Guest Blog: Reflections on NHS England Guidance for Autism

NHS England published their national framework and operational guidance for autism assessment services on 5th April 2023.

David McAsey has been in touch to share his initial thoughts on the guidance as it is highly relevant to the current pilot restricting autism and ADHD diagnoses in York and North Yorkshire.

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These are my personal initial thoughts on the framework and guidance published by NHS England on 5^th April 2023.

I have taken a quick read through both the framework and the operational guidance.

I am really pleased to see NHSE documents on autism that are evidence based and set out a strong vision of what needs to be achieved, who needs to do it and how it should be done.

For me the framework is the more pertinent document as it sets out very clearly what is expected of Integrated Care Boards (ICBs). The operational guidance shouldn’t come as a surprise to anyone who understands autism.

I would have been happier if the need for baseline Mental Health services had also been made more explicit. That said the document does make it clear that investing up front in an autism pathway (not just the diagnostic bit) saves money elsewhere in the system (something that the National Audit Office said back in 2009!).

I particularly like the autism assessment pathway illustration showing that the pathway includes post diagnostic support and indicates what elements of the pathway should be delivered by the autism assessment provider.

As expected, there is no new money attached to the framework. However, it does give ICBs more than enough information to work out what level of investment is required, not only for the expected demand but also to clear waiting lists. The framework vindicates the costed proposals considered and subsequently rejected by the local ICB’s predecessors in October 2020.

With specific reference to the current service commissioned by York and North Yorkshire, it is worth noting that the NHSE framework and guidance is about autism and autism only. It is not coupled with ADHD.

Whilst there isn’t an explicit timeline for implementation of the framework it does reference the National Autism Strategy that wants to see pathways sorted by 2026. For that to be achieved there is going to have to be a massive investment in people, training and infrastructure that will need to start now. Based on their track record I don’t trust the York and North Yorkshire commissioners to do the right thing and find the money and people.

I welcome the fact that NHS England are explicitly stating that the ICD 11 diagnostic criteria is to be used as the primary description for autism. I recognise that not everyone will agree with that but NHSE have provided useful clarity.

There are plainly some reservations about telehealth offerings. I welcome the fact that telehealth should not be regarded as the mainstay of service provision – as certain commissioners would wish. Telehealth has its role to play but the evidence base is not yet there.

I confidently predict that there will be a great many new ‘autism assessment and diagnosis’ offerings jumping on the bandwagon and that most of them will have a significant telehealth component. Those offerings should be judged on the considerations set out in the framework and guidance. Those who advocate telehealth as the main solution should have their evidence base closely examined and their motivations scrutinised.

The framework is clear that autism assessment and diagnostic services must be delivered by a specialist multi-disciplinary team.

I welcome the fact that the guidance makes it clear that service users and carers must be made aware that an NHS commissioned assessment and diagnostic service provider may not be registered or regulated by the CQC.

Both the framework and the guidance have got into a muddle about CQC regulations. I welcome that fact that it is being recognised that many autism diagnostic service provider organisations (mainly independent sector) are not registered with or inspected by the CQC and that ICBs will need to do their own due diligence checks. However, that misses the point. It is not that the diagnostic service provider organisations are not registered, rather it is the fact that autism assessment and diagnosis is not a regulated activity. If that is all that a provider organisation does then the organisation doesn’t need to register with the CQC. Similarly, if an organisation is already registered with the CQC for a regulated activity, e.g., in-patient care, and also provides an autism assessment and diagnosis service, the autism diagnosis service is outside the scope of any inspection by the CQC.

What is really important here is that ICBs will have to up their game when it comes to assessing and monitoring autism assessment and diagnosis providers. They cannot rely on the CQC for due diligence. It means that there must be officers at an ICB that have had sufficient training and education in autism to be able to provide assurance to their Board. I would suggest that this needs someone who has significant experience of autism, has been trained to a high level (probably post graduate) and works closely with autistic service users. I don’t see many officers like that in ICBs!

In general, I am really pleased that at last there is some evidence-based clarity from NHSE about what an autism assessment and diagnosis pathway should look like and the role commissioners have in delivering it.  My main worry is that there is no money and there is no moral hazard for an ICB that fails to deliver.

It will be interesting to see how long this takes to be an agenda item on the Board of the Humber and North Yorkshire ICB. I’m not holding my breath.

David McAsey

16^th April 2023

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Further thoughts on how the new NHSE guidance compares to the decision to restrict access to assessment in York and North Yorkshire are provided by Free2BMe therapy on their recent Twitter thread.

The views expressed in guest blogs are those of individual contributors and not necessarily of YDRF.