Toby and Julie

Julie's son 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 until recently Julie and Toby had never used a facility in a public place that met their needs. As a result Toby has to be changed on an aerobics mat on a toilet floor when the family is out and about. This is frustrating and exhausting for Julie, who finds it a real struggle to lift Toby and is forced to bend her back for long periods while she changes him. Toby also finds the experience both distressing and uncomfortable.

 Julie recently visited Centre MK because she heard that they have a Changing Places toilet. As Julie explains, "Would I go to my local shopping centre in Leicester, which is only 20 minutes away but I have to come home from after just a few hours, or would I travel to Milton Keynes where my family and I can have a whole day out? I'll go to Milton Keynes! If more Changing Places toilets were installed it would make such a difference to our lives.”

 

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 Julie's son Toby is 8 years old and has severe and multiple learning disabilities. He has been diagnosed with a unique syndrome, which includes cerebral palsy, a visual impairment and a severe learning disability. Toby is a wheelchair user for any more than a short distance and does not use speech.

Toby requires 24-hour support as he cannot be left alone, and often does not sleep through the night. He needs to be supervised when eating and drinking and needs constant toileting support, as he is doubly incontinent.

Toby needs to use a Changing Places toilet when he is away from home. He requires a height adjustable changing bench that can be lowered to allow him to transfer from his wheelchair to the bench with support. Space is crucial, as Toby needs a carer with him at all times as well as space for his wheelchair when he is not in it. Toby's learning disability means that he is likely to need the support of two carers as he grows older. Julie would also like to have the use of a privacy screen, as she cannot risk leaving Toby outside when she wishes to use the toilet herself - this would make the experience more dignified for both herself and Toby.

There are virtually no Changing Places toilets in the UK. For Julie and her family this places a huge restriction on where they can go and what they can do. They find it is virtually impossible to do things on impulse.

"Last Saturday we went on a 25 minute drive to the shops. But as soon as we got there Toby needed to be changed so we decided to take him home because there were no suitable facilities nearby. By the time we'd gone home and changed Toby we couldn't face going back, so we had to wait another week for the opportunity to go again. It’s frustrating and exhausting."

Planning a day trip centres on where Toby can be changed and the family is often forced to make risky compromises.

"If we want to go out for the day as a family we sometimes have to limit the amount of liquid Toby has - this isn't good for him but at least means he can have a day out without having to be changed every three hours. Toby is absolutely sodden when we get home, but there's nowhere to change him. It's not right that a child should have to be so uncomfortable. But the alternative is for him to stay at home."

When the family is further away from home Julie carries an aerobics mat so that she can change Toby on a toilet floor if there is no alternative. This means that Julie has to lift Toby from his chair to the floor and back again - a very dangerous move for both her and Toby. The only other option is to change him in the back of the family people carrier, which provides little comfort for Toby or Julie. Julie finds it a real struggle to lift Toby and is forced to bend her back for long periods while she changes him. Toby finds the experience both distressing and uncomfortable.

"I won't be able to do it much longer, I can carry on for a while like this, but that will be it. What I'll do then I just don't know. I slipped a disc 20 years ago - my back just seized up and I couldn't move. 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? Life is becoming more difficult in this respect the older Toby gets - for most people it's the other way around."

Julie and Toby had never used a facility in a public place that meets their needs until recently.

 "It's so frustrating when places say they are accessible, but then when you arrive, the facilities don’t even come close to meeting our needs".

 Julie recently visited Centre MK because she heard that they have a Changing Places toilet.

"Would I go to my local shopping centre in Leicester, which is only 20 minutes away but I have to come home from after just a few hours, or would I travel to Milton Keynes where my family and I can have a whole day out? I'll go to Milton Keynes! If more Changing Places toilets were installed it would make such a difference to our lives. They would improve our quality of life dramatically – we could do normal everyday activities that other people take for granted. Toby and I would be so much more comfortable and we wouldn't have to make such big compromises. Build it and I will come."

 Julie is currently campaigning for an inclusive play facility, suitable for all, to be installed in Leicester. She wants a Changing Places toilet to be built as part of this facility so that families with children with a profound/severe and multiple learning disabilities can enjoy a day out, just like other families.