Question for SENCOs

[ohthegoats]

A child in my school has just been given a diagnosis that I (and other staff, and social care staff, and head of PCAMHs) don't agree with.

Has this happened to anyone else? Is there anything that can be done?

Who made the diagnosis? A doctor?

How much does the diagnosis itself affect how you're likely to support the child? Surely if child has difficulties in xxx you will continue to do yyy to support, regardless of the diagnosis?

One CAMHS doctor didn't make the diagnosis last March.
One private doctor didn't make the diagnosis last September.
A psychiatrist case worker for CAMHS strongly advised against a diagnosis in January.
A CAMHS doctor then made a diagnosis last week.

Doesn't affect us in school, although the first question was obviously "what will be put in place for her?" - erm, no change here, everything is in place for her anyway.

Just slightly concerned for long term mental health of the child, who I believe doesn't have the thing she's been diagnosed with, but has something else that won't now be treated appropriately.

Of course I understand that I'm not a doctor. Seems odd that three previous doctors don't think she should have had this diagnosis, but one suddenly does. The things she's been diagnosed with doesn't progress, the thing we think she's actually 'got' would have become more of an issue over the last year (for example).

Perhaps the previous doctors were taking a 'wait and see how it develops' approach, and the latest doctor either thought that sass load of bollocks, or agreed the waiting had been long enough and 'it' had developed/not developed enough.

E.g. My dd1 saw at least 5 separate paeds, and some of those twice or more, before she received her diagnosis. That didn't mean she didn't have it before she was diagnosed, it means the doctors were waiting to see how things developed (or managing waiting lists by fobbing off, depending on how cynical you are!)

So there's nothing that can be done about it? There isn't anywhere you can question it? The 4th opinion is the right one. OK.

The second private doctor was a specialist in this thing. Usually if there even a sniff of this thing existing, a private doctor will find it to justify their price. Funny that they didn't to be honest.

It's utter bollocks that a private doctor will dx in order to justify their price.

That's the kind of crapnthat is spouted by people in education to justify not giving a child the support they (now proven on paper) actually need. Because it's 'just' a private diagnosis, not a 'real' one

What makes you think you have the expertise to question this dx?

Why would you be any better placed to say whether this thing exists than an actual doctor?

If it won't affect your assistance of her in any way, why does it matter that she now has this diagnosis? What harm is the diagnosis doing her? Children should be getting the help they need regardless of their 'label', so if the condition you believe she does have worsens, you can increase the support accordingly.

Were diagnostic tests used in some instances, not others? I've had dds ASD discounted by child psychologists and the community pead, but as polter says above, it was not until an autism expert conducted an ADOS test and two other separate tests and observations that a diagnosis was reached.

Dd had been observed by other professionals, but none where expert enough to see ASD.

Fwiw, two yearson, dd appears more autistic to the untrained eye.

She needs professional help for the thing that is the real problem. That's my issue.

We're doing everything we can for her in school, and will continue to do the same irrespective of the diagnosis. I'll do a referral to an agency that will offer us some more advice, although I already know what they'll say, and we already do the stuff anyway. The actual paperwork of the referral is the only different thing.

We're not placed/not the right professionals to do the level of counselling that I think she needs. Don't want her to get to GCSE year and suddenly crash off a cliff with this thing, when people have been barking up the wrong tree.

I'm trying to be helpful rather than obstructive. There are other medical types who are sort of involved who have off-the-record wondered if it's the wrong diagnosis too, so while I'm not a doctor, and don't have that expertise (questionably I've got other expertise that medical professionals use as part of a diagnosis though), I don't think I'm totally in the wrong to ask whether anything can be done about it.

It's utter bollocks that a private doctor will dx in order to justify their price

In your experience, not in mine.

Why do you think the parents have sought the 'wrong' dx? (Both what makes you think that, and why do you think they may have done so)

Are the two things even related, or completely worlds apart?

If it is ASD and ADOS was conducted, no need to question the diagnosis. My dd probably also has OCD and she's 8. In females, the ASD is often unrecognised in favour of other mental health issues. Best thing to do would be to improve staff knowledge about females and autism. I know dds SENCo learnt a lot about ASD because of dd and always mentions this.

(Genuinely) have you ever personally seen a private doctor, who you believe has made a dx just because you paid them?

Because if you are talking from a professional POV, i.e. as someone in education who has seen children who you believe have received dx' purely because their parents went private, then it is simply your opinion, and not one that actually matters.

I've seen a variety of private professionals, for each of my 3 dc. None of them has ever said something just because it is what I want to hear. Some of them I have expressly sought out because they may well have said the opposite of what I wanted them to say (in some instances, it can be the only way to force a LA/school to actually pay attention and step up the support that isn't actually being given, despite the platitudes trotted out.

Could the pupil have both conditions?

OP, if you know of any doctors who are dishing out diagnoses for payment, then you need to give your evidence to the GMC.

People are complex. They don't always have one condition. Having one condition can lead to having another condition. Having one condition that isn't well managed can make it appear like they have another condition.

I have a DD (9) who is riddled with anxiety and cannot do anything without step by step guidance on what's next and exactly how much she has to do and what they will do if she can't do it, etc. Now we think that she has ASD, and we're waiting for CAMHS. In the mean time, we know that her rigidity makes her more anxious, but we also know that her anxiety makes her rigidity more pronounced, and then her rigidity makes her more anxious..... so we have to play a balancing game of how much we push her to go beyond her comfort zone to retain a bit of flexibility, knowing it may escalate her anxiety, and how much we give her the reassurance she needs to reduce the anxiety, knowing that it may feed her rigidity.

And that's because people are complicated. So this girl may have the thing she's been diagnosed with and the thing you think she has.

I think you just have to accept that you are simply not qualified to diagnose and the doctor in question is. It is not unusual for previous doctors to come to a different conclusion. Girls are often harder to diagnose.

I'd say you carry on the support you are giving and do what you're doing alongside this and seek further advice from professionals.

You can always say X explains a,b and c but doesn't seem to explain y. So can you advise us on y and who can support the pupil with it.

My ds has asd, also has anxiety requiring CBT and also sensory motor disorder alongside it.
When we meet his asd needs his physical needs are the most pronounced - but that doesn't mean his asd is the wrong dx

My son was 'diagnosed' with a tic by an NHS doctor. Then other doctors rede red to his symptoms as a tic because they had read it in his notes. I said all the time that we felt sure he has epilepsy instead. After research we paid to see a paediatric neurologist privately in London who was able to make a referral to Great Ormond Street private outpatients. He had an EEG which revealed juvenile myoclonic epilepsy with absence seizures. He had been having up to 60 myoclonic seizures a day. On our return to our local hospital they apologised and provided an MRI scan which showed the two sides of his brain had not fused properly.

Ask for a second opinion if you feel it isn't the right diagnosis.