My MRI Scan - What Rot!

When I slid into the claustrophobic tube that was the MRI Scanner during my short post stroke stay in hospital (see posts; MRI Scan and Hospital - Inpatient) I assumed that, not that I was thinking about at the time, that the resulting scan would form the basis of both my diagnosis and on going treatment. There was also a subliminal thought that in this day and age the scan would be instantly available to anyone with authority, all you needed access to a computer. How wrong could I have been

As I covered in my posts about my hospital stay, there was a long wait for the medical staff to “see the scan”. It’s never like that in the movies where people and their doctors get to see the scans on iPad type machines within minutes. Bearing in mind that this is a scan of my brain, such as it is, and that I was having difficulty in seeing it it felt as if there was a deliberate attempt to keep it secret. No one outside of the hospital has ever seen it or seems even to have access to it, not my GP nor the Stroke Nurse or anyone else. WHY?

When I asked my GP to see it she said that she did not have access to it and that the only for either of us to see it was to get a copy from the hospital. When I asked how one went about that she told that she did not know but that she would ask her secretary find out and let me know. Two days later a message was left on my home phone, giving a name and number of the person to talk to at the hospital.

Finally getting in contact with the lady in Patient Administration, who I will call SK, at the hospital I requested my MRI Scans only to be told that I would have to fill in the Data Protection form that she would send through. All I could do now was to wait for the postman to do his stuff.

When the form arrived it requested basic information such as my name and address and which particular records I was requesting. It also required a payment of £25.00. I duly filled in the required details and enclosed the cheque before walking across the road to drop the envelope in the village’s post box.

Almost two weeks later a small thin package from the hospital arrived, which I left on the side in the kitchen for a further couple of days. Over this two days I would glance at what was obviously a CD but didn’t touch it. The partner, who had been one of the reasons that I had requested the scan in the first place showed no interest either, which surprised me.

Then on a Sunday afternoon I decided to at least give the CD a look. With a slight feeling of trepidation, which was a bit odd as I had seen the image the CD contained before (more of that in later posts) but I think its never easy to see the inner workings of the body and especially the brain.

As I pushed the CD into the slot on the side of the laptop I had the feeling that I was going to be disappointed. The CD appeared on my desktop and when I opened it there were six files listed:
autorun.bat
autrun.inf
Content.cfs
pfmap.exe
scriptList.txt
start.bat
None of which could I open!

When, on Monday morning, I contacted SK in Patient Administration again to inform her that I was having no joy in opening the CD I was given another number, in It, to call. The young lady (LW) I spoke to was initially concerned, her attitude changed the moment I told her that I had an Apple Mac. At the word Apple she became very dismissive and told me that I should get another computer. When I told her that I had a legal right to have my records provided to me in a format that I could read her response was that it was not going to happen “ … not on a system that hardly anybody in the area uses.” When I pointed out that between 20 and 40% of people use Macs her only word was “exactly!”, and was told to go back to Patient Administration. Which I duly did! But before I did I asked for the name and telephone number of LW’s manager, which she gave me which as it happened was the same as her’s, but she said that it would do no good as she would say the same thing as her. SK in Patient Administration was very surprised and promised to look into the matter. She also agreed that it was a legal duty to get my records to me in a format that that I can read or view.

Later I phoned the Manager (NH) of the LW in IT, who I have to say was completely different to her subordinate. After a short conversation, during which I gave her my contact details, I received assurances that it would be sorted within the next week or so.

Regardless of the outcome, the point is that in this day and age can it acceptable that a national organisation such as the NHS to make a conscious decision that a common format of computer platform is not one that they will support? There are many programmes that allow graphics of all kinds to be viewed on any platform (pdf, tiff to name but two). It is a legal and moral right for everyone to have unrestricted access to their medical records, including all forms of scans. What I did not appreciate was the pompous attitude of LW from IT. Not only was she repudiating my rights, she appeared to have no understanding of what its like to view a part of your body that is dead.

It was hard enough to even load the CD never mind actually seeing what it contained and the disappointment, on a number of levels, of being denied was like a kick in the guts.

The story is not over and I await with bated breath to see how the hospital is going to take to “sort” the issue.