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

Consider it as cathartic But I know what you mean. We live with the constant trauma of their dirty tactics.

Already up to three A4 sheets and that's only this year since February. I haven't even got the energy to re-visit last year's fun and games. Including two months of the LA bullying telling me that they were going to bring a very large Costs case against me because of their refusal to assess my son! And they very nearly did but bottled it at the last moment so instead brought it against my lawyers. The LA lost. No, actually, because of their games, my son lost.

I feel a name-change coming on....

They also tried to claim punitive damages against my solicitors because their actions, the LA said, prevented my DS from getting provision. So the LA were going to claim damages because he had been denied provision.

wtf!!!

That was nearly a year ago - a year of guess-what! Yep - no provision. On the basis of their very own argument, maybe I should seek punitive damages against the LA?

OH MY GOD!! outrageous. It is very traumatic being bullied by large institutions like that. I really sympathise.

Think of what you are doing as a small opportunity to have your voice heard and your experience read about.

The solicitors dealing with this are international lawyers who deal with the top companies in relation to DPA issues. Their views carry weight and they are backing US - yes, us! You and me.

I think it is a rare opportunity to be heard.

I didn't know what kind of thing you were looking for. The things we've had are DS's MS school SENCO ringing paed and discussing DS's dx and treatments with paed (although in this instance, paed was given impression by SENCO that I was aware she was making the call, which was not true - I planted both feet and insisted that wasn't going to happen again), TA and SENCO suggesting and making arrangements for treatment in school hours without discussing it with me (especially when this particular treatment I had already told them no).

Recently, I found out the paed had rung up DS's teacher to ask her a few questions, and I was a bit that the teacher (well meaning though she may be) was blithely giving out info on DS to paed (as I'm reasonably certain there were no "checks" to see if it was really his paed and nobody discussed this with me prior to the call either). I was told afterwards in a "oh by the way, I spoke to his teacher last week..." manner. I wasn't happy. Not because I actually have an issue with information sharing, but because I felt it was without my knowledge and consent and made me wonder what was going on. I have enough stress without this type of thing.

Please PM me and I will send you a form and you can write if all down!!

My stuff, as you can see, if relatively minor. But I am very uncomfortable with the idea that people from the school can ring the paed or surgery and get confidential info on my DS without my prior knowledge and, for that matter, that the paed can ring up the school and get info on my DS in same regard. I don't imagine there were any security checks to verify they were school employees or medical personnel that had a specific reason for this contact. I prefer that I be notified of this type of contact, along with the specific reason, if nothing else just because I might have something to add or might gain some insight into things by knowing what they're looking at. And dammit I thought this stuff was confidential.

inappropriatelyemployed do you mean me?

The only good thing about being bullied in the way that I was, is that ultimately the lawyers had to pay for their own defence

It was incredibly distressful and stressful. This was all going on while I was still reading devastating reports and for the first time coming to terms with the severity of my child's needs, and grieving for him .

I so want to be heard! And in my RL name. But not yet... Tribunal first.

oops - meant 'distressing and stressful'!

yes triggles

people from the school can ring the paed or surgery and get confidential info on my DS without my prior knowledge

They can't. And if they do, you can report the doctors to the GMC and sue their employers. Information sharing has to be necessary, proportionate, and (other than in exceptional circumstances) requires informed consent. Children have the same rights to confidentiality as adults. Poster

I'm slightly scared by the newest guidance though, in which 'health' and 'social care' are now presumed to be synonymous.

If health and social care are officially synonymous, and health and LA are synonymous by illegal but nonetheless green-lighting of the regulatory bodies, then who 'doesn't' have access to my child's files?

And actually I worked in a company that was brought into one LA to reduce their transport costs, and that meant reducing the number of statements for children in schools that weren't local.

The company won additional consultancy work on the basis of their success with this.

It doesn't surprise me Star. There is no other reason I can think of for Ed officers so be so passionately committed to undermining children, schools and parents.

Off the subject slightly. Does anyone have any contact with IPSEA or other SEN groups like SN Jungle etc to try and publicise this? Have tweeted and emailed SN jungle but they don't seem interested.

These groups have access to large numbers of parents to circulate information so even if they are not in to campaigning for change themselves, they could at least share details with a tweet or an email or put it in their updates.

Call me cynical but I suspect some are too busy carving out a niche and a book deal on this kind of thing or glad handling ministers, etc

Not IPSEA I hasten to add - although I though there voice on the CFBill has not been consistently strong. Nowhere as useless, IMHO, as the EDCM peeps who are knee deep in the proje.t. Indeed, I got a call from a very senior from EDCM person when I complained to the DoE about my pathfinder not allowing me to even apply for a DP and it wasn't to offer me support. What the hell is that about?!

What did they call you about?

Why I was making such a fuss to get DPs. I was threatening a judicial review and had legal aid for it. What I hoped to achieve. How DPs didn't help lots of parents. Why didn't I work it out with the LA?

Yes, it wasn't very likely I could 'work something out with the LA' when they were refusing to even let me make an application.

The woman that rang ended up giving evidence to the HC Select Cttee and sitting and listening to a director of children's services say, effectively, they don't 'do' statements in his county. She made no comment on that one.

Put me right off them.

It was interesting how, after I complained to the DoE, they just started copying her in to my emails too

Then when I questioned this, it was said she would like to meet me. We ended up talking.

I felt that the EDCM/SEN Consortium were knee deep in making this pilot look good and they wanted to keep me quiet.

She offered no sympathy, support, suggestions, she just wanted to know what I was up to.

I found it all pretty disgraceful actually.

It's a scandal how all these things are going on. I have a strong suspicion that parental representation on pathfinders have been seriously compromised, and some of the SEN groups are too invested to question it.

Parental representation is a big part of the pathfinders, but in my experience, parental views are channeled (and vetted) through LA funded parent carer networks. No loose cannons are permitted to take part.

I thought I was being paranoid, but perhaps not

I don't think you are.

I raised a question with our Parent Carer Council a while back. The LA was telling parents they had to sign up to a CAF if they wanted to access any statutory services such as Ed Psych. Wholly unlawful and clearly a delaying tactic.

Parent Partnership were peddling this crap in workshops too.

I contacted the Parent Carer Council who produce regular glossy brochures and have a glossy website and who have the funds to employ people. They did not want to know. They thought it was a jolly good idea. The Chair promptly shut down any conversation of it.

Her name is on the Pathfinder application form too.

I have a theory that there is something particular about ASD that these organisations don't get. The special schools run by the LA and the services offered by the LA fit particular types of disabilities. If your child has those disabilities, you might think the LA is fabulous as it offers you a good school and out a package of out of school activities. So you might decide to be chair of a parent carer council and staunchly support your LA.

And even when the parent carer council dares to not support the LA, they may be misrepresented as I know mine was recently.

Joint production?

And don't even get me started on Parent Partnership

It's a rancid construct from start to finish isn't it? I remember when I first started out on this hellish process, I emailed the head of SEN who, of course, never deals with parents directly, and he suggested I apply my 'activism' to Parent Carer Council.

I can't help feeling that, while these groups started off as challenging and advocating for change, they end up in meetings with tea and biscuits and feeling special cos they have their photo taken with people or people listen to them and ask them what they think. They end up as collaborators, enabling LAs to boast of their great parent partnership working.

Don't get me started on those that run up thousands in legal costs for parents over simple hearings or those selling books or making money out of blogs.

Everyone is making something out of it somehow.

im on my local parent carer council but am about to resign as i cannot continue as i want to be outspoken and everyone else seems to be sat in the LA pockets and question nothing. the final straw for me is an event the council have organised for the NT kids and they seemed to have forgotten to have invited any SEN kids - the whole event is about involvement which is quite ironic. when this was raised, we were then invited but then we asked what alterntive provsion they had in place for the kids ie if some struggled to queue could they go to the front. weve now been told the only concession will be to let the kids in 15 mins early and for this privilege we are to keep quiet and not publicise it. i find that wrong as the LA have no regard the the equality act andthe parent forum is not challenging them so im off the forum as i will not sit in the pocket of the LA

It's liek we're silenced at every turn isn't it?