Can NHS refuse to assess DS because we already have a private diagnosis?

[WhatsHisChops]

Hi everybody, longtime lurker here due to concerns for DC2's development and all that I have read has been so helpful, I am hoping this continues I am in panic mode now....

DC2 - 2 yrs 7mths, a lovely lovely boy, last week received a private diagnosis of autism (from daphne keen who I know several mnetters have used.) Although I have known in my heart for months now and am relieved to have some clarity and focus to keep pushing for him it still feels like a loss and a struggle to avoid diving into the nearest wine vatbottle. But am determined to stay and act positive and will be canvassing for help on VB/ABA programmes in another post very soon.

But my immediate call for help is ove something today that has completely thrown me into a panic.

DS2 was referred for a Multi-Agency panel for assessment (we are in Surrey) before xmas, we were told the waiting lists were approx 6 mths so took a last-minute cancellation to see daphne keen privately so we could get a view on whether we had valid cause for concern (Basically I was not sleeping worrying over him). So we ended up having a 1.5 hr consultation with her a few days before the MAPP triage meeting to discuss DS2, her view being that he has autism.

I provided very detailed written observations on DS2 to MAPP and ensured there was preschool input also as per their deadlines for input but did not inform them of DK view as it was (a) verbal - we still don't have a copy of the report) and (b) the consultation with her occurred after their deadline for input. HOWEVER, a lady from Portage came to visit us just before the MAPP meeting and I did mention it to her as she said any info pertinent to prioritising DS2's case for support was important as they are oversubscribed. Turns out she was a participant in the MAPP mtg where they discussed DS2, mentioned that we had seen DK for a diagnosis, and now MAPP are saying that they need to see a copy of the report (which is fine, as I always intended to provide it once available) but also that they now will not assess DS2 as they will not 'duplicate ' another doctor's diagnosis.
Can they really do this, prevent us from having a multi-agency assessment for our boy because we separately had a 1.5 hr consultation with an NHS consultant who also works privately?? I just feel sick and faint all the time now, panicking that By trying to get an early view and make interventions as soon as possible we have done the wrong thing and somehow precluded him from full accessing NHS services. if anyone has any experience or insight into this I would be so so grateful, just feel I am drowning here, thanks in advance and apologies for any type, am sure they are legion :-)

[StarlightMcKingsThree]

I did the same thing as you. They tried the same thing with me.

I wrote a strong letter informing them that it was my right to seek a second opinion, but because of their staffing issues my second opinion happened to come first.

I also told them that though I had every confidence in the dx, my child needed a multi-agency assessment to provide the perspectives of the different professionals in order to give a clear picture of need and difficulties.

Therefore it was the multi-agency assessment that I was expecting, not necessarily a repeat dx, though as the first of two opinions I was rather hoping they would comment upon it.

[WhatsHisChops]

Thanks so much for the reply Starlight, everything you expressed is spot on. Do you mind me asking the outcome?

[StarlightMcKingsThree]

Well I wrote directly to the paed. She agreed to reinstate the multi-agency assessment.

You are entitled to a second opinion, whichever way round it is.

[StarlightMcKingsThree]

And I'm sorry about your diagnosis.

[Skylar123]

We have a private dx for Ds and we are awaiting nhs communications disorder clinic for assessments in May for nhs dx. Nhs paed agreed we could continue on this path even tho we have the dx privately. I don't trust her tho I think she will try to over turn it. We seem to have accessed all input required through private dx.

[WhatsHisChops]

Starlight – thks so much for the info and esp. The kind words, it means a lot

Skylar, thks for the reply, interesting....What I don’t understand is whether/how they have a legal right to deny us an assessment based on the fact that we have had a prior private consultation. So, in our case, we had a 1.5hr discussion of some very detailed notes I had made on DS, plus some more questions (albeit with a highly experienced paed). And this is supposed to preclude us from have a full multi-agency assessment for DS? As Starlight said, we need a clear picture of his needs, difficulties in order to structure therapies/interventions. How can the NHS deliver the latter without the former? (And yes, I do know that we will almost definitely need to do a lot of the work ourselves, but had hoped to get at least some support) And how do you go about getting a statement/funding without an NHS diagnosis? Or am I just going mad?!

Please, if anyone else out there can shed some light on this for me as Starlight and Skylar have done I’d be so grateful, feeling so alone and lost trying to navigate this seeming labyrinth in the wake of such life-changing news x

[Skylar123]

I don't think the info you have been given is correct can you ask to be referred to someone else? I have not had any difficulties accessing help because we don't yet have the nhs dx. Autism outreach are now involved with my Ds. I am also applying for SA. I see the nhs dx as something I want to pursue. We have nhs salt and OT involvement without nhs dx. Sorry this isn't really very helpful but I think I'm trying to say yes you should get the nhs dx but it hasn't proven essential to us as yet.

[pinkbunny2012]

Hi really sorry to interrupt ur thread, but if u don't mind me asking, how much was ur private diagnosis of autism and how did u go about it?

[WhatsHisChops]

Skylar and pinkbunny, thkks for replies, can't respond this eve as hands full but will do tmrw x

[WhatsHisChops]

Sorry for late reply, all a bit full on here :-)

Skylar – I am not sure I have necessarily been misinformed, but I am spooked by CAS’ unwillingness to assess my DS. How can they know what services he requires without a thorough assessment? Our “dx” is based on a 1.5 hr chat with a consultant. Not a detailed workup from a range of professionals. How might this backfire if we try to access funding for example? I just want DS to avail of the same NHS services as everyone else, as is his right, and I don’t know enough about how all this work to decide which buttons to push to make this happen. Am speaking to my (v. good) GP on Friday so hopefully he will be able to shed some light – he has been away this past month which hasn’t helped.

Pinkbunny - I arranged an appt. with Daphne Keen (who many on net recommend) off my own bat. If you google you will find webpage and details for her secretary, who is very hard to get hold of btw. Dr Keen was very good, if you’d like more details please feel free to PM me, and again, very sorry for the delayed reply x

[wetaugust]

WhatsHis

Complain

It's ridiculous.

As you say, what;s th point of a MAPP if they will just on eon the opinion of a private paed and ignore the views of all the other agencies that should also contribute their input.

In DS's case the NHS originally misdiagnosed him - that fact was clear to everyone involved with him but the NHS did not rush to offer a re-diagnosis.

So I went private.

A few days before the scheduled private reassessment the NHS Cons Psych rang me and asked if I wanted the re-diagnosis to begin immediately or whether I wanted to wait for private Paed diagnosis. I chose to wait for private (as I had lost all faith in the NHS by then).

Private dx was ASD. NHS asked me if I wanted to share the private report (no compulsion to do so). No compulsion from the LA either to give them a copy of the private report even though we were going through Statementing at the time.

NHS then re-dx'd and confirmed the private dx.

So no problems in thsi area with NHS after a private dx and you shouldn't have problems either.

You know, it's even more stupid the more you think about it. They are willing to accept someone else's findings without getting sufficiently acqauainted with your child to make a dx and, based on their knowledge of the suport available in your area, put some in place. The acquaintance with his difficulties that they'd gain via a NHS dx is also reuired for future therapies.

Yes - defintely comaplin. It's outrageous.

[WhatsHisChops]

Thanks for the info wetaugust, totally agree and will take your advice on board :-)