Tuesday, 28 June 2011

When we asked the Northwest Cumbria University Hospitals NHS Trust to release certain information under the Freedom of Information Act, I thought that this would be a simple and honest process. Don't get me wrong, they followed the guidelines and gave me the same information under the same restrictions as any Trust in the country would have. But as I wade through the bureaucratic layer of mud that swamps are good doctors and nurses around the country, I become more aware daily of just how thick that mud is.

To remind you - My problem is purely with the pathway, or lack of it, concerning newly diagnosed Prostate cancer patients. So I simply wanted statistics on Prostate Cancer, a disease that 30,000 men are diagnosed with every year in the UK and that 10,000 men die of. So not a rare disease, but a disease that kills more men than almost any other! Easy to recognise as a clinical category you might think? But you're wrong! They say...

"Prostate cancer falls within the Urology tumour group. We do not have information specifically relating to prostate cancer and as it would take a manual search through patient records to obtain this information. This part of the request is refused on the grounds of Section 12 of the Freedom of Information Act." 

So even though I have asked for information under the Freedom of Information Act regarding 'Prostate Cancer', they can not provide this information, and don't have to!

Why? Well as they stated above, "it would take a manual search through patient records..."

But they then go on to say that a manual search of 108 out of over 400 patients records took place, restricted by the cost formula below. I just assumed that a Trust would keep these statistics to hand and that they would be available at the push of a button. I had no idea that to gain such important statistical information, that someone had to rake through a bank of filing cabinets with a calculator, pen and pad! 
I dare say that at any given time they are aware of how many pillows, oxygen cylinders or bins are in each hospital. But not aware of how many Prostate Cancer Patients? Could that be true?
It's little wonder that I became lost in the system there when I was a cancer patient.

"The Trust does not hold the information in an accessible form on any system. To obtain this information would require a person to manually check through every patient file held in order to extract the requested figures. The Trust estimates that at present it holds upwards of 400 Urology (per annum) patient files.
Assuming it would take a person 10 minutes to locate and then physically check each file only 108 files could be checked before the appropriate limit was reached, based on the following calculation:
Files checked per hour = 6 (assuming 10 minutes per file) 
Maximum hours under the Act = 18 (18 x £25 = £450)
Maximum number of files that can be checked = 108 (18 x 6 = 108)"

To publish the figures that the Trust gave me would be pointless, because which 108 of the 400+ files did they choose to draw the information from? And of course, they had no way of telling which files were for Prostate Cancer patients...GET REAL!!! Could I suggest putting a letter 'P' on the outside of the file!

Then of course we are reminded of our place with the standard legal threat that we have become accustomed to...

"You may re-use this document/publication (not including the Trust or NHS Logo) free of charge in any format for research, private study or internal circulation within your organisation. You must re-use it accurately and not use it in a misleading context. The material must be acknowledged as copyright and you must give the title of the source document/publication. Where we have identified any third party copyright material you will need to obtain permission from the copyright holders concerned. For any other use of this material please apply for a licence for core material by contacting the Freedom of Information Team at the above address."

Well I hope that I haven't been misleading in anyway and that I have tried to explain it as accurately as possible, even though I don't understand most of it! Copyrights, licences, blimey...I only wanted the Prostate Cancer Statistics from my local NHS Trust so that I could help to improve our hospital!

1 comment:

  1. I think you are being extremely kind to them.

    If they do not split out the prostate cancer cases, how can they evaluate their performance and the degree of success?

    Seems to me to be a VERY serious failing. Did all the hospitals fail this way?