pros and cons of private diagnosis advice needed

I received my diagnosis of dyspraxia, privately. There were good aspects and bad aspects, I think psychologists are hard to communicate with, they did not appreciate and use my background information. I had a cheap deal with a trainee psychologist and a qualified psyschologist. I think the organisation was biased towards children. I felt like being treated like experimental data.

You would think it would be in the interests of the organisations providing private diagnosis (Like Cambridge - £1000 plus I believe?) to do something to ensure that their private diagnoses are acted upon by the NHS.

And who Chaired the committee that set up the NICE guidelines for adults with autism?

The obstructive behaviour of some NHS staff over private diagnoses is inexplicable, and in terms of the harm it does to affected individuals it is unethical.

Particularly if you consider the health service organisations that got the recent funding to develop adult autism awareness training.

Just to add, that they cannot refuse to help your child, what you would do, is go to your GP with the private diagnosis and ask for referral for support from CAMHS/CDC/whichever service and they write the letter.

My own diagnosis is private and my GP has recognised it and put it on my health records.  Having said that, the NHS refuse currently to recognise it (even though I have overwhelming genetic, brain scan and medical evidence as well as the independent opinions of 3 separate professionals - one a top UK ASC expert) and for which I exhausted a PALS complaint and am pursuing a PHSO complaint currently.  Basically this was because the NHS failed to diagnose me previously (only citing autistic behaviours) and they don't want to admit they got it wrong.  They have also lied about the assessments and have colluded to do so.  It's just an example of what employees of the NHS can be like, and some clinicians have a God complex and will try to bat people away.  But my situation is different and your son hasn't been assessed so you won't face the same scenario, just be prepared to go well-informed just in case they do take that attitude.  And you can always say "fine, if you don't recognise the private diagnosis perform one yourselves".

What I mean is, some (not all) clinicians will give you an attitude about it.  For instance, when we were waiting for CAMHS to see my eldest, they told me face-to-face (and this is the senior clinician for our area) that the NHS doesn't recognise private diagnoses.  However, I had it in writing by email from PALS that they do, the only issue the NHS could have is with a particular course of treatment being recommended by a private person that the NHS either doesn't fund or recognise as a valid treatment.

I have read of adults getting private diagnoses and being told that they wouldn't recognise it.  But unless people know to challenge it they will accept what they are wrongly told.

The NHS even has policies on it (this isn't specific to autism and refers to treatment but the rules are the same): http://www.nhs.uk/chq/Pages/2572.aspx?CategoryID=96&SubCategoryID=226

thanks for ur replies everyone i love this forum and chatting with everyone its just a relief to know the people on here understand u and know what ur going through, intense world in a little confused my fault not urs i find it hard to process information sometimes, so if i get a private diagnosis the nhs might not help because they didn't diagnose him?? Unless i point out the nice guidelines?

The only down side that I know of (apart from the cost) is the NHS challenging the diagnosis.  Having said that, their own rules state that they do accept private diagnoses (and NHS NICE Guidelines do not state that for follow-up support a diagnosis has to be an NHS one) although many clinicians are misinformed and you may have a battle until you prove that their challenge is wrong.  If you are prepared to stand your ground and educate them on the facts, then go for it.  Just because they say something doesn't mean they are right and there is something delicious about putting snooty doctors in their place by being well-informed.

Hi donnzmail

This is not unusual, I had exactly the same issue with my daughter, she is now aged 19 and the closest we've come to a diagnosis is she that she is described as having Asperger Syndrome "Traits", I would love to have her privately assessed. She is currently unemployed and has communication issues.  It makes my heart bleed because I know how she is and I know how the outside world perceives her... 

I know of a friend of mine who paid to have her son assessed and he was diagnosed at an early age. I wouldn't imagine there are any downsides as it's far better for children to receive a diagnosis to receive help, the earlier the better.

It is sad isn't it that the NHS is letting so many children slip through the net and I personally wonder why this should be?