Miss B’s DMDD diagnosis and whether it could have been made sooner
21. Miss B complains the Trust could have diagnosed her with DMDD much sooner than it did. Its actions did lead to a diagnosis of DMDD in October 2019, but Miss B feels the diagnosis could have been made at least four years earlier. She says this impacted on her education, as without a formal diagnosis she could not access a school that could accommodate her needs.
22. We can see CAMHS was assessing Miss B for ASD and social communication difficulties during its appointments with her in the four years leading up to her DMDD diagnosis. It worked with the local authority to support Miss B and her family, and offered family therapy treatment.
23. We understand why Miss B has asked us to look at why the Trust did not diagnose her with DMDD, rather than exploring the other options described above. It is clear Miss B’s diagnosis and the treatment she received as a result have greatly improved her quality of life, and we know she would have liked this to happen sooner.
24. The Trust did the right thing when it was considering how to treat Miss B from 2015 until her diagnosis in 2019. We know the Trust did not consider a DMDD diagnosis until it referred Miss B to the SCDC in November 2018. We have looked at whether it could have diagnosed her with DMDD sooner, and we have asked for clinical advice on this part of the complaint.
25. Our adviser directed us to the GMC’s ‘Good medical practice’. It says clinicians must provide a good standard of practice and care. They must adequately assess a patient’s condition, promptly provide or arrange suitable advice, investigations or treatment where necessary, and refer them to another clinician if this serves the patient’s needs.
26. We can see the Trust followed this guidance when it treated Miss B up to her referral to the SCDC. This is clear in the Trust’s referral letter to the SCDC dated 19 November 2018. The Trust carried out detailed assessments with appropriately trained clinicians and carried out suitable interventions based on the outcomes of the assessments.
27. Our adviser also highlighted the RCPsych’s ‘Good psychiatric practice’, paragraph 3. It says, ‘in making a diagnosis and differential diagnosis, a psychiatrist should use a widely accepted diagnostic system’.
28. The NHS uses the WHO’s ICD-10 as a widely accepted diagnostic system. The ICD-10 serves many purposes. It is used across the world to provide knowledge on diseases, and allows clinicians to record information to help with research. It is important for this complaint, as it also includes guidance for diagnosing diseases.
29. The ICD-10 does not recognise DMDD. This is a key piece of evidence for this complaint. The ICD-10 was developed and had been in use before DMDD became a recognised condition for clinicians to diagnose and treat.
30. There are other widely accepted diagnostic systems. The American Psychiatric Association (APA) uses the DSM-5, which is commonly used by clinicians in the United States of America. The DSM-5 does recognise DMDD as a diagnosable condition, and it was available for the Trust to consider when it was treating Miss B.
31. We cannot say the Trust did something wrong by not referring to the DSM-5 and considering a DMDD diagnosis earlier. While DSM-5 is a recognised diagnostic system, it is not the NHS standard system. It is also important to note DSM-5 sets out clear guidelines, which state clinicians should consider DMDD if ‘the behaviours are not better explained by another disorder e.g. autism spectrum disorder’. The Trust was still considering an ASD diagnosis which, at the time, better explained Miss B’s behaviours. Therefore, there was no relevant diagnostic system at the time to support a DMDD diagnosis.
32. In summary, DMDD is a newly recognised and complex diagnosis. During the events at the heart of this complaint, new guidelines have been developed and made available to clinicians. There is no evidence to support a view the Trust could have made the diagnosis earlier than it did. The standard guidance for NHS clinicians was not available, and the APA guidance excluded a DMDD diagnosis at the time. The Trust also followed the relevant GMC guidance in the absence of specific guidance on this condition. So, we have found no failing.
The consultant’s description of a referral to the SCDC on 3 July 2017
33. Miss B complains the Trust did not fully explain its proposed referral to the SCDC during an appointment with her on 3 July 2017. Miss B has particularly complained the consultant child psychiatrist referred to a colleague in the SCDC as the ‘God of autism’. Miss B says the consultant’s language scared her and she felt distressed.
34. We can see Miss B had an appointment with CAMHS on 3 July 2017. The appointment is documented in a letter the consultant dictated on the same day and sent to Miss B’s GP. It explains the consultant offered to refer Miss B to the SCDC and the offer was declined.
35. The consultant did not keep a written record of the appointment. They dictated a letter to Miss B’s GP and this served as the written record. This is a common practice among clinicians in outpatient clinics. The letter does not give us details of the exact words used during the appointment, so we have looked at the other evidence available to us, to help us make a decision about this part of the complaint.
36. The Trust wrote to Mrs B in response to complaints she made. In its letter dated 22 June 2020, it addressed her complaint about the consultant’s language during this appointment. The Trust did not accept the consultant used the language Mrs B claimed, but it did apologise if she found the consultant’s approach to the appointment unhelpful.
37. Mrs B has sent us a detailed written account of this appointment and the impact it had on her daughter. Mrs B has explained they were not given appropriate information to be able to accept the referral during the appointment, and Miss B was very angry about what the consultant had said.
38. A letter from CAMHS to the SCDC dated 19 November 2018 supports this account. It explains Miss B needed further assessment and the SCDC would be best placed to carry it out. Importantly, it says Miss B and her family had lost faith in CAMHS.
39. As there is no documentary evidence of the conversation during the appointment on 3 July 2017, we have to look at the other available evidence to decide what is more likely than not to have happened. Mrs B has given a compelling account of the appointment, and the information in the CAMHS letter dated 19 November 2018 supports the family’s view.
40. Overall, the Trust should have done more when the consultant explained the potential referral to the SCDC to Miss B on 3 July 2017. The GMC’s ‘Good medical practice’ says clinicians must ‘give patients the information they want or need to know in a way they can understand’. It also says clinicians must ‘make sure arrangements are made, wherever possible, to meet patients’ language and communication needs’. We cannot see the Trust acted in line with this guidance during the appointment. We have found a failing regarding this part of the complaint.
Our view on the impact of the failing on 3 July 2017
41. Miss B says the failings made her feel scared of being referred to the SCDC. She told us hearing the word ‘autism’ made her feel angry. Miss B’s mother also told us the failing meant the Trust did not refer Miss B to the SCDC sooner, and so she did not receive a DMDD diagnosis until much later than necessary.
42. We understand why the Trust could not diagnose Miss B with DMDD sooner than it did. We have explained our reasons for this above. But we can see why Miss B felt scared and angry.
43. We know Miss B had difficulty managing her own emotions. This is the reason why she had been receiving treatment from CAMHS for almost ten years, and it is reflected in her medical records. We can appreciate why she felt how she did during this appointment.