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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?

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!

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.

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

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

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 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 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 )

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.

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.

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!

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

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

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

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.

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 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.

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.

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.

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 17:11:32

Or for a summary

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

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

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

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.

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...

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 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.

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.

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