16. 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.
17. If we do find signs that the organisation got something wrong, we look at whether there are signs this had a negative effect which the organisation has not put right.
18. We have done this and have not found any indications that something has gone wrong or that care and treatment was provided outside of the established standards. We explain our decision in more details below, under subheadings relating to Mr B’s specific points of complaint.
Discharge from the emergency department without transport
19. Mr B says P was discharged on two occasions without transport being arranged for him. He says this meant P had to walk home by himself late at night, and this was not safe for him.
20. P’s healthcare records show that he frequently attended the Trust’s emergency department for support with mental health crises. On most occasions, P made his own way to the emergency department independently.
21. Most of the times P attended the emergency department, the Trust booked taxis for him to take him home when he was ready to be discharged. We could see several occasions where it was recorded P left the emergency department without being formally discharged from hospital. As P had not been discharged by the Trust on those occasions, no transport home was arranged for P.
22. We also saw there were a few occasions when police brought P to the emergency department for a mental health assessment. On each occasion P was taken to the hospital by police, he was either admitted or transport was arranged to a safe place once he was discharged. There was one occasion when P was found by police after his father had reported him as a missing person, and taken to hospital to see the crisis team. P walked out of the hospital overnight at 3am in the morning, without being discharged.
23. On the occasions P left the department without transport being arranged, he had not been discharged from care and left of his own volition. We could not see any indication that P was discharged home from the Trust’s emergency department without appropriate transport being arranged for him.
24. We have not seen any indication that the Trust did anything wrong in failing to arrange transport home on those occasions. For this reason, we will not be taking further action on this issue.
Medication provided was not enough or was provided late
25. Mr B says he had to chase up P’s medication on several occasions, with this sometimes being provided late, and not enough medication was provided to P.
26. NICE depression guidance says clinicians should limit the quantity of medicines supplied for patients at risk of self-harm or overdose, and recommends daily or weekly prescriptions be supplied in those circumstances. NICE service user guidance also recommends careful prescribing when there is a risk of suicide or overdose, and liaising with family or carers for safe storage and monitoring of medication. The General Medical Council (GMC) guidance explicitly supports restricting supply or frequency where there is risk of harm or misuse. GMC guidance adds doctors must consider patient safety above convenience (of access to medication).
27. The healthcare records make several references to P overdosing on medication, even when he only had a limited supply of medication. Our nurse adviser says it is clear that providing P with monthly prescriptions for medication (as might usually happen) put him at significant risk of overdose. It would have been unsafe to provide P with more than a few days of medication at a time whilst he was experiencing impulses to overdose. We consider it appropriate in these circumstances that only limited amounts of medication were provided to P when they were requested.
28. The healthcare records show medication was provided for P when Mr B requested this. Sometimes this meant there was a gap in P’s medication, as Mr B often did not request medication until it had run out. Patients or their carers should request additional medication in good time, particularly for ADHD medications, to ensure they can receive the new medication before they run out.
29. We have seen no indication of failings in the Trust’s decision to only provide P with a few days’ worth of medication at a time, during a period in which he was prone to taking overdoses. We think this was appropriate considering the risks to P’s safety of providing more than this amount of medication.
30. For this reason, we will not be taking further action on this issue.
P became aggressive when the Home Treatment Team visited
31. Mr B says P became aggressive after a visit from the Home Treatment Team. On reviewing the Home Treatment Team records, this appears to relate to events in February 2021.
32. On 7 February 2021, early in the morning, Mr B informed the team that that P had recently been aggressive at home and had hit his sister. The Home Treatment Team had not visited P that day and the last occasion we can see P had contact with them was on 30 January. We have not seen any indication that the Home Treatment Team’s attended triggered P’s aggressive behaviour.
33. The healthcare records completed by the Home Treatment Team state P was not aggressive on any occasion during their visits. They recorded P as plausible and presentable on each occasion. We have seen no indication of any inappropriate communication between the Home Treatment Team and P or any suggestion he was aggressive on any other occasion other than the one recorded on 7 February 2021.
34. For this reason, we will not be taking further action on this issue.
CBT or counselling were not provided
35. Mr B complains the Trust failed to provide Cognitive Behavioural Therapy (CBT) or counselling to P.
36. The healthcare records show P attended counselling at the Trust between April and July 2021. A referral was made to another local organisation for CBT in July 2021, but this referral was not accepted by the other organisation as P’s transition to the adult mental health service was pending.
37. NICE transition guidance states there should be no gap in care during the transition process from child to adult healthcare services. It says there should be no gap in therapy, even if adult services is not in place.
38. NICE ADHD guidance says transition for young people with ADHD should include joint working between the two services and continuation of ongoing treatment, including therapy and medication, until adult services take over.
39. Our nurse adviser says it is not appropriate to start new therapies during a transitions process. The transitions from child to adult mental health services is a high risk for young people, so starting a new therapy such as CBT during the transition process would not have been appropriate.
40. Our psychiatry adviser says psychosocial and behavioural interventions such as talking therapies should always be considered for patients with ASD and ADHD, according to their capacity to engage with this type of treatment. Both NICE ASD guidance and NICE ADHD guidance recommend that structured psychological interventions such as CBT should be considered when the patient is able to engage with this and can help with specific issues such as anxiety, mood or behavioural regulation.
41. We have seen that counselling was in fact provided to P during this period. It would not have been appropriate for P to start a new therapy such as CBT during the transitions period, and it seems the referral for CBT was rejected by the other organisation for this reason. We have not seen any indications of failings in relation to the provision of counselling, which was provided, or CBT, which we agree was not appropriate to start during the transitions process.
42. For these reasons, we will not be taking further action on this issue.
ADHD medication was stopped
43. P was prescribed methylphenidate, a medication to treat symptoms of ADHD. P reported to his psychiatrist on 13 February 2021 that he had decided to stop taking this the previous month. He said he was feeling settled without undue restlessness. P’s psychiatrist stopped methylphenidate and prescribed risperidone. The psychiatrist explained risperidone was only appropriate to prescribe to P on a short-term basis.
44. Risperidone is an atypical antipsychotic medication, sometimes prescribed for young people with ASD who present with significant irritability, aggression or behavioural disturbance.
45. NICE ADHD guidance says if ADHD symptoms no longer cause impairment, a trial off medication should be considered, with careful monitoring. It says ADHD medication (in this case, methylphenidate) should only be continued while benefits outweigh the risks, and decisions to discontinue treatment should be made collaboratively with the patient and carers.
46. NICE ASD guidance sets out guidelines for the management of autism spectrum disorder in adults. This guidance supports limited use of risperidone to manage challenging behaviour, when psychosocial and environmental interventions have not been sufficient. Risperidone use in this situation should be regularly reviewed and discontinued when no longer indicated or effective.
47. P’s consultant reviewed P’s medication on 7 October 2021. They noted P appeared stable and was not presenting with ADHD symptoms that required medication at that time. They felt there was no justification for continuing anti-psychotic medication and decided P should wean off risperidone. Mr B says he did not agree with the decision to stop prescribing risperidone to P.
48. GMC’s Good Medical Practice also says doctors should prescribe medication only when necessary, and review them regularly. The Royal College of Psychiatrist’s STOMP (Stopping Over Medication of People with Intellectual Disability) initiative also advocates this approach.
49. Our psychiatry adviser says risperidone is not a treatment for ADHD itself, but may be helpful for patients with both ASD and ADHD to help manage agitation, impulsivity, or emotional dysregulation when symptoms are severe.
50. NICE service user guidance recommends shared decision-making with patients and carers in treatment planning. The medication plan was discussed with P and Mr B.
51. The decision to stop the medication was in line with NICE and GMC guidance. P continued to have his need for medication reviewed afterwards, in line with this guidance.
52. We have not seen any indication of failings in the decision to stop prescribing P was medication to manage his ADHD symptoms. For this reason, we will not be taking further action on this issue.
Transition from child to adult mental health services
53. The Trust has a transitions policy that sets out the process to follow for young people under care of CAMHS. This says a referral from the child to adult mental health services should be made six months before the young person reaches the transition age of 25 years.
54. The Trust’s transitions policy makes clear not all young people under its care would meet the criteria for services from the adult mental health service. It does say the adult service provides assessment and support for people with ADHD, which at the time the transition process started, P was receiving treatment for.
55. We take note that nationally, adult mental health services are not as well equipped as children’s mental health services to manage neurodevelopmental issues (including ADHD and ASD) in young adults. Resources tend to be very limited, aside from prescriptions and monitoring of ADHD.
56. NICE transition guidance and NHS England transition guidance say transition should be a planned, coordinated process beginning at least six months before transfer, involving both child and adult services and centred around the young person’s developmental readiness for the transfer, not simply their age. NICE transition quality standard reinforces that children’s and adult services should work together to create a joint, coordinated plan for the young person before their discharge from the children’s service.
57. P turned 25 years old in February 2021. This means the transitions process could have started around August 2020, or later if he was not considered ready at that time to transfer to adult services.
58. The adult mental health service (AMHS) in P’s local area is run by a different Trust (the AMHS Trust).
59. P’s community mental health records between February and June 2021 show psychiatrists and mental health nurses made numerous notes referring to his pending transition to the AMHS Trust. It is clear that, from the Trust’s point of view, it had followed its processes and responsibilities in relation to P’s transition to adult services. All the notes referencing the transfer to the AMHS Trust made it clear they expected the transfer to happen soon.
60. The AMHS Trust held a MDT (multidisciplinary team) meeting on 14 May 2021, at which they discussed P’s transfer to their care. They identified P was still in crisis and needed to be stabilised, so they did not formally transfer him to the AMHS Trust’s care at that time.
61. A note in the community records in June 2021 noted P did not meet the criteria for the AMHS Trust’s services and the community CAMHS team was asked to refer P to the adult ADHD service. As P was not currently engaged with any ADHD interventions (as his ADHD medication had been stopped at that time), CAMHS noted any referral to the ADHD service would not be accepted at that point.
62. On 23 July 2021 a note states a further referral to the adult mental health service was completed. P was reviewed by his CAMHS psychiatrist on 12 August 2021, at which time it was noted P’s transfer to the adult mental health service was pending.
63. P’s GP referred him to the AMHS Trust on 29 October 2021. The GP noted P had been discharged from CAMHS and asked for an urgent review as P’s condition changes frequently.
64. The AMHS Trust discussed P’s transfer at its MDT meeting on 5 November 2021. The MDT team agreed its services were not appropriate for P.
65. On 10 November the AMHS Trust wrote to P’s GP to advise that P was stable without any anti-psychotic medications. It said P was not suitable for its service, and the GP should consider a referral to the ADHD service, and possibly the autism service.
66. It appears to us the AMHS Trust did not accept the transfer of services because there was a mis-match between its own threshold for accessing its services, and CAMHS’ threshold for services. Additionally, there were times P’s needs were considered complex, times of crisis (during which a transfer of care cannot go ahead), and questions about whether he needed a specialist ADHD or ASD service rather than a mental health service. Our psychiatry adviser says this reflects a nationally recognised gap in care where young people with neurodevelopmental disorders (which include ADHD and ASD) often fall into a gap between child and adult mental health service criteria.
67. The CATCH-uS study was set up to look into services for young people with ADHD when they became too old for children’s services. It was recognised that many young people with ADHD were unlikely to transfer to adult mental health services as ADHD was considered to be a neurodevelopmental disorder of children.
68. This study found that ADHD services were unevenly spread across the UK, with GPs often left to fill gaps in care and prescribe ADHD medication without specialist backup. Where adult ADHD services do exist, these often only offer limited support with a focus on medication. The study recognises transition of young people with ADHD from child to adult mental health services poses particular challenges, with the thresholds for accessing services differing between the child and adult services. Young people with neurodevelopmental disorders such as ADHD are less likely to be transferred from child to adult services.
69. Although P presented frequently to the crisis mental health team at the emergency department, he was not considered to have significant mental health issues. The main concerns were unmet needs that were social in nature, and P’s issues were considered behavioural and arising from ADHD and autism, rather than due to any severe and enduring mental health condition.
70. The eligibility threshold for adult mental health services is much higher, and P was kept within the children’s services for as long as possible. We could not see indications that the transition process was started when P was aged 24 years and 6 months old, although we note that the young person’s maturity rather than physical age should be taken into account in deciding when to start the transition process.
71. The Trust followed its own transitions policy and acted in line with its procedures in its attempts to work on a transition for P from child to adult mental health services. The failure to transfer P appears to relate to a systemic and nationally recognised issue with a lack of services for adults with ADHD and ASD, which is outside of the responsibility of the Trust. The adult mental health service is provided by a different NHS Trust.
72. The Trust told Mr B in response to his complaint that the transfer of care to another service can be difficult due to different NHS Trusts having different criteria for its services.
73. We have not found indications of failings in the transition process on the part of the Trust. For this reason, we will not be taking further action on Mr B’s complaint.
Conclusion
74. We found the Trust acted in line with national guidance and standards and its own policies on each aspect of care and treatment complained about. We hope this provides reassurance to Mr B that the care and treatment provided was appropriate at the time and that the Trust did make attempts within its own boundaries to transition P to adult services.
75. The Trust acknowledged in its response to Mr B’s complaint that communication with Mr B around P’s care could have been better. It says it had taken action to share Mr B’s experience with the clinical teams in order to improve communication with families and young people. It has also worked on improving its transition policy to ensure young people do not have a gap in care during the time of transition.
76. We can also see the Trust has recognised there were issues in transition planning and communication with young people and their families, and put in place service improvements. We do not think there is anything further we can do to resolve Mr B’s concerns.
77. We understand P is now receiving support and medication from the adult ADHD service and hope he is finding benefit from this.
78. We recognise that this will not change Mr B’s experiences or his perception of the difficulties of managing P’s behaviour during this time, and the distress this caused to him and his family. We thank Mr B for bringing his complaint to us.