"Why is there a delay in progressing treatment for my daughter's kidney disease?"

About: Western General Hospital / Urology

(as a parent/guardian),

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.

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Response from Dougie Brownlie, Patient Advice and Support Service (PASS) Marketing Officer, Citizens Advice Scotland

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Hi Zuluman,

I have seen your post and noticed that there hadn’t been a response as yet by the NHS. I am sorry to read of you and your daughter's experience and that you are not getting the relevant information, so I thought I would let you know about the Patient Advice and Support Service (PASS) which is an independent service which provides free, accessible and confidential information, advice and support to patients, their carers and families about NHS healthcare in Scotland.

You can access this service from any citizens advice bureau in Scotland by going to a bureau in person, or by telephone. The number is in the phone book. You can find more information about the service at www.patientadvicescotland.org.uk

We have specialist advisers in every health board area in Scotland and who will give advice on health related issues including the policies relating to waiting times and pain management. If required, a specialist adviser can meet you and work with you to draft a written letter to the relevant NHS area which will then raise this issue with the NHS. The adviser can also explain the NHS complaints procedure and support you if you are asked to attend a meeting with the NHS.

Hope this helps

Dougie Brownlie

PASS Marketing Officer

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Response from Craig White, Divisional Clinical Lead, Directorate of Health Quality and Strategy, Scottish Government

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Dear Zuluman

I have been concerned about lack of responses to several postings on Patient Opinion from NHS Lothian, including yours from 2 months ago. I met today with Senior Managers in NHS Lothian to share these concerns and outline my expectation that when people take the time, as you have done, to provide feedback of this nature - this must receive a prompt response reflecting the importance that we expect colleagues in Boards to place on feedback from the people that they serve. I will keep this under close review.

Please accept my apologies on behalf of NHSScotland. We will be working closely with colleagues in Lothian to support them improve their approach and better demonstrate through their actions the value that I know they want to place on feedback from people.

Best wishes,

Professor Craig A White

Divisional Clinical Lead, The Quality Unit

Scottish Government Health and Social Care Directorates

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Response from Customer Relations and Feedback Team, NHS Lothian

Firstly I would like to apologise for the delay in responding and I am extremely sorry to read about your daughter's experience with her care. If your daughter or you would like to forward your details to the Customer Relations and Feedback Team we can fully investigate. The customer Relations and Feedback Team can be contacted on 0131 536 3370, email craft@nhslothian.scot.nhs.uk or by writing to the Customer Relations and Feedback Team at Waverley Gate, 2-4 Waterloo Place, Edinburgh, EH1 3EG.

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