Finally got an appointment with Daphne Keen!!

[Soutty]

Hi all,

I posted on here a while ago about my frustration with the way that the assessment procedure with my son seems to be going nowhere. He hasn't had an appointment with the speech therapist since October although whenever I phone they say he hasn't been forgotten and despite being confirmed as having a 2 year delay in expressive speech when he saw the paed in August, I've had no appointments since despite being reassured that he's in the system and hasn't been forgotten.

Luckily for our son, we are able to afford to pay for private assessments and next week he sees the speech therapist and finally, finally, finally, after weeks of badgering her secretary on the phone we have a date for him to be assessed by Daphne Keen. Not until July but still I am just so relieved that finally he will be assessed by someone who knows what they are talking about.

My son starts school in September so none of these reports will be through in time for me to get a statement for him in time for reception but with any luck we'll have got one by the time he goes into Year 1.

Anyone on here seen Daphne Keen? What's she like as a person? What's the assessment procedure like? I know it takes 2 hours but apart from that I don't really know what to expect - not that I intend to school him for it of course as clearly that would render the whole thing pointless...

Waiting list till July....wow.... It must be all the mumsnetters flocking to see her...

We saw her in Nov last year and the appointment lasted about two hours. She was very good,very personable makes you feel comfortable. From memory, the first hour or so was her taking notes, past history, pregnancy, questions about DS mostly, his developmental milestones, behaviours etc and she was observing DS at the same time. The rest of the session was me discussing any concerns we had, advice on next steps etc...

HTH

I am going to be really really really nosey now and ask how much an appointment would cost??

£750 for 2 hours but that includes writing up the report

I wish there was a Daphne keen equivelant in the south west!

Chundle - travel! We did to get the best. It's worth it.

Yes thinking I will have to although the thought of a train ride with dd pains me as I don't drive! I have considered bristol priory in the past though so that may be worth a look, but if I'm going to do it I may as well go whole hog and end up in London :)

Pardon me for my ignorance but I've not heard of this lady. Does she assess for ASD? My son was assessed last year and told he was borderline so they wouldn't diagnose. He's struggling at school and the SENCo, Ed Psych and a few others have said he definitely has ASD and needs a diagnosis however they're refusing to reassess him.

Where is Daphne Keen based? I was also told that a private diagnosis won't be taken seriously by local authorities, is that true?

Thanks and sorry for the hijack.

Wafty, that is rubbish. However the reason people chose Daphne ( and her apparently escalating fees) is BECAUSE apart from being excellent she is a well respected senior NHS paed that does a private clinic once a week.

She has an NHS reputation to protect and so is never refuted by LAs.

We saw her 6 years back. She was fantastic. She diagnosed dd's asd. It was borderline but she asked us what we would like to do and as the label opens doors we asked her to put it in the report. so she put it in with a follow up in a few years time as her caveat. She also wrote her recomendation for at least 15 -20 hrs intensive therapy and suggested ABA.

We also had a sympathetic report from the ed psych Dirk Flower. They both meant we were taken seriously by the LEA and they gave dd 15 hrs of aba in her statement at the first instance without tribunal.

The asd assessment by dr daphne keene was done before the nhs. So when we went for the nhs appt they said they would only assess if we wanted a second opinion. We said we didn't. So in their report they said that since the asssessment is already done,it is the one to be followed and they will not comment due to professional somethingn or the other.
So that worked very well for dd.

Re dr daphne keene think what you want from her and discuss it openly.

All the best. Hope it goes well...

She asked us loads of questions - ones that we would have thought totally unrelated and observed dd. as far as I remember the major part was the parents questionaire.

Nothing to school. Just be as frank and open as possible and take your time thinking and tell her about all the things that worry you.

An expert definetely. After the gaggle of so called professionals with their wishy washy reports and help - it was real relief to see her - someone who actually got dd - and all in an hour or so...

Thanks for all your posts. Such a relief to know that DS will finally be seen by someone who knows what they are talking about and who will be taken seriously.

What I want out of this is a statement recommending that he has a certain number of hours of ABA per week. Should I say that to Daphne at the outset?

I want to make sure I squeeze everything I possibly can out of the interview so I will start making a list of concerns now.

I'm not sure she'll recommend ABA tbh. She'll more likely recommend 15-20 hours of autism specific education as in line with the national autism plan, but still ask.

Oh well, I'll ask anyway.

The most important thing is that her opinion will be taken seriously for statementing purposes. I've been laughed at by the special needs woman who is helping DS transition from nursery to school when I've talked about applying for a statement you see. She says there's no way he'll get one because he is making progress. Pretty frustrating when, yeah he's making progress but he's still 1-2 years behind other kids verbally, behaviourally and emotionally and any progress he is making is down to the VBA programme he is on (at our own cost).

Sorry for bumping this back up but can I just ask when you see Daphne do you have to pay prior to the app?? Or on the day?? Or do you pay a deposit to secure app? What happens if you need to cancel for whatever reason??
Thanks I've just emailed her secretary!

You have to pay on the day by cash or cheque. When you finally get an appointment her secretary will send you bumf setting it all out. Don't delay - it might take you months to get her secretary to make an appointment and then you will have to wait even longer.

I wish we didn't have to wait until the end of July to see her because a speech therapist of equal gravitas has diagnosed Specific Language Impairment which is a language disorder not associated with ASD but which apparently makes children (especially young ones) present very much like children who have ASD. Until I know what the true position is I can't really apply for a statement which means he will have to go into school in September without any protection which is not ideal really.

However, I think I would be foolish not to get him seen by someone qualified to rule ASD in or out before applying for his statement even though he could get one just on the basis of SLI.

VBA is working well for us so I would like that on his statement as well if I can get it. Plus he has pretty challenging behaviour which I'm not convinced will just improve when his language skills improve.

Just call her secretary, you might not get an appointment until next year - it's just bonkers how booked up she is.

Excellent thanks think I will just ring her tomorrow!

Imogen, I know it sounds unreal but I have EVERY confidence in her. It's like she can SEE your child. There's just no messing about.

I think the CDC and MDT type approaches involve just far too many people and explore just far too many random and unlikely explanations. Those involved in the decision making do other things and many are not Dx qualified. I.e the Headteacher of Ds' preschool was on the Dx team as well as his Jnr SALT. Social Services wanted to be too.

I don't think input and reports from the above are a bad thing though but it's just too easy to go off on a tangent due to personal professional opinion.

If you research developments you can see that the 'experts' around the world and the few in the UK can actually Dx a child pretty quickly, especially if clear cut. I think also, a parent who goes to see DK knows at least some relevant information and might be able better to understand and to take about the extent of imaginative/pretend play etc. which can fool lots of parents particularly if not expecting the question.

For example, I know that Ds ringing a bell for 20 mins at pre-school is NOT showing imagination, creativity and an interest in music, as they reported!

Great question imogen, i have often wondered myself.

I was really not in a postion to go private for Dd3 but had we not got the dx in september london was definitely my next step. That or the Lorna Wing Centre, who are apparently good at dx'ing tricky cases.

I am just relieved to be out of it tbh.

Good luck to all those of you still seeking dx's. .

Perhaps people only shell out for DK when they KNOW there are issues but sick of the rigmarole and wait for Dx-dependent provision!?