Private asd diagnostic services - your opinion

[Speechiesusie]

Okay, I'm an SLT and I have recently set up in business with my colleague, who is a clinical psychologist. I'm not here to tout for business and have no intention of revealing where we are, but I'd like some opinions!

We both continue to work part time in the NHS. We have about 15 years experience each and five children between us.

We are both trained to diagnose ASD using a combination of ADOS and Lorna Wing's DISCO assessments. We are combining these assessments so that every child/adult gets both assessments as we feel this covers all bases (we want to offer a comprehensive service!).

Aside from this, we are planing to offer IQ and speech and language testing as well as a school observation with permission. Appointments will take place at a location of the family's choice, with initial interviews and feedback carried out in their own homes where possible. Assessment should begin within two weeks of the referral, which can be made by parents themselves. The initial interview would be carried out without the child present and would be a chance to discuss whether assessment is appropriate, with no obligation on either side to continue.

I'm canvassing opinion at the moment about what sort of support parents of children/family members with ASD would like to see in an ideal world. What is helpful post diagnosis? What about beforehand? Do you think it would be useful to have a session where the implications of diagnosis are considered? Has anyone had this and found it helpful? What was 'missing' (if anything) during your own journey towards a diagnosis?

One of the main things we'd like to do is to offer support to the child's school and family. there might also be individual therapy involved if requested. I've heard that some LAs don't take 'private' diagnosis seriously (which is crazy since we do exactly the same in the NHS though perhaps not in so much detail). Does anyone have any experience of this? I'm Assuming that the SENCO would take on board recommendations and help but as we are used to working in the NHS, we're not sure what to expect.

I ought to add that we are both experienced in working privately in our own clinical domain, we are joining forces because we think we have a lot to offer as a team. Neither of us has worked with schools / LA whilst working privately.

Any opinions/ideas/experiences gratefully received.

I just think it's a brilliant idea. What parents desperately need is credible, flexible services and a real alternative to the floundering around in the dark and endless lonely anxious months on ridiculously long waiting lists offered by the NHS. Private MDT assessments is a brilliant idea.

Ah I'm really glad you think so! We also have access to an OT and a private SENCO from out of area.

We believe in the NHS but you know, it's a frustrating place to be at times as a clinician so goodness knows what it's like for parents. All that waiting and stress when we could offer our skills right away and (we think) give a gold standard service. It's just getting it right thats the key. It's all very well us thinking we know what parents want, perhaps there are things we haven't thought of.

I hope it takes off. But I'll never turn my back on the NHS either - I hope one day this level of service will be available there too.

'What is helpful post diagnosis? What is missing?'

Getting a professional to make a written recommendation for ABA as is standard in the US and much of Europe for it's evidence base and measurable outcomes, is like asking for the blimmin moon! They'll all say it verbally, but none seem prepared to write it down.

Failing that, SMART targets and measurable outcomes are pretty much what so many of us want but very few (do any of us here?) get.

I think it's important that private services join up, work alongside NHS and dispel this bizarre idea that private assessment is somehow not credible because it was paid for, when in reality the service may actually be more comprehensive.

Our LA will not accept a private diagonsis and actively put parents off, which is stupid as we are 14 months down the line on a CAMHs list waiting ! We are one of the lucky ones as we have a 25 hour statement but no "label" as such yet

It sounds like a brilliant idea . There are already some multidisciplinary teams which do a private dx, but I don't have any personal feedback about them. DS was diagnosed by Daphne Keen, who was fantastic, but it would probably have been stronger to get a team rather than a single practitioner.

We never had problems getting our LA to accept the private dx. But I think that what would be helpful to other families who have experienced this, is the professional willing to defend their diagnosis and engage in correspondence with the LA if it becomes an issue.

I agree with getting good, specific, quantified recommendations in the report. It would also be helpful if one of the professionals was able/willing to appear at tribunals if necessary.

If the parents are happy for the child to stay within the current school, it would be helpful if the professionals could meet with school staff to go over recommendations. Even if you write them in a report, they are often all too likely to be filed away and forgotten. Or the recommendations will be misunderstood and carried out inappropriately.

I would have welcomed more support in finding a suitable school, as we didn't receive specific recommendations from any professionals and ended up doing all the legwork ourselves. But that will be tricky to do on a nationwide scale.

A follow up session a few weeks after diagnosis so that the parents can ask the questions that they were too over whelmed to ask when they got the diagnosis!

Independence of diagnosis is key, and an open mind towards ABA. Don't you need a paediatrician on board too though?

My LA wouldn't accept your current assessment set up without a pead or neuro on board too & only accept multi-disiplinary assessments from the private sector such as that offered by GOSH.

I think that unqualified/over opinionated school staff can potentially have far too much influence over NHS diagnoses & so would actually prefer to see schools totally excluded from the clinical diagnositic process.

I personally think that AFTER the clinicians have decided what's wrong with a child is the time to go into school and get the teaching staff on board in a proper professional manner. This should start with a clear plain english explanation of what a child's difficulties are. The ASD spectrum is so broad that spelling out a child's specific problems is needed to prevent the "one size fits all" approach being used in school & elsewhere. Private timescales make this possible as a sensible approach.

The main difference I've noticed between private and NHS reports to date is that my private reports tend to be written in simple, plain english that call a spade a spade, NHS ones tend to be wholly mush & seemingly written by martian lawyers on lsd . Ensure yours are nice and clear and that the recomendations within are those that are actually best for the child, rather than the latest Gove driven PC crap. (Let the parents then battle how to implement your suggestions). If a child needs ABA, or a decent sensory diet, or 3x 30 mins 1:1 SALT a week, or a residential placement - say so!

Have a post diagnostic meeting with parents a month after diagnosis so they can ask you all the questions they need when not suffering from shock and grief. At that meeting have a preferred list of theraputic suppliers to hand for referring children onto - from a decent SN lawyer to perhaps a SN babysitting service. Keep the list in your back pocket, and ensure there is at least one name against everyone of your own reccomendations for state and private sector (most of us end up mixing and matching the two sectors to cover our children's needs).