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Here are some suggested organisations that offer expert advice on SN.

Private diagnosis?

(30 Posts)
weakestlink Wed 03-Aug-11 13:43:14

DS has been referred to Child Development Centre with possible ASD. They say they are very busy at the moment and he will not be seen by the peadiatrician until December sad

Our private health insurance company are willing to pay for diagnosis of his condition but I cannot find any information about private options (if there are any!) online?

We are in th SW but will travel anywhere as we have done in the past.

Can anyone help?

catherinea1971 Wed 03-Aug-11 14:11:32

Hi, have you tried the NAS I believe they have a list of private specialistssmile

Helzapoppin Wed 03-Aug-11 15:39:43

May be worth checking out the London Children's Practice. They ma be able to help.

sickofsocalledexperts Wed 03-Aug-11 17:19:28

Dr Daphne Keen is a good one for a private diagnosis - we got it on BUPA, but nothing beyond diagnosis. She is good because she is also a top NHS doc, so it's harder for the LA to poo poo her diagnosis! She is in London W1 and Tooting hospital I think. You could google, I think it is Wimpole Street, W1.

weakestlink Wed 03-Aug-11 19:27:12

I did try NAS today but they were so busy I couldnt get through!

Daphne Keen is perfect - thank you so much - just checked with our insurers and she's 'on the list' smile I will make an appointment as soon as she's available. Fantastic! Thank you again!

coff33pot Wed 03-Aug-11 20:34:47

How much does it actually cost? I dont have insurance so it will be straight from the pocket smile I am curious to know as have been trying to hunt a private psychologist down. Have rang camhs and have rang GP and none know of anyone in the SW area at all. GP even said to look outside SW but have to make sure they use same methods???confused

sickofsocalledexperts Wed 03-Aug-11 20:39:04

I think Daphne Keen diagnosis was £800, but that was years ago. It is pricey, but we were being quoted a 3 year wait on NHS - unacceptable when every months counts! She is lead autism expert at NHS hospital though, so you should get no argument about her "methods" not being NHS methods!

weakestlink Wed 03-Aug-11 20:43:50

Remember also that consultants have agreed rates with the insurance companies so might charge more to "self-pay" patients....
I am SW too - Devon smile

coff33pot Wed 03-Aug-11 21:14:11

Thanks for the info guys smile I did expect it to be in the region of £1000 to £1500 ish.

weakestlink I am right down in Cornwall and there is nothing at all here either. The GP told me to start ringing around Plymouth hospitals first then then go upwards......great help she was .........not.

The only thing that is holding DS dx is the lack of a psychologist being a major part of the multidisiplinary team. He needs to be assessed by one to come to the overall outcome of what issues he has. They have been trying to employ one for most of the year now. There are more interviews soon but have been told there is then months of checks they have to do on the person chosen. Which is understandable of course. But they did say out of the ppl applying they may not find anyone suitable. Locum was going to come down but changed mind and was re routed somewhere else. Salary plays a part I am sure as the SW are poor payers.

My DS is by no means the only child in limbo either. Its just sad, so much for early intervention hmmm?

weakestlink Wed 03-Aug-11 21:22:44

My GP says the same coff basically I find the consultant and he'll write the referral! It was the same for DS's grommets. He didnt even see DS he just spoke to me on the phone. Fair play though he is lovely and I got what I needed.
See you in London! grin

justaboutWILLfinishherthesis Wed 03-Aug-11 21:41:25

Message withdrawn at poster's request.

LeninGrad Wed 03-Aug-11 21:49:08

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weakestlink Wed 03-Aug-11 22:13:25

No chance of therapy of any kind for an ongoing condition but ours pay for diagnosis of any condition as long as you can get your GP to refer you.

3 months sad

LeninGrad Wed 03-Aug-11 22:17:23

Message withdrawn at poster's request.

weakestlink Thu 04-Aug-11 07:34:33

Who are your insurers? I just rang mine yesterday and explained the situation and they said no problem just find a consultant and get your GP to refer.

LeninGrad Thu 04-Aug-11 09:14:22

Message withdrawn at poster's request.

justaboutWILLfinishherthesis Thu 04-Aug-11 09:18:23

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LeninGrad Thu 04-Aug-11 09:24:55

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justaboutWILLfinishherthesis Thu 04-Aug-11 09:35:47

Message withdrawn at poster's request.

silverfrog Thu 04-Aug-11 09:48:56

one of the main things I would change about the way we did things would be to seek a private dx, tbh. it took us 18 months to get dd1's dx (more if you calculate from when I first went to hv with my worries - that takes it to 2 years), and she was a clear cut severe case (ie when we first saw a paed her only activity at home if left to her own devices for a second was to sit and scratch the same place on the wall - until her fingers bled - she had no functional communication, little interest in the outside world, no play skills, a whole host of sensory issues etc etc.

the dx system is a complete joke, and if you have the ability to go private do. I think I thought at the time that we woudl just get the same treatment (ie a "go away and see what happens over the next 6 motnhs") only in posher surroundings with free tea and biscuits grin

sadly the fact is that the only way we have ever got anything halfway decent done for dd1 is to go private - SALT, OT, dietary issues - the whole lot. all we ever got told on the nhs was either "wait and see" or "we'll do an assessment" (with no outcome from the assessment, no plan of action, not even any concrete reports, tbh) followed by "we're discharging dd1 now, as she has been assessed" - load of tick-box nonsense.

LeninGrad Thu 04-Aug-11 10:15:40

Message withdrawn at poster's request.

justaboutWILLfinishherthesis Thu 04-Aug-11 20:12:44

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LeninGrad Thu 04-Aug-11 20:29:59

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justaboutWILLfinishherthesis Thu 04-Aug-11 20:49:11

Message withdrawn at poster's request.

silverfrog Thu 04-Aug-11 21:07:36

if it helps at all, Lenin, I htink once you start to get even part way through the haze, and begin to sort out stuff, the past horrors do fade.

I can barely remember the days when dd1 was scratching the walls. in a way this makes me sad (that I don't remember a large part of her baby/toddler years) but it is a defense mechanism. I remember instead the cheeky grin, the communicating via songs (althoguh I try to blankout the entire weekend where dh and I had to converse to the tune of Frere Jacques! but even that we are able to ruefully laugh about now, when at the time we were so very close to giving up entirely), and the major triumphs - dd1's first clear word ("water", said to ehr godmother, in the back of the car at about 6.15pm on a Wednesday - see the good bits do really stand out!), her love of the slide at the playground - little things, yes, but little things form which grew the girl that isnow dd1 - the lively, cheeky, happy, relaxed dd1.

I only remeber the real shit when I have to - for case history, or official forms etc. the liquid phobia so severe she stopped drinking. the sensory issues so bad she could not stop screaming after coming into contact with a hated substance (literally screaming for hours - she would carry on crying out and sobbing in her sleep) - it is so hard for me to even remeber these things it is like they happened to another person/family and I have only heard about them, if that makes any sense?

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