On BLPT meetings and agendas

In my absence the latest agenda for this month's Trust Board Meeting has been published on BLPT's website (still with its annoying membership popup, but I have managed to disable it on my machine!) Yes, it's good that the agenda is published. However, what is possibly the key document is missing - the monthly performance report. This has often been revealing and informative. However, only the summary paper is available online this month. It could be an oversight. It might not have been available when the agenda was published online. Such omissions are fairly standard for BLPT in my experience. I could email and ask for it to be made available online, but I'm inclined not to bother. Maybe it will appear. I'll let you know if it does.

BLPT complaints process

I've been awaiting a response to the missing items in my file since the beginning of June. These concern some "rough notes" which the then complaints officer, JE, told the Director of Information he had not copied in response to my request for a copy of my clinical notes. She then told him that they needed to be copied and sent to me. I was unaware of the existence of the notes until I received the emails I had requested which revealed this exchange.
Today I have had a formal response. I ws pleased to see identification of changes which needed to be made as a result of this matter. However, what does not please me is that there is no explanation of the matter, even after all this time of enquiry (over a month). Apparently JE asserts that he did copy the notes. I know (as does the Director of Information) that they were not in my folder. What is not addressed in the letter - or even referred to - is the very major question of where these notes are, if they were indeed copied. It would have been better if JE had said he had made a mistake and not, after all, copied the notes. I would have been annoyed, but it would have been solely BLPT's problem. As it is, there may be a set of notes with very personal and detailed information about me (including my name and the names of my family, and my mental health details) floating around somewhere. Given the laxity of BLPT with clinical notes (see previous entries about the number of things missing from my clinical file) this is a major issue for me. I don't want my personal information to be unaccounted for.
And, of course, there is very little that can now be done to reassure me - because if BLPT do come back and say that JE did not, after all, photocopy the notes as instructed, how can I believe that story?
Additionally, how could this response be sent and no consideration given to the fact that their "explanation" suggested that personal information from my clinical notes file was missing? Yet again, they have treated me as if I were stupid. I suppose I shouldn't be surprised - for the most part, that is their way.
This is not helpful.

Independent Assessment of BLPT

In the Chief Executive's report to the board in June was this document. Among its declarations concerning "an independent assessment of our corporate and key clinical governance arrangements" (closely connected, of course, with the application for Foundation Trust status) was this:

We’d specifically welcome focus on:

a. Our internal systems for identifying, reporting, investigating, taking action and learning the lessons from (Serious) Untoward Incidents;
b. Our Child Protection arrangements, internally and with key stakeholders ie LA’s and PCTs.
c. Our CPA arrangements, from policy into practice ( a sample);
In relation to these arrangements, it is crucial to seek evidence that the care planning process is both person centred and evidence based. Some review of carer input is also required.
d. Our SoVA arrangements – internally and with key stakeholders ie LA’s and PCTs.
e. Our systems for mandatory training and supervision.

All very good. However, the results will only be presented at a Closed Board meeting. It looks like they will not be made available to the rest of us, though they will be "shared with local partners and the EoE SHA."

So I won't be able to post here about this external assessment of the performance of BLPT.

More on information

Just for the record:

I requested a copy of the briefing notes presented to a closed meeting of the Trust Board about me by one of the Directors.

In the various emails I now have sight of is this confirmation that there was a written piece of information about me:

(My request to C)

The email dated 18th July 2007 to members of the Trust Board refers to "a briefing note" (from DB and GK) to "the Trust Board closed meeting next week". I would like to have sight of this briefing note, as it directly concerns me, and of the minutes of the Trust Board meeting regarding this matter.

(an email from C to J)

I would be grateful if you could pull together the information she has requested.

(Email from J to C)

Trust Board Meeting minutes, this was to a closed meeting, would like to see where we stand on this but I do not believe we need to disclose this information

(email from C to J)

Sorry to chase on this but could you let me know what your legal team stated? My understanding is that she is entitled to see information about her under the DPA request and that we can with hold information but that we have to be justified in why we are doing it and that justification is usually because it would cause her harm or distress.
I would say that if the information which went to the Board was correct and factual then we should give her that information... Please would you let me know your update??

(I have seen no response to this query).

(email from C to me four weeks after this)

You also requested information relating to a closed Board session.Having requested this information from PB, she has confirmed that nothing was documented which related to you or your clinical care and therefore no information is available.

Now, is it just me or does this read as if I am missing some vital information?

That complaint....

It is still with the Healthcare Commission. And that's OK. It will get done when it gets done. Waiting and not knowing is hard for me, but I am coping with the inevitability of this wait. I knew it would be a long one.



I was musing on this (briefly!) as a result of receiving the information I have been awaiting. I'm grateful that I have received it - I must say that. It has been suggested that my wishing for this information is A BAD THING. The implication is that I have not moved on, because I am still seeing information. It was said that this would "not bring healing". Actually, the person who said that was wrong. The reason they were wrong was simple.



That person is not me.



For me, as I said in an earlier post, knowledge is key and knowledge brings security. This is because my childhood was marked by not knowing and, at the same time, needing to know. Knowing brought a sense of security. If I knew what was likely to happen, I could plan for it. It didn't matter how bad the event was, just knowing about it meant I could think it through. I'm still the same now. If I know something is going to happen, that feels much safer to me than dreading that something undefined might happen.



So, this knowledge (of some of the things which were going on behind the scenes at the end of last year) has brought a sense of safety. Sure, some of the things are not nice. Some of them sadden me. I know that some of the people I trust(ed) have feet of clay. That's not such a bad thing; a necessary discovery. I know that some people who were supporting me in many ways were also saying things about me that they did not say to me. But that's OK. It's better than not knowing, and wondering.



The information, despite the efforts of those who have worked hard to provide me with it, is partial. It has to be - obtaining a full picture would require too much effort, too much time. Its incompleteness too is OK. It gives a flavour, a sense of what was happening. A sense of the way in which I was one tiny cog caught up in a very complex machine. Or possibly a tiny ball as in this image (click here to go to the animated version, which I could happily watch for a long time, though the music drives me mad after a few seconds.) I could pursue more information regarding the things which were written about me, but I know have enough of that type of information. Nothing I have read changes my opinion of what happened.

What am I hoping for?
I'd like an apology for the letters I was sent, which I still believe were appalling. I don't think I will ever get that apology.
I'd also like (as the complaints policy outlines) explanation of why things went wrong. I know they did go wrong, but I don't understand why. No explanation, for example, has ever been given as to why I was refused a change of care coordinators, especially when that request was supported by the clinician who had had most contact with me.

What I would also (and most importantly) like is identification by BLPT of the ways in which things have changed to ensure that what happened to me doesn't happen to others. I learnt (from reading BLPT Trust Board Minutes) that there was a recommendation that two additional members of staff were employed within one CMHT - as a result of a complaint. I'm currently trying to find out whether that has been actioned. But I have never been informed of that recommendation, and if I had that would have helped. It would also have reinforced their declaration that the absence of support was purely a reflection of the lack of staff.
I would like the new Complaints Policy to have identified who should be responsible for investigating a complaint, to ensure that nobody else was in the position of having their complaint "investigated" by the people complained about. Needless to say, it doesn't do this.
I would like to have information about steps taken to ensure that when a service user requests a change of CMHT (for good reason in my case) that request is actioned, not refused. Particularly when other mental health professionals agree with the user that this is a sensible course of action.
I would like to know what is going to be done to deal with the poor standard of record keeping in some CMHTs. My current CMHT have shown me what good practice is. How are all CMHTs to be held to account and "encouraged" to follow agreed procedures?

Two changes were identified and actioned. One was the incorrect contact details on the website; the other was the way in which my valid requests for information were initially refused, in contravention of the Freedom of Information act. It's been interesting to read how seriously these were taken. The swift action of those who knew what they were talking about with regard to information, and who provided me with copies of the policies I requested, was the only thing which stopped me from making an official complaint to the Information Commissioner.

Yes, information is key. As I said from the start, nothing can change the disastrous effects of the way M, MW and others treated me. Until I am informed about the steps taken to change patterns of behaviour, I will continue to speak out. That is a direct result of the way their system treated me. If they had treated me as a person with intelligence, with feelings and with needs, rather than as an unintelligent useless mentally ill person, then I wouldn't be taking the time to hold them to account now.

Found

The missing notes of my last post have (very promptly, I muct say) been delivered to me. I am, of course, very pleased that this is the case. However, I am very angry that these notes were not supplied in the first place.
I asked for the notes.
Several times I attempted to confirm that I had received all the notes, and I was told I had.

The absence of the notes from the first copy made was highlighted and the person concerned was told to include them. However, they did not do so, and nobody checked that they had.

Other significant notes were also missing from the copy I received.


I now have no way of knowing whether I have in fact received full information when I have requested it. Remember, this is by no means the only time that BLPT have failed to provide information to me that they are legally required to produce. How many other pieces of information have been withheld? How can I be sure? And how can I know how selective BLPT may have been in the information they have passed on to the Healthcare commission?

I was told that there was no record of discussions concerning me in the Trust Board minutes. How can I be sure of this? I was told there were no written notes at all concerning me that have not been given to me. How can i know this?

More importantly, what will BLPT do about this, and what do I do? Suggestions?

Missing....

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.

Information

"Knowledge is power".

I agree - not in the sense that knowledge brings control over others, but that knowledge brings a sense of control and security.

I received some more information from BLPT on Friday, connected to my complaint. I've mulled over whether this knowledge is dangerous to me or a good thing for me, and I come down very heavily on the latter.

Childhood was full of secrets. It was also full of assumed adult responsibilities - like keeping home relatively stable. To do that I needed information. I needed to know what threats were on the horizon. Knowledge, for me, is implicitly tangled in a sense of safety. I wonder for how many people that is the case? I don't do surprises well (my husband knows NEVER to throw a surprise party for me!) I'm OK in the immediacy of an unexpected event, but then tend to fall apart. I need to plan things out, look at possibilities and options. It's true whether the future event is good or bad. So knowledge for me (even of the bad bits) is helpful - it brings understanding and security.

I suppose the danger is that I will keep dwelling on what has happened, with all the dreadful repercussions of that horrible time. there is a balance to be struck here, I know. But I need to process what happened in order to move on. I can't process it without some understanding and to uderstand I need to know. So this latest information helps me in that moving on.