I live with chronic UTIs because I can’t access public toilets in my wheelchair

Toilet sign with symbols

Thinking about whether or not we’ll be able to relieve our bladders when out in public isn’t something that ever crosses most of our minds. After all, being able to use a toilet in private and exactly when we need to is a basic human necessity. Yet wheelchair users are consistently denied this right because of the lack of accessible toilets in public spaces.

When out and about, they often have to hold their bladders the entire time, making them more susceptible to urinary tract infections (UTIs), which typically occur when bacteria makes its way into the urethra. Holding your bladder doesn’t cause the infection itself — not regularly passing urine means that bacteria sitting around the urethra opening isn’t being flushed away regularly, making the chance of it travelling and multiplying more likely.1

Wheelchair user Kerry Thompson suffered a UTI earlier this year so severe that it took over a month and three rounds of antibiotics to clear it. It’s not uncommon for her to not use the toilet for stints of around nine hours, taking only small sips of water during this time because she worries about not being able to use a public toilet.

“Any time I’m out I limit my water intake severely,” she says. “I use the tiniest water bottle I can find and probably have three to four sips maximum in the space of four hours if I am outside the house.”

“My hair is falling out, my mouth is constantly dry. There is just this constant underlying thirst”

A paramedic was sent to Kerry’s home to treat her most recent UTI, both due to her mobility challenges and because her prior UTI had been so severe. She was asked how much water she’d been drinking and was told that limiting her intake was “extremely dangerous”.

Dehydration can contribute towards a UTI developing as you’re likely to be passing urine less. It can also exacerbate the symptoms of an existing UTI, making passing urine more painful and urgent, as well as increasing the likelihood of accidents. Limiting her water intake long term has also impacted other areas of Kerry’s health.

“My hair is falling out, my mouth is constantly dry,” she says. “There is just this constant underlying thirst.”

“I make the decision between being able to use a toilet and going out at least once a week”

Like Kerry, Michaela Hollywood relies on a wheelchair and finds it difficult navigating public toilets. She’s struggled with UTIs since she was 14 and has been hospitalised because of complications more than once. Being allergic to a number of antibiotics, treatment options can also be limited for Michaela. She constantly has to decide between being able to use a toilet and socialising.

“I went to a transport museum recently and didn’t use the toilet for around 12 hours,” she says. “I make the decision between being able to use a toilet and going out at least once a week.”

Equal access and the law

Beneath the 2010 Equality Act, equal access to toilet facilities for disabled people and employees must be provided by law, while additional duties of care are placed on public bodies such as councils, schools, and hospitals. While the law is clear on what is required, enforcement of these measures has been lacklustre.

Businesses might not make reasonable provisions for disabled people until there is a complaint. This transfers responsibility onto disabled people rather than holding institutions who are obliged to support and make space for them to account. It can also prolong the trauma of a situation where disabled people may be left feeling embarrassed, frustrated, or undignified. Nobody should be forced to justify why they ‘deserve’ to have access to hygiene facilities. In 2014, DisabledGo found that out of 3,716 UK restaurants visited, 40% had no disabled toilets.2

Some disabled people have to resort to being changed uncomfortably on toilet floors

Not everybody is able to advocate for themselves, either — particularly those already made vulnerable beneath the system.

Even if a venue does have a disabled toilet, it may not adhere to Changing Places’ toilet guidelines — a consortium dedicated to making toilets accessible. This means there’s often no adult-sized changing table, or enough room for a wheelchair and a helper to fit into the toilet together. Some disabled people have to resort to being changed uncomfortably on toilet floors. More commonly, they aren’t able to use these ‘disabled toilets’ at all, leaving them no other option but to hold their bladder.

A Changing Places toilet provides enough space and support for those with severe spinal injuries, muscular dystrophy, or other mobility conditions to use a toilet more comfortably, with the help of a carer if they need to. They also provide an adult-sized changing table with additional supports for those that needed to be lifted.

“I have had accidents in public, you worry that people can see — it’s embarrassing. It brings on anxiety attacks where I just want to go straight home and not go out the next day”

Kerry says she’s been out on many occasions where her husband and her 90kg, 18-inch wheelchair haven’t been able to squeeze into a disabled toilet.

“My husband is 5 ft 8 so it can be really hard,” she says. “He has to be able to lift me in a safe way, sometimes maneuvering bins out the way just to get me to the toilet. Sometimes it’s not possible at all and he’ll say ‘I’m sorry, but you’re going to have to hold it this time’.

“I have had accidents in public, you worry that people can see — it’s embarrassing. It brings on anxiety attacks where I just want to go straight home and not go out the next day.”

How does this affect mental health?

Dealing with constantly being denied toilet access and subsequent UTI infections has had negative mental health implications for both Kerry and Michaela.

“My mental health has become very low,” Kerry explains. “I stop going out because it’s comforting to know that if I have an accident, my husband will help me and we can sort it out in private.”

It’s not unusual for Kerry to resort to wearing “really thick Tena Lady pads”, so that if she is suffering from a UTI or just needs the toilet and can’t find one that’s suitable, she can “have an accident discreetly without anyone noticing”.

Michaela says the effect on her mental health has been huge. She describes not being able to “function” and feeling constantly tired during bouts of UTIs and during treatment, as well as feeling guilt over the “burden” she places on hospital services.

She attends a Bingo game every Thursday, and has to give up being able to use a toilet until she gets back home. She’s become frustrated and doesn’t understand why businesses from her local town in Northern Ireland can’t “come together to fund and build an accessible toilet”.

Belfast city centre is around an hour’s drive away from Michaela’s local area, which is the closest place to her that has a few toilets she can access and use. She explains that she’s very prone to becoming septic, which can happen in extreme UTI situations, drastically increasing the severity of symptoms and reducing quality of life.3

“I know the reality of living with a chronic disability, but I won’t be a prisoner in my own home”

“Doctors always enquire about how often I am emptying my bladder,” she says. “But there is an element of having to live my life. I know the reality of living with a chronic disability, but I won’t be a prisoner in my own home.

“We have had enough of not being able to simply empty our bladders. The tide is beginning to turn in terms of toilet provisions, and I’m encouraged by that — but it needs to pick up momentum.”

Where Kerry lives in Milton Keynes, there is one Changing Places toilet in the town centre, though it’s rarely open past 6pm, restricting her social activities to daytime hours. When travelling outside the town centre, the situation is even more difficult as there often aren’t any suitable toilet provisions at all.

“I have become quite housebound, which is sad because I’m actually quite an outdoorsy person,” she says. “I like to meet new people and be with friends, but I have to restrict myself. If there was better access to Changing Places toilets, I’d be able to use the toilet more freely — it would really help me.”

Kerry feels “lucky” that her UTIs have never spread to her kidneys. But she was rushed to hospital with kidney stones recently, and dehydration can contribute to these forming.4

She’s been told there is a chance they will pass on their own if she drinks enough water, though Kerry doesn’t think she’ll be able to manage the recommended amount given her circumstances.

What support is available?

Michaela’s doctors empathise with her. They stress that she shouldn’t be going more than three hours without emptying her bladder, but share her frustration over the lack of accessible toilets.

“They are horrified by the current situation,” she says. “They are in solidarity with me on this issue and I feel less alone in that regard. It’s really a matter of businesses working together with the government and disabled people to solve this.

“Westminster has stepped in to the situation in Northern Ireland with a proposal that would require all public buildings to have the right toilet access for us. That’s a big step in the right direction.”

Wheelchair users should be able to use public toilets with the same agency and dignity the rest of us are afforded

New proposals for increasing Changing Places provisions in large public buildings in the UK were announced at the end of 2018, which would include new shopping centres, stadiums, and theme parks. At the same time, £2M was pledged to building more Changing Places toilets in more than 100 NHS hospitals.

Though much of this work has yet to actually take place, and for those living with severely limited toilet access and repeated UTIs, the proposed changes might be too little, too late. Wheelchair users should be able to use public toilets with the same agency and dignity the rest of us are afforded — without this, their physical and mental health — as well as their quality of life — suffers.5

For more information on Changing Places toilets and how to support the cause, visit: changing-places.org, pamis.org.uk or musculardystrophyuk.org

The featured header image shows a sign with toilet symbols, including a wheelchair symbol that signals towards the disabled toilet. This depicts inclusivity when it comes to toilet access, but also the irony of many disabled toilets not meeting the needs of wheelchair users

References

1. Al-Badr, A., & Al-Shaikh, G., Recurrent urinary tract infections management in women, Sultan Qaboos University Medical Journal, August 2013, vol 13, issue 3, pp 359-376

2. DisabledGo audit, Government concerned at ‘shocking’ evidence of the inaccessibility of the British high street to disabled people, despite their £200 billion spending power this Christmas, Gov.uk website, 2014

3. Wagenlehner, F., Wullt, B., Ballarini, S., Zingg, D., & Naber, K. (2017). Social and economic burden of recurrent urinary tract infections and quality of life: a patient web-based study (GESPRIT). Expert Review of Pharmacoeconomics & Outcomes Research, 18/1: 107-117.

4. Han, H., Segal, A., Seifter, J., & Dwyer, J. (2015). Nutritional Management of Kidney Stones (Nephrolithiasis). Clinical Nutrition Research, 4/3: 137.

5. Wagenlehner, F., Wullt, B., Ballarini, S., Zingg, D., & Naber, K. (2017). Social and economic burden of recurrent urinary tract infections and quality of life: a patient web-based study (GESPRIT). Expert Review of Pharmacoeconomics & Outcomes Research, 18/1: 107-117.

Rachel Mantock

Deputy Editor, The Femedic

A feature writer who started out in lifestyle and wellness, Rachel joined The Femedic after becoming frustrated with the way women’s bodies and intimate health were being reported on. She wanted to talk about the good, the bad, the ‘ugly’ and the ‘really ugly’, with no topic too taboo to investigate. From conversations with the women she meets everyday to speaking with doctors, she’s constantly surprised by the amount of misinformation and lack of research around women’s health issues. She’s determined to raise awareness of the female health issues that are prominent in minority groups and to get more women talking shamelessly about their bodies and experiences.

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