FASD and the new NICE quality standard

For years FASD has been either unknown, or certainly under-appreciated, as a major cause of neurodiversity and a significant factor in what can often be seen as children’s ‘challenging’ behaviour. Well, on March 16th the National Institute for Clinical Excellence (NICE) finally published their Quality Standard for FASD. This largely mirrors the SIGN 146 Guidance that has been operational in Scotland since around 2016.

TACT contributed towards the Standard, both in putting forward our own views and subsequently responding to consultations. We also attended, in an observational role, meetings of the NICE Committee to hear the debates around the proposed measures.

So, what is a NICE ‘Quality Standard’ and why is it important?

NICE Standards are produced on all aspects of clinical importance and are aimed at ensuring Primary Care Trusts (PCTs) are assessed and measured against how they are meeting the Standards set by their regulatory bodies. So PCTs need to demonstrate how they are meeting the Standards and evidence what they are doing. This in turn means it has implications for Commissioning and Contracting Groups (CCGs), and Integrated Commissioning Groups (ICGs) – a joint approach between Health and Social Care, that will be expected to ensure things are in place. So, the Standard for FASD should ensure that very soon we will see improvement in all the areas that the Standard covers.

There are in total 5 ‘Statements’ in the Quality Standard for FASD:

1. Pregnant women are given advice throughout pregnancy not to drink alcohol.

2. Pregnant women are asked about their alcohol use throughout their pregnancy, and this is recorded.

3. Children and young people with probable prenatal alcohol exposure and significant physical, developmental, or behavioural difficulties are referred for assessment.

4. Children and young people with confirmed prenatal alcohol exposure or all 3 facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns.

5. Children and young people with a diagnosis of Foetal Alcohol Spectrum Disorder (FASD) have a management plan to address their needs.

Put simply, they cover:

Prevention; Recording; Referral; Diagnosis; Care Management.

From TACT’s perspective, it is particularly the Statements 3, 4 and 5 which will have the most implications for us.

Ideally, Statement 2 would have included a duty to record the alcohol consumption on the child’s records, as well as the mother’s, but it seems that particular recommendation was overlooked. It is recorded in Scotland, and its omission in the English standards makes it harder to get a diagnosis in England without that information. So, we still need to ask at the earliest possible opportunity, for details of the mum’s drinking, in case in years to come that information is crucial.

Contained in the guidance accompanying Statement 3 is a clear expectation of improved training. Not just for health professionals, although obviously that is critical, but also for EVERY professional working with children, including education professionals, social workers and foster carers. You really need to be aware of FASD, as it affects at least 25% of the children in our care, so please do attend relevant training if you have not done so in the last year or so.

Statement 4 should make it easier to get a diagnosis, whether they have sentinel facial features or not. Statement 5 should improve the support and services available post-diagnosis and help to ensure a more holistic view of the individual child.

Obviously, these changes will not occur overnight, and no doubt will require continued lobbying and pressuring, mostly being driven by people with lived experience of FASD, adopters, and organisations like TACT, but there is no going back now.

FASD is now officially recognised, we have reached a ‘tipping point’, and from now on you will no doubt see more and more about FASD, and that can only be a good thing.

Martin Clarke is TACT director for performance support. This blog was first published on the TACT website.