For the 250,000 disabled people in the UK who cannot use standard accessible toilets, the nearest public loo could be hours away. Many are having catheters fitted just to be able to leave the house

Fi Anderson has, over the years, developed what she calls “pee math”. Through trial and error, she has learned that the only way she can be out of the house from 9am to 5pm without needing the toilet is to limit her fluid intake to one and a half child-size cups per day. It has taken her years to train herself to survive on such a small amount of liquid and she has tricks to get past the thirst, including chewing gum to produce more saliva.

The 29-year-old has muscular dystrophy and has busy, active days: she is a mum to two young daughters and runs a charity, the Minicore Project, which she founded for those with her disability. But, for decades, what she can do and where she can go has been dictated by toilet provision. As she is unable to get out of her wheelchair herself, standard disabled toilets in Britain – which have only grab rails and no hoist to help lift someone – are inaccessible to her. “I feel like I’m chained to a toilet,” Anderson says from her home in Bolton. “It dominates my life.”

It means leaving the house for more than a couple of hours – say, to go to the cinema, to go shopping or to eat at a restaurant – is often impossible. “I quickly realised that, if I drank normally, I’d need to leave wherever I was abruptly and get home as fast as possible to go to the toilet.”

Forcing her bladder to work like this has taken a toll on her health and she is now faced with a desperate surgical solution. Ten years ago, she began to get back-to-back urinary tract infections and has since had so many that she is in a constant state of infection: feverish on and off throughout the week, fatigued and weak, and resistant to antibiotics.

She had to start wearing adult nappies to be able to go out. “I felt humiliated having to ask my carers to put them on me,” she says. Once, when she was delayed coming home from a hospital appointment in Manchester, she had to sit in her used nappy for five hours.

With no other option, she is about to have surgery to insert a suprapubic catheter. This involves an incision in the lower stomach to the bladder and the insertion of a catheter tube and balloon. It will mean that she will be able to use standard accessible toilets, as she will be able to urinate without getting out of her wheelchair. But the surgery is potentially dangerous: because of her weakened respiratory system, Anderson can’t have a general anaesthetic and there is a risk that, even with local anaesthesia, she could end up in intensive care with breathing difficulties brought on by pain or complications. She will need to be awake throughout the surgery and attached to a ventilator to breathe.

Facebook Twitter Pinterest Fi Anderson is waiting to have a catheter surgically fitted … ‘I feel like I’m chained to a toilet. It dominates my life.’ Photograph: Christopher Thomond/The Guardian

Anderson’s doctors term her situation “social incontinence”. She has full control of her bladder – no physical incontinence – but simply lacks the ability to urinate because there aren’t toilets suitable for her in public. And she is far from alone. There are 250,000 disabled people in the UK who cannot use standard accessible toilets. The solution for Anderson and other disabled people should be simple: what is known as a “changing places” toilet, a facility fully accessible for all disabled people that features an adult-sized changing bench and a hoist. But there is a chronic shortage of these in public spaces. With just over 1,000 across the country, it is common for the nearest accessible loo to be two or more hours away.

Campaigners want fully accessible toilets to be installed in public places such as large railway stations, airports and motorway services. Last month, the government announced £2m for changing places facilities at motorway services. But there is still a long way to go. Recently, Marks & Spencer came under fire for launching a range of clothes for disabled children but not having adequate disabled toilets in any of its stores.

It is easy to dismiss such facilities as too costly or relatively unimportant, but Lorna Fillingham, a campaigner who handed in a petition to Downing Street in February, calling on the government to do more to address the problem, says this is a critical issue. “Disabled people and their carers are being put at risk of both physical and emotional harm all day, every day, throughout the UK, as many towns and cities don’t have a single registered changing places toilet facility,” she says.

Fillingham’s seven-year-old daughter uses a wheelchair and she says many disabled children like hers are being changed on dirty public toilet floors because of a lack of facilities. Children who are often immuno-suppressed due to underlying conditions such as cancer or who have equipment, such as feeding tubes, need to use clean facilities. “Disabled teenagers and adults who can’t be lifted are forced to sit in their own urine or faeces,” she adds. “[None] of that should be happening in a civilised country in the 21st century.”

The alternatives to decent toilet provision are all degrading. While disabled men who can’t use standard disabled toilets have told me of having to go into a cubicle and urinate in a plastic bottle, women are, of course, unable to use this option. As I began to investigate this, it emerged a number of women such as Anderson are taking the drastic step of having medically unnecessary surgery to avoid being confined to their homes.

Marni Smyth, 23, had catheter surgery three years ago. She has type 2 spinal muscular atrophy, which means she is unable to lift herself out of her wheelchair; she is doing a PhD in art and design at the University of Huddersfield. Like many students, Smyth has always enjoyed going to bars and clubs with friends, but, with no changing places facility in the town centre, if she needed the toilet on a night out she had to go home. (Since she had her operation, Trinity Leeds shopping centre has opened, with a changing places toilet, but it is not available at night once the centre has closed.)

Like Anderson, Smyth tried to restrict her fluids to go out, but became constantly dehydrated, to the extent that her hair thinned. She tells me she still has dark circles under her eyes from the damage. “That will probably never go now, which affects my confidence without makeup.”

Surgery seemed the only way out. “Toileting was literally affecting every aspect of my life,” Smyth says. “It was the only choice, other than carrying on living with such restrictions.”

Carrie Aimes knows surgery is far from an easy way out. The 29-year-old from Worcestershire has scoliosis and joint contractures, which mean she is unable to lift herself from her wheelchair. Throughout school and university, she would spend “all day, every day” strictly limiting her fluid intake or being able to go out of the house only for a few hours. At other times, her mother, who has arthritis, had to struggle to lift Aimes on to standard toilets. “It was degrading and dangerous,” Aimes says. “I’ve been dropped on the floors of public toilets due to the lack of facilities.”

In 2011, through “sheer desperation”, she elected to have surgery for a catheter, despite it being medically unnecessary. This was dangerous: she had the operation under general anaesthetic at severe risk to her poor lung function. Having got through the surgery, she is now able to use standard disabled toilets, but has to take medication to avoid becoming incontinent because of a reaction to the catheter. “Your bladder recognises it as a foreign object and therefore constantly tries to expel it,” she explains.

Every four to five weeks, Aimes has to have her catheter changed under local anaesthetic. Her catheter has become “stuck” several times – meaning it couldn’t be changed – and she had to have multiple surgeries to fix it, each time under general anaesthetic. “Before each routine appointment, I would feel sick with anxiety, not knowing if my catheter would get stuck, thereby necessitating yet another surgical procedure,” she says.

Aimes has since changed urology teams and has so far avoided further surgery, but she stresses a catheter is “by no means a fix-it solution”. “But it’s something I must endure, since the only alternative is to return to how I was before,” she adds.

Over the past three decades, Britain has made great progress in adapting leisure and sports venues, transport and the high street to be increasingly accessible for disabled people. Fully accessible toilets are surely the next, long-overdue step. After all, this is not simply about toilets; it is a question of whether disabled people are seen as fully-fledged members of society, who have the right to enter public spaces like anyone else.

In Bolton, Anderson is on the waiting list for surgery. She tells me she is frightened about being awake for it – others with her condition who have had the procedure have told her it is “the most horrifically painful thing”. But right now, she has no other choice.