Information disclosure within the SEN system: your stories

[inappropriatelyemployed]

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]

Yes star, you probably could but I think you could still be entitled to that communication on the basis that you know it refers to your child and the LA do. That would be within the spirit of the act.

This seems to be such common practice.

[bjkmummy]

can i just check something - during my tribunal my LA consulted 3 schools - i didnt want them to - they wrote me a letter telling me. then once they had consulted got a letter back - 2 said no including the school i was at that stage going to tribunal on - ouch! and one said yes. it was clear from the letter as it gave details of the schools reasons for saying yes that the school were well aware of my sons name etc and hadnt been done quietly . i also spoke to the head of one of the schools who said no and he showed me the paperwork he had been sent from my LA - i sat and read it! it had my sons name all over the paperwork - so did my LA breach something by sending my sons reports to them with his name clearly on. it was also clear the head of the school who had said yes had been promised the earth by the LA including buying of OT equipment and she would go on to lie i mean give evidence for the LA at tribunal

[KeepCalmGoCrabbing]

The DPA material I got from my LA showed that my son's Statement and his LA SALT report was sent by unsecured email to the school which eventually said yes. None of it was made anonymous and my son was clearly identifiable. As this is personal data and included medical records, I would love to know the ICO's opinion on this, as my layman's reading of this is that it's a breach of the Data Protection Act

The DPA material also showed that last year an email with some of my son's personal information was sent to a list of cc'ed people including someone outside of the LA - a personal non-work friend of the email's sender (the sender was the LA's SEN lawyer). The very next email in the chain was the LA's SEN manager telling this lawyer off for cc'ing the wrong person!

[inappropriatelyemployed]

BJK and keepon - please write these examples down for this campaign!!

Although the focus is sharing info between LAs/NHS, your stories constitute clear examples of lax data sharing which is probably unlawful.

I agree that sharing a child's data around schools without consent requires justification to be within one of the lawful data processing principles but I tell you what, surprise surprise, the ICO will invent that reason for them.

That is the purpose of this campaign really, to take it up to senior levels of the ICO and get them to address these practice.

[inappropriatelyemployed]

I wonder if MNHQ will retweet one of my tweets. I have tweeted at them a few times to no avail!!

[StarlightMcKenzie]

www.guardian.co.uk/commentisfree/2013/jun/24/how-trust-state-spies-citizens It's all falling apart

[StarlightMcKenzie]

Think this journalist might be interested?

[inappropriatelyemployed]

Have tweeted at him!!


I keep trying to jump on the end of anything vaguely relevant! Particularly NAS useless campaign tweets.

[inappropriatelyemployed]

Help me tweet at @NASCampaigns

Something like: Support our parents campaign to stop unlawful info sharing by LAs or LAs and NHS in SEN system

Or your own words obviously.

[KeepCalmGoCrabbing]

IE - it's all being written down but I need to sail into the Tribunal all calm, serene and mumsy, not someone baying for blood! So you'll have it all probably end of July.

Sometimes I wonder if I write to much on MNSN for me to be identified (why the hell I'm scared, I really don't know). Then I read all the other unlawful/shoddy/immoral practices on here and think that even if a LA bod was reading my posts, they wouldn't work out I'm talking about them because all this illegal/immoral/shoddy practices are widespread throughout England! I could be any parent, from any county, with a child with any number SENs - the LAs practices would be exactly the same.

[inappropriatelyemployed]

I know what you mean buddy! Don't out yourself yet. Me, I am past caring!

[inappropriatelyemployed]

MNHQ - bloody Luverly - retweeted!! Ta very mucho.

[StarlightMcKenzie]

Keep, I have been followed on here by two LAs and the DWP, so you're not paranoid, it can really happen.

I can't even be bothered to name change any more.

[bjkmummy]

sadly keep calm that is very true. yes deffo keep calm, hard to do as im sure they say things to deliberately rile you - i know they did with but but for some reason on the day i was absolutely calm and was able to let it all glide above my head. post tribunal i put some of the comments that were said to the LA officers and they said they couldnt believe other officers would say such a thing as of course they were completely untrue - yeah right!!! i asked my social worker out right where the hell she had been in the year we went through tribunal. the same year my son was out of school, the same year where noone not even the EWO checked up on him, the year he had no education whatsoever but as soon as we won the social worker reappeared and as if by magic they have decided to do a reassessment of my sons needs. her response was that she had no concerns as they all know what a good parent we are - so why then did one of her colleagues openly in the tribunal make reference that 'she could not comment on what goes on in the home' the social worker works in the same office as the sen team so heard all of the bitching about me - she didnt deny it when i put that to her but tried to say she was here for my son - the same son that she had forgotten about for a year and that of course i could trust her. and she keeps asking me about my involvement on the parent carer forum for some reason

[bochead]

parent carer forum equals an opportunity to spy on you (cynical moi?????).

If I have understood correctly I need to blitz EVERY agency that has ever dealt with my son at once, when I do my DPA/FOI request if I want to have ANY chance of getting at the truth of what's been said behind my back? I do need this info tbh if I'm to have any chance of defending myself should I need to at some point in the future.

I'm still furious that 4 years worth of my son's GP notes are "missing" and so intend to have a serious crack at hunting them down in the near future.

[StarlightMcKenzie]

Yes. So research what ID/payment you need for each 'system' in order to have it ready.

There is nothing worse than half the people you have requested information from delaying to discuss you with their friends due to clarification of something.

[KeepCalmGoCrabbing]

From my reading of this thread, you also have to blitz every agency who you DON'T know has dealt with your DC! So in my case, I need to do a fishing exercise on every single primary school in my area to see if they were sent my son's Statement.

bochead - that is absolutely outrageous that 4 years gp notes are missing. How very convenient for them!

[inappropriatelyemployed]

That awful BJK. They like diverting people to organisations they know to be threatless - perhaps thinking it will keep you busy and quiet!

It is interesting who will retweet and who won't. None of the big organisations -IPSEA, NAS, etc are remotely interested. The NAS seems to focus campaigns in adults. Important without doubt but I do cynically think it is easier than challenging a core cause of lost life chances - LAs - as they are so bound up with EBP franchises and running schools they want LAs to fund children to go to.

[StarlightMcKenzie]

Boch Can you rewrite those 4 years from memory but with some additional damning stuff against the NHS and insist that they are placed on his file as the 'best endeavour' until they are found?

[bochead]

Fantastic idea Star, especially as I DO have the full and complete hospital records for the period in question .

Are HV records separate to the GP's? Asking cos it's 0-4 that's missing and I DID express my concerns over his delays/eccentricities very early on. I even asked for the LA EP to go in and observe when he was 3. Thankfully this means I know I'll be accurate with dates etc.

[inappropriatelyemployed]

I imagine they are Boc. I think GP will only have their own notes.

[inappropriatelyemployed]

Bump de bump

[inappropriatelyemployed]

Bumping

[NoHaudinMaWheest]

I am not entirely sure if this is the sort of thing you are looking for and it was years ago (about 6).

Ds then yr5 was on the verge of being diagnosed with HFA. He had already been diagnosed with OCD and it was this that was causing problems in school. However they weren't major and not disruptive and he was largely benefitting and participating in class. Main issue was being unable to use the toilet without help. With school's agreement I was going in at lunchtime to help him.

With hindsight the HT was determined to get rid of him. I was new to SN and naive. With our permission his psychiatrist had spoken to HT and explained something of what his diagnoses meant.

A few weeks I later got a call out of the blue from HT asking me not to bring Ds to school the following week. When challenged as to why the HT said that she had spoken to the psychiatrist that day who had said that Ds was a very sick little boy who ought to be in hospital.

At an emergency appointment with the psychiartist she said that she had said nothing of the sort and corrected in writing what she had said. This was that OCD could not be cured with a magic wand and that if HT felt she could not meet his needs in school then it was up to her to source alternative provision.

The HT was obviously trying to get the psychiatrist to approve her decision to oust Ds. She did not have our permission to contact the psychiatrist. When we asked psychiatrist why she had spoken to HT without our permission she said that she consider permission for previous contact would be ongoing.

This was not our understanding and given the difficult situation with the school we would certainly have wanted to be consulted before each contact.

[inappropriatelyemployed]

Thanks. That is really helpful but shocking, I am so sorry. What happened with your son?

Could you PM me and I will send you a form to complete and post this on.