I've (being Moondog) come to the conclusion that the best thing you can do for your children with SN is to involve as few people as possible...

[moondog]

because honestly, the communication problems lie with service providers, not the kids. Peopel are useless at sharing info. properly and come to the table with so many conflicting opinions and ideas that it is dreadful for the parents.

I've got one child with about 16 people involved.

Get rid of most of them and stick with the people you trust.

We have about 16, and it seems to work OK. Depends how good your keyworker is! Ours is fantastic, totally dedicated, and makes sure everyone knows what everyone else is doing. That's cos it's me . But I know I am also incredibly lucky with where we live, the services available to us, and the fact that most of DD's 'people' are based in the same building.

Oh well, that's good to hear and yes, if you've got a parent willing to take on that role it's fab.
A lot of peopel arent' though.

I regularl see copies of letters in which people are recommended to do things completely differnent to what I have recommended.Irrespective of who is right, this inconsistency cancels out any benefits.

I've long thought, Moondog, that we need a central centre (or several across the country) where parents can go for a defintive treatment plan and thorough dx of child.To much is left to internet searches by parents. They are fantastic at this because of their passion. But it is so time consuming and frustrating.

I thought that just today. Have some urgent queries over an ASD SENCO report I've received today and nobody to ask (eventually emailed the SENCO who I don't think I'm really supposed to contact directly). I would love just one key contact who can liaise with everyone else. Hopefully our new SALT will be as good as she sounds, and help me decipher all the jargon in the report.

Same as Arabica - it only works for us because I coordinate everyone! We don't have quite as many people involved though - only 9.

That's what keyworkers are supposed to do--it's a good system (in theory) but things get very complex when there are lots of people in different places. The only real communications hiccup we had was between Gt Ormond Street's ENT and audiology depts and our usual audiology department. They may have been hearing specialists but they never listened to each other!

I was too much of a control freak to let anyone else be DD's keyworker. Our portage worker helps a fair bit too, coordinating appointments etc when we have clashes and i can't raise the relevant clerk on the phone.

Beacaue of my own (appalling) experiences as a parent, it is really making me rethink how I work.

I've increasingly taken on the role of smartarse co-ordinator in multi-disc. meetings and particulalry enjoy picking out someone to take minutes.

My advice is to trust noonoe and never let your guard down.If there is an important letter or document, don't assume others will circulate it.If you want it read, do it yourself.

If you need to write an important letter, send it to everyone.

For years they have been banging on about every child having a single co-ordinator who would sort out all the different people involved and be a single point of contact.

If it happens I'll munch my entire hat wardrobe.

I'm very good at ccing everyone and their cats.

A single co-ordinator would be fab.

potage used to organise a huge meeting twice a year, getting everyone involved actually sat in the room together to discuss what to do - saved an awful lot of time and paper.

But since Portage stopped (because we started ABA ) no-one else has bothered.

Will have to see how many people we have involved once we've moved...

well my ds's salt is our multi-disc co-ordinator, but we are lucky then? to have a multi-disc team in our area, who all liaise 'cept clinical psych who don't meet with everyone else for some strange reason... but salt still keeps in touch with them... she is a good person, who has little contact with my ds really now, but salt is my point of contact, arranges meetings and talks to me about what is going on.

local early years service were meant to be the umbrella body for us. I found them as much use as a chocolate teapot - when we moved house it took them months to move Ds's file to the correct section of their office , and as for their "advice" on schooling, least said the better .

Oh, and when yuo sit in a meeting with millins of people involved, start by circualting a piece of paper and asking everyone to put their name, address and e mail on it.

We have a thing called a "Team around the child co-ordinator". She rocks. Because I am in the same mental space as Arabica I think she finds us a bit frustrating [teehee] but when I really need something she is invaluable. Knows everyone. Knows who is responsible for what. Seriously prods buttock.

I tend to go the other way - involve everybody and never turn down a meeting/appointment/referral. Because OK it will probably be a waste of time ... but that person will mention another name or service, and you get passed on to them, who in turn will mention someone else and suddenly you end up on the books of someone useful who would not know you existed (and vice versa) if you hadn't put up with the occasional muppet on the way.

This CAF thing with the lead professional role was supposed to be the ideal solution. But was revealed to actually be bollocks and just be yet another form to add to all the forms. Child in Need meetings are a joke in terms of anything actually happening, but it's the one time everyone gets together.

J has school, OT, SALT, social worker, play worker, ed psych, CAMHS consultant, LEA SEN officer, behaviour support teacher, autism outreach person, Inclusion person and now finally an autism worker who's supposed to bridge the gap between services.

She actually seems very good but overworked. Out of the others, some are good, some not so good, but they do all come to the reviews/ meetings which means it takes ages but everyone knows what's going on. If they can't attend, the minutes are available.

Most of those people work in the same bulding here too, which isn't great for confidentiality as they all talk to each other (sometimes before they talk to me e.g. "oh yes, X told me that Y said that J will now be able to have Z' , but I guess at least they're all in the loop.

It doesn complicate things having so many involved, but better than having no-one.

Y'see Giveme, that seems to be excessive to me.

And I think what can happen is that the meetings nad minutes and liaising can take precedence over getting on and actually doing some bloody work with the child.

Yes, true. I actually think he gets the wrong type of support rather than not enough though, so these meetings are a good way to get people to commit to doing the right type of work. And with so many people, someone always knows the right answer to a question, or at least has a possible solution.

Lalck of co-ordination drives me mad. E.g. how silly is it when the SALT, the Autism Specialist Teacher and the OT all tip up to see DS3 on the same afternoon? Wouldn't it be better if just one of them came at a time?

And why oh why does no-one ever share and read his notes? Every new person who gets involved, DH or I have to spend the best part of the first session telling them about DS3. All this information is already on file. Drives us mad. I am a professional; i would never turn up to a meeting not having read the papers. Why don't these professionals do the same?

so true, I've lost count of how many times I have told the same things to different people, who all write them down, and produce a report, which no-one else reads...

Ah yes!!
The report that noone reads!
Am very familiar with that!!

I just start any meeting (or phone call, if they have got in touch to introduce themselves) with anyone new by saying, 'are you familiar with DD's background? If you aren't, may I recommend you read this,' and point them at the most helpful recent report, a copy of which I usually bring with me, with relevant parts highlighted in the same colour pink as the folder where I have meticulously filed all DD's reports.

I'm not sure if they respect me or just think I have a screw loose/need to get a life--or indeed, all three!

BTW, I am in no way at all organised in any other area of my life (says she who just made a loaf of bread without replacing the detachable mixing blade, and therefore has one soggy mess).

Arabica - you sound just like me only DSs folder is blue!

Yeah, I always carry around the report from the neuropaediatrician when I go to see anyone else. We got referred to child psych and it was so obvious he hadn't read the notes because half way through the meeting he noticed that she was already seeing a neuropaediatrician so he asked why we'd gone to see him...even though I'd already explained in detail the week before to a social worker that we were going to see him to try and get some social skills stuff set up. Now they want to do a full psych assessment that I don't think is necessary but I have to smile sweetly and play along just so we can get them to agree that she needs social skills / group therapy. So, I have half way to Paris, for four ?>@£ appointments, get DH to look after DS (like he hasn't got better things to do, like work!) just so they can probably turn round and agree with the neuropediatrician. Ho Hum, maybe the psych can do something useful like tell me how to finish toilet training her!!