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Diagnosis and waiting lists

KazKaz

Hi everyone

My son was referred to a pediatrician to be assessed last year. We were told it could take up to 12 months to get an appointment which we accepted as we know there are long waits for everything. When it was chased up after that time we were told that they had no record of it at the hospital. Now we have referred again (having to wait a month for a gp appt for them to refer-last referral came from educational psychologist at nursery I think) we have been told it is another 12 month wait then potentially a longer wait if he is diagnosed with asd and/or adhd to see a specialist. 

I am wondering if it is possible to bite the bullet and pay for a private first appointment? Has anyone done this? How do you go about it and is there an approximate figure for how much this will cost. 

We don't have a lot of money but I don't want him to have waited 2 years just for 1 appt. 

Thanks

Kaz

  • Hi there,

    Just to share my experience of looking into a diagnosis:-

    • I have been quoted a figure of £3000 to access this privately
    • In our area there is a 3 year waiting list to have an NHS assessment
    • It may be worth speaking to the Educational Psychologist affiliated with your child's school to find out whether a private diagnosis would be accepted at school

    The system is shocking especially when it's affecting people who are already struggling. 

    At least when you have a diagnosis, you will be able to access other relevant support.

    Good luck.

  • Hi BIGMOG 

    Thanks for the information. I've started looking into this on another site and it is suggested that it is a misconception that local authorities won't accept the diagnosis. Especially from a specialist who also works through the NHS. 

    I'll stay on the nhs list as well but for me the main thing is that we can let the school know what help he may need. They are very on the ball with SEN issues and are already trying things with him. 

    Thanks Karen again for your advice

  • Thank you for your help and information Trainspotter. 

    I think this is something I will look into. I feel that at his age it is a really significant time to get the right diagnosis as he is already having some difficulty in school even though he has the intelligence to be doing better. I want to get the info the school could use as soon as a possible to help him from the start of his schooling. 

    Thank you again. 

  • I had a private diagnosis, but I am well past the first flush of youth. I could not wait the length of time needed as my being autistic was causing me great problems at work.

    The psychologist who diagnosed me did both private and nhs diagnoses.  Although the price was a lot it was money well spent.  If you want to look into the possibility of a private diagnosis, you can get a list of some who do this from the NAS.  Contact some, explaining your problems and asking for an estimate as to how much this is.  Figures of from £200 to about £1000 and ore are banded about, I will not say how much I paid but it was towards the middle of this range if that is any help to you.

    As to a private diagnosis not being accepted, I have never had any trouble.  My employer accepted it, Access to Work (a government scheme) accepted it, and so has everyone else from whom I have needed help.  I did get a report from the psychologist which was very thorough so that may have helped, so be sure to say you want a full report as well as a summary report which states the main ways in which your son is affected as well as suggestions as to what help may be required if you decide to go private.  Such a report would be very useful to you whether private or nhs.

    Anyone suggesting that a private report is not acceptable is also doubting the professional integrity of the assessor.  Just check beforehand that the person who is doing the assessment has sutiable qualifiations and registrations for doing the diagnosis.  Even consultant psychiatrists, I am led to believe, may not be necessaserily competent to diagnose autism.  You might try contacting NAS to see if there is someone in your area who can diagnose Autism privately (helpline).  There are some listed on the website here:  http://www.autism.org.uk/directory/browse/cid=80~aid=6.aspx

    By the way once I had decided finally to go private, I only had to wait six weeks, and this could have been a lot shorter had I had more flexibility myself in choice of dates.

  • Thank you for your reply :) 

    Are there bit pediatrician who are both nhs and private? I know my mum did this for a different issue (she has spina bifida) she had a bladder issue and for the initial diagnosis went private to the nhs specialist and then went back to the regular wait list for treatment. Does nothing similar happen for this? Just very frustrated that after a year of waiting they 'lost' his info so now I'm back at square one. 

    Thanks again