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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