Here some suggested organisations that offer expert advice on SN.
Information disclosure within the SEN system: your stories(174 Posts)
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
Looking for feedback by 14th June if possible so we can get together a dossier of cases.,
The problem is, it simply isn't followed. Those blanket 'consent to share info' boxes you always have to sign are (I think) unlikely to prove sufficient in court. Because medical treatment consent isn't the same as a contract for services. It's not a checkbox on a mobile phone deal confirming you've read 64 pages of terms and conditions. The onus is on the practitioner to make sure the patient understands what they're signing. If a surgical consent form for a breast enlargement had 'and lop off any bits as we see fit' at the bottom, they wouldn't really expect to escape the judge.
The fact is that this isn't applied and bodies are free to make up their own policy or interpretation - so, for example, the RCSLT guidance in the SN process is appalling.
But the guidance doesn't come from directly from the ICO and we are trying to get the ICO to issue definitive and clear guidance for all parties to the SN process: LA, Tribunal, health practitioners
The HCPC was basically invented to make sure the individual bodies were being strict enough. So if (for example) the nursing and midwifery council lets an errant nurse off the hook, she can be dragged back and retried on the orders of the HCPC. Or a doctor can be sued for negligence in disclosing irrelevant information. Or an NHS trust could face a libel allegation for letting employees email that a certain mother is nuts.
Given this is ignored, why wouldn't ICO be ignored too? <devil's advocate>
Mareeya - thanks.
This is no panacea. It is an opportunity to raise the profile of an issue because a group of senior legal specialists are prepared to do something for parents for nothing.
Most health practitioners understand their role in the clinical context but for some reason don't see it in the SEN context.
I am unaware of specific guidance in the SEN context on the specific issue of data sharing which covers all parties.
My view is that it is an opportunity worth grasping to highlight a problem and potentially get some very specific SEN context guidance for all parties, including Tribunal, to refer to.
If you have a story you are willing to share let me know.
We can all bang on in our individual way with our individual complaints to oversight bodies about health professionals/LA not doing what they are supposed to and watch those oversight bodies ignore us.
Or we can look at ways of doing things together when we can to achieve constructive goals.
Clear ICO guidance could be used by parents, it could be referred to in complaints to the ICO and others.
It won't solve abuse in the SEN system but it cant hurt.
It also provides an opportunity for us to unite and organise around a single issue,
It is a start.
What we are hoping for is evidence (people's stories) that this goes on despite all the guidance you talk of.
This is a publicity point too as the firm are a very large international firm with substantial resources and 4 people working in this for nothing.
I suspect the difficulty is rooted in the differences between the various models of information sharing.
1) within the clinical team: more-or-less free exchange
2) with other NHS staff: as necessary, eg chats for advice
3) with social services: if the child may need safeguarding, or if there are reasonable grounds to think your 'small piece of the puzzle' is needed to consider need to safeguard.
4) with outside bodies who have consent to get info to help the client. Social services again (meals on wheels, your granny's hospital discharge, child in need etc), and I would guess education might fall in here in people's mental hierarchy
5) outside bodies with apparent consent who may not be helping the client in the way they want (police, employers, benefits agency, holiday insurers)
6) outside bodies without consent, where only possibly life-threatening stuff can be disclosed (police again, DVLA
I think the guidance would be very useful. perhaps as a starting point they should look at what's wrong with the RCSLT guidance and contrast it with the GMC's?
I very much would like to work on something that brings something constructive out of the mess and stress of the last 18 months of trying to get provision for my DS.
I can't met your deadlines because the Tribunal is after your deadline and I can't risk going public before then. (The mere fact that there is a cloak of silence for families going through Tribunal is disgraceful in itself.)
Are you looking at just the exchange of data between agencies or other DPA/ICO issues? For example, weeding of data, electronic exchange of unencrypted personal data, accidentally emailing personal data to the wrong person, not replying properly/legally to a subject access request?
If you can wait for me, I would very interested in helping.
Just back from my hols! Yes Rosie - of course we can wait. Do you have my email? PM me and I will send it to you.
Bumping for anyone else interested.
Mareeya - thanks for those comments. I think the problem is that there are not different formal models of info sharing at all but that these things have developed informally despite the rules on info sharing which are generally pretty clear but not applied.
The whole thing has got very lax in the SEN world so the reasonableness or necessity of sharing for the benefit of the child is not even considered as the focus is on protecting limited resources and planning to counter parents' claims
The GMC would not have SEN specific guidance but their guidance in any clinical context would be the same as other health professionals, including the RCSLT.
The difference is, the RCSLT (and I suspect other bodies) seem to forget basic clinical guidance as soon as the issue of Tribunal arises - hence their own SEND guidelines not even referencing the DPA.
Bumping for your help buddies!
Bumping - any chance of getting this pinned?
Bumping as it hasn't been pinned.
Just to add, the sort of issues are which might be helpful to get stories on include:
Reports from professionals are circulated before you have even seen them
You have not been given the chance to amend reports or comment on their accuracy
Information has been shared (or your child discussed) in meetings you have not been invited to, perhaps between LA and health professionals, without your consent. This might have ended in a united front against you!
LAs have contacted health professionals to ask them to amend your child's report or diagnosis or level of provision
Health professionals have been contacted and told they can't quantify provision
False/incorrect information been circulated about you and/or your child
You been denied access to information. For example, if you asked for copies of a report and been denied it (LAs sometimes refuse to release Ed Psych's reports) or of a decision by a Panel
Schools have been contacted to try and persuade them to take a child without your knowledge
Any other collusion between health and education professionals
bump - I have asked MN to pin this. Do me a favour and ask too so I don't have to keep bumping!
Trouble is, everyone who ought to complain is too afraid to.
Hi inappropriatelyemployed - we're really sorry you didn't get a reply to your mail; it was, er, user error at our end. Apologies.
We only ever pin/sticky official MNHQ stuff. We're sorry if this seems harsh, but it keeps things tidy - and means that we can't get accused of picking favourites or giving favours to some posters and not to others, which might well happen otherwise.
We know bumping is a bit tedious, but it is the best way to keep your thread visible towards the top of the board.
We could also Tweet out a link to this thread if that would be helpful for you?
We're really sorry to be disobliging (and for failing to answer your mail).
I agree MumuDeLulu - and that's shameful in itself that we are all too scared. But if no-one does, then these illegal practices (and others) will continue to be 'the norm'. I, for one, will be joining this campaign after Tribunal in July.
<passes notes at the back of class>
It is on my blog and I have tweeted and repeat the tweet every so often.
If you share your story you will NOT be exposed - I guarantee it. We can keep details confidential and anonymise people as long as I know who you are.
The data will be shared with the ICO only to lobby them to consider setting clear guidelines specifically for this area. It will not be shared with anyone else,
"We could also Tweet out a link to this thread if that would be helpful for you?"
Oooh, yes please!!!
Only just seen this with the deadline.
Hope to get some stories by end of weekend.
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!
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!
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,
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!
Do get in touch by PM if you want to share any stories to add to this campaign?
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
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
Would be particularly good to hear from people who know that LA/NHS met to discuss Tribunal evidence before hearing
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
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.
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.
Yep to all but two of your list! And then some more...
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
Guys please PM me if you can commit these stories to paper. Very briefly and you need not be identified.
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!!
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
Put it all down!!!!
Oh god. I am really really REALLY angry now as I'm in the process of writing it all down for you. I'm going to have to sit on this for a while and do it in small chunks otherwise I'm going to go into Tribunal baying for blood when I need to be cool, calm and collected!
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.
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'!
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.
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?
Perhaps we should wear badges such as ' I know the Sencop', 'Honk' and ' 'I'm part of the MNSN massive'. It might help us to be taken seriously
Or even one such as ' SEN campaign for fairness and justice'. That'll put the wind up 'em.
I think 'Oppressed' is more accurate.
'SEN Parents, Know Your Place!'
Take away their hope and power and demand they show appreciation for any small concession. Treat them with pity and raise your status as 'provider'.
Be part of this evangelical culture and teach parents of children with disabilities to trust in us and we will deliver what we know they need, not what they want. Reward those who have faith, send those without straight to he'll!
Absolutely Star, absolutely. You will be driven out of the ranks of the 'deserving parents' for heresy!!
Message withdrawn at poster's request.
It's gone already.
Has the page been removed or was your link wonky.
I hope deleted, because that shows that people are out there and they are taking some bloody notice.
Following my earlier post on co-production and pathfinders, see this report from CA Family re strengthening parent participation,
particularly this excerpt
We asked forums if they received additional funding to support their participation work. The amounts vary significantly, and there is not always clarity about whether the additional funding is purely to support participation,or whether forums have been commissioned to deliver support and / or services. In the few areas where there is significant funding (over £40,000) our intelligence would suggest that these forums are also now delivery agents for the funder.
Message withdrawn at poster's request.
Actually, I think good practice does need to be highlighted. There is lots of propaganda, but real provision is so bad, that for most of us the 'rotten apple' is the norm. Our point of reference is a barrel of decomposing fruit.
It's precisely because the whole system stinks, that examples of real-world acceptable work are so badly needed. If you'd never seen a good apple, someone else would need to tell you what they look, smell and taste like.
Ok fine, but if all you do is highlight good practice and not put it in context than you are as bad as the LAs who tell you all about how well regarded they are by other people or schools who tell you how great Ofsted think they are.
There is clearly a place for highlighting good practice but in a world where bad practice is the norm, is that the right focus? Doesn't it make parents feel, again, like no one is really listening?
It's not like other areas will suddenly say - oh look, that blog thinks Xcounty is good, let's change our practices.
Also, I am sorry if this offends but I really think it is a bit patronising to say we wouldn't know what good practice looks like (by your apple analogy). Really I find that very offensive.
I know exactly what good practice should look like - which is why I know I am not getting it.
I think books and blogs are probably ok too . Blogs rarely make much money, and low-circulation specialist books need to be publicised, and sell, otherwise the publishers won't even consider the next author.
Btw, while suggesting we should define, describe and disseminate good practice, I really don't think posing for BFF photos with ministers, nor becoming financially entangled with LAs are good ideas in any way.
At this point I'd normally suggest a read through Bad Pharma for the risks to objectivity posed by becoming an industry insider. Given Ben Goldacre has now had his pic taken with Gove, perhaps make up your own mind.
Message withdrawn at poster's request.
Sorry I am getting angry about this now. There are precious view avenues for parents to get their voices heard. They are silent. Absolutely silenced by this system.
This isn't against you Mumu at all honestly. Just the system and the way it violates parents private space and lives and then sits on them to keep them quiet. Then to see the organisations and 'advocates' who should be shouting about this, canoodling with Ministers and talking only about good practice makes me
I take your point about Goldacre too.
Sorry to offend you IE. I totally agree that any 'individual good practice' should be looked at with an explicit acknowledgement of its rarity. Not 'Mumushire are ace'. More, 'One particular SLT in Mumushire uses up-to-date, evidence-based programmes when setting her SMART targets'. Or 'Every VI child in Mumushire gets accessible computing equipment, and a weekly session with a properly qualified specialist VI teacher'.
Context is everything, and I should have stated that.
When I started, I didn't know what 'good' SEN practice would be. I was a Victorian pauper, agreeing that my fecklessness caused the SEN, grateful for my dc's dollop of gruel. In RL I still constantly meet people who've never thought they could expect better than the sloppy, lazy, incompetent service they've grown used to.
Yes, they do know it's rubbish. But often they don't realise quite how bad it is, nor that (say) 10% of the professional staff serving SEN dc are actually refusing to collude with the constant lies, and insisting on doing a reasonable job regardless. And those staff are being driven out; having their good work publicly acknowledged may give some small protection.
Two legs good, four legs bad
meaning that whatever we say, it'll probably be twisted
Sorry Mumu too. I'm just being pissy because the level of this poor pratice astounds me.
It's also that none of these 'big' organisations or 'names' are remotely bothered about my contact or retweeting my stuff about the campaign save for Anna Kennedy.
I'm concluding that their job is not to ruffle feathers but to not help spread the word about a legitimate campaign supported by a firm of lawyers is baffling.
'Yes, they do know it's rubbish. But often they don't realise quite how bad it is'
I think one of the reasons for this is that they believe the rubbishness lies in the limited availability of the services, rather than the quality. They feel that if their child had MORE then they would be understood better, get appropriate intervention etc.
In reality, those of us who have fought hard for more, realise too late that more crap is just that. Then you start the battle for an alternative to the crap, but because you have 'more', changing is a)expensive to match and b)you have no friends left in the LA from your battle for 'more'.
I don't think parents DO know what good practice looks like tbh, because they are encouraged to consider their child's needs in regards to what the LA want to offer. They are told that what is provided is the best they can expect to get. Words such as cuts, limited, high level, lucky etc are banded about and the parents become grateful for 'anything'.
Most don't and can't challenge provision because by doing so they risk being cut off completely. I often think of it as that condition where hostages 'befriend' their captors in order to cope and because that is the only thing they feel they are able to control i.e. their level of 'likedness' in the hope of an odd 'favour'.
Most can't kick and scream and hit their heads against a brick wall for long. To get any sustenance at all you have to be compliant and show gratitude, and if you pander a few egos you might get a bit more. But complain about the quality of it and you'll risk months of abuse.
Agree with starlight in that most parents don't know what good practice is.
I remember being so pathetically grateful to the LA while they were denying my ds the right to minimal support and tell me how lucky I was. I remember how I tried to appease the school all the years they wre stealing from my ds, using his TA in order to save money.
Thank goodness for sites like this.
And most TEACHERS don't appear to know what good practice is.
But why should they when parents would accept most things they say and defer to their expertise.
I see your point but I'm sick and tired of the 'accentuate the positive' line - it's like some kind of Stockholm syndrome, if we work with them, and encourage them they'll get better by osmosis.
They won't. Why? Because it is about money and careers and self-perpetuating bureaucracies that only give a crap about how parents think in so far as it reflects on their own auditing criteria.
I'm tired of big charities buying into this as it helps justify their own existence (or provides funding). We hear enough about evaluations that tell LAs how great their work is, or their SLT service is, or Bills before Parliament supported by charities tied to their success or parental advocates groups telling us to look at good practice when they are too wimpy to start shouting about bad practice.
My point is - if you don't know what 'good practice' is perhaps, as you guys have pointed out yourselves, it's because you don't realise that the services your child is being offered are crap.
But if you know what the law says, you realise how crap things are because LAs ROUTINELY act unlawfully.
So, you could approach it two ways: accentuate the positive and start a campaign talking about how good things can be when they are actually almost universally, shit, in the hope that (a) parents might self-refer and question their own provision and (b) other LAs will see the error of their ways.
But, seriously, what is the point of that when we know that the reality is, if you are looking for examples of 'good practice', they will be individual based - indeed, point is proven by the limited examples of 'good practice' on the SN Jungle website. And, actually, I defy anyone to find an example of an LA which doesn't routinely pursue unlawful SEN policies or which measures the outcomes of its interventions or which demonstrates a clear understanding of the Equality Act etc etc. ?
Or you can at least let parents tell the truth about their experiences in the hope that someone might pay attention and that, in the meantime, parents will see they are not alone.
If it looks like shit, and smells like shit, it's probably shit.
So why concentrate on the occasional petal of apple blossom?
If it looks like shit, and smells like shit, it's probably shit.
Dear god, please give me the strength and courage not to say IE's words above to my LA when I met them in the Tribunal room. Please also give me the courage to not shove their illegal Statement where the sun doesn't shine.
I'm with you IA. I've yet to find any 'good practice' in my DC's story. Just illegal practices.
Did you know that NHS choices has a sort of trip advisor section? It's a b****r to find, but basically you select your hospital or trust, find the children's services section, then let rip about the poor excuse for SLT services etc. Or compliment them on the stray petal of apple blossom, obviously
And keeping with the 'theme', I don't think most SENCOs know what good practice is, or Advisory Teachers, or SEN Managers,
And I KNOW that the LGO don't know what good practice is, feck, they don't even know what the LAW is!
Star but you are talking about good practice and basic compliance with the law as if they are the same thing. They are not.
If there was a campaign which said - we want lawful SEN practice, that is one thing.
A campaign to highlight 'good practice' that is likely to be little more than lawful practice is misleading
But I am all for a campaign to make SEN practice lawful. I think you do that by setting out the law though rather than describing lawful practice as 'good' iykwim
Thanks for the links Mumu!
Just two months ago I found out (through DPA material) that my DC's Statement had been finalised in a manner that breached/broke a specific clause in the Education Act. It also was breaking specific clauses in the SEN CoP - which, although is only a 'code of practice' should be followed by LAs. My solicitor didn't want to know as it's 'common practice' that a Statement is finalised in such a way.
In my day job, if I blatantly broke specific clauses in a specific laws relating to my work, I would a) loose my career b) personally be subjected to financial penalty c) if it involved a 'contract' (such as a SSEN) then that contract would probably be null and void d) I would probably also personally get a big rap over the knuckles from the ICO.
But LAs staff can do this breaking of law day in day out and 'get away with it'. I want lawful SEN practices. I want heavy penalties for both staff and LAs who break the law. I want Statements that have been illegally written/finalised to be declared null and void and then properly re-done.
The law doesn't need to be set-out. It is already set-out. LAs have to be made to follow the law - just like everyone else has to do in this country.
Can you/how do you get information under the DPA if it is 'carefully' doesn't name you or your child but is undoubtedly ABOUT your child?
Yes, all this nonsense about needed to 'reform' the SEN service provision because it isn't working.
There's nothing wrong with it. There is something wrong with the regulation of it.
I almost don't care what the law is, provided it is enforced. At least parents wouldn't be stabbing in the dark and wasting resources under false pretences.
Star it doesn't need to name you or your child if you or your child can be identified from it. Then it will be covered by the DPA
Keeping, I agree, the level of resignation on the part of all those in the system is depressing. However, my current solicitor is not like that and will always try and present a way of challenging poor practice.
Wasn't that the first idea of the new Bill though?
To remove dc's legal right to a suitable education, and replace it with a 'best endeavours' system, so education effectively becomes discretionary, like health and social care provision.
So if ds' statement was sent anonymously to various schools I can request a copy of the accompanying correspondence?
I just left feedback re SALT for hospital using first link and had it rejected because it could be considered defamatory and/or libellous.
I said that the SALT service didn't respect patient confidentiality and colluded with the LA before a SENDIST tribunal, plus changed reports after they had been written.
It's the fecking TRUTH and I can prove it ffs.
I agree what we really need is to see the existing legal rights/safeguards, being enforced on a day to day practical level.
After that I'd like to see Ofsted inspectors with a genuine knowledge of evidence based practice, the law and SN doing spot checks and failing those institutions which routinely fail SN kids. A school should only be rated as "Outstanding" if it can be proven that ALL pupils are progressing to their full potential, including those with SN.
The corruption in the public sector is deep and entrenched. I often think that our kids merely represent the "canary in the coal mine" of the education & health systems in general. The adult functional literacy and numeracy rates for a country with as many years of compulsory education as the UK has is truly shocking.
I loathe and despise "parent forums" as I've yet to come across one in RL that hasn't been subjected to VERY careful vetting and herding to ensure that only the LA party line voice gets heard iykwim.
No parent should be routinely subjected to a witch hunt for merely requesting that those being paid from the public purse to do a job, actually do so. No parent should have to sell their home, sacrifice their career/livelihood, go into massive debt etc, etc just to obtain the basic supposedly universal right to an adequate education for their child, as defined by UK law.
Star, there should be a paper trail somewhere of 'something'. In my DC's case, the DPA material from the LA showed up a telephone note that Mrs xyz of xyz School (local primary school) called to say that they would 'like to take littleKeep because they have a good track record for dyslexia but only if [named person] isn't sent to them'
That's it. This is the only way I knew that the local primary school had been sent his Statement. No other paper trail. There must have been something else, a cover letter, an email - something. But then the LA didn't disclose the email chain that went to and fro between themselves and the finally named school. The named school declared it, but not the LA.
And the [named person] in the primary school who refused to take DC was not redacted in the DPA material so I know who that child is.
Is it against the law to send a child's statement to a bunch of schools without the knowledge of the parent even if they have removed the name?
Alright. I've got three foolproof ideas to expose the SEN system.
1. Set up lots of spoof websites claiming to be satirical, but post the truth.
2. Exploit all possible links with NHS-and-regulators-are-criminals scandal
3. We all apply to appear on the Jeremy Kyle show with our LA adversaries
Bochead - great post as ever.
Mumu - love the ideas. Am certainly jumping on the back of every NHS tweet I see to post link to info sharing blog. Join twitter and help! Love the Jeremy Kyle idea
Star, I have had a few people mention this and I think, if you are identifiable, they should have got your consent. It seems another example if routine data sharing behind parnts back usually with the intention of undermining you.
When I said to our LA they were not to share without my permission, they said, we don't need it. now in some cases that is true but not in every case and they routinely copy people in to their letters that have nothing to do with DS. I pick them up every time but they ignore me.
Well,if wholesale law breaking is your stock in trade and every oversight body backs you up, why would you care what a 'vexatious' parent thinks?
I think the issue that I just mentioned may or may not be breaking the law, but you have to ask yourself WHY the LA has done it that way.
Why make statements anonymous and send to a bunch of school? Why not just get consent and then send the statement as is?
That is the crucial point Star - I completely agree. Why do this? We know why. I know a family this is happening to presently.
Their DD has been excluded from two independent schools. They went to a mainstream out of county school to try and get a place and after a trial, the school said we need full-time hours. LA say 20 hours. School said we can't take her on 20. LA refuse to budge.
The other county says, in writing, we support the school and you need to consider specialist placement for this child.
Our LA issues statement with mainstream school (no name) and 20 hours. They are now running around trying to find her a school by sending out her statement to a variety of schools.
The parents have not asked them to do this and the parents don't want the child to go to any of these schools.
In reality, the LA will just try and force a school to take her or why else would they do it.
An 'outstanding' school like my DS' old school who will just not put the provision in place and don't give a shit if the kid fails as long as they keep the LA happy.
That is EXACTLY what happened to us. Loads of schools must have rejected ds because the one that accepted him was 9th closest. But giving his statement annonyomously presumably deters the parents from accessing the information regarding WHY the other schools rejected him, which would be useful to them.
Also, our LA had just recently got fined for sending out statements with the child's name on.
The 'transparent' way to do that would have been to tell the parents that you wish to consult x school and request permission. If they say no, submit to tribunal to get an order.
Yes. And why not do it that way? There can be male fides intent not to work openly.
Could I have sent ds' statement as was to all of the schools and tell them that this is my ds, and then on that basis he is identified and I would have had entitlement to the communications regarding it?
And has your friend's LA hired a certain solicitor well known for dirty tricks?
I was astounded when my son's final Statement came to me because it named a mainstream school with SALT unit 20 miles away from us, down a busy motorway. I had never heard of this school and knew noone in the town whose children went to it.
I knew that his Statement 'must' have been sent to the local primary school (this was verified months later when the LAs DPA material showed a telephone message from its head). But my town has two primary schools, plus the local villages all around have schools. In fact I was half-expecting him to be placed in my DD's (now grown up) primary school 5 miles away because her's was the overspill mainstream school the LA use when they can't place NT children when the town's schools are full.
But reading your posts above, I'm now beginning to think that they must have sent it to all the local schools and they all refused to take him.
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.
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
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!
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.
I wonder if MNHQ will retweet one of my tweets. I have tweeted at them a few times to no avail!!
www.guardian.co.uk/commentisfree/2013/jun/24/how-trust-state-spies-citizens It's all falling apart
Think this journalist might be interested?
Have tweeted at him!!
I keep trying to jump on the end of anything vaguely relevant! Particularly NAS useless campaign tweets.
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.
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.
I know what you mean buddy! Don't out yourself yet. Me, I am past caring!
MNHQ - bloody Luverly - retweeted!! Ta very mucho.
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.
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
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.
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.
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!
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.
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?
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.
I imagine they are Boc. I think GP will only have their own notes.
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.
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.
Long story afterwards. HT went ahead with illegal exclusion, we challenged it, BoG agreed it was wrong. By that time it was too late for Ds who in panic mode refused to return. He had home tutoring for the rest of yr5.
Meantime we had applied for SA -school was stalling- eventually LA issued a statement but without naming a school. We had said it was clear original school did not want him and had named another local school. We decided not to pussyfoot around this time and went to tribunal. Once tribunal date was set LA caved in and named school we wanted.
By this time Ds was in Link education for pupils out of school and in a reasonable small group. He was able to build up to attending the ms school 1 and a half afternoons a week.
LA reckoned it would be impossible to find a ms secondary to take him or that he could cope with (there were no suitable ss schools) and that he would stay in Link until 16. This was totally unsuitable as little in the way of specialist teachers or facilities and Ds is academically able and motivated.
More by chance than anything else we found a ms secondary able and willing to support him. He has just finished GCSEs there and the support has been excellent and as much a matter of attitude as resources. Even when his OCD had a major exacerbation (nothing to do with school) and he spent large parts of yrs8&9 housebound or in hospital, they were very supportive.
Unfortunately this school doesn't have a 6th form so he is having to move for A levels. On paper support at new school looks good as is attitude but we will see. Current battle with LA is over transport.
I have pm you for the form.
Ta. I'm on it. Just need to finish off one.
I'm bumping this. Your stories are needed.
This is a chance to do something small but practical and positive to try and change poor practices - or at least provide parents some clear guidance to argue with.
To recap, more information about the kind of examples we are looking for can be found here and info can be shared confidentially with the Inofrmation Commissioner to lobby him NOT to ask him to investigate specific cases.
Thanks for your help.
Now my story is over, and the fat lady has finally sung, do what you want with my story.
Very strange reading this thread back now months later with the benefit of hindsight and knowing our final result. I also appear to have written my posts on this thread under 4 different names (oops!). But perhaps name-changing here on a support board shows the level of fear parents have when fighting their LAs.
I hope more people tell your their stories, IE. The only way we can stamp out some of these terrible practices is if parents individually stand up to be counted.
Thanks, I would urge others to help if you can. I know it can be stressful and God knows none of us have got the time. But just a brief summary might really help add weight to our campaign and it's not every day you get a firm of lawyers prepared to act for free!!
Bumping guys - we still need your help and your stories.
Here we go..asked the information dept to send me all papers held with EP, this was accepted and about 2 weeks ago the officer emailed she had the papers and would get it out to me the next day...she's now refusing to give me the papers by ignoring my emails/update requests, we have now gone over the 40days with no explanation so now I have that to sort that out upon everything else's...they really are shits.
Pity that they can't be ordered to provide this.
I am at tribunal shortly and,after months of saying that all paperwork was sent, I am now receiving things that were not released before .
This has only happened following court orders though and I am sorry to discover that I was right about certain things being hidden. It's a shame it has to be like that and that there are no consequences for the people that try to hide factual information or pretend that it doesn't exist.
It shouldn't have to be ordered...we have a right to know what information is held on us or our children. They get my sick, the lot of them.
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