ADHD Diagnosis
16. The Law states that a person must bring their complaint to us within one year of becoming aware of their reason to complain. We are unable to investigate complaints submitted outside of this timeframe unless we consider there is a good reason to do so. We consider Miss L submitted her complaint to us outside of this timeframe, and so we have discussed this with Miss L to understand the reasons why she could bring the complaint to us sooner.
17. From the medical records we have reviewed, we can see that G was referred to the ADHD pathway for assessment in June 2020. On 14 June 2021 the Trust held a diagnostic discussion meeting and determined that G did not meet the criteria for an ADHD diagnosis.
18. We consider this was Miss L’s first date of knowledge, as she was informed of the outcome of the assessment and in her complaint to the Trust, she stated she felt very strongly that G had ADHD throughout this assessment period. Following this, on 28 July 2021, Miss L was also informed that G had been diagnosed with autism. We recognise it must have been frustrating for Miss L to feel that this assessment did not achieve the outcome that she was hoping for.
19. As June 2021 was Miss L’s first date of knowledge, to be within our time limit, Miss L would have needed to bring her complaint to us by June 2022. However, Miss L submitted her complaint to us in October 2024, which is two years and four months outside our time limit.
20. Following the decisions made in June and July 2021, we cannot see any other action was taken until Miss L referred G into CAMHS for an ADHD assessment in April 2022. We asked Miss L what was happening during this time that stopped her from raising her concerns. We understand that G underwent an assessment for an Education, Health and Care Plan (EHCP) in December 2021 which concluded in March 2022. Whilst we recognise this was a period of assessment, we do not consider it was a barrier for Miss L to raise her concerns with the Trust as the EHCP process is managed by the local authority and is separate to the ADHD diagnostic pathway.
21. This is a period of delay of approximately nine months in which no action was taken to request further assessment or to make a complaint about the outcome of the assessment.
22. The neurodevelopmental panel considered Miss L’s request for an assessment at a panel meeting in May 2022. On 26 May 2022, the Trust wrote to Miss L advising there was no indication an ADHD assessment was required at that time for G. We recognise must have been frustrating for Miss L to feel like her concerns for her son were not being listened to.
23. We consider this was a second date of knowledge for Miss L. Following this, we cannot see any other action was taken until G was escalated to the CAMHS crisis team in January 2023.
24. We asked Miss L what was happening during this time that prevented her from raising her concerns. Miss L told us she experienced delays due to the waiting list. We have not seen any evidence within the medical records we have reviewed that G was on a waiting list during this time. For this reason, we have not identified any barriers to Miss L raising her concerns and we consider this was a further period of delay of approximately seven months in which no action was taken to request a further assessment or to make a complaint about the outcome of the April 2022 referral.
25. Following the referral to CAMHS in January 2023, G was observed at school, and a behaviour support plan was put into place. This was reviewed by the neurodevelopmental panel in March and May 2023. In May 2023 Miss L was advised G had been accepted for an assessment for ADHD. In March 2024, Miss L attended a feedback appointment, and it was during this appointment that G received a diagnosis of ADHD. We recognise this period is attributable to the ADHD assessment process.
26. Following the diagnosis, Miss L raised her concerns with the Trust approximately two months later, in May 2024. We asked Miss L about the reasons for delay between diagnosis in March 2024, and raising a complaint in May 2024.
27. Miss L told us she sought advice from her representative at SENDIASS (special educational needs and disabilities information advice and support service), who advised her of the correct process to follow to raise her concerns. Miss L then approached an advocacy service, who helped her raise her concerns with the Trust. We recognise it can take time to decide upon next steps and seek help from advocacy services, and therefore we are not critical of this period of delay.
28. Miss L received a final response from the Trust in October 2024. The time between May and October 2024 is attributable to local resolution and was not caused by any inaction on Miss L’s behalf. Miss L then submitted her complaint to our Office two weeks later, at the end of October 2024.
29. Miss L explained to us that she felt that she followed the correct route by addressing her complaint directly with clinical staff. We understand why she followed this route, as this may have resolved her concerns without the need to raise a formal complaint. However, this does not account for the periods of delay between June 2021 and April 2022, and between May 2022 and January 2023, as explained above.
30. In conclusion, we have carefully considered Miss L’s reasons for delay, the time taken for the Trust to carry out assessments and consider referrals, and the time taken for the Trust to respond to Miss L’s complaint. After doing so, we have not seen sufficient evidence to allow us to put the time limit to one side. We recognise this decision will be disappointing for Miss L.
31. Whilst we are unable to consider this aspect of Miss L’s complaint, should she wish to pursue this matter further, according to the Limitations Act, there is no time limit for a complainant if the claimant was a child (under the age of 18) at the time of injury. Therefore, there would be no time limit to seek legal advice for this case (Limitations Act 1980 s.33).
ADHD medication and medication titration
32. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
33. Miss L complains that whilst G was diagnosed with ADHD in March 2024, the Trust did not prescribe medication until September 2024. She considers this should have been done as a priority following his diagnosis, and when she raised concerns about his escalating behaviour in July 2024.
34. In the Trust’s response from September 2024, it stated as part of G’s care plan, the ‘Getting More Help’ team offered a parent factor programme in the first instance before medication. The parent factor programme is for parents of children up to 16 years who have a diagnosis of ADHD. The aim of the programme is to equip parents with insight, knowledge, and skills on how to understand and work with their child’s ADHD. The Trust says Miss L agreed to accessing the course in the first instance.
35. The Trust also explained that at this time, there was a national shortage of ADHD medication, and the national advice was not to initiate ADHD medication.
36. Our adviser confirmed there is no national guidance on the timing of ADHD medication after diagnosis, however, NICE G87 says medication should not be the first line of response and medication should only be prescribed after environmental modifications have been trialled and reviewed for effectiveness (point 1.5.13). NICE G87 also says healthcare providers should ensure continuity of care for people with ADHD (point 1.5.1). Our adviser explained that in practice, this means patients who are already prescribed medication are a priority to guarantee their continuity of care.
37. When Miss L contacted the CAMHS crisis team in July 2024 and reported difficulties with G’s behaviour, a priority appointment with a medic was arranged to consider medication. This appointment was arranged for August 2024 and resulted in G being prescribed methylphenidate.
38. From the evidence we have considered we can see the Trust allowed adequate time for environmental changes to be trialled and reviewed for effectiveness. When it became apparent this had not been effective following contact from Miss L in July 2024, an appointment was arranged as a priority to review the need for medication.
39. We consider the Trust’s actions and considerations were in line with the NICE G87, and therefore, we consider there was no failing from the Trust to not prescribe medication sooner than it did.
40. Miss L also complains about delays in the Trust increasing G’s medication after she raised concerns that G was presenting with signs of increased agitation and aggression in October 2024. She is concerned the Trust was not titrating his medication appropriately.
41. In response to the complaint, the Trust explained that G’s medication was reviewed during appointments on the 13 August 2024 and the 2 October 2024. It explained that the team must ensure they follow national guidance on prescribing and ensure they are not increasing medication too quickly to prevent unwanted side effects or contraindications.
42. The BNF guidance for methylphenidate advises prescription with caution if there are signs of agitation, and lists aggression and hostility as common/very common side effects. Our adviser explained that this alone would not have been an indication G needed his medication dosage increased sooner than it was.
43. Further to this, NICE G87 advises dose titration is slower in patients who have ADHD and neurodevelopmental disorders, including autism, and that monitoring should be more frequent (point 1.7.28). It also recommends monitoring the effectiveness of medication for ADHD and any adverse effects (point 1.8.1).
44. We can see with each prescription G was given a 30-day supply of his medication. Our adviser explained this is common practice as it is a controlled drug. We understand this allows for the medication and any side effects to be monitored appropriately, in line with NICE G87.
45. Taking this into consideration, we consider G’s medication was titrated in an appropriate timeframe in line with NICE G87 as the Trust took measures to ensure they were not increasing medication too quickly and to monitor side effects. For these reasons, we have not identified any indications of a service failure relating to this part of the complaint.
46. We thank Miss L for taking the time in bringing her complaint to our attention. We hope our explanation brings some reassurance that the care and treatment G received. We wish Miss L and her family the best for the future.