daphne keen - how easy is it to get an appointment

[bjkmummy]

does anyone know how long it would take at the moment to get an appointment with daphne keen and how easy is it to get hold of the secretary? I seem to remember someone saying she has a new secretary now.

its all blowing up big time with my daughter - meeting with school this pm - a close friend came round last night, she is a SEN teacher and is currently doing a masters in ASD, she is one of my closest friends and she told me that she feels my daughter may well be on the spectrum - it was a punch in the stomach but now I admire her for having the balls to say it! its something that has always been in my mind but ive buried it so deep as its something I didn't want to acknowledge - with two boys with asd she was the one that I guess I had hoped would not have asd but as they years have gone by its becoming obvious something isn't right.

in the professional reports weve had done, certain traits have been highlighted but the word autism until now has never been used. I guess the lack of meltdowns made me confident that she wasn't.

so im going to take her to see daphne keen - part of me hopes im wrong and the appointment will say she isn't and then I can just move on - does anyone else know how much an assessment with daphne keen is?

I found it very difficult to get an appointment - multiple emails and phone calls, copying in the nhs address. Then one day out of the blue, her private secretary phoned me. It cost £980 inc VAT in Sept 2012.

I was 'blind' because he didn't fit an ideal type and because nobody else had mentioned it (bar a friend with a son with ASD but I was so blind that I couldn't understand what she meant by the importance of diagnosis - I kept thinking that was important to her because her DS has an ASD but couldn't see how it was relevant to me ) but as soon as we saw DK - greeting - I could see it through her eyes and I was surprised how obvious it was.

Well worth the money and her report was excellent. The diagnosis has now been confirmed by the NHS with no need for further assessment. He did the DISCO with MS but has not done ADOS.

Of course, you do realise that it may well be that you do end up going to tribunal again for indi ss (DS1 has the 'classic' combo of SpLD, ASD and anxiety with average/above average cognitive ability and so didn't fit any LA placement). I almost feel sorry for your LA and their 'quirky' ways - almost but not quite

I found it really hard to get an appointment in the end I went to a different woman based in Kent I found her details through NAS she dx'd ds with asd last August

I can pm you her details if you want?

Yes marshmallow that would be really helpful. I'm finding it all a bit overwhelming at the moment, I though the dyslexia dx wold explain everything but there's clearly more. She's now 10 and I've got friends now all coming out voicing concerns that they have kept quiet , even her guide leader who is a family friend is saying that she is a loner, always on the outside of the group and I'm seeing that myself. My bright bubbly girl is disappearing before my eyes being replaced by an anxious worried girl. Secondary school is now becoming a huge concern.

pm'd you

I found it impossible last year, and also went with someone else in the end. We used Margo Sharp, and found her to be fabulous. We saw her within 12 weeks of first contact, iirc.

Alarm - can mango dx asd? I thought she was more salt related? Ideally I want someone who knows about asd and girls.

Yes, she dx'd dd2 earlier this year. She is particularly recommended for subtle and complex girls/ASD. She was not cheap, but she came down for the day - spent a good 4 hours+ at dd2's school, observing, talking to teachers and carrying out various tests. She then spent a couple of hours with us at home going through history/extra info etc.

I had the follow up report within a month, and it is comprehensive, and hits the nail on the head.

How much was she alarm? And was she relatively easy to get an appointment with? I had assumed we would go to her but good if she would come to us and go into school

It was about £1600 all together (visit+report).

She was easy to get hold of - returned my call within the day. I contacted her at the beginning of Feb, and she saw dd2 mid-March, so really quick. I don't know if this is a typical turnaround time or not, but I had the impression that it wasn't usually months to wait.

I liked the fact she went into school, as school were not seeing what I knew was true, and so to have had her go ina nd talk to staff, and point out a few things was invaluable. For them to then read her take on the same day they had observed was also worth it's weight in gold.

She sounds like she could be helpful and is not too far from us in reality. I am going to out my cards on the table with the class teacher today. Well also need to brave dh about the cost as well. Looks like I will be pulling the belt in to pay for it.

MS = Margo sharp

I already had an appt with Margo arranged and so DS1 saw Margo and DK in the same week. DK does not do any assessment - the consultation is itself diagnostic. MS did the DISCO.

At tribunal and before the LA tried to challenge the diagnosis - they had to do this via their EP as the comm paed agreed with the diagnosis. It was important that DS1 had seen all the different profs that would be involved in muti-disciplinary assessment following the NHS route.

Margo is also great. She was a witness at tribunal but never got the chance to speak.

We took both DD and DS to Daphne Keen and were really pleased on both occasions. We initially took DD to see her last year because DK seemed to be an expert on difficult cases and girls with ASD in particular.

Both children present in non text book ways and we had been doubted by both NHS professionals and schools before. DK took our concerns seriously and asked a lot of detailed questions about both children and wanted lots of specific examples. Her reports were extremely thorough and very helpful.

In DDs case there were lots of detailed reports from other professionals that DK read carefully and which helped her draw a conclusion. However she was still in some doubt about the most appropriate diagnosis for DS and so referred us to a Psychologist for a second opinion. This took the form of a three hour detailed cognitive assessment.

The DK appointment was just under £800 I think and the psychologist assessment was around £650.

We did have to persist to get both appointments but in the case of DS this year there was only a small delay in getting an appointment confirmed and a follow up one was easy to arrange.

However I know DK is away for a few weeks now so that may cause some delays.

I hope this helps

Thank you bloss , that's really helpful

We used Margo for tribunal. My dd had already been diagnosed but there are no multi disciplinary assessments here so her speech/language had never been assessed. I've got to say she was worth every penny and more to us! She identified DD's complex profile and her report was amazing.

We're looking at getting her back for ds 7 who no one can decide what's going on and his proposed statement is rubbish.

margo sharp secretary has been in touch so going to fill out the paperwork and send her everything I have and see where we go from there. just need to sell a kidney first to pay for it

We had to do a lot of soul searching to come to terms with having to pay so much money for something that we shouldn't have to pay for.

After the assessment the relief we felt at finally getting answers (dd was 14) was unbelievable.

I am still angry though that we were put in the position where we had no choice but to spend more or less every penny we had identifying dd's needs and fighting for a school that could actually meet them.

I know sazale - and that's how I feel with my daughter but I don't think the NHS will help her. I re read our tribunal order last night and they comment a lot on the SALT report we had done as in some parts she was age 5 and she is 10. the tribunal basically allowed the appeal so all of her needs could be looked at and all the LA are doing is getting the EP in who is just using her old EP report weve paid for already. so they have no intention of doing anything more but the minimum.

theres been no referral to SALT by them or a suggestion they will get a report - maybe they were leaving that to the EP to decide but given hes only doing the minimum as well. I was in two minds whether to try and get her seen before the end of this term or wait to next term in sept but have decided that to if she can do it do it sooner so I can put the report in for this assessment so if they still try and issue a NIL after getting a report they will again look like idiots and it will show the tribunal that yet again they refuse to identify all of her needs - if it heads to appeal again I will still need an indie EP report as well. so if im going to have the report done sooner it means that lots of things ive had planned for the kids are now not going to happen and think we will have that for the next year whilst I then no doubt save up for another appeal - I was hoping to finally get my new kitchen next year but that now feels like a distant dream again.

could you please send me Daphne Keen and Margo Sharps contact details? I urgently need to get my daughter assessed for AS.

Many thanks

I am in the same position - we are on a low income and all of dds dla has gone towards the cost of indie experts for tribunal. dd would benefit so much from us having a car as she doesn't manage public transport well and melts down. yet we simply cant afford this option due to the costs involved with the appeal - it makes me sick.