following on from the above,I am interested in people's experience around being diagnosed.There seems to be a fair bit of variation between health boards as far as the following goes,and any input would be appreciated:
1) How many people feel they were given sufficient information prior to initial PSA test-such as purpose/benefits/risks/uncertainties/alternatives/likelihood of being referred for further testing?
2)How well informed were people prior to attending biopsy appointment-both verbally and with written information,such as patient information leaflets?including intended benefits,all risks, possibility of false negatives ,uncertainties as to accuracy of determining agressiveness of cancer found,if found,alternatives such as MPMRI first,or further PSA testing if wanted?
3)How much time was allowed for asking and answering questions/addressing concerns with consultant.gp/nurse?
4)Were people offered the opportunity to consider discussing procedure with relatives/partner/gp if desired,before coming to informed decision,or offered biopsy right there and then?
5)how long before procedure was antibiotic prophylaxis,such as ciprofloxacin/gentamicin or other,orally or intravenously, given?
6)urine test performed prior to biopsy in order to rule out infection?
7)rectal swab performed to establish potential antibiotic resistance?
8)how well were people supported before,during and after procedure?privacy and dinity respected throughout?any recovery time/written aftercare advice/observation/package insert given with remaining antibiotics/letter to referring gp given/date for results appointment given/told what after effects to expect,and what to look out for in case of infection?contact details for 'team' in case of adverse reaction?
9)pain.discomfort levels during and after biopsy?any adverse effects,such as infection/pain/urinary retention/impotence/swelling and bruising/reaction to antibiotics-whether requiring hospital admission or treatment by gp?
10)results given-with/without prior invite to bring partner/friend/relative for support?
11)given in sympathetic,clear and comprehensive way?
12)(if applicable) time allowed to explain results clearly,answer questions,allow for news to sink in in before proceeding to treatment options?
13)treatment options and potential aims/benfits/risks/alternatives(even if not offered or available through local health board)/uncertainties clearly explained?
14)names and contact numbers for MDT given?
15)name and contact number for keyworker given?
16)signposted to further sources of practical/financial/emotional support-such as macmillan/tenovus/CISS/prostate cancer uk/local pc groups?
17)gp copied in on results/treatment plan?
18)anything experienced as being particularly helpful/not helpful?
A lot of questions-any input/sharing appreciated.this is not,nor intended to be,a survey ,,(having been been told by a friend who works in the quality and safety sector of nhs that uptake on patient feedback surveys can be as low as 3%,for whatever reasons-people not aware of possibility of giving feedback/not inclined to even if aware/?)it would be of interest to hear from anybody who would be prepared to share,and maybe gain some insights/lend mutual support,as,already stated,there seems to be lots of variation across different counties/health boards/individual hospitals,no two people present with same symptoms or have the same outlook/ expectation/experience..