NAS Lorna Wing or Great Ormand Street? Help please!

[HerNibs]

Hello All,

We have made a complaint about the paediatrician who failed to diagnose ASD in my older son and was again failing to see DS2 numerous issues. We requested assessment by another Paed in our trust. I have just had a call from PALS to say that the referral has been rejected and he will not be assessed by anyone within our trust...

They have suggested a tertiary referral to Great Ormand Street which we would welcome but I would also like to hear if anyone has experience of the NAS Lorna Wing Centre. My GP will be the one to action this new referral and I know will be open to discussing options. Any thoughts or opinions of either or both would be most welcome.

Thanks in advance

You might have a problem here. GPs are primary care workers and are only allowed to refer to hospital doctors/clinics in the secondary care sector. Tertiary referrals cannot come from GPs but must come from hospital doctors (ie the paed). Did the paed refuse to refer on for ADOS/assessment or was the assessment borderline or negative?

I would check whether the GP can refer to GOSH or Lorna Wing.

Hi, thanks for your response.

The paediatrician in question refused to assess ds1 and maintained over 2 years his issues were due to dyspraxia and low self esteem. She refused to refer us to camhs entirely for ASD assessment. We finally found a private psychiatrist, who with the help if our GP got us seen by CAMHs. DS1 did have ASD and his diagnosis was swift and straightforward.

Fast forward to July, DS2 was seen by the same paediatrician who couldn't/wouldn't assess ds1. Despite evidence from school, home and educational psychologist (as well as family history and her spectacular failure last tine) she decided to ignore ASD as a possibility and pursue ADHD investigation. She said if he scored high enough on the Connors scale we later completed, we could look at medical management...

She subsequently lied and omitted crucial information on the consultation report to fit her agenda of investigating ADHD.

We wrote a lengthy complaint and requested that DS2 be seen by another paediatrician at another hospital in our PCT (or whatever it's been rebranded as now!)

A week ago We received a lame half apology letter following their investigation and were told an appointment at this other hospital was on its way...PALS called today to say that the head of paediatrics had rejected the referral and sent a letter to our GP recommending a referral to Great Ormand Street...

And that's where we are...apparently 'blacklisted' for making a complaint about a lengthy catalogue of errors.

I'm so bloody sick of fighting for everything, every step of the way.

Any ideas what I do now?(asides from a large glass of wine when the kids go to bed!!)

Thanks again

The Lorna Wing centre is excellent. I diagnose autism in the NHS and private sectors, I trained at the Lorna Wing Centre, Judith Gould taught the course.

She is the business.

It could be that Paed 2 feels he/she doesn't want to tread on the toes of Paed1 but is happy to deflect to appease everyone and avoid confrontation refer on. Hopefully this will be to the benefit of your ds, OP. Sounds like you really do need that glass of wine

Hi

Do you mean the Lorna wing, which is a clinic known on the national autism site?

I know they do not do second opinions there... but I heard that you can self refer or get your local GP to refer you.

I think they are rather wonderful.

As far as I know, your gp can refer there but funding is increasingly problematic/patchy.

Hello All!

Well since my original post we have been all around the houses! The Lorna Wing centre agreed to accept ds2s referral-brilliant! However getting our trust to agree to funding there-impossible! Just before Christmas our GP re approached our local CAMHS and they have now seen and assessed ds. We are just awaiting the diagnosis report... If local CAMHS don't diagnose we will ask for a tertiary referral to GOSH which can be done via the 'choose and book' facility apparently...

While we have been passed from pillar to post DS2 has been on the receiving end of highly inappropriate behaviour from his teacher (she left before school could carry out an investigation...) has been bullied, has no friends and his anxiety over going to school results in me taking him in crying most days. All such a dramatic change to my quirky yet happy little boy of a year ago...

I despair of the system but am hoping that when CAMHS diagnose I can then force school to recognise his difficulties and put more support in... Hoping reports will arrive soon as I'd like to get SA request into LA ASAP but am lacking on the evidence front right now.

Thank you for your feedback on my original question, sadly nothing is straightforward when it comes to sorting out my boys!

Hernibs Comparing the ASD knowledge of your local CAMHS and that of the Lorna Wing Centre is akin to comparing a Lada with a Porsche. Some CAMHS do eventually make a diagnosis but on here we also hear about many who faff around for weeks/months/years without making a diagnosis.

You don't need a diagnosis to apply for a Statement of Special Educatopnal Needs. These are issued to support a child's actual difficilties rather than in response to the stereotypical behaviours associated with any particular dx. Statements are being phased out later this year so if you want to apply for one I would do so within the next 4 hours in an attempt to obtain one before they are replcaed. You just need a short letter to the LA making a formal reuest and stating why and enclosing any evidence you may have. The LA will contact school and anyone else you tell them to, in order to ascertain whether the LA needs to undertake a full statutory assessment.

Good luck with 'forcing' school to recognise his difficulties. A school that has not identified, assessed and supported his difficulties so far is unlikely to be able to do so in the future no matter who tries to force them. A school that is so apathetic about a sruggling pupil is not a suitable placemnet for that child. The Statementing process will identidy the child's problems, describe what support is needed to overcome them and will name a school that can provide that support. That school may not even be his current school.

What my cat said.