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

Original poster

Autism Consultants

13 replies

blossbloss · 26/04/2013 17:18

I am looking for someone to assess my DD privately for ASD/ADHD as we are getting nowhere using the NHS. I am trying to get an appointment with Daphne Keen but not making much progress so have been looking around for other options.

Has anyone used Dr.Helen Wesley at Autism Consultants? They look good but its a lot of money so I was hoping to get a recommendation before proceeding.

Does anyone have any other ideas?

Thanks in advance

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coff33pot · 26/04/2013 22:15

I dont know who this woman is tbh maybe someone else may have an idea :)

If you have the money to spend then I would suggest Professor Patrick Bolton and his team at Autism & Related Disorder Services Maudsley Hospital. They are thorough. I had a referral via nhs but I cant thank them enough for being so good.

They also do tertiary assessments and complex cases and very thorough. I know he does act privately as well as nhs but it will be expensive.

cornyderpy · 26/04/2013 22:19

how long did your assessment with Professor Bolton take coff33?

TigerLightBurning · 26/04/2013 23:03

Have you tried calling the NAS helpline to get a doctor near where you live? I did that and got an NHS doctor who did private diagnoses. Got seen really quickly didn't cost that much less than £500 I think for 2 apts inc ADOS, best thing we did. Good luck

bunnybb · 26/04/2013 23:19

Hi, we used Helen Wesley 2 years ago; she was good.

coff33pot · 26/04/2013 23:23

Two appointments set two weeks apart. First one was mainly us completing ADI (austism diagnostic interview) whilst DS was taken away for his own congnitive and well being assessment. Second one was ADOS and further assessments which is filmed, recorded AND behind a magic window the rest of the team dual assess. If there is a dx you walk out with it there and then on the second appointment.

Its tiring, exhausting infact but worth it.

coff33pot · 26/04/2013 23:34

Blossbloss when you say you are getting nowhere with the NHS, do you mean the waiting times? or have they made a decision you are not 100% happy with.

Reason I am asking is you are within your rights to request a second opinion if its regarding a dx or non dx as the case maybe (and was for us). It may well be worth getting hold of your GP armed with as much data and paper work as possible to support a second opinion referral through the NHS as maudsley is also nhs and not just private x

Original poster
blossbloss · 27/04/2013 09:23

Its a combination really.

Its taken nearly a year to even get her referred for an ASD assessment and will probably take another year to get it. And the pediatrician will not diagnose ADHD using the school's report as its not strong enough and she wont take into account the views of the other professionals DD sees.

We have asked for a second opinion regarding the ADHD diagnosis so have a CAMHS appointment coming up but feel its all just dissolving into a talking shop really and its all out of our control. In the meantime DD's needs are being overlooked and we are getting more and more confused and upset by it all.

I will try and contact Professor Bolton as what you describe seems just what we are looking for and also try the NAS helpline. And I will try Dr Keen's secretary again next week.

Thanks for your help

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coff33pot · 27/04/2013 12:25

Hope you get some answers soon!

Just as a suggestion. It might be good to keep phoning camhs with every incident that is either happening at school or upsetting the household as it will keep your name in the loop Wink and appointment may come sooner than later. Camhs should give you and school a conners form to complete once scored they will have a better idea.

Then should you receive adhd dx but nothing else and you feel its more complex THEN go armed with the reports to GP for tertiary referral x

It just may save you a small fortune. A GP is in a position to refer you himself but it will depend on primary care trust funding it and you going armed with as much paperwork, web links and your own findings to prove you have good reason to go out of town so to speak. So sometimes it is worth seeing all the local profs just to form that fat file!

Keep logs, keep diaries. I know its slow and I have been there too but use it to form the biggest referral package you can. Good luck x

coff33pot · 27/04/2013 12:27

Should you go to Maudsley it is good to have school involved in the process as they will be sent a huge amount of forms to complete including the Conners. You will also receive a very indepth form to complete which you do online. It took me 9 plus hours!

But worth it

Original poster
blossbloss · 27/04/2013 12:37

Thanks coff33pot

"Fortunately" we are in the CAMHS system already as DD has a history of school refusal and anxiety. We are working with a psychologist there to try and help with that and he is raising his concerns with us about DDs ADHD and ASD types behaviors. We have an appointment with the psychiatrist at CAMHS now to start getting a second opinion.

This is why we feel we are just going round in circles and of course taking DD out of school for yet more appointments and fueling her anxiety more each time. We are hoping a private diagnosis may draw a line under all this.

I take your point about building an evidence trail and am starting to realise we need to present our evidence more effectively.

Thanks again

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coff33pot · 27/04/2013 12:55

Sounds that this is a multi disiplinary team thing going on. If so it could be you are close coming to the end of it (I know there is waiting time but hassle on phone)

A psychiatrist meet ususally involves the MH nurse, Camhs Doctor, and psych in a two hour assesment. Find out if that is what you are going to get as if so then it may well be you are closer to dx than you think x

Perhaps the psychologist if he is linked to camhs could get hold of two connors forms to get the ball rolling whilst waiting for the psychiatrist appointment? flutter your eyelids, burst into tears or something Grin

Anything is worth trying and it could cut time.

Original poster
blossbloss · 27/04/2013 14:00

That's interesting. We are seeing the psychologist again next week so I will ask him. I am getting very experienced at bursting into tears I am afraid Grin

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Original poster
blossbloss · 14/05/2013 14:30

I just wanted to report back that DD got a diagnosis of DAMP from the CAMHs Psychiatrist last week and has started on 10mg equasym. He seems to have based the diagnosis on our Connors questionnaires, the reports of various SALTs, OTs and Physios DD has seen over the years and his own observations of DD, which have included some strange behaviors.

We have also managed to get an appointment with Daphne Keen over the summer holidays where I am hoping to get some help with the ASD question.

Thanks for all your help everyone.

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