Thursday, 20 October 2011

Give me more...

The autumn issue of the PKD Newsletter leads with results of a survey asking people specifically about the information they are given when they are diagnosed with PKD and what information they would have liked to receive.

Below is a summary of the key findings:

  • 366 surveys were completed
  • 315 by people with PKD
  • 51 by carers / relatives

  • 66% of respondents were female
  • nearly 70% were either given ‘no information’ or ‘not enough’ on diagnosis
  • minimal social, emotional and psychological information (including genetic counselling) was given
  • very few respondents were told about charity or support groups by their doctor
  • most had never been offered a Kidney Care Plan or other personalised healthcare plan
  • there were many requests for local support groups
  • more psychological help was felt to be needed

Sadly, many individuals reported, ‘I was just told I had PKD and that was all’. However, not all the responses were negative, and many positive points were made both about good doctors and the information the PKD charity provide.

1 comment:


I think I can agree with the survey findings as my own experiences are similar. Although PKD is a systemic disease, only a renal clinician is seen. People who have renal failure through Diabetes obviously attend other clinics to deal with associated issues.

To say that a GP gives all necessary care is laughable as their knowledge about the disease seems to be minimal. I'm sure this varies over the country, but all the information about PKD that I have received has been found by myself on the internet.

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