Provide’s ASD assessment
14. We have looked at Provide’s assessment of Miss W. Based on what we have seen, it appears Provide did not carry out its assessment in line with NICE guideline 128, the DSM-5 or the NHSE guidance.
15. The documentation indicates a psychiatrist carried out a clinical interview as part of the assessment. However, it appears they did not use a standardised measure though this is recommended in NICE guideline 128. Our adviser said this makes it difficult to see how Miss W did not meet the clinical threshold for autism.
16. The information relating to the clinical interview is also quite brief and it is not clear how the psychiatrist gathered the information in line with the DSM-5 criteria. It is also unclear how the information relates to the ASD assessment criteria, specifically Criteria A and B.
17. The DSM-5 sets out five criteria for an ASD diagnosis (Criteria A-E). Criteria A is ‘Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history’. Criteria B is ‘Restricted, repetitive patterns of behaviour, interests, or activities, as manifested by at least two of the following, currently or by history’.
18. From what we have seen, there appears to be very limited information gathered in relation to Criteria B in particular. Our adviser said this is concerning as the absence of Criteria B is part of the reason why Provide decided Miss W did not meet the threshold for an autism diagnosis.
19. Provide’s report shows it used ADOS-2 to assess Miss W. Our adviser said she had a very high score which is suggestive of an autism profile. They explained ADOS-2 does not need evidence of both Criteria A and B to meet the clinical threshold. They said, based on ADOS-2, Miss W’s profile was consistent with autism.
20. It appears the lack of Criteria B contributed to Provide’s overall decision, and our adviser said this is not in line with best practice. They said the lack of a standardised assessment during the clinical interview means there is limited evidence to support Provide’s decision the threshold for Criteria B was not met.
21. Our adviser explained Criteria B only requires two of four parts to be met. They said Criteria B evidence is more difficult to gather so it is important it is gathered in a systematic way and using appropriate tools. They said it does not appear Provide appropriately gathered Criteria B evidence.
22. Based on what we have seen, it also appears Provide’s assessment report does not include the level of detail set out by NICE:
‘1.5.5Include in every autism diagnostic assessment:
• detailed questions about parent's or carer's concerns and, if appropriate, the child's or young person's concerns • details of the child's or young person's experiences of home life, education and social care • a developmental history, focusing on developmental and behavioural features consistent with ICD-11 or DSM-5 criteria (consider using an autism-specific tool to gather this information) • assessment (through interaction with and observation of the child or young person) of social and communication skills and behaviours, focusing on features consistent with ICD-11 or DSM-5 criteria (consider using an autism-specific tool to gather this information) • a medical history, including prenatal, perinatal and family history, and past and current health conditions • a physical examination • consideration of the differential diagnosis • systematic assessment for conditions that may coexist with autism • development of a profile of the child's or young person's strengths, skills, impairments and needs that can be used to create a needs-based management plan, taking into account family and educational context.
• communication of assessment findings to the parent or carer and, if appropriate, the child or young person.’
23. Further to this, NHSE guidance emphasises the importance of liaising with other professionals involved in a person’s care as part of an ASD assessment. However, it appears Provide did not do this either.
24. Overall, it appears Provide did not take steps to gather the evidence needed to carry out a thorough ASD assessment and then did not appropriately consider the evidence it did gather. Based on the clinical advice we have received, it seems likely this may have impacted the outcome of the assessment.
Mrs W’s complaint to Provide
25. Our Principles say organisations should be open and honest when accounting for their decisions and actions. They should give clear, evidence-based explanations, and reasons for their decisions. They should investigate complaints thoroughly and fairly, basing their decisions on the available facts and evidence, and avoiding undue delay.
26. At this stage, it is not clear from the information Provide has shared with us how it reviewed Miss W’s ASD assessment, what it found or how it decided it did not need to take any further action. As such, it appears Provide did not carry out a thorough review of Mrs W’s complaint.
27. We think it is likely Provide would have identified at least some of the issues we have outlined above had it carried out a thorough review. This might have prevented Mrs W from having to bring her complaint to us meaning her concerns could have been addressed much sooner.
Our contact with Provide
28. We contacted Provide to share the concerns we have about Miss W’s ASD assessment based on what we have seen so far. In response, Provide reviewed its assessment again and now accepts there were issues with both this and the way it handled Mrs W’s complaint.
29. Provide now accepts it did not appropriately consider Criteria B evidence and the clinicians involved could have sought further evidence from other sources following the clinical interview. It also accepts it could have offered a further clinic review following Mrs W’s complaint.
30. Provide has told us about changes it has made/will be making to improve its assessments and ensure they are carried out in line with relevant guidance. Having carefully considered what it has said, we think it has now taken Mrs W’s complaint seriously, accepts its service fell short and is committed to improve.
31. Provide has told us it will incorporate what it has learned from this complaint into future service delivery. It has also told us about several specific changes it has already made or is in the process of making because of Mrs W’s complaint:
• changes to its pre-assessment questionnaires so they mirror the structure of the DSM-5 criteria • a review of its referral form so it is more explicit in seeking details of other services involved • a review of its consent form so it seeks explicit consent to contact schools, etc. for more information and • a process redesign so it reaches out to parents/carers once it accepts a referral to obtain all relevant information from other services involved.
32. Provide has told us it will write to Mrs W to acknowledge what went wrong with her daughter’s ASD assessment, apologise and explain what it has done/will do because of her complaint. It has also agreed to pay for Miss W to have a new ASD assessment by a different provider.
33. Our Principles say that when things go wrong organisations should explain what happened and what they will do to put matters right. They say organisations should provide fair and proportionate remedies. They should return complainants to the position they would have been in had things not gone wrong and pay compensation when that is not possible.
34. Our Principles say remedies can include an apology, explanations, acknowledgement of responsibility, specific actions such as changing a decision/revising procedures/staff training/ and compensation. We think Provide’s proposed actions are in line with our Principles and should address Mrs W’s complaint.
35. We would like to take this opportunity to wish Mrs W and her daughter the very best for the future. We hope our consideration has gone some way in addressing their concerns about what happened and provide some peace of mind around the service other people will receive in the future.