Complaint the Trust discharged Mr N from the ADHD pathway in November 2022
20. Our adviser explained services use screening processes to identify young people who should have an ADHD assessment. In practice, people are accepted for an assessment if there is evidence they may meet the requirements for an ADHD diagnosis set out in the NICE guidelines.
21. The NICE guidelines say for someone to be diagnosed with ADHD, they must have symptoms of hyperactivity, impulsivity and/or inattention that meet the diagnostic criteria in the DSM-5 (an internationally recognised standard which sets out the criteria for neurodevelopmental and mental health disorders).
22. The criteria in the DSM-5 is very detailed, but for the purposes of our report we have summarised the key criteria as: • A pattern of persistent symptoms of inattention (such as failing to pay attention during tasks, unable to finish schoolwork, disliking tasks that need sustained effort) and/or hyperactivity and impulsivity (such as fidgeting, excessive talking, unable to wait their turn). There should be six or more symptoms in either category.
• There were several of these symptoms present before age 12.
• There are symptoms present in two or more settings (e.g. at home, school, with friends, in other activities).
• There is clear evidence the symptoms interfere with social or school functioning.
• The symptoms are not caused by another condition.
23. The Trust sent screening forms to Miss P and to Mr N’s new high school. It based its decision on these forms, and information it had gathered about Mr N’s developmental and medical history.
24. After carrying out screening, the Trust decided Mr N was unlikely to meet the ADHD diagnosis criteria set out above, and he was removed from the pathway.
25. Its rationale was that there were no indications of ADHD within the school environment at the time, and no indication of ADHD symptoms that interfered with Mr N’s development or function.
26. We have carefully reviewed the evidence and found this supports the Trust’s rationale.
27. The history Miss P provided said there were no differences in Mr N’s early development other than climbing out of his cot. She his behaviour was ‘naughty’ and ‘bad’. In one screening form where it lists a set of symptoms and asks how often they occur, Miss P indicated Mr N had a high number of ADHD symptoms.
28. The screening form his school completed shows there was no reported ADHD symptoms in that setting. This meant the diagnostic criteria were not met as symptoms were not present in two or more settings.
29. We note Miss P says this is because Mr N was new at the school and there is evidence from primary school that he had ADHD symptoms.
30. Our adviser considered the supporting evidence Miss P provided from Mr N’s primary school, his previous counsellor and two neighbours. Whilst this shows Mr N clearly had challenging behaviours, this information did not include enough evidence to indicate he would likely fulfil the ADHD the diagnostic criteria following assessment.
31. We now know Mr N has been diagnosed with ADHD. However, this itself it not evidence the Trust failed to diagnose it sooner. Mr N clearly had behavioural difficulties, and we do not underestimate how difficult it must have been for Mr N to experience and for Miss P to manage this.
32. We must base our decision on the evidence that was available to the Trust at the time of events, and in doing so we have seen Mr N’s symptoms did not meet the criteria set out in the NICE guidelines. Therefore, we found it was appropriate for him to be removed from the Trust’s ADHD pathway in November 2022. We recognise Miss P strongly feels this decision was wrong. We hope the explanation here gives her some reassurance.
Complaint the Trust rejected a referral made in February 2023
33. Miss P is unhappy the Trust rejected further referrals at this time. She feels Mr N should have been accepted back onto the ADHD pathway so he could be assessed.
34. Our adviser explained there is no specific guideline that sets out what to do when a re-referral is received. In practice, services should consider the information in the referral to see if there is any new information to suggest the need for an ADHD assessment. New referrals should not be dismissed solely on the basis that previous referrals were declined.
35. The records show Mr N’s GP completed a referral to CYPMHS following a telephone consultation with Miss P. The referral included Miss P’s concerns about Mr N’s behaviour and gave examples of this. The referral asks the service for an assessment and a safety or management plan.
36. Mr N’s school also submitted a referral. This reiterated the difficult behaviours at home, although noting they were not present at school. The only issue the school mentioned was Mr N’s threatening behaviour towards another pupil. It said his behaviour was good in lessons.
37. Also around this time the Trust met with Mr N and Miss P. This was in response to a complaint the Trust had received from Miss P about the decision to discharge him from the ADHD pathway.
38. In this meeting the Trust reiterated its decision (it had not yet made a decision on the new referrals yet) and provided further signposting for support. It said Mr N should continue to receive support from his child and family support worker and also advised autism could be contributing to his problems. He was still waiting for an assessment for this.
39. The Trust did not formally respond to the school about its referral, but it wrote to the GP on 1 March to explain the referrals were not accepted. It said resources had recently been provided to Miss P and Mr N was still on the autism pathway (pending an assessment).
40. In its complaint response the Trust explained Mr N’s difficulties at this time still did not indicate that he met the criteria for an ADHD diagnosis, and there were other interventions he needed to engage with.
41. We consider the Trust’s rationale here is supported by the evidence and is in line with NICE guidelines.
42. Our adviser says the information in the referrals demonstrated Mr N had challenging behaviour and problems with emotional regulation (the ability to control your emotions) but there was no new information to suggest these difficulties were linked with ADHD or were present in the school setting.
43. It appears the criteria in the NICE guidelines were still not met. We therefore think it was appropriate that the Trust did not accept Mr N back onto the ADHD pathway at this time.
44. We recognise how upsetting it was for Miss P to learn that the Trust would not reassess her son for ADHD. We do not underestimate that Mr N had challenging behaviour. However, we did not find a failing here as there is not enough evidence to support that his behaviour met the criteria for an ADHD diagnosis to be considered.
Complaint the Trust rejected a referral in February 2024
45. By this point in time, Mr N was no longer on the Trust’s autism pathway. The Trust discharged Mr N from the autism pathway in 2023 when Miss P did not complete screening forms as she did not want the Trust to assess him. Mr N’s GP had referred him to independent psychology service for an NHS funded autism and ADHD assessment and this was still pending.
46. On 20 February 2024 Mr N’s child and family support worker referred him to the CYPMHS. The referral references a number of concerns about Mr N’s difficult behaviours that are occurring in the home and school environment. It did not say suspected ADHD was the reason for referral and it does not ask for any specific type of input or support.
47. The Trust declined the referral on 26 February. It said the difficulties outlined in the referral did not indicate Mr N had any mental health needs, and there was no open autism or ADHD referral. It provided signposting to support services that could help.
48. We carefully considered the contents of the referral and can see there are clearly still problems with Mr N’s behaviour. We understand why Miss P was so concerned.
49. Our adviser said the behaviour described in the referral does not suggest there is a mental health condition. Some of the behaviours are suggestive of autism (such as difficulties with maintaining eye contact, misinterpreting comments of others, and a need for situations to be on his own terms).
50. However, there are also indications of ADHD symptoms of hyperactivity and impulsivity (such as frequently interrupting others) as well as inattention (such difficulties with focus, requiring prompts, organisational difficulties).
51. Our adviser says this referral contains new information about Mr N’s symptoms in school. This is part of the diagnostic criteria set out in the NICE guidelines, and indicates there could be reconsideration of ADHD screening.
52. However, the difficulty here is that the support worker’s referral does not ask for reconsideration of ADHD diagnosis, and the Trust has therefore not treated it as such. Our adviser also explains it is not clear from the referral what support is being sought beyond an exploration of Mr N’s needs.
53. It is also important for us to explain that even if the referral had cited ADHD reconsideration as the reason, the Trust would not have been able to do this. Mr N was already on the waiting list with another provider and it would not have been possible for the Trust to also put him onto their pathway at the same time.
54. We cannot find a failing in the way the Trust dealt with the referral, based on the contents and purpose of it. There was no mental health need identified and no request for ADHD input. However, given there was new information about Mr N’s behaviours also affecting him in school it might have been preferable for the Trust to have acknowledged this and explained why it could not intervene. This communication shortcoming does not amount to a failing but is something the Trust may want to reflect on.
Complaint the Trust rejected a referral in March 2024
55. Shortly after the support worker’s referral, Mr N’s GP also completed one. The GP was asking CYPMHS to provide Mr N with ADHD medication whilst he was waiting to be seen by the independent psychology service as that service cannot prescribe medication.
56. On 21 March 2024 the Trust declined the GP’s referral. It said it could not provide treatment for ADHD if it was not diagnosed, and to wait for the outcome of the independent psychology service’s assessment.
57. We found this was appropriate and in line with the NICE guidelines. They say: ‘before starting medication for ADHD, people with ADHD should have a full assessment, which should include a review to confirm they continue to meet the criteria for ADHD and need treatment’.
58. Given Mr N was still waiting to be assessed, and had not yet been diagnosed with ADHD, it was suitable for the Trust to decline the requested input at this time. We hope this explanation reassures Miss P the Trust’s actions here were appropriate.
Complaint the Trust would not put Mr N onto the ADHD waiting list after the independent psychology assessment
59. When the independent psychology service saw Mr N it said he did not meet the criteria for an ADHD diagnosis but had traits of it. It said these traits could be due to attachment difficulties, trauma, or previously undiagnosed autism.
60. It provided recommendations and signposting for support with his behaviours. It also said he should undergo reassessment in the future if the ADHD traits persist. We understand Miss P was very concerned about what this meant for Mr N as his behaviour was very difficult to manage.
61. Mr N’s GP referred him back to the Trust in April 2024, resharing previous information about how he was coping in school and a copy of the independent psychology report. It appears the purpose of this referral was to ask the Trust to reassess for ADHD.
62. The Trust declined this referral. It reiterated the independent psychology service’s findings and recommendations. It also said it could not medicate Mr N for ADHD without a diagnosis. It did not agree to reassess him.
63. Miss P complained to the Trust about this. She was concerned the ADHD traits may represent undiagnosed ADHD. In the Trust’s response it reiterated what support was available and explained Mr N needed time to engage with this before he could be reassessed for ADHD. It suggested he could be re-referred in 12 months.
64. Our adviser explained there are no specific clinical guidelines that set out what should happen in these circumstances. The NICE guidance does not address ADHD reassessments.
65. However, our adviser explained, in their experience, reassessment in a short timeframe would not be appropriate. This is because the recommendations for Mr N to access support to address the potential underlying causes of his behaviour would need to be implemented before any future ADHD assessment could be considered.
66. We therefore consider the Trust’s response to the referral was appropriate. The Trust could not accept Mr N back onto the ADHD pathway whilst other causes of his behaviour needed to be ruled out. This would take some time, hence the suggestion of waiting 12 months. We found no failing here.
Complaint the Trust will not see or treat Mr N for autism
67. As explained above, the independent psychology service’s report included recommendations and advice on how to manage Mr N’s autism.
68. When the Trust responded to Miss P’s complaint about Mr N’s care it explained the CYPMHS can diagnose autism, but it is not commissioned to provide support to children after an autism diagnosis. Instead, a local independent healthcare provider runs this service and the Trust provided signposting to this.
69. If the Trust cannot provide a service because it is not commissioned to do so, we would expect to see that it provides information about the relevant services that are. The Trust has done this. There is no failing here.
Conclusion
70. We have not found any failings in the service the Trust provided to Mr N. Its actions were supported by the evidence and in line with the national guidelines. We therefore do not uphold the complaint.
71. We recognise this decision may cause Miss P disappointment and upset, particularly as Mr N has since been diagnosed with ADHD. We recognise how strongly Miss P feels about what happened and we do not underestimate how distressing and exhausting this period of time has been.
72. Our decision is in no way intended to minimise the significant impact Mr N’s behaviour had, and continues to have, on himself and his family. We hope this report fully explains the reasons for our current view and provides some reassurance to Miss P about her son’s care.