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Information disclosure within the SEN system: your stories

(174 Posts)
inappropriatelyemployed Fri 24-May-13 16:57:18

I have what I think is some very interesting news about a possible campaign.

I have met with leading international privacy lawyers who are prepared to act for free in relation to raising the issue of unlawful information sharing between LAs and their NHS colleagues in the SEN process. This will include issues of disclosing reports to Tribunal without consent, passing on information without consent, discussing our children to fix up reports and inaccurate information in reports, etc

They have said they will organise a meeting with the ICO and throw their weight behind lobbying for the issue of clear guidelines.

The firm are prepared to do all the leg work for this as a pro bono project. They are looking for case examples of these practices so we can compile a dossier.

I know some of us have been on the receiving end of some very shoddy practices.

Can you PM me if you would like to get involved by sharing your story? This would be treated confidentially and used just to lobby the ICO. it could be anonymised if you would prefer

inappropriatelyemployed Fri 14-Jun-13 16:16:47

"We could also Tweet out a link to this thread if that would be helpful for you?"

Oooh, yes please!!!

StarlightMcKenzie Sat 15-Jun-13 10:11:16

Only just seen this with the deadline.

Hope to get some stories by end of weekend.

inappropriatelyemployed Sat 15-Jun-13 12:28:23

No need for stories by end of the week - just to let me know that you are wanting to be involved and I know you are Star!

TheTimeTravellersWife Sun 16-Jun-13 10:49:42

I have been asked to sign a consent form for DD's new school to allow professionals to share information. I'm tempted to tear up the form and write my own letter,staring that I only agree if I'm copied in to all reports shared and informed of the purpose and outomes of meetings that professionals have with my daughter.
i would also like to be given notice, to allow me to arttend, if necessary.
Does anyone have a link to any Data Protection Act legislation that I could refer to to support my letter?
It's a new school so I dont want to appear too "arsey" about this, but from my own experience, you sign a consent form for info sharing during Statutory Assessment and that consent is then considered to have been given permanently and as a parent, you can find yourself the last person to receive info about your child,if indeed, you receive it at all!

inappropriatelyemployed Sun 16-Jun-13 11:29:58

There is stuff on the ICO website, including this code for data sharing.

I think you can phrase it constructively to say you agree to the sharing of personal information for your son's benefit subject to the following conditions - and list them. This could include reference to the ICOs code of data sharing and of course should be subject to any law common law confidentiality duties,

TheTimeTravellersWife Sun 16-Jun-13 13:02:36

Thank you IE! That's very helpful. I can see that I need to read up on this subject. Being a parent of a child with SN you really do need to develop a very good knowledge of all aspects of the law!

inappropriatelyemployed Sun 16-Jun-13 13:26:02

Do get in touch by PM if you want to share any stories to add to this campaign?

inappropriatelyemployed Mon 17-Jun-13 12:12:25


bjkmummy Mon 17-Jun-13 17:31:03

i think this happened to me. i got a private Ot report, La then got a NHS one - there is some dispute over the date the LA got it and i think it was 'doctored' ie more than one version of it. the LA certainly had it at least 2 weeks before i got to see it. i also had the experience of the autism outreach changing documents. i also asked for minutes from a panel meeting to only receive a 2 line sentence and was told the panel was not a panel but a 'case discussion' hence no formal minutes taken - it would be this meeting that the La would have taken the decision to drag us to tribunal. my LA are also now at meetings re the new local offer and EHCP referring to my case albeit not my name stating that the tribunal will always side with parents if they get private reports. as i live in such a small county others at these meetings who are parents know exactly who the LA are talking about and therefore people know all the ins and outs of my tribunal

inappropriatelyemployed Mon 17-Jun-13 17:53:55

Do you want to PM me? I have a form to fill in.

That goes for anyone else. Particularly NHS/LA data sharing. We are moving forward with this with lawyers help and want to put a case file together asap. Just one or two sides of A4

inappropriatelyemployed Mon 17-Jun-13 21:13:24

Would be particularly good to hear from people who know that LA/NHS met to discuss Tribunal evidence before hearing

inappropriatelyemployed Tue 18-Jun-13 07:36:21

Keep bumping!

inappropriatelyemployed Tue 18-Jun-13 20:24:28

bump up -

bjkmummy Thu 20-Jun-13 15:59:21

well my suspicions re my tribunal were confirmed today.saw the NHS OT who the LA employed to write a report to counter act our private report. it turned out she identified our son had even more needs than identified in our report. she told me that the LA had gagged her from speaking to me. she had agreed to phone me once the report had been written but then didnt and emailed me to say she had to speak to her line manager first. the LA were going to call her to the tribunal but then took her off the witness list - i think she was going to go against the LA and they wouldnt risk it. makes sense now why they put so much pressure on us to go with our report when i insisted parts from both reports had to go in the statement. she also confirmed that weeks before the tribunal the LA had confirmed that they would pay for the OT. the LA would then place it all in part 5/6 and only concede it on the morning of the tribunal. it seems clear now that the LA wanted her to say what they wanted and she refused so rather than call her they just dropped her

StarlightMcKenzie Thu 20-Jun-13 16:10:06

The duty of the LA in a tribunal is not to play games, prevent access to information etc. but to supply with tribunal with as much information as they can to enable the panel to make a decision in the best interests of the child.

They are supposed to 'assist' the tribunal in this by being transparent.

I wonder if this is a DDA case!? I mean it is one thing to interpret the information differently and need arbitration, but it is another thing to prevent full information being available that would prevent a disabled child from accessing an education equal in adequacy to their peers!?

Of course, we could all claim this probably, but you always need a whistle-blower prepared to stand against the LA.

AgnesDiPesto Thu 20-Jun-13 16:39:32

Our LA put the lead EP for autism as witness for tribunal, who had never seen DS, rather than the EP who had seen him and written the report. The EP report had recommended ABA or SS and LA ignored it and put mainstream on the statement anyway.

Just before tribunal they tried to get a 4th witness (horrid SLT manager who hates ABA and thinks its abusive). The tribunal refused on basis she had not worked with DS and 'the tribunal expected profs with personal knowledge of DS to attend'. So at the last minute when they saw the way the wind was blowing they decided they had to switch to the original EP. Then effectively gagged him from saying much that was useful.

MumuDeLulu Thu 20-Jun-13 20:11:31


TwiglightZone Thu 20-Jun-13 20:52:55

Yep to all but two of your list! And then some more...

bjkmummy Thu 20-Jun-13 21:14:37

i wish now i had called their nhs ot - the LA spun it at the time that they were not going to call her as they accepted he needed OT. they didnt concede it until the morning so we went to tribunal by calling our OT

inappropriatelyemployed Thu 20-Jun-13 21:28:22

Guys please PM me if you can commit these stories to paper. Very briefly and you need not be identified.

inappropriatelyemployed Fri 21-Jun-13 16:48:37


Summerloading Sat 22-Jun-13 11:11:54


inappropriatelyemployed Sat 22-Jun-13 13:53:08

Many of you have posted interesting stories.

PLEASE help with this now. We can remove your name and personal details. The info will only go to the ICO.

We are always saying we need to stand together to make a noise. MAKE A NOISE NOW!!!

Please PM me by 28th. It won't be the last chance but I can't do this alone. Your stories are the ammo in my gun! Don't leave me shooting blanks!! grin

TwiglightZone Sat 22-Jun-13 14:05:28

Are you also interested in documents being 'selectively' dated. For example, a SALT report being dated before the dates of the appointments? Forms from school being hand-dated with a date before they were sent the form by the LA?

I have made a start on my evidence for you but have so much to report. I have already filled in one A4 sheet and haven't even written up a small portion yet angry

inappropriatelyemployed Sat 22-Jun-13 14:19:45

Put it all down!!!!

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