"Why is there a delay in progressing treatment for my daughter's kidney disease?"
About: Western General Hospital / Urology Western General Hospital Urology EH4 2XU
Posted by Zuluman (as ),
I write this as a concerned and distressed parent – also as an ardent believer in the importance of a caring NHS, and as a journalist who has won awards for my reporting on health issues in Scotland. I want to protest about the treatment of my daughter, who had a serious kidney disease diagnosed in mid-February at Edinburgh’s Western General Hospital..
My daughter had been unwell for some time before her problem was identified. Tests revealed that one of her kidneys was diseased and working at only three percent capacity and that the other kidney had a partially restricted ureter.
She was told that the irreparably damaged kidney would have to be removed and a stent put into the ureter of the other one.
In a holding operation, pending full surgery, she was sent home with a tube inserted through her back to drain her left failed kidney into an external bag. That was ten weeks ago, but despite attempted daily phone calls to the Urology Department of the Western General, she can get no information about when her operation will be performed, or even where she is on a list or if she is on a list. Nor has she been properly advised and counselled about how to manage the very uncomfortable, often painful, tubing protruding from her back, which she finds especially difficult as a mother caring for highly energetic young children.
Indeed, she has been fobbed off to the point of despair and is not even sure that her messages are being passed on by the secretary/coordinator of the Western General’s Urology Department to her consultant.
My daughter’s condition – AKI, or acute kidney injury or failure – is characterised by professionals in a new NHS study as a rapid decline in kidney function, which can result in multiple organ failure and death, if not identified and dealt with speedily.
The word “disgraceful” is used too freely in political and journalistic discourse, but this situation truly is disgraceful and it is putting the health – and life – of my daughter and the well being of her children at unnecessary risk.
I am writing because it is impossible to get answers at the NHS workface.