Agenda item

Report of the Consultant Community Paediatrician and Designated Doctor for Looked After Children and Young People, Gateshead Health NHS Foundation Trust

The Committee received an update on the work to review the diagnoses of Foetal Alcohol Spectrum Disorder (FASD) and Foetal Alcohol Syndrome (FAS) since the last report in April 2019.

Committee was reminded that there had been concerns regarding the diagnosis of FASD in Gateshead which led to a review being undertaken. 98 patients were identified from the pre-existing database, 9 were excluded for various reasons outlined in the report, therefore 89 patient reviews were completed. 

It was reported that of those originally classified as ‘definite FAS/FASD’ 40% were confirmed, 40% had their diagnosis rescinded and 20% had an alternative diagnosis confirmed. Of those with an original classification of ‘probable FAS/FASD’, 8.5% were confirmed, 83% had their diagnosis rescinded or not confirmed and 8.5% were given an alternative diagnosis. In terms of those cases with ‘possible FAS/FASD’ only 4.2% had the diagnosis confirmed.  It was confirmed however that for some patients the removal of the diagnosis was solely due to there being insufficient or no confirmation of antenatal exposure to alcohol. Hence, this does not entirely exclude the possibility of the child being exposed to or affected by antenatal alcohol.

It was noted that for some the removal of the diagnosis came as a relief, however for others it came as a surprise as they had not been aware of the FASD diagnosis. It was also acknowledged that the removal of the diagnosis left some children with presenting problems but no clear diagnosis, although appropriate referrals to other services have been made for these children and young people. For some patients confirmation of the diagnosis provided reassurance.

Committee was advised that there is currently no commissioned pathway for FASD assessment in Gateshead. Therefore referrals cannot be accepted just on that basis, however patients would usually present with a range of reasons so a holistic assessment would be carried out. If there is enough evidence to consider FASD as a diagnosis the Canadian FASD guidelines are used, this is in conjunction with a pathway proposed regionally.  It was confirmed that guidance on the diagnosis of FASD is being developed by NICE and the current assessment process will be reviewed once the guidance is available.

It was questioned as to what level of difficulty or challenge will be faced by children and young people with a diagnosis of FAS/FASD. It was confirmed that there is a whole spectrum of issues that could be faced, ranging from heart abnormalities to learning difficulties, memory and spatial awareness. It was also noted that some difficulties can be quite subtle and only become evident in secondary school when demand on the child increases. It was confirmed that Gateshead figures are in line with regional figures and that there is a recognition that there is difficulty in diagnosing FAS/FASD if there is no medical record of antenatal alcohol exposure.  It was noted that this is not curable therefore management and treatment of such a diagnosis would be supportive and through behavioural strategies.

A question was asked around those children who did not have their diagnosis confirmed and what pathways would be open to them. It was confirmed that all the children and young people included in the review had all been in care and all continue to have statutory health assessments, therefore any issues would be flagged and supported.

It was suggested that this issue be looked at again once the NICE guidance has been published, possibly within the next 6-12 months.