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21 August 2017

Sara and Linda's Story

Sara Brett, 36, from Nottingham, is severely disabled with cerebral palsy and needs 24-hour care. Sara lives in her own bungalow and receives many hours of support from her sister, Linda.

Sara and Linda

Linda’s devotion to Sara is clear. She is determined to give her 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 – with a hoist and a changing bench. Instead we have to come all the way back to Sara’s bungalow, so Sara 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”.

Full Story

Sara Brett, 36, from Nottingham, is severely disabled with cerebral palsy. She can’t talk, feed herself or wash herself. And she can’t walk or support herself physically. As a result, she needs 24-hour care. On weekdays, she goes to a day centre. For the rest of the time, she gets support through the Independent Living Fund. This covers 44 hours of paid care by her sister, Linda, plus agency staff to sleep over at Sara’s bungalow at night. Linda also provides many extra hours of unpaid support.

“I’m happy to do this”, says Linda, who is 20 years older than Sara, “because I love my sister very much. She’s always been such an important part of our family. In fact, I’ve been a carer all my married life. When Sara was growing up, I used to take her out and about with my own two children. Then I started providing substantial support to Sara when my parents were no longer able to, because of ill health. And, until recently, I was caring for them too. I’ve now been caring for Sara full-time for ten years. In that time, I’ve only had four days off.”

Linda’s devotion to Sara is clear. She is determined to give her 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 – with a hoist and a changing bench. Instead we have to come all the way back to Sara’s bungalow, so Sara 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. We often also have to leave places early and if Sara needs to leave, then her friends also have to. It’s not fair on Sara and her friends – nor me, for that matter!

“We sometimes go out with Sara for more than three hours, taking a commode for her to use. But this is far from ideal – it means we still have to lift her to and from the commode and, as my husband and I get older, this gets harder. Sara is quite good at ‘holding on’ for a long time – but this must be unpleasant for her, plus she sometimes gets urinary infections as a result.”

Over the years, Linda and Sara have had to endure many unpleasant experiences as a result of the lack of suitable toilet facilities. On a recent visit to hospital to treat Sara for gallbladder problems, Linda was shocked at the lack of suitable toilet facilities.

“The disabled toilet wasn’t really different to any other toilet, except it was just a bit bigger”, explains Linda. “But there wasn’t a hoist or sling to get Sara to and from the toilet. You would have thought that at least a hospital would have the right facilities for severely disabled people. And what is so absurd about this is that the hospital is supposed to have a proper budget for specialist equipment for disabled people. They’re clearly not using this money as they should do.

“All in all, the lack of suitable toilet facilities is always a strain one way or another. It makes us anxious constantly.”

Linda can imagine what a massive difference public Changing Places toilets would make to Sara’s, hers and her family’s life.

“For Sara, it would mean she would be able to do more of the things that everyone else does – it would give her greater freedom and choice, which are part of a normal life. And for me and my husband, just knowing that they are there would take away a huge amount of worry whenever we go out. We could all relax and enjoy ourselves. I don’t think that’s a lot to ask for.”
 


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