New NHS SLT coming in tomorrow - consent to info sharing

[appropriatelyemployed]

OK, we had a massive battle with the LA and the local SLT team which do all their work last year.

This ended up in them meeting without us to discuss DS, filing reports without consent etc etc. Complaint with the Trust that manages the SLT service is finally being dealt with and they have apologised for breaches of the DPA.

We are now at a school over the county boundary. We still have the same LA dealing with the statement but the SLT has been farmed out to the SLT team in the county in which the school is in.

Already, this new SLT made an appointment to see DS tomorrow without telling me or asking for my consent. I rang her and she said she was 'happy for me to come along'.

I let it go at that as I think people don't always know the right way to do these things as the systems they work in deal so poorly and cavalierly regarding consent etc

However, I want to provide this SLT with a very specific and limited form of consent to information sharing tomorrow but I don't want to be too confrontational.

Any suggestions?

I was thinking of something like:

"Following our experience of persistent breaches of the Data Protection Act and confidentiality obligations in relation to DS as a patient of a X SLT service, we request that future information be shared with other agencies, including the Local Authority, only with our specific written consent. This information includes but is not limited to reports, verbal feedback, advice, and matters relating to the conduct and operation of the service as it relates to DS. This limitation contains the proviso that we are happy for information to be shared freely with school about the day to day operation of the programme.

Written parental consent must always be obtained to assess DS in any way.

We are happy to discuss this condition at any time if it is felt that it impedes the implementation of DS's SLT programme"

I dunno. Tbh I would just write. 'Dear SALT, it is our wish that any information concerning our DS is shared with us, his parents, to be forwarded to other agencies if requested and to never be shared directly. We also request at least a weeks notice for any assessment, observation or therapy and expect to be invited to attend'.

I wouldn't write it exacky like that, but your version came across as a little defensive. You don't have to explain yourself, nor highlight that you have been abused in the past.

Thanks. I see your point.

Here's another option apropriately trained.
Dear SALT, thank you for accepting my child's referral. PLease note that I don not give my permission for information about C to be shared with any other agencies such as X, Y etc. I'd be grateful if you could confirm tghis in writing to me by date. Please call me if you have any queries.
ie short, to the point, polite and with a invitation for further dialogue.

Just trying to cut down wriggle room and the fact that LA will say we are being difficult!

I will rephrase.

Oops appropriately employed, I got your name wrong!
Apols to you and appropriately trained.

What about:

In line with the requirements of the Data Protection Act and the legal obligations relating to patient confidentiality, we request that information about DX be shared with us, his parents, and with other agencies, including the Fuckwit Council, only with our written consent.

We also request at least a weeks notice for any assessment, observation or therapy and we expect to be invited to attend.

Btw I put the expecting to be invited to attend thing to our salt who then did her best ti accommodate thereby giving me very little cause to ever attend. So don't feel you'll have to.

I'm not suggesting you water down the importance of the issue, but despite these things being good practice, you know as well as I that these people are not used to working in that way, and the SALT may well not be used to being held to account in the way you want. So don't frighten her

And there is a possibility she it is her day for that school anyway and she is seeing lots of other children - this has been our experience of school SALT. Never turns up just to see DS.

Thanks. She has never been to this school before and no child there has speech and language therapy save for DS. She is a 'specialist' SLT apparently, from another area.

These practices are just to common and people are too cavalier about sharing information without consent. Sometimes it's not malicious but just because these practices have arisen and people get used to acting in a certain way.

I will tread lightly.

Know exactly where you are coming from. I now have a 2 pronged approach.

Stage 1: - A nicely worded note along the lines of Stars above.

Stage 2:- A face to face or telephone "chat".

I say I like to act as my DS's "key worker". If the SALT agrees to keep me in the loop, then I can keep her up to date on what other professionals workng with my son are up to, which makes her job easier as I know how busy she must be.

I blag a bit about how complex co-ordinating all the different professional agency strands is & say internal post systems etc can be soooo slow etc. I then say previous professionals have found it useful to be kept right up to date ; )

The chat is the friendly "honey" & to be fair most professionals respond well. I say my piece with a smile. If however they break the confidentiality rules later, I have a copy of the letter and the date/time of the chat to formally complain.

The only exception for us has been the OT, but everyone has had issues with her iykwim. Her report is the only one I haven't shared as it was 6 months late and not fit for purpose. (DS's name misspelt was a minor error). I'm wondering if a complaint to her professional registration body is likely to be more effective than the local PCT? (The LEA/school are already annoyed with her)

I drafted my form and gave it to her.

Interestingly, she said 'I wasn't going to ask for your consent as I assumed you'd given it as he has a statement'

Blimey!

And since when was it simply okay to assume consent?

If you had a proper home/school diary set up, you would have known about this and got immediate feedback following the visit.
I agree that if a one off visit to one child in one school, alerting parents appropriate ( I do this) but if it is seeing 20 kids in one day in one school like I do regulalry, if i contacted all the parents first, I'd never do any actual work and then peopel would be even more frustrated.

I am a SENCO and fight hard to get SALT apointments (SALT does seem to be the one service where provision is just so hard to get) and I would be fairly confused if I'd managed to get this new Specialist SALT into school to then find that the parent wasn't happy. I don't know all your back-story but presumably your DS has SALT needs and you would therefore want a SALT to work with him. In my LEA the SALT team works very closely with the LACAT team and the ASD team and have regularly meetings to discuss all their children in case one of the other professionals might be more suited to give support, or offer advice. Would you not want that to happen either? It just comes across as rather odd to me, and possibly to your new SENCO and SALT too.

I think it is appropriate to request this at the start of any new relationship.

When the person is seeing your child and why is essential information for any key worker/parent. It helps to evaluate whether is is a service that is helping the child. Why does the SENCO/LA have sole remit for this?

However, I agree that regular therapy, once set up, and relationship built, is probably, in most cases, fine to just get on with.

Moondog, I think you forget that sharing therapy notes with parents, or even contributing to home school books can take MONTHS if not terms to get set up despite regular requesting from a parent. If I had my time again, I'd insist on something much more time-consuming and settle with a home-school book as a compromise, - hopefully at their suggestion.

In my case, funnily enough, the SALT was pretty much okay to do whatever I wanted, it was the school that were trying to prevent the information flow

'Moondog, I think you forget that sharing therapy notes with parents, or even contributing to home school books can take MONTHS if not terms to get set up despite regular requesting from a parent.'

Yes and this is what riles me. It bloody well shouldn't. It's fundamental and takes about a couple of hours to sort out.

(I was in the same position myself years ago. Request for info. on what went on in 'specialist' unit met with panicky stare and ' Uh, uh, well, really? You're the first parent ever to have asked for this.'

Hello [hmmm]

Bugger

NappyShedSal

No you don't know my backstory so please don't judge or patronise.

Let me put it this way - no SENCO or anyone else has ever 'fought' to get SLT for my child. I achieved this through sheer persistence over years, with private reports, and with battles with the previous SLT team and DS's school who didn't understand why a child with Asperger's might need help with communication.

He wasn't causing school a problem by not communicating with him, so why go 'fighting' for help. I wonder how many silent, compliant children who don't bother their teacher you have fought for SLT for?

As strange as it is:

(i) SLTs don't always know what they're doing and often ASD teams are no better. Strangely, they often have little to do with the child directly and just pump out the same generic crap for everyone. Many think simply attending school is an intervention, whether it has any effect or not. Perhaps this is all very different in your area and all your statemented children have carefully planned and recorded interventions by expert professionals who work collaboratively to produce excellent and objectively measured outcomes? Sadly, this is not the experience of most of us on this board.

(ii) SLTs work on block service level agreements for the LA. They are often not interested in giving a child what he needs but doing what their local practice dictates - e.g. indirect (cheap) therapy. They forget the child - not you as SENCO, or the school or the LA - is their patient. You should not forget that either.

(iii) On challenging poor provision, and taking it to Tribunal, my experience was that my son's SLT (and her senior manager), school and the LA met to make up an intervention that my child had never had. That is, that they pretended he had had a functioning SLT programme for a year when they had only set one up six weeks ago. They produced a report directly to Tribunal about this.

I am happy for SLT and school to work together but if they produce reports, I have a RIGHT to see what they write about my son before they share that with others and it saddens me that you can't see that.

Moondog - I would also say that not all SLTs are honourable like you and have the best interests at heart.

Many, as you well know, want to do visits without the parents so they can produce a crap report which skims over problems and says nothing needs to be done.

I've never had a SENCO approach, let alone fight for a SALT for my DS.

His hour a week of direct therapy plus additional sessions was all my own doing 'despite' the school SENCO saying that it couldn't be done.

And she was a fairly good SENCO in many respects. I don't think she ever intended to be so ineffective. I suspect because in her eyes other children needed SALT more than my child did, and she was probably right. That doesn't negate my child's need however, nor excuse her.

I had a honourable SALT. She refused to update/change her report for the LA's benefit. So they found another SALT who had never seen my DS to 'update' her report to reduce recommendations.

This is why we have no trust in these services - wishing it wasn't so, doesn't make it so.

I think people get caught up in a system which incrementally becomes more about arse covering and job justification than doing what it is they are paid to do.