Here some suggested organisations that offer expert advice on SN.

Dr Daphne Keen Diagnosis ADHD, Autistic Spectrum Disorder ASD, Dyspraxia, Sensory Processing Disorder SPD.

(18 Posts)
SNLondonMum Wed 20-May-15 00:56:45

I just wanted to post this to help any parents struggling to get a diagnosis for ADHD / ADD / Autism / Aspergers / Dyspraxia / Sensory Processing Issues / SPD.....

After spending a month last October communicating with Dr Keen's PA (frustrating at times!) I managed to get an appointment for my DC. The appointment was booked for 6 months ahead. We have now had the appointment, and I am so happy we waited to see her! I would say to anyone struggling to get anywhere with the NHS, try to see Dr Keen if you can - I feel she changed my DC's life with the diagnosis! She was very insightful and I feel she totally understood my DC's problems. My DC was diagnosed with a combination of the problems listed above, and I felt that Dr Keen had a brilliant understanding of how all of these issues fitted together....... We have had a LOT of experience with various NHS services, and I would say that this is a million times better than anything I have experienced on the NHS - it was a world apart! We walked in and three hours later came out knowing what the problem was and with medication to treat it. The idea that we could have been waiting years on the NHS terrifies me!

So if anyone is unsure if an appointment is worth the money and worth the wait, then I would say without a doubt, YES!

bjkmummy Wed 20-May-15 07:11:34

im glad the appointment went well - I also used her as well and came away with a dx for my dd. at first I was a bit worried as the dx seemed 'quick' but I have to say that it is now clear as day she is and if I hadn't seen daphne we would have spent many many years being dismissed. the dx was a shock especially as was my dd but has really helped us to fully understand her and help her.

daphne is also an amazing lady - compared to fighting tribunal and the reports for that, DK fees were the lowest bill I have had.

Ineedmorepatience Wed 20-May-15 08:27:06

Glad you feel happy with the outcome OP hopefully you will be able to move forward now. There is nothing worse that being sent from pillar to post for yrs trying to get the right dx for your child as I am sure you would have been.

Good luck flowers

SoonToBeSix Wed 20-May-15 11:59:37

We got our dx with Daphne Keen over a year before our Nhs dx. She was lovely and very insightful.

ShadyMyLady Wed 20-May-15 13:33:19

Thank you for this, I have been speaking with her PA/Secretary over the last few weeks and she has all of my DD's current reports.

I haven't heard anything for nearly 3 weeks though, I haven't chased as I'm still wondering whether to hold out for the NHS though. This has made me want to chase them now and see if they will give us an appointment.

ShadyMyLady Wed 20-May-15 13:36:35

SoonToBeSix did your private diagnosis effect anything on the NHS? I'm worried that if we get one privately then the NHS will turn round and tell us to sod off and withdraw any help with CAHMS/OT etc.

bbkl Wed 20-May-15 14:17:41

Message withdrawn at poster's request.

KeepOnKeepingOn1 Wed 20-May-15 15:35:33

Hard work to get the appointment but I saw DK privately with DS1 where he received diagnosis. He had previously been discharged and not allowed ADOS as school said he was 'fine' but since we were going to tribunal the NHS were asked whether or not they agreed with his diagnosis. They did. Without the diagnosis from DK (and MS) he would never have been referred for ADOS and never have received an NHS diagnosis. It is important that DK (and MS) are NHS professionals.

BKJ is right - compared to tribunal required evidence from SALT/OT/EP DK is relatively cheap.

Whatever the route to diagnosis there seems to be very little follow up - especially if SALT/OT is already in place.

2boysnamedR Wed 20-May-15 19:01:25

I'm seeing her next week with ds. He's 7. That's 5.5 years since fil asked me "is he autistic?" I hope I find out next week as that's been a question everyday if his life since he was 15 months old. 4.5 years under a pead on nhs, no answer on that front. I too am fed up waiting on the nhs.

frazzledrocks Wed 20-May-15 19:34:20

She is not the only person in the UK privately diagnosing to that standard, you know!

SoonToBeSix Wed 20-May-15 19:46:32

ShadyMyLady dd's private asd diagnosis was really helpful as school accepted it and supported dd more. Cahms seemed to accept it her but her psychologist was a bit funny about whether she really did have an asd hmm Our dd stayed on the Nhs asd pathway ( not run by cahms in our area) and received her Nhs dx 13 months later. Which was nearly two and half years after the initial referral. There was no pressure to leave the Nhs pathway and we were advised to stay on it in case her high school doesn't accept the private dx in the future. As dd had already seen DK she only needed to she speech and language because the NHS referred to DKs report.

ShadyMyLady Thu 21-May-15 14:12:19

Thanks SoonToBeSix, that's helpful. I've spoken to her secretary again today, who has been really helpful and so hopefully it won't be too long until we get an appointment date.

LoupDeLou79 Thu 21-May-15 14:45:30

Message withdrawn at poster's request.

2boysnamedR Thu 21-May-15 17:09:48

The benefits with DK is that she is a NHS doctor so your more likely to get the nhs to sign her off.

My youger sons pead is on the mad website as the only person in county dx ing asd. I gave her too private names of who I should see. She had heard of dk.

So yes lots people will dx privately and I'm sure she's not the only person who is likely to be accepted. But she is a reasonably safe bet when your talking paying out big sums

2boysnamedR Thu 21-May-15 17:14:22

Mad?! NAS!!!

Defiantly never come off any nhs waiting list. But in my case it's been 4.5 years. I will have dementia before I get a answer unless I go private.

So far I have heard " with his looks who cares?", "see! She smiled then", "he looked me in the eye"

All ignoring him walking like John Wayne on tip toes or waving his arms like a helicopter.

You could say "thousands died in a earth quake today and laugh and he would laugh. They don't see all that.

youarekiddingme Thu 21-May-15 17:50:23

2bous you have my DS younger twin in residence! He had ados Monday and Camhs ringing tomorrow to conform some stuff. Can't work out if that's good or bad.

I have seriously considered private for answers (eg looking at asd and co morbid a/ other options) if nothing comes out of NHS. We've been waiting 2 years for this assessment. <sigh>

DK looks like a good bet from this thread.

Glad you got some answers OP.

SoonToBeSix Thu 21-May-15 18:28:10

Camhs not cahms! Flipping autocorrect , my iphone is obviously as disillusioned as me.

2boysnamedR Fri 22-May-15 00:09:02

My boy has been under a pead for 4.5 years

The last word from his pead was " his last pead dismissed asd and I see no reason to revisit that, unless his younger brother is diagnosed when I can look into it again" so he's not got asd right? Unless his brother has got asd? As that is a diagnostic method?

Hand flapping - nope
Clothes chewing - nope
Tip toe walking to extent muscles shrink - nope
Lang and communication disorder - nope
Brother with asd - tick! confused

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now