Tees, Esk and Wear Valleys NHS Foundation Trust

3. Mrs Q complains about the delays in assessment and lack of reasonable adjustments considered for her son, P, by the Trust.

4. Mrs Q says: • the Trust severely delayed P’s ADHD assessment and diagnosis by ‘losing him in the system’, causing them to wait two years for an assessment • when they had an assessment in May 2024, the Trust stated P did not have ADHD, despite Mrs Q providing a lot of evidence to the contrary, and • reasonable adjustments were not met, which led to P behaving irregularly, therefore nor providing an accurate observation of his usual behaviour.

5. Mrs Q says the situation has caused: • stress and prolonged suffering for her son due to delays and ineffective assessments, leading to delay in access to medication • appointments made him dysregulated and frightened • her son had to miss school and then return upset and confused, causing him to lash out • stress and anxiety for family – Mrs Q had to access private therapy and suffers stress headaches which she now takes daily medication for.

6. As an outcome to her complaint Mrs Q would like: • a review of CAMHS’ referral and assessment process and of their complaints process • assurances of what improvements have been put in place for caseworkers and CAMHS staff to ensure they are equipped to engage with children with complex needs, and to effectively deliver ADHD assessments and write reports • financial redress.

7. P has a medical history of autism, learning difficulties, behavioural difficulties and sleep disturbances. He also has a history of self-harm and non-epileptic blank episodes. P’s school states he suffers with inattentiveness and memory issues and is unable to focus on one task for a long period of time.

8. In April 2022 the Trust placed P on a waiting list for an ADHD assessment. ADHD is a disorder where the person shows a persistent pattern of inattention and/or hyperactivity–impulsivity that interferes with day-to-day functioning and/or development.

9. On 17 August 2023, Mrs Q received confirmation that P met the criteria for an initial comprehensive assessment. This is a thorough clinical evaluation by a specialist, to determine if his symptoms met the clinical criteria for ADHD.

10. P attended an ADHD assessment on 16 May 2024 with the Neurodevelopmental Assessment Team. The Trust used the ICD-10 when assessing Mr P. ICD-10 is the tenth revision of the International Classification of Diseases produced by the World Health Organisation. ICD-10 was replaced by ICD-11 (the eleventh revision) in 2022. England is still in transition from ICD-10 to ICD-11. The NHS England website states ICD-11 will become mandatory within the next five years.

11. The Trust decided P did not meet the criteria for ADHD that the ICD-10 specified. The Trust stated P’s symptoms could be explained by his autism diagnosis. For example, they suggested the fidgeting he displayed could be a tool in aiding sensory feedback, rather than hyperactivity.

12. Mrs Q raised concerns about this result. She stated P was in an unusual environment during the assessment and therefore displayed unusual behaviours. She said these behaviours did not reflect his day-to-day life.

13. On 8 July 2024, P’s school sent a letter to the Trust. The school expressed their surprise at the Trust’s conclusions and highlighted their common observations. This letter resulted in the Trust undertaking a further observation of P on 11 September 2024.

14. The observation on 11 September 2024 reported P only portrayed one ADHD-adjacent behaviour, although the Trust did state this may have been due to masking behaviours and that it was difficult to identify ADHD. As a result, the Trust requested a cognitive assessment.

15. The Trust arranged a cognitive assessment for 30 October 2024, however Mrs Q declined this. Instead, the Trust held a meeting on 12 November 2024 to decide if P met the ICD-11 diagnostic criteria for ADHD. The meeting comprised of a consultant psychiatrist, the team manager, a nurse consultant and a clinical nurse specialist. After reviewing the available evidence, the Trust’s decision remained the same.

16. Mrs Q then sought a private diagnosis for P. The private provider concluded that he did meet the ICD-11 criteria for ADHD.

Issue 1 – CAMHS did not honour P’s reasonable adjustments when conducting their assessment

20. Mrs Q stated that the Trust did not provide reasonable adjustments for her son, despite several requests. She explained that a cognitive assessment held in his regular environment would have been more suitable as the results would have been more accurate.

21. This is because P struggles to behave regularly or engage normally in an unfamiliar environment, due to his diagnosis of ASC (Autism Spectrum Condition). ASC is a neurodevelopmental condition in which an individual communicates, processes information and interacts differently with the world, in comparison to neurotypical people.

22. Mrs Q believes the Trust was discriminating against P due to his diagnosis, which is why they refused to accommodate his reasonable adjustments. We appreciate how distressing this must have been for Mrs Q and her family.

23. The Trust stated that reasonable adjustments were made for P during his Quantified Behavioural test (QB). A QB is a standardised computer based assessment which aids with the diagnosis of ADHD by measuring its three main components: inattention, hyperactivity and impulsivity.

24. Despite child friendly language, the Trust noted that P struggled to understand the QB test during the practice round. Instead, they offered a cognitive assessment.

25. The Trust stated they did ask the clinician if an at home/in school cognitive assessment would be possible, but they were advised it could not be conducted due to technology restrictions.

26. The Trust explained the clinician was not able to use technology that belonged to the Trust away from their premises. They explained it had nothing to do with P’s diagnosis.

27. When considering reasonable adjustments we cannot say if discrimination has occurred. Only a court can make this decision. Our role is to consider if the Trust has given due regard to its responsibility to consider requests for reasonable adjustments. Our principles of good administration say organisations should act with regard for people’s rights, and should take reasonable decisions, whilst dealing with people helpfully and bearing in mind their individual circumstances.

28. We can see that happened in P’s case. The Trust considered Mrs Q’s request and explored whether it could meet this by carrying out a cognitive assessment at P’s home or school. Unfortunately, the Trust could not meet this request for technical reasons. We consider the Trust’s decision it could not meet this reasonable adjustment request was reasonable and in line with our principles of good administration.

29. NICE ADHD guidelines state that an ADHD assessment should consider information from multiple settings, rather than relying solely on observations within a preferred environment.

30. Section 1.3.3 states that for an ADHD diagnosis, symptoms of hyperactivity, impulsivity or inattention should cause at least moderate psychological, social, educational or occupational impairment based on interview or direct observation in multiple settings.

31. Our adviser explained the Trust followed this guidance, as it gained information from multiple sources, including P’s school and GP as well as staff making their own observations. They also arranged an observation in his school in April 2024, completing all components of an assessment and adhering to P’s requested reasonable adjustments.

32. Therefore, the absence of a cognitive assessment in an area where P feels comfortable does not indicate the assessment was inconsistent with guidelines. We understand this outcome may be disappointing for Mrs Q. We hope she finds some comfort in our decision that the Trust assessed P in line with NICE ADHD guidelines.

Issue 2 – CAMHS severely delayed P’s assessment by “losing him in the system”

33. Mrs Q stated that her family waited over two years for P to have an assessment. During that time, she states he was lost in the system, which caused further delays. We understand the frustration and disappointment Mrs Q must have felt about this. We appreciate this must have been a difficult time for her and her family.

34. The Trust explained the delay in P’s assessment was due to demand for ADHD services exceeding the available resources. Unfortunately, waiting times are a national problem, which has been reported widely in the media and discussed in Parliament.

35. The NHS constitution says people have a right to start consultant led treatment within 18 weeks of referral. However, in October 2023, an ADHD UK report stated the public were waiting anywhere from 12 weeks to 10 years for an assessment.

36. We recognise P waited around two years for his assessment. During this time, the Trust kept Mrs Q informed about the status of his case. They sent several ‘keeping in touch’ letters and arranged an Initial Comprehensive Assessment (ICA) in August 2023.

37. An ICA is an evaluation tool, used to determine if an individual’s symptoms meet the clinical criteria for ADHD before moving on to a more detailed assessment. We have not seen any evidence P was ever lost in the system although we can understand why it may have felt that way to Mrs Q. The fact the Trust sent ‘keeping in touch’ letters adds weight to the fact P was not lost in the system, but was on a long waiting list.

38. We do not condone long waiting lists, but the situation at the Trust seems to be in line with what is happening in many other NHS organisations. There has been a huge increase in demand for ADHD assessments and the NHS does not have capacity to keep up with this.

39. Across the country commissioners are funding ADHD assessments at alternative providers outside traditional NHS services. Despite this, waiting lists are very long in many parts of the country.

40. In the context of the national picture, we cannot say the long waiting times at the Trust are an indication of any failing on the Trust’s part.

41. We appreciate how difficult the waiting period must have been for Mrs Q and her family. It seems this waiting period was caused by a broader national issue, rather than failings specific to the Trust.

Issue 3 – CAMHS misdiagnosed P as not having ADHD, when further private assessments concluded he does

42. After the Trust decided P did not meet the criteria for an ADHD diagnosis, his GP referred him to a different clinic. Due to waiting times, Mrs Q decided to have P assessed privately by the clinic.

43. The clinic diagnosed P with ADHD, following their assessment. Mrs Q says this diagnosis shows the Trust made a mistake when assessing P.

44. The Trust stated P did not meet the diagnostic criteria in ICD-10.

45. ICD-10 is a diagnostic tool used to recognise several mental conditions and disorders. It was published in 1990 and applies more restrictive diagnostic criteria than more recent tools, such as ICD-11, which was adopted by the World Health Organization in 2022.

46. Our adviser explained ICD-10 does not refer directly to ADHD. Instead, it provides information on hyperkinetic disorder, which refers to the same symptoms as what we now know as ADHD.

47. In contrast, ICD-11 sets out clear criteria on the diagnosis of ADHD, recognising symptoms characterised by inattention, hyperactivity-impulsivity or both. ICD-10 requires the presence of both to recognise hyperkinetic disorder.

48. Since ICD-11 is the most recent version of the tool, it could be argued ICD-10 is outdated. However, our adviser explained it remains a recognised classification system under NHS England. As set out in paragraph 10, ICD-11 is not yet mandatory in England.

49. Based on this, it was not inappropriate for the Trust to refer to ICD-10’s criteria when assessing P. Since ICD-11 was only recognised in 2022, it is still being gradually implemented into healthcare organisations. WHO (2025) recognises that countries will still use ICD-10 during the transition period.

50. Our adviser told us the Trust used ICD-10 suitably and detailed the reasons for not diagnosing ADHD. These included observations and information they received from different parties. As a result, we believe the Trust’s decision not to diagnose ADHD was in line with guidelines.

51. We understand this outcome will be disappointing for Mrs Q. We appreciate the time and effort it takes to bring a complaint to us and would like to thank her for bringing this to our attention. We hope she finds some comfort in knowing the Trust followed procedure. We also hope P’s diagnosis has brought him some relief and support.

1. We have carefully considered Mrs Q’s complaint about the Trust, on behalf of her son, P. We understand that Mrs Q has concerns about the delays in P’s attention deficit hyperactivity disorder (ADHD) assessment and the environment in which the assessment took place. Mrs Q complains the Trust did not consider P’s reasonable adjustments, and as a result, he was not diagnosed with ADHD. We understand how distressing the delays and difficulties in achieving a diagnosis must have been for Mrs Q and her family and we empathise with their situation.

2. Having considered Mrs Q’s complaint, we see no indications of failings from the Trust. This is because the Trust followed appropriate guidelines and used recognised diagnostic tools when providing P’s assessment and diagnosis. We recognise this news will be disappointing and will explain our conclusions in more detail within this report.