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Fourth
patient view
Please note, this page is a summary of the full conference speech (click here for the full transcript).
Helen Lewis
Helen wanted to say that, particularly after Polly had spoken this morning, her daughter Caroline had experienced both transplantation and dialysis, and she found that both mentally and physically she was happier on dialysis at the moment.
"My first focus when she was ill was somehow making her better, because that's what I thought I could do," said Helen.
"And also being an advocate demanding the very best treatment from the health services. And I have to say then, I suppose from my perspective, even the very best at that stage was not good enough."
As she grew up, it was a question of transferring responsibility for looking after Caroline to Caroline. She had recently moved into a flat, living on her own in London.
"So a lot of practical support, - in finding work, in getting to work, managing flat moves, managing all sorts of things," said Helen.
"And emotional support - there's still a need for emotional support, ongoing emotional support, but particularly when things go wrong. And sitting here listening to the threat of skin cancer for a young woman who's just been through 15 years on immunosuppression and has actually come off immunosuppression because of cancer worries."
"Imagine for example, a woman struggling with a 20 kilogram dialysis machine in its case," said Helen.
"It's meant to be portable, a portable dialysis machine which is bigger than a suitcase and weighs 20 kilograms. Imagine trying to go on a business trip in her new job. How does she get herself out of her flat, how does she get herself across London, how does she do all of this unaided? There's a huge need for practical support."
She thought there was a need for research so that there was more awareness everywhere of the impact of renal failure, transplantation and dialysis on people's lives. So that, for example, there were not so many of those people who thought that when somebody had a transplant, they were well for ever.
Another question was how do you manage the transition, from paediatric care to adult care. Other charities, like diabetes charities, had research into managing that transition, but not for renal patients.
"I do feel - and it's been my experience all along - that dialysis is still a Cinderella service. It doesn't attract the best medics, it doesn't attract the best care, and it isn't given the priority," said Helen.
Please note, this page is a summary of the full conference speech (click here for the full transcript).
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