Prof. Skuse at GOSH

[OMGGG]

im thinking of getting another private or possibly referred if i can assessment for my ds. it would seem the current one is some kind of disagreement with nhs paed although we are still progressing through to CDAC.

i want to see someone who i know is so highly respected in their field that paed will not quibble on basis thst school are influencing her thst nothing is wrong.

has anyone here plesse seen professor david skuse at gosh

Hi
we saw the team at GOS although not specifically Prof Skuse but he did view the ADOS video that was done on DS. They were an incredible team..thorough, supportive, unbiased...we still see them occasionally as we are involved in their pegasus trial. The reports are incredibly detailed with a social/communication and a cognitive assessment. The weight that the GOS report has had has been phenomenal...statemented, exceptional needs funding...19 hours of 1:1 support. They challenged the local EP who said DS was working at normal levels and sent her scuttling off...all in all highly recommend. We didnt see privately but NHS so free to boot!
HTH

oddgirl, I have a mental image of the local EP scuttling off

lol me too and serves her right!
im trying to get referral to gosh
thanks

sorry forgot to ask..did you get nhs referral for a second opinion?

How do you go about getting a nhs referral? My pead says I may never get a Dx so I do think I get past her? Should I go back to my gp? Bypass her? I see her again in October.

Yes..cant resist a smug smile when I see EP round the school!Clinical psychologist from GOS actually went to her office (no idea what conversation they must have had). Team from GOS came to the school to do observational work and also attended a meeting with SENCO, HT etc. Because they have no financial axe to grind, they can be truly the childs and parents advocate. I knew DS was struggling cognitively but his incredible memory meant he appeared to understand far more than he did but when GOS unpicked it all, it became very clear that he should be classified as having mild learning difficulties.

To get to GOS you need a secondary referral as its a tertiary centre. So your GP cant refer you. However, the approach that worked for us was for me to go to local (useless) paed and have a nervous breakdown so to get rid of the mad woman in his office he agreed to a second opinion. You are perfectly within your rights to ask for a second expert opinion. Waiting list at GOS not too bad either.
HTH

so im guessing you already had a nhs dx? or no dx? and didnt agree.
our private phys said i could ask for third tier referral and i should go to dr skuse.
do i have to ask our current paed. she
makes me feel about 1cm small.
i have private dx and currently waiting for ados at communications disorder clinic. however paed is being heavily influenced by school who apparently told her ds diagnosis is wrong. paed has suggested now that ds is just shy.
i feel pretty confidnet this is not the case.
will i offend the paed if i ask her to refer me? im guessing i will.

local paed may say she is giving us a second opinion as it was my choice to continue through nhs after private dx.
if nhs local team are not agreeing then i guess i have more of a case for referral to gosh if i have one private dx and no or different nhs dx
however it would be a long process and if i can get to gosh sooner that would be better.
i have to get the paed on side tho to agree - impossible!

Well you might offend her but to be honest who cares? GOS specialise in children who are difficult to diagnose. DS didnt really have a robust diagnosis from local children centre although he is probably more obviously ASD than your DS. It takes real skill and experience to unpick the issues and for us GOS were able to do this and form a clear accurate diagnosis with no quibbles. Their school visit meant they could do a clinical observation on DS and just smile nicely and politely at all the teachers who said "...but he`s just a bit quirky..lots of boys are like this...WE dont see a problem...must be that mad march hare of a mother DS has landed himself with..."
Dont be put off by offending people...as my DH said at the time...we had spent many years being offended by what the so-called professionals were saying and they didnt seem to care about upsetting us...

oh so true , so true.

my ds is hfa (private) so yes def not very obvious eapecialy to an untrained eye.

maybe i should call her and ask if i could request my second opinion is carried out at GOSH (rather than with them) as i feel it is a complex case.

they may be relieved not to have to spend the money afterall through local cdac.

its very strange as paed was very impressed with private report and said well you have your dx what would you like to do now and i said go through nhs for nhs dx.

she looked a bit stunned but agreed.

now all a sudden after chat with SENCO ds is just shy and dx is ungenuine.

lets hope he is just shy but i want to make sure there are no biased or influanced views or things missed that are complex and not straihht forward
thanks for your info

gosh said gp can refer....

do you think nhs local team already involved with da would accept private dx from gosh as credible. if we failed to get the whole team through nhs. if u go private u get the same assessments by prof skuse and lucy wright brown and sch gets massive questionnaire rather than them observing at school. no salt involment. is prof skuse dx alone enough i woukd imagine so would you given his credibility in the field

Be upfront. Be polite, but clear. Tell dr that you wanted their expert team's NHS opinion, not because you doubted your dc's ASD, but precisely because you feared that school would ignore the private dr.

You wanted the diagnostic opinion of health professionals, not that of the SENCO who (in your personal view, knowing her well ) is an ignorant meddling old bag. Remind the dr that the visiting psychologist's classroom observation identified 'traits' which school had not spotted.

You could even say that if their team routinely relies so heavily on the opinions of untrained teachers, then you need an onward referral for your dc to be seen by GOSH instead.

Dr Skuse retired from gosh. Any thoughts in this anyone?