Can't get ds's full notes - is that right?

[DishwasherDogs]

Have just spoken to the psychologist at our local CDC to request ds's full psychology and ADOS reports for my gp to try to get a better understanding why he hasn't got a diagnosis.
I think the idea is that there's a small chance there may be enough evidence in these to prove he should have a dx.
Apparently this is not allowed. The notes can only be shared between autism units or qualified individuals (she worded this better but I can't remember now).
The notes are the hand written ones made during the disco interview and his ADOS assessment. I have a copy of the basic summary (which has information missing), my gp also has this copy, but not allowed access to the full notes.
Is this true?

I have been watching this thread with interest but find Jonathan's responses extremely worrying especially with regard to disclosure and dyslexia assessments

I have 2 severely dyslexic children and am dyslexic myself. Through the course of both mine and my children's lives, I have seen countless dyslexia professionals - inc the top dyslexia EP in the country. At no time did any of them hold back their private notes. All were very open in both their note taking and their report writing. I have been shown specific examples of my DS's spelling by all. I have also been shown his answers to specific tests. I also know full well that every single EP I have seen for my dc have made a note of my own specific dyslexia problems. I also know that they make a note of his home life eg esp with regard to availability of books. I know all of this because it's always in the reports I receive and we discuss it during assessment.

Although I have never had cause to request personal notes taken during various assessments, I would expect those to have been taken professionally. I cannot see how your note taking would have to change if you thought they might be disclosed to a parent/child.

Jonathan - you said

Psychology and psychlogical processes enjoy a significant number of legal protections to ensure they are useful to all.

I would like to know what specific laws that personal notes are "privileged" and legally protected as I do not believe that there is one which covers a pysch? I understand that lawyers do have "privileged" information but am unaware that that extends elsewhere.

The data protection act does not trump other law. Eg if someone could argue releasing personal info breached the Official Secrets Act, then the Secrets Act trumps Data Protection. So if you can point me to a particular law which says a pysch's personal notes are privileged, then I will accept that.

If it is just Patoss/BDA's protocol, then that is not the law. If you have read any of this board, you will find parents on here who a constantly up against "policies and protocols" being accepted as the law by (normally) LA officials.

It is absolutely this from fairgame

We were always 2 rules about notes when i did my nurse training 1. Never write anything that you wouldn't want the patient to see (due to situations like this) and 2. Whatever you write may end up in court so be objective and thorough.

Hmmm - I have got my la ep notes and scoring. I have had eyebrow raising emails disclosed in foi requests. I don't see how it can't be released tbh.

If someone has written something they really don't don't want you to see, they can just redate that stuff. I to have worked on the data giving end of FOI

I had emails disclosed saying I was - not in these words - kicking up a stink. Fair enough - I was!

I have just asked the question to my dh who is the dp officer for a large multinational organisation (in the terms of the dp act - equiv to a specialist lawyer). He says "The quick answer is yes, assuming they have been kept. Opinions and notes are to be included in any SAR"

I had all sorts of weird and wonderful emails and notes disclosed to me when I was fighting for my DS. Never anything such as "this mother is clearly neurotic" because my la were careful enough to "lose" those emails. But enough to hang my La at tribunal.

Jonathan - if you ever get asked the question to hand over personal notes, i personally would not "simply hand over the process to PATOSS". The law is the law. Challenged in court (whether civil, criminal or tribunal) you would be on your own explaining why you have failed to disclose personal info. The Information Commissioner would also take a dim view. I suspect organisations such as PATOSS would wash their hands of you and you would be on your own

'Another professional may disagree, but they would need significantly greater grounds to do so and would take far greater account of the test scores.'

Why would this be ANY different from how a parent would approach things?

'however the need for the tester to be able to act in an uninhibited way to try and reach as objective decision as possible should not be jeopardised in this way'

You're making an assumption that the 'professional' is responsible for the child and gleans information from parents to make a decision regarding them, when some might argue it is the parent's responsibility to glean information from the professionals to make decisions regarding the child, particularly in a climate where professionals seem only able to assess and discharge whilst parents have to live with the consequences of their partially-informed decisions, not to mention the actual child.

Essentially: Who serves who?

I've had an awful lot of fights for test score data. I seem to get them in the end. I don't get the actual tests that they relate to however.

I think that is reasonable for the practitioner to be confident that it hasn't been 'taught to' the next time it comes (Though could easily teach to some of the EP ones I've seen them so many times, but test scores wouldn't impact that).

Data however, I suspect what the EPs are scared of is that their own knowledge of statistics/data scoring being on display in case it is woefully behind mine as I've had to point out errors ffs.

I also think that many professionals and organisations are woeful unaware of the law regarding data protection - as this thread has shown

if anyone has difficulty getting personal info from a body, a solicitor's letter should do it (I understand that getting a solicitor involved for a basic right/law is wrong, but hey, this is the world we parents who have sen children live in!)

A solicitor's letter would focus the minds of the organisation withholding the data. My solicitor did mine and we had absolutely no problems getting my ds's personal data.

Although what was interesting was the gaps between what turned up from one body but was missing from another body, and the reason why it was withheld. In the end the gaps in some of my ds's personal data led to the Local Government Ombudsman ruling that my LA did not keep adequate notes and as a consequence my LA have had to tighten up their processes (Of course, I know they did keep notes, but as they choose not to disclose them to me, the LGO had no alternative but to find that the notes didn't exist in the first place)