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Can I get a second opinion at Great Ormond St

13 replies

sleepyhorse · 15/01/2012 12:42

Ds who is 3.5 and has significant language and speech delay and displaying some other ASD traits is being assessed by paed every 6 months but don't seem in a rush to diagnose him. Just panicking a bit about the whole school thing and getting a statement for him, also for peace of mind just want to know what is wrong with ds. Somebody told me I'm entitled to a second opinion on the NHS and that I should get a referral for great Ormond st as they have a team that will assess and diagnose on the same day. Can anyone tell me if this is the best way forward to getting this sorted?

OP posts:
appropriatelytrained · 15/01/2012 13:00

Hi,

You are entitled to request a second opinion but you have no legal right to get one.

I think it will depend on what you are wanting and whether a final diagnosis has been made or not made. I think there has to be some decision at local level, i.e. that the child does or does not need treatment that you can ask for a decision on. Alternatively, if the tertiary level service at GOSH can provide a service you can't get locally, you could ask for a referral on that basis.

The referral usually has to come from consultant level to demonstrate that you have been seen through the usual secondary (i.e. hospital) level service. But you could speak to your GP about alternatives and to speak to GOSH about the department's referral practises.

HTH

dolfrog · 15/01/2012 14:03

sleepyhorse

At the age of 3.5 the possible diagnosis available is ASD, all other issues con tinue to be part of the natural development process until the age of 6 - 8 years of age the age of maturation when children stop growing out of these types of problems.
That does not mean that you should not seek all the help and support you can get for your DS. If there is a family history of these types of problems via the genetic link then you may have better grounds for an earlier assessment pre the age of maturation.
You could have a look at the CiteULike Group Speech and Language Pathology library for more information regarding the possible specific issues.

willowthecat · 15/01/2012 15:41

It's common for there to be a long period of wait and see when dxing autism even if it is not a borderline case as service available are extremely limited. From their point of view, there is little point in diagnosing autism 'earlier' as this might cause parents to become more demanding earlier in the cycle.

willowthecat · 15/01/2012 15:43

I did what you are proposing (got an ASD x ahead of schedule by asking for 2nd opinion). I don't regret it but it did not change anything or open up any new doors to help or therapy.

appropriatelytrained · 15/01/2012 16:35

Just to add to what willow says. I understand that the ASD team at GOSH will refer back after diagnosis to your local services as they do not offer ongoing support. So, whatever, happens, you might be stuck with your local team.

I think it can help though to feel like your concerns are being taken seriously by people who know what they're talking about!

lisad123 · 15/01/2012 19:02

Had a few people I know do this. There reports are very indepth and been very helpful to everyone. Personally i would.

coff33pot · 15/01/2012 19:32

Hi you can ask for a second opinion but I think you need a final diagnosis decision as such from the Pead or camhs multidisiplinary team first.

Your DS is young and it is ususal for a Pead to keep reviewing every few months or so until they enter school. Once a child starts school and is with peers that the more obvious issues become aparent and more involvment with school reports etc to back you up.

I have got a second opinion agreed but only recently and that was a hard one to get and only after EP reports, camhs involvment, OT involvment and salt involvment. Camhs gave an unsatisfactory diagnosis of he is very "complex" and that is as far as it got but no further support other than suggesting a few social stories but they did agree apart from being complex he carries a lot of autistic traits and now SPD.

I then got the option from camhs that I was entitled to request a second op and had to do it in writing to them stating my reasons ie. I felt I needed my sons complex issues defined, explained and intervention for each complex issue. I also put that I wished them to arrange a second op in Maudsley and could they arrange it, cant they do this or do I go to GP. They of course refused to fund it and suggested a second op within their area, but suggested I went to my GP for referral (I had already approached the GP and suggest you do the same if you get to this point :))

I went to GP. And cried my eyes out, begged, explained and had as much proof in diaries and paper work I could muster. A GP will want to see reports, write ups, final diagnosis and any other things you have put in place before he will consider battling for a second opinion. Unfortunately the mothers opinion is not enough. He also wrote to everyone involved. a GP also has to write to the PCT to ask if they will pay the NHS fees for the referral. To be honest it was a 50/50 chance of him thinking I was a neurotic mother lol and sending me packing.

If you go to GOSH, a GP can refer you but you need camhs as a back up point as they will write to them for them to agree second opinion. (I read this in the GOSH web site somewhere and if I can find the link I will put it here for you. Because once diagnosed they need the agreement of camhs that they are willing to support you will help when it is done.

It could be different in your area and maybe its your Pead that can do a diagnosis.

AND you can apply for a statement without a dx. DS has his without dx. :)

sleepyhorse · 15/01/2012 20:23

Thanks everyone, some really helpful advice...

I have booked an appoint with GP on weds to see if I can get a referral to GOSH but I think you are right coff that I might need support from CAMHS together with the GP's to get it. I will give it s shot. The problem I have is that we applied for a statement and it was turned down last week as not enough evidence at this stage. It's ridiculous, ds due to start school in Sep and he can't talk! I don't think he is too young to be diagnosed as children as young as young as 18 months can be diagnosed with ASD. I need to know what is wrong with him because if it turns out that it's a language problem and not ASD then there is a great school in my town that is a language specialist for kids with speech disorders but you need to prove that it is just a language problem and also need a statement in order to get a place on the ARP at this school. This is why I'm so stressed about it.

OP posts:
brandy77 · 15/01/2012 20:28

Have you checked out GOSH website, its pretty good and has lots of information about their ASD clinics and the referal process Smile

coff33pot · 15/01/2012 20:34

I can understand how stressed you are there is nothing worse that being at the not knowing stage I hate it myself. :)

Has the pead referred him to a SALT for his language? If not I would definately request that as that at least should have been done by now. Does he go to a pre school and has an EP been to assess him?

brandy77 · 15/01/2012 20:38

National Centre for High Functioning Autism

This is a ?Tier 4 referral? national service at Great Ormond Street Hospital (GOSH) for children with a suspected autistic spectrum disorder. Children are seen in the Social Communication Disorders Clinic, which is managed by Professor David Skuse.

The clinic focuses mainly on the assessment of complex cases of suspected autism or Asperger syndrome in children of normal-range or high intelligence. The aims of the service are to determine the diagnosis (if any), and to make recommendations for treatment.

At present this National Clinic has limited follow-up and treatment facilities. However, we will make recommendations regarding appropriate strategies regarding treatment and further management (eg educational facilities) to local Child and Adolescent Community Mental Health Services (CAMHS) or other local specialist services, after our assessment is complete

Referall

A child can be referred by a member of the child?s local medical team, for instance, a consultant paediatrician, child psychiatrist or other medical specialist.

If the referring professional is not from within the local Child and Adolescent Mental Health (CAMHS) team, we will need to establish which local CAMHS team (or, alternatively, community or other paediatric team) will be responsible for the child?s ongoing care after our assessment.

Until the local team has been identified, they have approved the referral to our team, and they have also accepted responsibility for ongoing treatment after our assessment, then we cannot accept the referral. All referrals require the local CAMHS (or equivalent) team's agreement prior to assessment.

If a family has recently moved to the UK, and they have an existing opinion from an overseas specialist, we may accept the referral provided appropriate local specialist services have agreed to take responsibility for the child?s ongoing treatment after our assessment has been completed .

From family doctors (GP)

Families occasionally approach their family doctor (GP) to seek referral for a second opinion regarding their child?s disorder, which has already been diagnosed locally. We do accept referrals from family doctors but only if they are for a second opinion and we have the local CAMHS (or equivalent) team's agreement.

We cannot accept referrals from family doctors if the child has not already been assessed by local services (i. for a first opinion on a suspected case of an autistic spectrum disorder).

It is important, in order to maintain continuity of care, that all referrals for second opinion should come with the agreement of the local service that provided the initial opinion. That service will be responsible for the child?s ongoing treatment. In practice, few local services refuse to give agreement for a second opinion

sleepyhorse · 15/01/2012 20:59

Thanks brandy, that's so helpful....bugger am not going to be able to get second opinion then as I don't even have the official 1st one yet. Every time paed assesses him she writes a report and on the most recent one where she visited him at pre school, the report said SIGNIFICANT LANGUAGE AND SPEECH DELAY AND POSSIBLE SOCIAL COMMUNICATION DISORDER.

Coff - yes he is at pre school and has been going to SALT on and off since last March. One of the speech therapists thinks he has a speech disorder and then another one he saw hinted ASD so I just don't know what to think!

How old is your son and when did your start the whole assessment process?

OP posts:
coff33pot · 15/01/2012 21:42

DS is 6 and its been a year now. There were issues at 4yrs but school/nursery said he is just slow to mature and will get there. He has no speech delay but communication difficulties and social difficulties due to not understanding what people are saying and auditory filtering problems.

It wasnt till he hit YR1 that it all stood out a mile and by that time he was so frustrated he was hiding under the table and being aggressive when they tried to pull him out as the demands on him became too much which I would say it was the behaviour that the school didnt like and that sadly was his gateway to being assessed not any of the other issues. It was only then that people started to look into deeper things (me included as I trusted the school that there was nothing wrong at first and the ususal parental denial)

I dont know what to suggest other than coming down on the pead to spell it out and diagnose that he has speach delay and SCD or refer him to the relevant multi team to have him assessed. Tell the pead that he needs to be assessed by a multi disiplinairy team to rule out ASD to get him into the preferred school. Explain that you need these dx/assessements to help him get a statement for this school or mainstream either way. I would put it in a letter to the Pead as at least your views are logged.

Better still tell the GP at your appointment! Maybe he can at least refer you to camhs himself perhaps to at least get that ball rolling for you. :)

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