Changing places—changing lives

by Anne Brown Scotland, PAMIS


Changing Places, a new national campaign in the UK, was launched in 2006 by a consortium of disability organisations including charities Mencap and PAMIS. Thousands of people with profound and multiple learning disabilities need ‘Changing Places’ toilets—rooms properly equipped to allow people to use the toilet with assistance or have their continence pads changed. They include an adult-sized, height-adjustable changing bench, a hoist, a toilet with space either side for a carer, and plenty of space.

Without these facilities, carers are often forced to change family members on a dirty toilet floor with little or no privacy. This is unhygienic and is also extremely dangerous, as carers must physically lift the person they care for on and off the floor. However, the alternative is to limit outings to a couple of hours or not to go out at all. Health-and-safety considerations mean that carers employed for adults are not even allowed to attempt these procedures, meaning that many people with profound and multiple learning disabilities are unable to take part in activities enjoyed by others at their day centre, school or college.

While many buildings now include an accessible toilet as standard, this facility does not meet everyone’s needs— including people with profound and multiple learning disabilities, some people who have had a severe stroke, some people with acquired head injuries and some frail and elderly people. There are almost no public Changing Places toilets in the UK. The campaign is calling for their installation in all large public places, including city centres, shopping malls, arts venues, hospitals, motorway service stations, leisure complexes, large railway stations and airports. Changing Places toilets should be provided in addition to standard accessible toilets.

Disabled artist and author Alison Lapper, who is supporting the campaign, explains: ‘From my own experience I know how frustrating and humiliating it can be to come across toilets which just don’t meet your needs. For someone with profound and multiple learning disabilities this is a common occurrence, resulting in people having to be changed on a dirty toilet floor or being forced to return home. The Changing Places campaign is so important because it is about more than just toilets; it’s about people’s quality of life.’

The following selection of real-life stories show how beneficial this campaign can be for people in the UK, and what similar facilities would mean in Ireland

Toby (8) and his mum Julie
Toby is 8 years old and has severe and multiple learning disabilities. Toby needs to use a Changing Places toilet when he is away from home, but there are virtually no Changing Places toilets in the UK. This places a huge restriction on where the family can go and what they can do. They find it is virtually impossible to do things on impulse. When they are away from home, Julie carries an aerobics mat so that she can change Toby on a toilet floor if there is no alternative. This involves Julie lifting Toby from his chair to the floor and back again—a hazardous action for both her and Toby. ‘I slipped a disc 20 years ago—my back just seized up and I couldn’t move,’ Julie explains. ‘I’m terrified that it will happen again. Getting on the floor to change Toby is the worst position for me to be in. What would I do if it happened while I was changing him and I couldn’t get up? If more Changing Places toilets were installed it would make such a difference to our lives—we could do normal everyday activities. Things that other people take for granted.’

Matthew (16)
Matthew, who lives in Wrexham, North Wales, enjoys doing lots of activities, like going to concerts or on day trips. But Matthew faces great difficulty when he wants to go out— because he can never find a toilet that meets his needs. ‘I have cerebral palsy and am quadriplegic’, Matthew explains. ‘I need a lot of support when I go to the toilet as I cannot stand or transfer out of my wheelchair on my own. I need enough room in the toilet for me and two carers, a hoist system and a height-adjustable changing bench. If there is no toilet that meets my needs, unfortunately we cannot go to that place. It is very difficult and very restricting.’ Matthew desperately needs Changing Places toilets to be installed in public places. As he explains, this would open up a whole world of possibility to him. ‘If there were Changing Places toilets in public places it would make such a difference to me, in fact I would say it could be life changing. For some disabled people like myself it can mean the difference between getting out and living your life, or staying in.’

Craig (19) and his mum Jenny
Craig, from Angus in Scotland, loves visits to the cinema, tenpin bowling and animal parks. Like any teenager, he loves to go shopping for clothes, DVDs and music. He is an outdoor person, and loves going out and about for the day. Craig has profound and multiple learning disabilities, needing total care and support for all his day-to-day needs. The lack of Changing Places toilets in public places means that Craig’s life is restricted. Craig and his family have tried to find their own solution, but this is far from ideal, as his mum Jenny explains. ‘We take Craig out in his minibus which has darkened windows so he can be changed inside. Craig is now fully-grown and taller than I am, and it is extremely difficult to change him in this way. I have to manually lift him out of his wheelchair and then kneel with him in my arms as I manoeuvre him through the door onto the floor of the van—it is absolutely backbreaking! If Changing Places toilets were provided in public places it would make a huge difference to both Craig’s life and mine. How I would love to take Craig to the theatre, shows, and exhibitions! Visits that I can only rarely make with him now.’

Sara (36) and her sister Linda
Sara, from Nottingham, is severely disabled with cerebral palsy and needs 24-hour care. She lives in her own bungalow and receives many hours of support from her sister Linda, who is determined to give Sara the chance to enjoy many of the things in life that other people do. That’s why she takes her out somewhere every day—to the shops, the pub, drama classes, or the local Church Fellowship. ‘But every time we go out,’ Linda explains, ‘it’s like the clock is ticking—we can’t really stay out for longer than three hours at a time. That’s because there simply aren’t any toilets anywhere that Sara can use, ones with a hoist and a changing bench. Instead we have to come all the way back to Sara’s bungalow, so she can go to the toilet in her own bathroom, where there’s a hoist. This means that we’re pretty much restricted to local journeys. Changing Places toilets would make a huge difference to our lives, giving us freedom and choice, and stopping us from worrying every time we go out.’

The Changing Places campaign has invited groups and individuals across the UK to get involved. The Changing Places Consortium includes Mencap, PAMIS, Nottingham City Council, Dumfries and Galloway Council, the Department of Health Valuing People Team and the Scottish Executive Same as You Team. Some of the campaign’s achievement to-date are:

  • The number of public Changing Places toilets on the UK map has increased from eight to 32.
  • 30 venues have committed to install a Changing Places toilet in the near future.
  • Plans to install Changing Places toilets in Asda supermarkets and other key venues are being developed.
  • Eight venues with Changing Places toilets won a ‘Loo of the Year’ award, and Nottingham City Council also won a national Community Care Award.
  • Significant progress has been made to secure a change to British Standard 8300 (which gives recommendations for the design of new buildings to meet the needs of disabled people) to include Changing Places toilets.
  • A factsheet on the legal issues associated with Changing Places toilets has been produced by the Changing Places consortium, together with experts in law and disability and moving and handling policies.

The incredible support and hard work of campaigners up and down the UK country has greatly contributed to this success. Many campaign groups have been formed and are making significant progress locally. In particular, local efforts in Bradford have led to the opening of seven Changing Places toilets with plans for even more, and mums Julie and Alison have been successful in getting Changing Places toilets installed in their local shopping centres. All this means real changes to the lives of families who had previously struggled to leave the confines of their house. As one family explains ,‘We can now enjoy a day out just like anyone else.’
Can Changing Places toilets also become a reality in Ireland?

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