How did you go about getting a second opinion? If needed.

[snowgirl29]

I've not heard back from DKs PA. I was told to go through GP then through PALs. Someone today told me they went to the Paeditrician themselves and - - told them they were rubbish-- and asked for a change.

If you sought a second opinion how did you go about it?

[2boysnamedR]

Via my gp. My named gp in the practice. Also via my younger sons pead. I pointed out the nice guidelines on asd criteria and how it hadn't been adhered too. Mind you I'm not sure it worked! I see a pead next week, have a sneeky suspicion it's the last useless one I saw before

[2boysnamedR]

Plus I'm not pursuing it as I did get to see DK in the end. Not rushing to tell the nhs that! Don't want to cut my ties if things get worse when he gets to 11

[snowgirl29]

Ah I See. My GP won't do it.

[bitbap18]

I contacted the head of service in charge of the paed I was complaining about. He sorted it out and passed us over to a psychology team....hey presto we have the diagnosis that the paed should have made! Been allocated a different paed now.

[KOKOagainandagain]

It depends where you are/have halted in the assessment process. DS2 was originally seen by the same paed that said (with school) that DS1 was 'fine' and did not need an ADOS. (Hence DK and MS. NHS have since accepted diagnosis but only because they were directly asked by the LA pending tribunal.) Dismissal before assessment is the hardest to fight from within the NHS. The cynic in me would say that if you don't identify a need, it is not necessary to meet it but the NHS do bugger all following diagnosis anyway so it must be the cost of the assessment itself.

When DS2 was referred the paed kept mixing up DS1 and DS2 - names and histories - and so we complained to PALS and, as this was not a matter of opinion, was seen by another paed in the team. Expert medical opinion, even when formed quickly after a brief meeting, always trumps parental opinion. The GP won't be able to specify which member of the team sees DC but can only refer to the clinic. The hospital doctors will allocate case load. The local team will decide if full assessment is required.

But the GP can refer to another team if full assessment is inconclusive. Before the ADOS the paeds thought it most likely that DS2 had an ASD/but could be ADHD. After ADOS they said he didn't meet the criteria for ASD so they have gone for ADHD with social communication difficulties.

As he had already been assessed with the ADOS we were able to ask the GP for a referral for second opinion to GOSH (national centre of excellence for HFA in the m/s) as we had exhausted local expertise and sought clarity. This was helped by the fact that in these parts autism outreach can only be accessed if DC have a firm NHS diagnosis.

Could a re-referral come from another paed service - SALT or OT?

[snowgirl29]

Thanks for all the advice everyone. SALT ready to sign DS off! I tried contacting the OTs they weren't interested in the slightest. It seems having a dx allows you to have certain doors open to you that as yet, we can't access.

Keep Im honestly not sure what stage we are at.Paed was on board with us right up until they got the 'Ds is fine for us' report from School . They were ready to sign him off and the only reason they didn't is because when I was given the option of discharging or one last appointment I chose the latter.
DS says lots of challenging things which led to NHS England getting involved and the more I think on it the more this Paed NEEDS to be reported. I showed them the behaviour diary of six months worth. (including all the stuff he says which you can all imagine!) it was quickly glanced at and then put back down.

[snowgirl29]

I was told I had to write a letter of complaint to PALs. Could I ask you mumsnetters how you would word this letter?
The person at NHS England said to highlight what happened, and then state impact it has had on family as a whole.

[KOKOagainandagain]

tbh I had no option but to seek private dx for DS1 as paeds would not assess because school said he was 'fine' and he had been seen and discharged by SALT and OT 2-3 years earlier and they would not accept re-referral without a dx (because the NHS services don't do sensory integration even with a dx or even social communication for DC that mask, pass for NT and are 'fine' at school).

I have only been able to stay within the NHS with DS2 because he has articulation/pronunciation difficulties and has been seen by SALT for the past 6 years and gross and fine motor difficulties and has been seen by OT for 3 years, he does not mask and school are not able to pretend that he is fine.

When DS1 saw DK he had already been seen at the GOSH APD clinic and he had a diagnosis from MS. DK relies on the reports of other profs and does a diagnostic consultation rather than formal assessment.

NHS does not have to do ADOS to diagnosis but do in these parts. This is given more significance than multi-displinary feedback (SALT, OT, EP). MS and GOSH use the DISCO assessment which is much better in terms of picking up DC that mask.

Have you tried filling in the CAST questionnaire with a list of real-life examples? This may help in 'Talking to Professionals so that they Listen'. I believe that the Lorna Wing Centre now takes private referrals from parents and, of course, uses DISCO to assess complex cases.

[snowgirl29]

That's what I've said about DSs ability to mask how he's feeling. I read the Lorna wing centre now accepts referrals but to be fair I didn't know when originally applied and DK appeared to be the cheapest.

[snowgirl29]

Where do I find the cast questionnaire?