He went and spoke to the driver (while Alice sat on the steps crying in pain), the driver said he hasn’t got a key due to vandalism in the toilets. It was explained to him that Alice has a condition and if he could please help with the emergency box it would be appreciated. The driver responded “it’s only half hour away”. My husband walked away as he was fuming.
No space or dignity
There was no room to allow Alice to use her Kiddiwhizz travel pot. The coach was packed, she’s 11 and self conscious. If there had been someone in a wheelchair they would have accommodated for that so why not someone with a medical condition of this nature?
As soon as we arrived at the destination both my husband and Alice got off quick and ran (Alice hobbling) to find a toilet. A few other passengers looked at me with sympathy as I got off the coach, no apology from the driver and I struggled to thank him for getting us there safely.
I’ve complained to the coach company. Whether the driver had a key or not, this should not be their policy. This was not acceptable and no one should have to hold on.
No accessible toilet at the tube station
We experienced the same in a Tube station. No accessible toilet and you needed 20p to get in. I only had one 20p on me but Alice needed to use a catheter so needed me with her. The woman who worked there was no help. A nice lady who could see my daughter was upset helped me and gave me a 20p.
I understand vandalism in toilets but if someone wanted to get in to destroy things they would one way or another. Yet I could have tried to climb over but would no doubt get into trouble.
I spoke to Alice on the way home, explaining why I was upset with the ‘system’. How if we sit and moan about it but don’t try our best to do something then how can things improve. Seeing your child in pain is heartbreaking, knowing that all she needs is a toilet and a catheter which was both visible yet we couldn’t use them is frustrating and upsetting.
Change is needed
Things need to change, children and adults with continence problems should not feel ashamed. But yet the stigma is great. They should not be left in pain and the risk of soiling because there is no access to toilets.
No child or family should have a day out ruined by their experience of restricted toilet access. If you would like to find out about campaigning to improve public toilet facilities and access, please visit the British Toilet Association website and follow them on Facebook.