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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 24-May-13 21:42:30

Looking for feedback by 14th June if possible so we can get together a dossier of cases.,

MareeeyaDoloures Fri 24-May-13 22:00:20

The health and care professions council has fairly tight guidance already which is supplemented by that of various professional bodies eg nursing and midwifery council, incredibly detailed stuff by the the general medical council, college of occupational therapists

MareeeyaDoloures Fri 24-May-13 22:05:27

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.

inappropriatelyemployed Fri 24-May-13 22:35:42

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

MareeeyaDoloures Sat 25-May-13 09:27:39

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>

inappropriatelyemployed Sat 25-May-13 09:47:56

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.

inappropriatelyemployed Sat 25-May-13 09:50:59

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.

inappropriatelyemployed Sat 25-May-13 10:09:10

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.

MareeeyaDoloures Sat 25-May-13 14:30:35

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.

MareeeyaDoloures Sat 25-May-13 14:39:02

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

MareeeyaDoloures Sat 25-May-13 14:41:48

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?

rosielou678 Sat 25-May-13 20:21:53

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.

inappropriatelyemployed Mon 03-Jun-13 13:22:59

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.

inappropriatelyemployed Fri 07-Jun-13 21:48:15

Bumping for your help buddies!

inappropriatelyemployed Mon 10-Jun-13 18:34:42

Bumping - any chance of getting this pinned?

inappropriatelyemployed Wed 12-Jun-13 08:52:47

Bumping as it hasn't been pinned.

inappropriatelyemployed Wed 12-Jun-13 15:43:05

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

inappropriatelyemployed Thu 13-Jun-13 17:59:50

bump - I have asked MN to pin this. Do me a favour and ask too so I don't have to keep bumping!

MumuDeLulu Thu 13-Jun-13 18:17:24

Trouble is, everyone who ought to complain is too afraid to.

RowanMumsnet (MNHQ) Thu 13-Jun-13 19:29:55

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).

rosielou678 Thu 13-Jun-13 19:36:35

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.

MumuDeLulu Thu 13-Jun-13 19:40:01


<whispers furiously>

MumuDeLulu Thu 13-Jun-13 19:40:35

<passes notes at the back of class>

inappropriatelyemployed Thu 13-Jun-13 22:51:54

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,

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