My disabled child misses hospital appointments due to a lack of suitable toilets ...Middle East

Disabled people are being forced to stay indoors and even forfeit GP and hospital appointments because of a lack of accessible toilets for people with complex needs.

Campaigners are calling for more Changing Place toilets, a special type of accessible toilet, to be installed in public places for the over 250,000 people in the UK with severe disabilities and their families, who must sometimes “travel hours” to find somewhere usable.

Parents say that the “world gets smaller” for their children because they cannot access the necessary facilities.

While Changing Places provision has expanded from 30 toilets in 2007 to around 2,600 today as a result of campaigning, there are still many places where they are not available. In Northern Ireland there are only 1.4 Changing Places per 100,000 people.

What are Changing Places toilets?

Changing Places toilets are different from typical accessible toilets in that they are designed for people with complex disabilities. Each lavatory is at least 12 sq m to accommodate a wheelchair user and up to two carers, includes an adult-sized changing bench, a ceiling track hoist and a centrally placed toilet with space on both sides for carers.

They are now a legal requirement in new large public buildings in England and Scotland.

The Changing Places Toilet Consortium (CPTC), which promotes the installation of these facilities, wants to make sure there is at least one Changing Places toilet in every town with over 15,000 people, and within each new public building.

Katrina O’Leary’s 23-year-old daughter Sophie does not have controllable independent movement and so needs a hoist and changing table, making a Changing Places toilet essential.

Ms O’Leary, who is part of Need2Change, a group of Bromley-based mothers aiming to create awareness for people with complex disabilities and their families, told The i Paper that the facilities are not just useful for toileting alone.

“People with complex disabilities can also have sensory sensitivities, so for us, in the absence of chill-out spaces in venues, we use Changing Places toilets to take a break,” she said, adding that the facilities can also be helpful for repositioning Sophie in her chair.

Ms O’Leary said that there are “so many places” that the family have not visited in the past because a Changing Places toilet was not available. “Every family with a Changing Places user probably has countless experiences of not going out or needing to leave early”.

“Imagine going to a doctor’s appointment in a packed waiting room, you know that your child has just soiled their pad, there’s nowhere to change them. It’s really embarrassing, not only for the disabled person, but for yourself and for the other people sitting there. What do you do? Do you leave before your appointment?”

She said that wildlife parks, gardens and stately homes are examples of attractions that may not be accessible without an appropriate toilet, which means that children with a disabled sibling “miss out on a lot of normality”.

“Without these facilities you just don’t go out. You stay at home, or if you do go out you either come home early or you know your child is sitting there uncomfortably in a soiled pad, which is totally undignified and stressful for everybody.

“Your world gets smaller.

“It can be very isolating and boring, and you don’t get to experience the world.”

Ms O’Leary said that for her family, a Changing Places toilet is a “real, tangible sign that venues care. It says to us: ‘You are welcome here too’.”

“We can’t make the world inaccessible just because there’s nowhere to go to the toilet,” she said.

Karen Hoe, who runs the Changing Places toilet campaign in England, said that her family is “heavily dependent” on the facilities, as they have a 26-year-old son who has complex healthcare needs.

Karen Hoe’s son needs a Changing Places toilet because he cannot weight-bear (Photo: Supplied)

“Our whole lives, our every day, are dictated by access to a toilet,” she told The i Paper.

Ms Hoe, who lives in north-east Lincolnshire, said that her son is a permanent wheelchair user and cannot weight-bear, making the Changing Places ceiling track and hoist indispensable.

“Shockingly… most of the hospitals that my son needs to get to, we can’t go regularly because there is no suitable toilet,” Ms Hoe said. “That means we either have to forfeit a hospital appointment, which are usually essential, or we need to find a toilet en route, or we have to prepare ourselves for accidents.”

She added that her son is a “big car enthusiast” and likes seeing “stock car racing,” but “stock car stadiums aren’t equipped”. He also enjoys going to the cinema, but many of them do not have Changing Places toilets either. “We can just about manage a cinema showing as long as it’s nearby,” but “that sometimes comes with having to dehydrate him, restrict his fluid intake”.

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Last year 414 new Changing Places toilets were installed across the UK, the highest ever number of annual registrations.

“But it’s still never enough,” Ms Hoe said, adding “sometimes we have to travel hours”.

“If you build it, the disabled community will come, they’ll stay longer, they’ll spend more, they can be fully included. It’s about that commitment to being open to everybody and not discriminating, it’s essential.”

The issue was recently subject of debate in the House of Commons led by Labour MP Daniel Francis, during which local growth minister Alex Norris said that access to such toilets can be what decides whether families leave the house.

Francis told The i Paper: “One of my daughters has quadriplegic cerebral palsy. She is a wheelchair user and is unable to tell you when she needs the toilet and is still in nappies at almost 12 years of age.

“A changing bed is therefore essential to change her with dignity. Before we were aware of the Changing Places website, we sadly had the indignity of changing her in a variety of places, such as on a bench or behind a bush.

“Since we have been aware of the Changing Places map facility, we plan our days out, trips and travel arrangements around it and where we believe there will be a toilet. It has been a life changer for our family and, as we have heard, for other families.”

He added that “more can be done” to expand Changing Places provision, and said he would like to help develop a “recognised entry system” to stop the “misuse” of the toilets by people who do not need them.

A Ministry for Housing, Communities and Local Government spokesperson said: “We know how important it is for communities to have access to accessible toilets so everyone can fully participate in their local area.

“Local authorities are best placed to decide on local needs including toilets, whether they are operated by local councils directly or through community schemes.”

The Government invested £30m to increase Changing Places provision in England and Wales in 2020, and the Scottish Government has pledged £10m for facilities expected to be rolled out this year.

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