Here some suggested organisations that offer expert advice on SN.
Anyone know who we can see about dd2 other than Daphne Keen?(30 Posts)
It is getting beyond ridiculous trying to book in with DK.
Having chased and chased for a couple of weeks (being told various dates as to when appts were being booked for - yes, I understand she is in demand. I would like to book and appt, even if it is for a few months time - no point in waiting for a few months, to then have to book an appt for even further into the future! ), I finally got through to talk to her secretary.
I was vetted, and asked what concenrs I had (fair enough), and then told she would pass the info onto DK, who would look over it, and consider whether she owuld see dd2 or not.
so am back to waiting.
it is now coming up to a month of trying (and failing) to book in. appts are now booking for the start of the next academic year (apparently, although I have not been allowed to book one...), and I would prefer the ball to be well and truly rolling before then if at all possible.
So, is there anyone else that posters would recommend? It is really quite clear that dd2 is struggling, and that she has issues. waiting is a waste of time (and it is beginning to feel an awful lot like we are being fobbed off, tbh)
A few years ago now but I booked a CAMHS consultant who did 1/2 afternoon at a private hospital and he transferred one of my children on to his NHS clinic.
There's an assessment centre in Ormskirk owned by the Witherslack group - Belle Vue - costly though.
www.chelwest.nhs.uk/services/childrens-services/childrens-medicine/neurology-children she also sees patients privately at Portland street..
Gosh do private ADOS/neuro assessments on a 4 week wait. eyewateringly expensive though.
Boc - what sort of eye watering figure would that be?
Hothead - have emailed (two email addresses) repeatedly, and called on both landline and mobile numbers. The only time I actual got to speak to someone (rather than playing phone tag with messages) was when I rang every 5 minutes all day long - no joke, I used an egg timer to remind me and it was still nearly 4 hours before the phone was answered. Sadly, with children on holiday I don't have the luxury (!) of doing that again.
I will investigate options, thanks again. K
I had private diagnosis (using the DISCO) by Margo Sharp SALT (who has a particular interest in girls on the spectrum btw) and saw Daphne Keen. DK does not do any particular assessment, the consultation itself is diagnostic. It helps then to have assessment reports from others who would be part of a multi-disciplinary team. The combination of MS and DK have been accepted by the NHS comm paed who support the diagnosis without the need for further assessment.
We had similar problems trying to get through to DK and eventually went with the London Childrens Practice, where we got a diagnosis.
Gosh = approx £2k but that's a for a FULL neuro work up inc ados/apd/dyspraxia/adhd/spd assessments. I have it in my back pocket in case DS needs a formal apd diagnosis at some point as so few places cover this. (label chasing to satisfy the ever decreasing SN resources in my LA iykwim yukky but may have to be done at some point in the future).
London children's clinic - I've only used the salt service (I think the lady I saw was Jackie Garland) but I was very impressed if that helps any.
thanks, boc. hmm, £2k is more than we want to spend really, but yes, a lot of info for that price. I've had a quick look at gosh private patients, and on the referral form it wants a referring doctor/paed. dd2 is not involved with anyone as yet - tbh, most lay people would look at her and laugh us out of the consulting room. is it possible to be 'just' a parent referring, do you know?
she is ahead in all areas (at the moment), and in typical girl (asd) fashion she is doing ok (ish) socially - ok enough for any difficulties to be written off as her age (just turned 6). the clues are there, if you look hard enough/want to look hard enough, but she will be a tricky dx, iyswim. which is why we need someone who knows their stuff and has a rep for tricky/complex dxs.
I hadn't thought abot approaching it from a salt perspective. we've used london children's practice before with dd1, btu her difficulites were clear and obvious. dd2 tests off the scale (in so far as she has been tested, usually when assessments are happening with dd1!), and so discovering the gaps in her knowledge/langugae use is tricky.
really, what we want is the impossible - a smooth dx for a child not yet presenting with difficulties (to the outside world), and then for her school to take notice of what we have been telling them all along (the dx paper would help, I think) and put some stuff in place (small adjustments, rather than extra help) before the shit hit the fan. which it will do - it is taking mor enad more for dd2 to get through the day, but as yet she hasn't ever had a meltdown/flipped at school - this cannot last. and won't last, once her peers start to leave her behind socially. she already doesn't understand loads, btu can ask me daily, and since they are only yr1, it is not that far fetched for her to not understand, go away, work it out and then come back - in typical small child style. but this changes, and when she can't keep up on the spot, then it is going to get really tough for her.
Is she a developmental pead?
What about professor Ricky Richardson at GOSH - we saw him and his team (they weren't at GOSH).
Have a feeling margo sharp is who you want atm.
Might then open doors for NHS community paed to take things seriously
Also, taking a child to see a speech therapist privately doesn't set off 'is this mother just a munchausen's nutter chasing non-existent diagnoses?' alarm bells for any
busybody ignoramuses concerned non-experts
Haven't posted on SN before... (Am working up to it!)
We have an appointment for our son with DK in May. I think we first made contact with her through her secretary in Feb.
Sounds like we went through a similar process. Spent a good while phoning and leaving messages, then the sec eventually called back. Took details, then contacted us a couple of weeks later with a firm date. Took several weeks, and a bit of chasing to get the paperwork through, including things like questionnaires for school.
If you think DK is the right person, it might be worth just hanging on a bit. For what it's worth, the date we were finally given was the same as the initial date that was provisionally mentioned.
Message withdrawn at poster's request.
before we saw DK this december; for which we requested an appointment 26 months ago (our son was dx 24 months ago) we saw at dr at portland named 'sunil pullapumera' he was a fraction of DK's cost....he did have a habit of staring at my breasts though, on one hand it made me quite uncomfortable; but then my mil and dh keep telling me it's hard not to stare. I'm assuming I have a decent set.
DK managed to maintain eye contact throughout our meeting.
it has taken us 2 months to get an appointment with DK.......nothing in writing mind you. Her sec called me back after two months of chasing and leaving messages and confirmed a sept appointment. seems like a lifetime away right now. just glad to have finally got it booked in. good luck with whatever route you take. If you really want DK you will get a response in the end but it is tiresome, i nearly gave up. call on the hospital number best day is a weds i found. good luck
My daughter was diagnosed by [http://www.autismconsultants.co.uk/our_specialists_helen_welsely.htm this consultant] We got an excellent report from that which she did jointly with the SALT, Auriol Drew. Cost of the joint report was £1100 but this was about 8 years ago.
You could try Dirk Flower £600 google it if interested
Good luck with it all
SingySong you are so lucky getting a DK appointment for may by contacting her sec in feb , I have been booked in for sept!
Message withdrawn at poster's request.
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