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Hello, Private diagnosis funded by NHS?

Ellie's Mum and Dad

Hi everyone, its Ellie's Dad here. Ellie is 6 years old and has undiagnosed autism. We are dealing with escalating violence, self-harming behaviour on a daily occurrence. We noticed her behaviour was different when she was very young and dealt with it since. However, over the last 2 years, things have escalated beyond our 'control'. Don't get me wrong I can keep her safe by restraining her and keeping her in a safe environment but this is far from ideal. We have been on numerous courses, ASD, ADHD, timeout for parenting etc, but very little works. Ellie's triggers are very hard to pick up, almost anything can trigger a meltdown. She will go from 0-60 in a matter of seconds giving us very little time to distract her. She will become over whelmed with anxiety and dart from room to room leaving destruction in her path. She will flap and look fearful as she looks right through you. Nothing you say or do will bring her down, its just a matter of riding out the storm. However, after she will come and apologise and tell us she hates herself for being Ellie. She will cry her heart out. On numerous occasions she asks us to "die her" or she will kill herself. This is all very disturbing for not just ourselves but for her two siblings. Just the other night he tried holding a black bag over my face when in bed. Its coming to the point where we're afraid to sleep. CAMHS seem to beleive Ellie is in complete control as she is able to mask it at school (she is described as a qiuet, withdrawn child at school), however after speaking to a psychiatrist today at the local ASD droppin, she completely disagrees with CAMHS. So as you can imagine two conflicting views by two professionals. We just want Ellie to be happy and get the help she deserves. It was suggested to us that a private diagnosis by the Lorna Wing Centre in London could be a possible route, however, no doubt at a cost. It was suggested that if we got a referral from the GP the (?)clinical governance group(?) may fund it?. This is where I am stuck and need some advice and opinions please. thank you

  • Thinking more about it even if you can convince your daughter's gp that she may be autistic the local diagnostic pathway may be through CAMHS and if they are not prepared to refer her you may be stuck.

    I don't know what to suggest if this is the case other than to try the nas helpline.

  • Diagnosis pathways vary from one clinical commissioning group to another.

    I was lucky and I was diagnosed by a local NHS unit because my local ccg had decided to set up the unit.

    I have also been treated privately for my haemorrhoids at a private hospital paid for by my local NHS because of the length of the waiting list at the local NHS unit.

    It is possible therefore that your local ccg would pay for a private diagnosis if there was no local NHS service or there was an excessive waiting time. I doubt you would be able to specify a particular private service they did not offer you but if they are prepared to pay for a private diagnosis you could always ask if you had reasons for wanting a particular private service.

    You need to see your daughter's gp, tell them you think your daughter has autism and ask for her to be referred for a diagnosis. If you have not already done so it is a good idea to do some basic research and be able to tell the go why you think your daughter has autism. Gps are basically gatekeepers who decide who gets referred for a diagnosis and who doesn't so you need to be able to convince them to refer your daughter.

    hope this helps.

    good luck.