6 months in........

Hi Y(er) man,

Welcome to the forum,

Not read your blog yet but will do so later. UCL (UCLH) seems to be highly regarded, has some leading consultants and latest equipment. Can't say their administration from patient viewpoint is great as there seems to be no overarching person who coordinates what is happening for an individual. For example, I was given an appointment for a PET Choline Scan and a Bone scan at overlapping times on the same day and these scans should not even be done on the same day!
After I pointed this out the Bone scan appointment was rearranged. But I think administration could be better in other hospitals too. I had to correct my histology as supplied to UCL by the Marsden. Just goes to show that you need to check all aspects with hospitals.

Hope your treatment is successful

Edited by member 24 Feb 2015 at 21:02  | Reason: Not specified

UCLH must be quite organised ...... I got 6 identical appointment letters from our local hospital last month. When I showed the receptionist, she said she had put every one of them in the envelopes and should have noticed. No kidding :-0

Barry, John had 20 fractions at 3Gy as part of the CHHIP trial without any major problems and Mr B told us at the last appoitment that the data is indicating that fit men can withstand a much higher dose than previously thought and without any significant increase in side effects. He said they already knew that 60 or 66gy delivered over a shorter period has the same cumulative effect as the 74Gy over 37 days. Isn't science wonderful?

Edited by member 26 Feb 2015 at 06:15  | Reason: Not specified

I was offered a place on the CHHIP trial, though whether a man was on the 19 or 20 higher dose fraction or on the standard arm of 37 fractions each of 2gy is randomly selected by computer. It did introduce me to the idea though that there was a possibility of more diversity and I began to research all treatments. I would have thought by now that the success of the higher dose regime in terms of PCa treatment and reduced set up times would have meant that it had become more generally adopted but things move slowly in the UK and perhaps more experience of long term evaluation is wanted. On a formula that I have not been able to follow, the fewer higher dose regimes are said to equate to the more lower fractions dose in impact if not by numerical total. What I meant earlier was that the standard 37 fraction of 2gy could not be increased to say 40 fractions of 2gy making a total of 80gy which was confirmed to me when I asked this of the Marsden.

As regards hospital resources and the use thereof, Phil has been in a good position to access this from the inside and I believe better use of resources could if thoroughly undertaken bring savings which could perhaps be used to employ more staff and or better equipment. However, even with resources more effectively used and a cultural change in attitude of some staff, I don't feel this of itself would make sufficient improvement to bring many hospitals up to a good standard that would be comparable with many continental hospitals or some of the major UK ones.

I had a small procedure done on my leg yesterday in Devon, (nothing to do with PCa but was done without any aesthetic and was more painful than anything I have ever experienced.) The doctor was a foreigner who took about 3 times as long to read my notes and grasp them as somebody very familiar with English. Then there was a long draw out question and answer session punctuated by clarification on his part and mine. No wonder waiting times in A&E are so long if this is typical.

Edited by member 26 Feb 2015 at 21:16  | Reason: Not specified