Here some suggested organisations that offer expert advice on SN.

'We don't like to diagnose / label anymore'

(102 Posts)
2boysnamedR Wed 26-Jun-13 06:44:03

Sorry me again! Been at this game for years but having the toughest month of my life. I am being told that if my ds has dyspraxia or asd then they don't diagnose these any more. Only a MRI would reveal dyspraxic brain function ( not his symptoms maybe?) is this true?

Why is this so bloody hard? Why is no one on our side?

babiki Wed 26-Jun-13 07:37:11

Nonsense (took me a while to find non sweary word). All of it. Is there any dyspraxia charity who could advice?

My ds is severly dyspraxic but he in his case it falls under the GDD label - however he had MRI done with no findings.

You can look up NICE guidelines for diagnosing dyspraxia and send it to whoever told you this.

Or go private...

FanjoForTheMammaries Wed 26-Jun-13 07:41:16

Who is telling you this pile of poop?

mrsbaffled Wed 26-Jun-13 07:46:53

What?! I don't think a scan will tell you anything tbh....

We have been told they don't always give a dx, so I am concerned we will have gone through this difficult process for two years and come away with nothing.

KeepCalmGoCrabbing Wed 26-Jun-13 07:51:47

An OT diagnosed my son's dyspraxia. He's never had a MRI.

Ineedmorepatience Wed 26-Jun-13 08:23:45

They are just trying to save money!! If they dont diagnose they dont have to provide services angry and sad

2boysnamedR Wed 26-Jun-13 09:17:27

SENCO at school told me this and that we will never get a statement. My OT said she can not give any diagnosis as she isn't qualified. This all does up what I said to my HV as what is point of having these services. I think I need to presume that everyone is my enemy and they are all liers

KeepCalmGoCrabbing Wed 26-Jun-13 09:31:45

I think I need to presume that everyone is my enemy and they are all liers

Sadly, yes - this is the case for so many 'professionals' in the SEN area. Although the worst are the SEN pen-pushers at County level, who have probably never met a SEN child in their entire life!

2boysnamedR Wed 26-Jun-13 09:39:40

I think I also need to use these kind of statements as evidence for official complaints. Who am I to say ot can not diagnose? I was told my son needs a 21 month delay to get a statement in Surrey. But another mum has a statement at 2.5 years for a walking talking child ( I don't know many five month olds who walk and talk so I guess he isn't 21 months delayed?)

moondog Wed 26-Jun-13 09:55:25

Leaving aside issue of importance of 'label' for a statement, it is important to remember a label is often just a posh way of describing a set of difficulties.

Dyspraxia-general difficulties with movement and co-ordination
Dyslexia-ditto with reading
Dyscalculia-ditto with maths

The danger is that the label becomes an end in itself.
'This kid has x, y or z, thus I cannot change that.'

Someone recently told me with great confidence that a child had dyslexia. Very same person was making no great effort to teach the child to read.
Why? Because she was dyslexic of course!


Kiriwawa Wed 26-Jun-13 09:59:55

OTs do not and will not diagnose (as in give a DX). However, they can and will identify specific difficulties. AFAIK nly a paediatrician or a edu psych can make a DX.

Has your DS been referred to CAMHS?

Statements are not to do with whether or not you can walk and talk - have a look at the ipsea website which dispels some common myths. It's certainly true that many LEAs try and avoid statementing because they cost money.

In response to the OP, tell them it isn't about THEM and blanket policies are illegal and discriminatory.

2boysnamedR Wed 26-Jun-13 10:30:57

Kiri - I hadnt been aware of camhs until you mentioned it.

I have dyslexia and a degree and a corporate job so I know what it's like to be told 'you will never....' Then rub someone's nose in it as 'I did' still my life was harder for it, I felt ( and still do) felt weaker because of it. My informal diagnosis was at 17. I don't want this for my child. Too right it made me a fighter but at a cost.

Kiriwawa Wed 26-Jun-13 10:50:29

I wish there were a guide to the whole thing - it's like feeling your way in the dark with enormous obstacles every step of the way sad

ouryve Wed 26-Jun-13 10:55:51

Stuff and nonsense!

Though for a firm diagnosis of anything, you need to go via CAMHS or a paediatrician, depending on how services are organised in your area. They should then look at all the evidence from all professionals involved.

And dyspraxia has numerous causes. Often it's down to hypermobile joints having poor proprioception because ligaments are too stretchy and your brain isn't getting the proper feedback that tells it exactly where your hands and feet are etc.

crazeelaydee Wed 26-Jun-13 11:03:40

For the love of god! is there anything that anybody should do actually being done?!

EP told me if my Ds continues to struggle the next step would be a statement....but it's highly unlikely due to being cognitively able....ok so we'll just let him struggle then! confused
The school are just letting him spend 4 lessons staring at the same page of work because he has had tests to show he is 'able' so he just CBA.

moondog that is true. The S&L department can't help my Ds because he has a Dx of AS so all his communication difficulties are a part of that....After a very heated discussion with the Head of the department. I have managed to get an appointment but chances are he will get discharged again after they have told me same again.....doc martins will be coming out that day for sure.

Every counties departments work so differently, you never know where to turn. I read that the paediatrician in our area Dx's dyspraxia then when we went to the appointment she referred to OT because there could sometimes be an overlap of the symptoms of AS and I'm guessing it will be the OT then?? confused.

Your right 2boys it is hard work and by the sounds of it I have only just started a journey you have been on for a while.

2boysnamedR Wed 26-Jun-13 11:05:00

Ouryve - that's sounds like my son from what the OT says.

Kiri It's like being on a boat without ores hoping luck shines on you and the wind blows you onto a nice beach - not over a 100ft waterfall - which is what see loaning my horizon!

2boysnamedR Wed 26-Jun-13 11:05:39

Or looming on my horizon even

moondog Wed 26-Jun-13 11:10:16

'The S&L department can't help my Ds because he has a Dx of AS so all his communication difficulties are a part of that....'

I find this genuinely perplexing.
Many people have symptoms which are because of an underlying cause.
I don't like to get to medical with S&L but to use an analogy, do you not deal with the pain felt by a cancer sufferer because 'it's part of the cancer'?
Not give someone with a broken leg a crutch because 'it's part of having a broken leg'
Not give a myopic a pair of glasses because 'it's part of being myopic'
Not give a person with diabetes insulin 'because it's part of being diabetic.'

The skewed logic of it is utterly bizarre. it would be better if people just said 'I'm sorry but we don't think we can help with this issue' than come up with these surreal excuses.

Kiriwawa Wed 26-Jun-13 11:30:55

I'm looking forward to my meeting with the SENCO tomorrow (who hasn't met my eyes since she admitted she hadn't read the report with recommendations from the OT which she'd had for over a week).

It feels like the people who are being paid to care, simply don't

2boysnamedR Wed 26-Jun-13 11:34:14

Crazee yes I been fighting the long fight for a longtime. Tbh people don't want you on their budget hence 'it's not my area' or 'not from my budget' still someone has to pay or we are setting our kids up for failure and the doss house and surely someone pays then? How do these people justify their jobs? Sounds like its it's paper pushing with no purpose to me

2boysnamedR Wed 26-Jun-13 11:37:02

I wish the standard line was ( forgive me being crude) 'life is shit then you die' because at least then I could give up my futile fight to get my son a basic level of care rather than fighting tooth and nail for something I will never get. At least then it would be clear where we are going

expectingtoomuch Wed 26-Jun-13 11:42:15

My dd has had what resulted in a normal MRI brain scan because consultant had not seen a girl with dyspraxia and Spd before, came back fine, pediatrician then diagnosed the above.

FanjoForTheMammaries Wed 26-Jun-13 11:46:26

My DD had a normal MRI.

She is nearly 7 and has trouble feeding herself with a spoon.

expectingtoomuch Wed 26-Jun-13 11:51:14

We went looking round a secondary last year when dd was in year 5.
Spoke to sen and asked her what they could do for dd and how they would meet her needs.

She showed me all this wonderful stuff to teach children to read, as basic as dog/cat and such.
DD has a reading age of 13 as she has developed her own methods.
She is however working at level 1 for literacy otherwise.
Senco said "oh she can read? She would manage fine in normal class then" so basically in a class of 30 plus, no ta and no help.

Davros Wed 26-Jun-13 14:17:18

The scary thing is when they are not liars but genuinely believe the crap misinformation they are passing on

mrslaughan Wed 26-Jun-13 14:26:53

An OT and physio diagnosed DS Dyspraxia.......

Dyspraxia is so much more than general difficulties with movement and co-ordination....sorry just have to point this out as DS has fine motor dyspraxia, but school won't accept it as he is not really clumsy.
the dyspraxia foundation had a great fact sheet on there Facebook page a few weeks ago, but can't find it now

mrslaughan Wed 26-Jun-13 14:28:40

the stuff our senco comes out with - well......
but she is well intentioned, just ......I don't know ignorant?, not bright enough to get her head around all of it? I really don't know., but I find it scary.

TOWIELA Wed 26-Jun-13 15:23:21

Kiriwawa - my DC's OT did diagnose dyspraxia (in fact, 2 indie OTs 3 years apart both made the same dx). It has never been questioned and the LA have totally accepted both OTs' dxs.

bochead Wed 26-Jun-13 16:27:10

OP -email your advisor, asking them to confirm that they don't diagnose or label. When they confirm forward it to their boss and the relevant professional body.

How can you support or help someone if you don't first define the problem? We are in a recession and if people don't want to, or aren't competent enough to do their jobs, then it's time to replace them with people that will.

bialystockandbloom Wed 26-Jun-13 17:09:35

OP what a total bunch of crock the SENCO is giving you angry

You know you don't need her to apply for a statement? (Applying for statutory Assessment is the first step.)

Sorry, I don't know your full story, but have you been to GP? Been referred to paediatrician?

Btw there is a book The Velvet Bulldozer on amazon written by a parent, which guides you through the SEN system.

2boysnamedR Wed 26-Jun-13 19:17:34

Thanks for the help.

I could on and on about my sons backstory. He was late to walk, tripped over his feet, one leg he would not bend, he just flipped it forward while bending the other with his foot turned inwards. He then fell over his feet. Fight number 1) get him to see a expert ( podiatrist) not the GPS job, ask hv, not her job, ask the gp. Go round that loop a few more times then get a referral from the hv I asked 10 loops back. Then everything else came late. First words at 18 months but one word a month which over the next two years increased at the amazing rate of 2 words max a month. Told by hv, they are all different, don't comparing to sibling ( or any child his age). Beg for salt, get ignored twenty times, get a referral, wait a year then lose rag one day and phone to be told they were just about to write for appointment in three days ( bollocks where they) et told he is behind, bye bye see you in six months. Get pissed off kick up a stink to get app with community paed. She says oh dear, come back in six months. Do that for two years while they wait for him to do the magic 'they all catch up by the time the get to school'. Son reaches school - oh shit! He didn't catch up! Panic time. Get referral to or for marked hypermobility. School take note of my concerns and then ignore them. Complain to head. Gets iep And school action plus 24 hours later! Then fast forward a few months to this month. See senco and teacher who tell me my son is failing. He never up with his peers he will never be normal, speech is major issue but also he can not process information and retrieve it (OT and salt confirm this) he has memory and sensory issues. Plus lot more symtoms. Salt say no statement = no help. The volcano of frustration in me explodes, I make a formal complaint to the nhs and here I am today, confused, angry, upset, devastated but mainly mad and out to get my son a diagnosis and statement if I can so he starts to get help rather than 'that's not good, come back in six months' until he is 16 and they can sign him off

2boysnamedR Wed 26-Jun-13 19:19:11

Who do I email saying they do not diagnose? OT? Paed? Still not sure who should diagnose - sorry its so confusing

2boysnamedR Wed 26-Jun-13 19:25:23

He is 5.5 now, only eats five foods, will not wear trousers on his hips as they hurt him so they fall down and he constantly exposes himself, he can dress but gets it all wrong, can't use cutlery ( not that he would eat anything that needs cutting up) he can not get the concept of he / she however much we reinforce it. Calls objects thingies as he can't word find, has little awareness of his safety ie cars road. Is very shy, does not talk to adults, complains people are pushing when really they are just brushing past him. Can be violent but only with his siblings. And he talks gibberish, I can't understand him. He has good points too ;0)

2boysnamedR Wed 26-Jun-13 19:27:00

But mil insists he is 'perfectly normal' so who am I to say the above isn't the norm? After a whole year if school he can count to ten so I do count my blessings

2boysnamedR Wed 26-Jun-13 19:30:43

I have a 15 month old who doesn't walk, talk, clap, point or raise hands to be picked up or wave just like the older boy - but guess what? They all catch up in the end, I shouldn't compare them. He will catch up by five! Thank goodness for that good news! I will wake up on his fifth birthday and he too will be ok

2boysnamedR Wed 26-Jun-13 19:33:40

My eldest is in the top group for maths English etc and has a very high intelligence so of course I have too high expectations from the younger boys. Only gifted children have more than ten words at three I presume? Who am I say what is not the norm?

mrslaughan Wed 26-Jun-13 19:36:13

There are other more experienced posters here.... We went private , because we could.
But I would have thought you want formal assessment from Ed psych (processing issues), SALT (language issues) and OT ( co-ordination/physical/sensory issues). This would ideally be co-ordinated by developmental pead.

Do you know about working memory? This would explain the recall - it doesn't mean they can't learn, it just makes recalling info slower for them. But also there are lots you can do to develop working memory, there are great computer games that help this....

2boysnamedR Wed 26-Jun-13 19:50:11

I could go private but as far as I have been told, private will be ignored / discounted by Surrey so it would be for my peace of mind.

Any specific games you can think of?

TOWIELA Wed 26-Jun-13 20:05:22

After my DC was refused SA, for the Appeal we went private for SALT, OT, and EP. By the time we got to two weeks before Tribunal, the LA had to concede because the reports provided overwhelming evidence.

In some respects (morally wrong tho), if you get a refusal to assess (so have to Appeal and get private reports), you go to being a position of strength. This is because the LA have said that your DC doesn't need to be assessed, so they can't do any of their own reports without getting an order from a Tribunal. So it'll be hard for them to dispute any independent reports and may have to reconsider their refusal to assess before Tribunal because they won't have any (recent) reports to counter-act against your indie reports (this is what happened in my DC's case)

If the Tribunal says 'yes' the LA must be allowed to do reports before Tribunal, then you will still have the private reports which may or may not agree with the LAs reports.

I hope this makes sense!

mrslaughan Wed 26-Jun-13 20:11:35

We did cogmed, but your son may be a little young for it..... Well actually I think there is a "younger" version. If is about £550 pounds - which is 6 week intensive then 100 more sessions spread over the year..... The hard thing, is I think when you spend that sort of money you want to know its the right thing - it was recommended for Ds by the Ed psyche, but there are cheaper options..... But not as rigorously scientific with there approach , jungle something .... Wait I will look it up.

The advice we got was it would take years to get our son anywhere close to diagnosis - as he was not "bad enough", and he would never get publicly funded oT, again because he is not "bad enough" - so we fund his OT privately - which is a struggle at times. But the results have been amazing.

mrslaughan Wed 26-Jun-13 20:14:31

Jungle memory grin

moondog Wed 26-Jun-13 20:25:45

Jungle Memory is ace. It's not going to vanish away your problems but my kids do it every night (only takes about 10 minutes) and I have seen vast improvements in their working memory. It's fun too.

2boysnamedR Wed 26-Jun-13 20:42:16

Towiela did they have to listen to your private reports for the appeal? I bet that differs by county.

This is like a test - or a marathon! Only those with most stamina will get over the finish line!

2boysnamedR Wed 26-Jun-13 20:44:02

My friend has a son with autisum. She didn't get a statement - I am beginning to see why. So sad as her dd also has symptoms now at four she can't talk. Talk about a failed system.

2boysnamedR Wed 26-Jun-13 20:47:48

With tribunal are we talking taking LA to court? I don't think I have that kind of strength / money

FanjoForTheMammaries Wed 26-Jun-13 20:55:49

Serious question..does jungle memory work for adults?

I got nasty bang on head 4 years ago and sice then memory is not what it was.

TOWIELA Wed 26-Jun-13 20:56:50

2boys - yes it is a marathon.

Tbh once you get to Tribunal, taking on board indie reports (as per my earlier post) isn't different county by county because the full force of the judicial system will now be in play. It's not about illegal LAs policies once you set the proper legal ball rolling.

Yes Tribunal = Court. The LA will rely on the hope that you will cave in before Tribunal. But there are so many wonderful people on this board who have done it and will help you through the process.

FanjoForTheMammaries Wed 26-Jun-13 20:57:25

2boys..been there with the catching up...was told DD would suddenly catch up at 4. hmm

mrslaughan Wed 26-Jun-13 21:24:02

I can't see why it wouldn't work for adults..... (jungle memory that is). I also know cogmed does an adult version as my working memory can be atrocious ( hopeless with names) and would love to do it - but all spare money is spent on DS.....

2boysnamedR Wed 26-Jun-13 21:54:29

Towiela does court = money or can I go without a professional representing me? Without me paying for the court fees if I loose? Cricky this this a scary minefield! I guess we will all be doing this for any kind of care soon with all these cuts.

TOWIELA Wed 26-Jun-13 22:01:05

2boys - I'm not the best person to ask about court = money cos mine has been mega mega bucks (think of a number, double it and then add on a few zeros). For various reasons I decided to do it with full legal representation (solicitor & barrister) and we've been going full pelt for 18 months.

It's a tribunal not a court. I'd say that the very least you will need is an independent witness. That will be the cost of an assessment/observation and then their attendance on the day.

Tribunal savvy witnesses aren't cheap, however if you are entitled to legal aid most will accept that.

The independent witness you choose will depend on your case but it is USUALLY an EP.

Then you increase your chances from there with other witnesses and legal representation. It also depends on the LA you are up against and whether they themselves are bringing in a barrister/dirty tactician.

If you lose you don't pay anything except for your own costs. If you win you aren't awarded costs.

2boysnamedR Wed 26-Jun-13 22:28:12

Good on you! I exchange on a house Friday so I can't think about mega bucks. I can think about not drowning at this point. One step at a time. If a ask for a statement, appeal then fail is it like a driving test - you wait a bit then try again?

Yes. Once you have done it once you are no longer afraid of it.

Angry, stressed perhaps but the fear isn't there. You know what you have to do and you get on and do it.

2boysnamedR Wed 26-Jun-13 22:32:11

Hmm - seriously considering taking a degree in salt. Would be easier and quicker than this poop

TOWIELA Wed 26-Jun-13 22:42:02

The trouble is, everyone say it's not a court (and I fully understand all the official lines about why it's not called 'court'). But there's "evidence", "evidence deadlines", "witnesses", a "judge", an "appellant" (ie you), a "Respondent" (the LA) and you have "barristers". So it looks like a court, tastes like a court. But, no, no, it's a.... Tri-BU-nal! [Said in my best Stephen Fry accent]

Tbh, I don't tell any of my RL friends I'm going to Tribunal, cos they really wouldn't have a clue. So I say that we are going to court. Makes explanations to people who have never been in this position a little bit easier hmm

moondog Wed 26-Jun-13 22:48:59

JM would be helpful to adults. I have a go sometimes and by now my kids are better than me!
It's to do with working memory, which seems to be about holding several different pieces of information in your brain short term and then applying them to work together.
JM not very expensive. I have been very impressed.

2boys, you can apply for statutory assessment for a statement yourself. In fact it's generally better not to wait for the school to do so as you currently get better appeal rights than the school does. The IPSEA website has standard letters you can copy. Many LAs seem to refuse to assess as a first hurdle to try to put parents off and save them money. Determined parents appeal, sometimes the LA caves and assesses. If they don't cave, you need to get back on here and ask for advice. Many posters have experience. Good luck.

PipinJo Thu 27-Jun-13 00:01:08

Diagnosis=costs that is the bottom line!

Ask them where in the NICE guidelines and DSM criteria an MRI scan only proves it!?? and watch the person shock ...grin wink

I was told by OT No 1 ds didn't have ASD because he didn't like Thomas the Tank hmm

Hate it when they talk beetlejuice!

FanjoForTheMammaries Thu 27-Jun-13 02:44:36

Thanks, I will take a look smile

2dogs I hope you get the answers and support you need for your DS soon

FanjoForTheMammaries Thu 27-Jun-13 02:45:27

Sorry..2boys not can tell DD has me up in middle of night

2boysnamedR Thu 27-Jun-13 09:30:17

Thank you everyone. I was awake till 2am talking to mate who is a reception teacher. Ds iep has six targets, set in spring, no review as of yet. Three weeks to get one. I emailed the school today cc'ing the world in ( as my hv says nhs and ed will not communicate so its my civil duty) have a letter from school now he does not preform with the level of his peers. Pointed out to school that he was born in oct so should be performing with his April born peers. Asked how they asses his vocab age. Also said this therefore can not tie up with salt saying he is six months delayed and can the school back this with evidence. I hope I have them by the balls now. Conflicting evidence from salt and the school and a crappy iep. I guess that means the school are not meeting his needs? In a way I hope he fails two points on his iep as next level of intervention is a statement if intervention is failing him. This system is a crock of shit

Trigglesx Thu 27-Jun-13 10:22:42

2boys Just a note, in case you are not already doing so, put EVERYTHING in writing - even if you have a phone conversation, put the main/important points of the conversation in a letter and send it to them, saying "just to confirm the points of our telephone conversation of Tuesday, 25th July at 2:15pm..." If they tell you anything, request it in writing - especially this "won't diagnose" nonsense as well as "won't get a statement." The minute you start putting everything (and requesting everything) in writing, it puts them on notice that you're going to be pushing this much harder - sometimes that alone gets results.

For those that have said they were told if the child was not behind or if they were ahead, they would not get statements - that is complete and utter bollocks. DS2 is a 6yo, reading at the level of a 15yo, and he has a statement and attends a SS. He is also well ahead in maths. We fought for a couple years to get the GPs at our surgery to understand and listen that it was obvious he had developmental problems and were put off constantly. We got lucky when he went to reception as he went to a local school that is brilliant with children with SNs - within 3 days of him being in school, we'd had a meeting with the SENCO, organised a referral through school nurse to paediatrician, as well as SALT and OT. This same school pushed immediately for a statement for him as well as (when we were ready for the changeover) helping us to secure him a place in a special school at Yr2.

What saddens (and angers) me the most is that my experience with having such a supportive school should be the NORM, not the exception. sad

bjkmummy Thu 27-Jun-13 11:19:07

i agree - a supportive school can make all the difference. i would deffo apply yourself for a statement. do not worry about if its refused and appeals etc - that could be a while off yet and they may agree to assess. tribunal sounds scary but we all have been where you are and through support and advice on here got to the other side. i was terrified of tribunal but now looking back it was okay. the LA hope parents dont go through with it. i represented myself - i actually said very little as the case so strong so it was the LA and their witnesses who got the grilling. most LA witnesses dont want to be there either as they are forced to go by the LA. everyone on here held my hand through it all and we won.

2boysnamedR Thu 27-Jun-13 11:40:33

If term ends in four weeks for the summer is this a good a time as any to request my assessment? The school can't gather evidence without my son and therefore a case against me anyway. So I guess if when I do my assessment request I can state 'on the 25th of June when me and dh met with senco and was told we would never get a statement or diagnosis we are going ahead anyway' then I have it in writing they said it and my dh was there?

Kiriwawa Thu 27-Jun-13 11:55:59

I'm right there alongside you 2boys - I'm going to speak to the senco this afternoon about a statement and see if the school will back me up

2boysnamedR Thu 27-Jun-13 12:18:46

Kiri - masses of luck to you. Remember this a marathon not a sprint. They are hoping you will burn out before the finish line. Turn your frustration and upset into anger but then Chanel that anger to fuel you on. I have enough fuel to get to the moon now. Good luck, kick butt

Kiriwawa Thu 27-Jun-13 12:50:39

Thanks 2boys - I'm borrowing some of your anger because I need to fuel the fight.


2boysnamedR Thu 27-Jun-13 12:53:26

Let us know how it goes

ilikemysleep Thu 27-Jun-13 13:29:29

I am trying to keep my professional head on here to the barest minimum, but I wonder if there is some confusion on the senco's part. As in, she is talking rubbish, not actually correctly infomed herself of local policies. She doesn't have any power to diagnose or, probably, make a referral to those that do, and saying dyspraxia is only diagnosed by mri is totally wrong. You nearly always need to see a medical person to be referred to diagnostic team, might be school doctor, school nurse, community pead or gp dependung on your area. Is she definitely not saying that she doesn't have to wait for a diagnosis before offering support? That would be true!

Can I also add, diagnosing doesn't equal spending money. Diagnosis is by the NHS and spending money to support kids is by the LA and at the minute those are totally separate bodies. There is no implication for the NHS in fundung terms if they diagnose your child, or any financial reason why they would not. I appreciate that many people have a crappy service and a big fight trying to get support for their sen kids, but this particular rumour is not true. The LA I work in has no clue at all which children have been referred to asd diagnostic team, the first they hear is when/ if parents give permission for LA to get a copy of the diagnostic report at the end of the diagnostic process. As the two agencies are separate there is no reason for the local authority to be involved in the process There is absolutely no influence at all of the LA on the team, unless the child has already seen an ep and the parent gives permission for the diagnostic team to have a copy of any ep report.

Also hate to disagree over jungle memory and cogmed but whilst both have impressive results for kids getting better at the tasks within the programmes, a recent independent study found very little generalisation into general working memory improvement, unfortunately.

Ds' multidisciplinary assessment for autism consisted of his SALT (who worked in a school unit), the SENCo of his school, the EP, the SN HV and the Paed, and an additional ASD SALT and the Autism Advisory Teacher came in after the testing and before we got the results to help put together a plan of next steps (which was a pretty meaningless list of woolly stuff).

So there was a huge cross of NHS/LA boundaries.

bochead Thu 27-Jun-13 13:48:00

DS's last SALT report went to the monkey, the monkey's dog, but wasn't sent to me. Any idea why that might be if they are so separate?

My requests for assessment have always been "run by" the school first and their opinion has always carried greater weight than mine in the decision by the NHS whether or not to assess. It's one of the key factors why DS wan't diagnosed till he was 8, despite my first formal request going in at 3.

ilikemysleep Thu 27-Jun-13 14:00:58

Starlight, knew someone would bring that particular case out. Even so there is no suggestion of the la being invloved in the original diagnosis, they very wrongly pressured the psych after the fact. Which is way out of line, but doesn't mean I am lying.

Look, if you want to think I am totally wacked and that the local authority is informed in advance of every child sent to CAMHS in order that they can spend time and effort in every case making sure no diagnosis is forthcoming, you go ahead and believe that.

I don't think that ilike. I don't think there is any consistency either way.

But if a parent has 'caused trouble' with the LA before dx because dx waiting lists are very long and some LA's refuse to do anything until dx, then it is very likely that the NHS and LA will have corresponded, or that the parent will have tried to get one to talk to the other in the belief that it can help move things forward.

If so, there is at least the 'potential' to club together and influence the behaviour of each other no!? And if the parent is a pain, then possibly not in the most helpful way.

moondog Thu 27-Jun-13 15:15:48

Ilike, have you a reference to the Jungle Memory research?
I haven't used it professionally and wouldn't as I can't find any evidence of its benefit, but with a sample of 2, it has been fun, useful and not cost too much. grin

I'd back you up with your points.
I know many MNers have had jawdroppingly appalling experiences, but there is not the mass conspiracy afoot that people think there is. For one thing, people don't have the time to plot in this way.
There are also many many good people out there doing their best. I work with an LEA which cannot be faulted for its commitment to SEN and its relentless drive to make things better, above and beyond their legal obligations.

TOWIELA Thu 27-Jun-13 15:26:22

DS's last SALT report went to the monkey, the monkey's dog, but wasn't sent to me. Any idea why that might be if they are so separate?

Agree with bochead here! My son's NHS SALT report went to EVERYONE but myself. When I asked the therapist for the report (when she was doing some direct therapy with DC), she said she would have to ask the LA for their permission for her to give it to me!!! This "permission" took place during a telephone conversation between her (NHS therapist) and the LA (which then showed up in my DC's DPA material). Therapist then gave me the Report but she gave me the "wrong one". The correct NHS SALT report (which I still hadn't seen by this point) then became part of DC's Final Statement but I WAS NEVER SENT IT despite two direct requests to the LA and another casual request to the SALT. In fact, I only saw it when the DPA Material was sent to me and it was tucked in amongst everything else.

TOWIELA Thu 27-Jun-13 16:01:49

Star - thanks for the link to the BBC report. I'm busy spluttering my cup of tea out over the comment from the LA

"The council is committed to providing the very best learning opportunities for every child in Essex."

Except my child then!

TOWIELA Thu 27-Jun-13 16:08:19

Ha ha - didn't read the punch line one first time read but have now!

"Any decisions regarding a child's education, therefore, are made not on the basis of cost, but on the needs of the child."

Oh my f*** god Essex County Council you are unbelievable! Yes I know this news report is 4 years old but you have done NOTHING for my child based on his needs! You have not acted in his "best interests" whatsoever in the last 18 months I have been trying to get him "adequate" provision!

Step away from the computer... And breath...

2boysnamedR Thu 27-Jun-13 16:56:20

I really am not a expert in this process but I feel like someone has just cut the top of someones head off and expected me to intuitively know how to preform brain surgery. To know the process, you must be thought. If you are told the wrong vien to snip the patient dies. That patient does not care if I was misinformed or if the person who told me to snip that vien was misinformed. He's dead already. So I totally get that the nhs and la may not be lying to me but see it from my view. You are a senco teacher, health visitor, paediatritian. This is your expert area. Is it ok not to know your facts? Should I write my child's health and education off just because a expert does not know their facts? In the corporate world you get the sack.

babiki Thu 27-Jun-13 16:59:17

Haha Towiela, I'm not even going to open.

2boysnamedR Thu 27-Jun-13 17:02:10

How can you be a senco teacher and not know sen policy? Surely then it's ok for to get a job doing that, as I would be useless but mean well? Is ok to be a health visitor working with babies and vulnerable families and not know about learning delays and how to advise mums on the best care for those needs? I agree my hv is lovely honestly. But my mum can tell me that 'it could be worse, some kids never walk'. Plus I know that already. I am 39 i have seen many sad things in my life but I was talking about my kid, his needs. Not joe down the road who had his cat run over. Sad? Yes! Relevant? Possibly not

ilikemysleep Thu 27-Jun-13 17:11:32

Or for a summary

TOWIELA Thu 27-Jun-13 17:11:55

In the corporate world you get the sack

2boys - totally agree! And in the real world, if you stole off a disabled child, you would a) be targeted by the media and b) go to prison.

But getting a disabled child "adequate" provision isn't the Real World. This really is some alternative crap universe.

ilikemysleep Thu 27-Jun-13 17:27:37

I wasn't suggesting it was okay! I was suggesting that maybe this senco is clueless about what is actually the policy, so I wouldn't assume she is correct, but contact the agencies direct and ask about referral policies. It is not up to a school teacher to decide whether or not your child warrants a medical diagnosis. You are absolutely right, you only know what you are told, and I suspect you have been told wrong information here.

All I have said is that there is no general deliberate conspiracy of collusion between nhs and la to stop children getting diagnoses. And if there is, given the massive explosion in diagnoses in the past 10 or so years, it obviously isn't a very efficient collusion.

Kiriwawa Thu 27-Jun-13 17:32:31

I have just been told that there is no point in applying for a statement for DS because he can read. They think his LDs are severe enough to bypass school action and go straight to school action plus in year 1 but somehow that doesn't merit going to the next stage.

MumuDeLulu Thu 27-Jun-13 17:50:27

NHS Choices page on how dyspraxia / developmental co-ordination disorder is diagnosed.

You may be getting a very garbled version of something along the lines of:
'This looks like probable dyspraxia, but a paediatrician needs to check too, just to be sure he doesn't need any fancy tests like MRI and to make there isn't some other cause'. Which would be fair comment.

MumuDeLulu Thu 27-Jun-13 17:57:44

Ilike, you made me choke on my tea grin. I love the idea of roomfuls of useless pen-pushers engaging in timeconsuming but really ineffective LA-NHS collusion up and down the UK. With the added bonus that they then leave the non-caring-carrot staff to get on with the actual work unhindered

MumuDeLulu Thu 27-Jun-13 18:01:29

We need a really expensive think tank to get the 'paradigm shift' of ineffective collusion new joint partnership pathway management strategy carrot conferences 'rolled out' nationwide.

moondog Thu 27-Jun-13 18:07:26

Thanks Ilike.
I look forward to checking it out. smile

MumuDeLulu Thu 27-Jun-13 18:08:30

Ilike clearly works in an area where the NHS and LA work independently of one another. There's a lot of regional variation though, example here

ilikemysleep Thu 27-Jun-13 18:46:13

Mumu, not really. We have some joint commissioning, eg of ed psych to multiagency autism team, and of course ed and healthcare plans which will replace statements bring it all together much more closely. And of course some children have both nhs and la involvement, such as a salt and an ed psych. What doesn't happen is that the panel respnsible for deciding how much money indiv children get in their statements do not contact the autism or adhd team and say, 'no more diagnoses till christmas please, funds are a bit tight'. They do many other things wrong, many many things as evidenced in the individual stories on here which make my toes curl, but they don't do that!

bochead Thu 27-Jun-13 18:46:55

I've met some amazing local professionals to be fair, trouble is for the REALLY good ones they seem to get tired of treading thru treacle and move on to pastures new fairly quickly. My PCT went bankrupt through sheer mismanagement and the LA isn't in much better shape. The primaries are failing on rotation and the secondaries are grim even for the non-SN kids. The phrase "fur coat and no knickers" was never more apt than for our local government generally, other areas will have their own strengths and weaknesses.

mrslaughan Thu 27-Jun-13 21:04:49

Like - I will read the research, but in the case if DS, cogmed made a noticeable difference..... Is it a panacea that fixed all his issues, no, does he still have working memory issues when he is tired - yes, but there has been a noticeable improvement - it's anecdotal, but it has helped in his case.

2boysnamedR Thu 27-Jun-13 23:04:01

Ilike thanks for being honest, I can't imagine any of the people who work with my son talk from nhs to nhs dept so I am not at the stage where I think there is a conspiracy - that will be next month ;0) you know, this is just so bloody hard without the misdirection. Just talked to my head of department at work who has told me something new as her son is 13 with autism. She also pointed out that a statement or diagnosis will not cure my son. That's true. So why do I feel so upset? She said its not about my dreams or hopes for him, it's about his hopes and dreams. This is also true. So why do I feel so crushed? I really take no joy in shouting out 'hay my son is quite frankly a bit peculiar!!!' 'Upur lid kid walked at nine months? Mine can't wipe his arse at six-beat that!'

Any way I ramble. Can't see where I go or why I got on the path now. I feel like I have been for a spin in washing machine. I don't want anything more than to know what's up with my son, and how I help him cope. No cure, no money just a little shove back on the path ( not the path over the waterfall )

moondog Fri 28-Jun-13 09:20:39

2boys, this statement should be carved over the door of every department in the SEN industry.

' I don't want anything more than to know what's up with my son, and how I help him cope. No cure, no money just a little shove back on the path ( not the path over the waterfall )'

I've written that down and saved it. Would you mind if I used it when working and training? smile

2boysnamedR Fri 28-Jun-13 17:16:56

Your welcome moondog - it's been a hard week for me. But that is the crux of what I'm trying to do.

What area do you work in?

moondog Fri 28-Jun-13 19:26:49

I'm an s/lt working with kids with special needs.

2boysnamedR Fri 28-Jun-13 21:15:44

Salt? Can't be a easy job with the budget cuts. But worth while. I bet you never go home and think what was the point of what I did today. I have a friend who does palative care - hard but amazingly important.

2boysnamedR Fri 28-Jun-13 21:21:44

My senco complained to my salt. She told senco to raise a formal complaint as the more formal complaints she gets, the more she doesn't have to turn people away. Should be her sign off. Like the kind you have on email signatures. Like 'if you was pleased with your service today please like us twitter! If however your child is turning six has no statement, please raise a formal complaint' lol!

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