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?

No you're entitled to see the full notes unless they contain details of another person.
www.nhs.uk/chq/pages/1309.aspx?categoryid=68

Did you apply through the data protection act?
If they've not disclosed everything then contact the information commissioner for the health trust (they all have one).

Does it make a difference that they are ds's notes not mine? (He's 9)

I didn't apply through the data protection act, I rang the department and asked, following the advice of my GP.
Will look up the information commissioner, thank you.

No it doesn't matter because he is a minor you have parental responsibility so can access his notes.
If you apply through the dpa then you are more likely to get everything rather then just the bits they want you show you.
If you can't find details of the information commissioner then try PALS as they should be able to help you out.
I had to endure a 3 hour course on information sharing when i was a nurse and this is the first time in 4 years it has been put to use!

No. If i wanted to see DS's GP stuff then i would have to apply to the GP or primary care trust (i cant remember which). If i wanted to see his birth or paed stuff then i would have to apply to the hospital trust which is separate. The hospital usually sends the GP a summary of his paed visits but they don't get access to the full notes that the paeds makes in clinics.
If a child has a stay in hospital then the GP only gets a copy of the discharge summary and not a copy of all the ward round notes, nursing notes, obs etc. all of that is held at the hospital but should be released through a dpa request.
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.

I think it is called 'subject access request' which you might need to make.

would probably try a PALS complaint first

ico.org.uk/for-the-public/personal-information/

She is wrong. You (assuming you have parental responsibility) have the right to request copies of your DS's full notes (inc any handwritten notes) unless viewing them will be severely detrimental to you or your DS (in which case they need to tell you that they are withholding the records). They also have to consider what is in your child's best interests, bearing in mind that the records belong to the child, not to the parent.

if the notes are held at the CDC, then put in a subject access request, under the DPA, to the Trust responsible (usually the community health Trust or similar).

Thank you very much. I'll talk to the GP on Monday and take it from there.

I have had exactly the same thing with CAMHS psychologists. I had made a full DPA request too, and read up on the ICO website about it. They had initially said the same thing about notes being for professional use but not for parents - but I know quite a few medical professionals who said the same thing as fairgame about notes.

I had to go through PALS in the end, they were being really stubborn about it and ended up asking for a specific appointment just to discuss releasing the notes! With all other agencies (GP, school, hospital, LA) I've never had this issue - they've just been happy to send all notes recorded delivery on request. I think they take the 'severely detrimental' rule a bit too far, or perhaps want to cover themselves if they wrote things they didn't think parents would see. But legally you do have the right to see them - you just have to be a bit more persistent with psychologists it seems.

As your son is only 9 it should be OK, provided there is no reason to believe that releasing the info to you would be harmful to him.

In the case of children who are considered competent to understand the process, parents cannot automatically access info under the DPA without the child's consent. I mention this only in case it is relevant to you in future years, or to someone else now. ico.org.uk/media/for-organisations/documents/1065/subject-access-code-of-practice.pdf

It is likely that certain wires are crossed here.

1. What information do you think is missing? If a test was carried out then the score / result will be in the report you received. Nothing in the notes will change the score.

If you believe the diagnosis is wrong then simply giving the report to another qualified professional should be sufficient for a 2nd opinion.

2. What precisely have you requested?

If you want the Psych's personal notes then that is likely a duster covered by certain privileges. Basically, they have to make personal notes to do their job properly, which may be impeded if these notes are subject to open requests which would force them to not take these notes at all and therefore risk doing their job badly.

If you want the actual test sheets used and scoring, they are correct to refuse you. I shall explain why below.

Let me start by saying that I assess for dyslexia, using psychometric testing alongside a few other standardised tests and some informal observations.

People assessed receive a written report, it includes ALL test scores for tests used. At the end I make my judgements based on these scores alongside other data collected.

All that the individual/parents receive is my written report. The test pages and scoring sheets are kept secure and any request for them to be released is refused.

Now, on the one hand many reasonable arguments are given above. However this refusal is standard among specialist teachers and educational psychologists. So to start with, let me be clear that this person is not doing any particular ass covering for a specific situation, this response is expected and standard.

Secondly, the response given to you is correct. The tests Ed Psychs use, and to an extent that I use, are restricted tests. They are not garden variety tests which anyone can find online to 'test your IQ' or 'find out what personality you are' etc. Our tests are restricted and there is a limited supply and they depend on that for their usability and validity.

If our tests were entered into the public domain because of all requests, they would instantly become invalid. We would not be able to use them again because it is possible that the person we have tested will have encountered them before or parts of it before etc.

Believe me, it is hard to even find scoring sheets online! I once lost my manual for a test and needed to find a percentile for the score achieved, I couldn't find it anywhere!

So if you are asking for the actual tests, you will not get them and no amount of asking or legal appeals is likely to change that. Short of a judge being willing to make a ruling he knows will be appealed by every psychological body in the country, it just won't happen.

If you wish for a 2nd opinion you can find another professional and request that the documents be sent to them for that opinion. However, he/she will also not give them to you I am afraid, for all the reasons above.

Believe me, I get the frustration. When I was training I had this exact same argument until I came to understand the significance of these tests and why the rules exist to protect them. By protecting the test, the people we assess are also protected.

Now it may be that I have completely misunderstood your request, in which case all of this wall of text was pointless! However, I hope it does help a little.

Reading back again, it may be that you are requesting sometjing else.

However, hopefully my post may help explain the default response a bit!

zzzz, my point is that the results are in the report.

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

I dont know the rules about personal notes.

All I can say is that I would not want a parent to have mine, and if it was the situation that they coild then I would drastically change how I write them.

Many parts of these assessments are subjective interpretations within a framework of definitions. We combine the test scores with our own observations as a form of mixed methods research to see if our findings reflect a particular profile.

Professionals understand the process and the objective arena in which the definitions try to exist. Parents understand their children in a very subjective way. Frankly any notes could and would be disagreed with out of hand with no consideration for objectivity if the parent wanted a different result which would make either releasing them untenable or force them to be made less usefully/not at all if they had to be released.

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

I really do understand the frustration here, 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.

As a quick example, in assessing dyslexia part of the informal assessment is to find out how literate the parents are and whether children live in a 'language rich environment' at home.

Now a parent annoyed that I have not diagnosed dyslexia may pick up on that at go nuts accusing me of blaming the home and parents, completely disregarding 5 or 6 tests and a whole host of other information collected from them, the school, the child.

How could I reach a useful and honest decision if I had to make notes as inoffensive as possible in what is actually quite an invasive testing process? It just isn't possible.

Hi OP,
I'm having an impossible time of obtaining notes written (a copy of the form sent to my local authority) for DS' EHCP application. They are ridiculously pass the buck-ish about it and said that if I wasn't happy, they'd need to speak to the top consultant / Dr on the team. He still hasn't called me back despite three telephone calls. I've read the NHS website on Data Protection and, as a previous MNer has already commented, there is absolutely no reason why I shouldn't be able to see these notes (this important document) since it only pertains to my own child. Frustrating and obviously ducking the law! He has ASC.

As for dyslexia assessment and te need to conceal and withold information contained in test papers, I too am a dyslexia assessor (not that this is at all relevant you your post, OP) and I happily show parents test papers in order to exemplify and clarify questions about scoring and subtests comprtence, if requested. I don't hand the papers over or copy them but have nothing to hide and make my opinions clear in the report.

As a quick aside I would ask Patoss/ BDA for clarification on that practice.

I have had it made crystal clear that I should not do this, to the extent that I should even be wary of giving examples of spelling errors made in a single word spelling test.

There is no such thing as a practitioners 'personal' notes in the nhs. The notes belong to the child and as a parent, the op is entitled to access the notes.
If you're working for the nhs Jonathan then your should be objective not 'inoffensive'. There are ways of tactfully writing things that may cause offence. I've been a children's nurse for 9 years and have never heard of anything such as 'personal' notes. If your not happy for a patient to see your notes or have them scrutinised in court then you don't write it down. Simple as that.

I do not work for the nhs, my assessments are done privately, so there may well be different guidance!

I am also not familiar with the ADOS either.

My posts were entirely to explain the default response given to such a request.

Where such a challenge would go in my form of assessment I do not know, if it was clear that a parent would attempt to force a release I would simply hand over the process to PATOSS to make a decision and abide by whatever they wished.