An entrepreneur who relies on a feeding tube says they’ve been forced to splash out hundreds of pounds hacking holes into their clothes because high street fashion simply doesn’t work with their medical kit.
Bailey Smith, from Milton Keynes, lives with a genetic condition that causes severe gastrointestinal problems, leaving them unable to get enough nutrition without medical help.
They recently had surgery to fit a feeding tube, which keeps them fed and hydrated for up to 20 hours a day – but sent their wardrobe into meltdown.
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“I hadn’t thought about how it would impact my clothing and what I could wear comfortably until I was trying to dress in my old clothes,” the 28-year-old told Need To Know.
“I have to be wary of trousers and top placement, especially for anything tight-fitting.
“Initially, I would often wear athleisure wear or tracksuits, having not found suitable and comfy clothing I liked.
“I didn’t feel I could wear, and often felt underdressed or just not ‘me’ when out and about.”
Dresses, jumpsuits and winter coats suddenly became no-go zones, leaving Bailey feeling like they’d lost the ability to express themselves through fashion.
Every outfit became a logistical nightmare: where the tube would sit, how the fabric would pull, whether they could reach it to take medication or drain their stomach.
With no suitable clothes on the high street, Bailey began adapting everything by hand.
They cut holes into pockets, taught themself to sew neat buttonholes and altered jumpsuits, coats, denim and occasionwear – all while battling the limited energy their condition brings.
They said: “I started with just cutting holes in pockets and hoping the material wouldn’t fray too badly.
“When you have an energy-limiting disability, time is precious, but without the ease of buying straight off the shelf, I have to factor in the time it will take for me to adapt the clothing.”
But the cost rocketed.
Bailey ended up spending £600 on just five adapted items, plus more was wasted on clothes that didn’t fit or still needed altering.
Instead of getting dressed and heading out, every trip required planning around access points, tubing routes, wheelchair position and their symptoms.
They said: “It’s quite frustrating knowing there will be an additional cost on top of the dress itself.
“It’s just another example of the additional costs disabled people have to pay because clothing isn’t designed with us in mind.”
Relief came only when Bailey discovered Intotum, a UK brand creating clothing for seated wear and medical devices.
For the first time in years, Bailey didn’t need scissors or sewing skills just to get dressed.
Buttons, seams and waistbands actually sat where they needed them, meaning they could stay warm in winter and dress smartly without discomfort.
But Bailey says their ordeal shows a far bigger issue – disabled people routinely fork out extra cash on clothing because the fashion industry still ignores them.
Research shows disabled Brits already face nearly £1,000 in extra living costs every month – and clothing is yet another hidden bill.
Now Bailey finally has clothes that work with their body and their feeding tube.
But the journey was exhausting, pricey and completely avoidable, and they’re determined to expose what they call the hidden “clothing tax” disabled people are forced to pay.
They added: “Disability is hugely diverse in itself, and there isn’t a one-stop shop to achieve accessibility for all.
“But accessibility does benefit everyone, and it’s time it’s no longer an afterthought.”
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