Monday, 9 June 2008


I only had one query regarding the notes I received on Friday.

One exchange following my request to see my clinical notes ran as follows:
04 February 2008, from J to S:
Just to let you know, I have not copied 7 pages of hand-written very rough notes which appear to have been written by one of the Care Co-ordinators but no name is attached.

04 February 2008 from S to J
Excellent - I do need the bits you have not copied you mentioned - if they are in the file, they are formally in the record and must not be with-held. We can sort out who should have put a name to them as part of the process.

Let me clarify - I asked, in writing, for confirmation that nothing had been omitted from the copy of my file. I identified at least 4 documents which had somehow disappeared from my file - which had been in my file when I saw it (briefly) with D, and of which I had photocopies - but which were not in the copy I received. Without requesting the additional information which I received on Friday, I would have assumed that, as promised, all the information I requested was indeed photocopied. Now it appears it was not.
There are no notes fitting the above description in the photocopy of my file. There are 5 pages of very neatly written notes, each entry signed with the name of my care coordinator at the time and dated. There are no other hand written notes. I strongly suspect (though I have no evidence, as I am sure BLPT would be keen to point out) that these notes were written by MM, the care coordinator who dropped me with no explanation and no replacement. The one whose abrupt decision (which, apparently, was without the knowledge of her line manager) led to me being without a CC for 4 months. I wonder at the tone of them, given that this same CC wrote in an email to M that the CMHT would have to see me, "but I fear it will be for the rest of our lives."

So what happened to the notes?
Have they "disappeared"? If so, can their disposal be traced? Why might they have been destroyed?
Did the person who was told to copy and include them just fail to do so? If so, on what grounds? If they did do so, why was I categorically assured that, " I can confirm that I was not told that any information had been removed from your files prior to them being sent to me to send onto you." (Hmm - difficult to disentangle this statement. "I was not told...")
Is there some other explanation?

I'm really not happy about this.

I've been told that my clinical notes will be checked tomorrow to see if anything in them matches this description. I've said I want to know what has happened. Whether it will ever be explained is something I do not know. But I will want as full an explanation as possible.


MMP said...

seat belts on..........

Calum said...

I'm really interested in what we can / can't see in medical notes because Mrs Carr will be asking for her notes from various sites and I'm sure some pages will be withheld. It appears that, in general, portions of medical notes can be withheld if the disclosure is likely / may cause worsening of condition or if a third party - not a clinician - might be identified.

In your case you seem to have a written? record of an exchange telling you that 7 pages of handwritten notes were not copied. There appears to be no valid reason for their not being copied. Provided you have written / email record of exchange ylou should be able to create merry hell with the NHS trust because obviously those 7 pages were available in Feb.

That you were assured that "" I can confirm that I was not told that any information had been removed from your files prior to them being sent to me to send onto you." means only that the person sending them to you was not told. They might well be telling you the truth. Others may have taken pages out and not passed the message on. Therefore the statement doesn't mean that pages were not removed.

Given what you have seen previously and been told I think you could make things uncomfortable for NHS. Unfortunately that might not get the missing pages to you.

Good luck and sorry this comment is so long.

Disillusioned said...

Thanks, mmp.

Calum, they have to have a really good reason (defensible in law) to withhold information. It is not something they do lightly. As to a third party being identified, if you ask for copies, all they can do is black out the name of anyone else identified or details of them (as far as I know).

What worries me about this is (a) what else was withheld and (b) were the full notes sent to the healthcare commission, to whom I have referred my complaint? The real problem is I can now no longer be sure that I have been sent what I was told I was sent.

As far as the comment goes, I trusted the person who made the comment to have checked that everything was included. I asked her to check. So something has gone wrong here.

And yes, as you hint, they are in contravention of the Data Protection Act here.

sage said...

This is interesting - my social worker recently told me that notes (and a diagnosis as well) can be withheld, and that there is no way for the patient to know whether things have been withheld or not. (This after she had told me I had one diagnosis one week and then something different the next week)

Btw I think you are very brave and strong to fight the way you are and have.

Disillusioned said...

Thank you for stopping by and commenting, sage.

My understanding (and I am off to read up on this) is that if they withhold information they are legally bound to inform you of the fact. Will post about this when I find out.