Treatment for under 18s

[MauveWoman]

I am based in Buckinghamshire and have spent 8 months trying to get any specialist FND treatment for my child. The neurologist saw them once to diagnose them and then discharged them. When I gave up on our GP and contacted PALS, the initial response was, they are already known to CAMHS. I pointed out (as instructed by CAMHS) that that is not what they are known to CAMHS for and that our local CAMHS service is not commissioned to provide FND support. CAMHS also pointed out that psychological support is only part of the FND picture and they are not an MDT so not the most appropriate people to provide FND treatment. (So three cheers for CAMHS on that point. I am so fed up of people who don't recognise the complex and physical reality of what is going on for my child). Eventually, PALS contacted the paediatrician who tried referring, only to be told that the only FND treatment provider in Bucks doesn't see anyone under 18. I can't find any providers from my own research that take outpatient referrals from Bucks for 16 year olds with FND. Does anyone have any ideas who I can approach next?

[Lady4]

There is a place in Bristol but and think can except GP referrals, it has an inpatient programme but I think it depends on the severity, symptoms etc and how long your child has had it.We had no help just one neuro appt a year later (plus a few physio) and still waiting for referral to "talking therapy", found out the other week that the letter following consultation may never have been done (July 23), not a happy bunny.

Crazy eh, hugs.

[Shimmyaway in reply to Lady4]

I am currently having 'talking therapy' as part of an FND programme (= 6 sessions)from an occupational therapist, who admits she has nothing up her sleeve for me, in fact she said she has no sleeves!! As you will know from ' The body keeps the score' , our brains learn and heal from experience not jabber, though I appreciate some FND sufferers are not able to go out and get the sort of experiences advised by B van der K..and which are certainly not part of this FND programme.

[210272]

Hi MauveWoman,

This diagnosing and discharging malarkey needs to stop, especially when children and young people are involved. Dawn at FND Hope UK may be able to help with signposting via the clinical pathways but I feel the FND roundtable podcast members are as out of touch with the daily issues faced by families of children with FND as they are with the unmet needs of adults with FND.

If you don't mind me asking, what rationale was given for the FND diagnosis in the first place?

I really hope you and your child get the support you need and deserve very soon.