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Here are some suggested organisations that offer expert advice on special needs.

Private dx

19 replies

mumof6needssanity · 20/09/2014 22:32

Hi,
3 years on I'm still going round in circles with the nhs so we are giving serious thought to going private.
We live in the berkshire area and believe our son is autistic.

I would like some who can assess for autism but ideally also test other things like cognitive behaviour, ADHD, dyslexia etc

Who can you recomend pls? Someone who the lea would listen would be a big bonus.

Tia

OP posts:
speechiesusie · 21/09/2014 00:11

You ideally need to find somebody who can give you pretty much what NICE guidelines recommend, which is a multidisciplinary assessment.

I do this, but I'm not in your area (though I trained at Reading University, so I'm waving at the lovely Berkshire!) so I feel I can mention that without being accused of touting for business!

You ideally need a doctor, psychologist and speech and language therapist (if you read the NICe guidelines, you'll see) who can conduct an assessment using interview and observation. So for example, we use the DISCO assessment for interview and the ADOS for observation. We also do a sensory assessment and advise on that, which you might find useful - so try to incorporate that or perhaps see an independent OT for it.

There are a couple of people who assess for autism acting alone on a national basis but as far as I know, they tend to use one tool or the other but not both (to conduct an ADOS, you need a second person qualified to administer the test who can act as 'second rater' to make sure the scores are fair). As far as I can see, this just doesn't fit NICE guidelines - one person cannot be 'multidisciplinary.'

Their opinion may or may not be accepted - but when you are paying a lot of money (and I know what they charge - it's over and above what I'd expect to pay) then you need to find something as close as possible to NICE guidelines. I seem to think there's a place in Oxford, which is obviously bordering Berks, but then again I think it's just psychologists so not multi-disc.

In our case, we don't have a paediatrician on board - but people often come to us because of the waiting list. Our reports are sent to the paed at the hospital and we've never had a problem getting them accepted (so the paed's opinion completes the triad of professionals required by NICE). You might not find the exact combination of SLT, psychology and doctor in the private sector (or you might!) but provided your doc is prepared to accept a high-quality report, you ought not to have problem.

bjkmummy · 21/09/2014 08:05

ive kind of done my own multi disciplinary assessment although I didn't mean to! my daughter has seen an OT first who highlighted difficulties and then we saw an indie salt who can do the ados and she picked up ASD and then finally last week we saw a paed who also has confirmed asd - in total it has cost us £3k - we have only had the assessments done this way as we are going through tribunal and we didn't expect that ASD was on the cards so its come as a bit of shock - how well the dx will be accepted is something we are about to find out I guess - next stop is an indie EP report.

the salt and paed I used are the people that's lots of people on here have used as they are also NHS professionals so their opinions are respected.

speechiesusie · 21/09/2014 08:22

I think that's horribly expensive. We charge exactly half of that and we include the DISCO assessment, too.

You need to shop around, OP!

mumof6needssanity · 21/09/2014 10:11

Hi,
Thank you for your replies. I will go off to,do more research.

OP posts:
bjkmummy · 21/09/2014 10:27

yes mine was expensive because I went the scenic route but I wasn't thinking we were on the ASD path - the dx came out of the assessments - if I had been contemplating an asd dx then I would have gone on a different route so yes I agree research it all very carefully and I think having a multi disciplinary assessment is best rather than just one expert although my elder son was only dx by one NHS professional but I think now it is definitely good practice for it to be multi disciplinary

also the reports I have done are also for tribunal as well which can sometimes add to the cost

DishwasherDogs · 21/09/2014 10:38

Ds2 is seeing an OT privately. We have also approached someone for an ASD assessment (Margo Sharp), who may be able to see ds in November.

Does anyone know if a dx through a Margo Sharp would be recognised through our LA?

speechiesusie · 21/09/2014 13:03

It may or may not be - but they could argue it's against NICE guidelines. Don't give them the room to argue - follow NICE guidelines!

DishwasherDogs · 21/09/2014 13:19

Thank you :)

bjkmummy · 21/09/2014 15:00

We saw margo sharp and also Daphne keen so that all sides were covered.

DishwasherDogs · 21/09/2014 15:24

Stupid question, but what does Daphne Keen do?
I know MS is a SALT and assesses using ADOS and DISCO.

We are still umming and aahing whether to post the form off to Margo (in fact, just had another "discussion" about it half an hour ago).
Ds is on the waiting list for an NHS assessment, but several people have been at pains to warn us that he won't get a dx because he doesn't show anything at school.
I want to go ahead, but it's a lot of money to spend if it's not going to mean anything.

bjkmummy · 21/09/2014 15:37

daphne is a paediatrician and dx according to the DSMv - we saw her on Friday. margo dx our daughter with asd, daphne also confirmed it - the report from margo was simply amazing and was just so so detailed - no way you would ever get an nhs salt report in depth - they are both well known and both work for the NHS as well so very well respected and also by tribunals as well

legoman · 21/09/2014 15:42

We had years of this. Then ds was referred to CAMHS who were exactly the same.

We saw Daphne Keen who wrote an excellent report.

CAMHS then dxed ASD/ADHD very quickly.

I think it cost us somewhere in the region of £500-£600.

DishwasherDogs · 21/09/2014 15:42

So could you go to any private paed and get the same result, or is Daphne particularly good in this area?

(Op, sorry for the hijack, but hopefully some of this is useful!)

bjkmummy · 21/09/2014 16:24

daphne is particularly good with children with asd who don't easily tick the box - we saw her in London and she was £760

mumof6needssanity · 21/09/2014 19:32

Oh wow thank you this is brilliant.

Dishwasherdogs hijack away it's very useful Smile

OP posts:
DishwasherDogs · 22/09/2014 12:17

If a private assessor doesn't think it is ASD will they suggest other things or would you be back to square one?

speechiesusie · 22/09/2014 15:39

Depends what they use.

When we use the ados and disco, the disco would run algorhythms for other conditions. Also we would obviously use our clinical judgement and experience and if it didn't seem to be autism, we may suggest other things to look at (and other professionals if needs be, for example, we might suspect dyspraxia but actually think that ought to be assessed by an OT).

One of the things our families sometimes find helpful is a consultation appointment prior to committing to paying for an assessment. In this way, we can visit them at home or they can come to clinic and we can meet the child and have a chat.

i usually take a list of the areas that would meet criteria for diagnosis and I ask questions and make observations based on those, without actually formally assessing. The parents don't realise I'm asking very pointed questions from a set of categories to weigh up how much their child might meet criteria. Afterwards I will advise them to what degree I think it might be autism - this allows them to make a decision whether to proceed and obviously lowers the chance of people paying out for assessment without getting a diagnosis.

Could you try and find a service local to you that offers something similar? It's an increasingly popular option for our families.

DishwasherDogs · 22/09/2014 16:12

Thanks Susie, that's really helpful :)

We have found an OT fairly locally who are carrying out an assessment.
We were recommended someone for an ASD assessment, but we're told that the report wouldn't be credible as she didn't use ADOS or DISCO, and the assessment took two hours.

There is a place nearer than Margo, but their fees are beyond what we can manage, and I've read loads of recommendations about Margo, so feel comfortable to go ahead with her.
I will ring her and ask about a prior consultation though, that's a good idea.

speechiesusie · 22/09/2014 20:39

Good luck, hope it goes well for you!

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