15. Before we decide if we should do 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. If we are unable to see anything to suggest something has gone wrong, we do not consider a complaint further.
Testosterone
16. Mr R complains the Trust did not prescribe him testosterone until May 2023. He says if he had it earlier, his mental health would not have deteriorated like it did and it could have helped with his gender dysphoria.
17. Our adviser explained prescribing testosterone on the NHS to individuals under the age of 18 has been argued for and against. There is national debate over prescribing hormones for young people and there are different clinical opinions on whether it is beneficial or not.
18. This resulted in the Cass Review in 2020, that was commissioned to make sure children and young people receive the best possible care and treatment to meet their individual needs. The review specifically addressed the use of hormone treatment and said it was not able to give advice on this, due to gaps in the evidence it had about this. It went on to explain that in some clinical cases, it is reasonable practice to not prescribe hormone treatment like testosterone. But, it added that judgements should be clinically based and based on individual need.
19. The records show that in May 2022 Mr R was sadly not eating and his mental state was at risk of change. Mr R’s case was discussed by his consultant psychiatrist during a multi-disciplinary team meeting (when clinicians from different areas meet to discuss care), with input from the consultant paediatrician. They decided Mr R should not be prescribed testosterone.
20. Our adviser says the Trust’s clinical judgement to not prescribe testosterone was in line with the above Cass Review because it used clinical judgement to consider Mr R’s mental and physical state at the time.
21. We have seen the Trust assessed Mr R on an individual basis, in line with the Cass Review. We hope Mr R is reassured that we have not seen any sign that anything went wrong with this decision.
CBT and ASC screening
22. Mr R says he should have been referred for CBT and ASC screening and this was not done in a timely way. He says if he had been given appropriate treatment for his mental health, he may not have experienced suicidal ideation. He feels if he had been given an autism diagnosis, he would have been able to get the appropriate treatment and understand himself better.
23. NHS guidance explains the expected wait time from referral to assessment for CBT and ASC is 18 weeks.
24. Mr R was referred to CAMHS, in December 2021 for CBT treatment, but the referral was rejected, with advice to attend other services first. Two months later in February 2022, Mr R was referred again and had an initial assessment in April and was put on the CBT waiting list. This was four months after the first referral to CAMHS in December and eight weeks after the second referral for CBT was accepted. This met the 18-week target.
25. Our adviser explained that currently there are long waiting times for CBT treatment and there are no targets in place for how long it will be. They said it was good that the Trust also referred Mr R for a ‘Single Session Family’ therapy and arranged an appointment for 29 July 2022 because of this long wait.
26. Mr R was also referred for ASC screening in February along with the CBT referral. On 6 May the CAMHS ASC pathway team sent out its standard assessment pack with questionnaires, with an initial screening appointment for 25 July.
27. The records show Mr R had an ASC assessment pack on 6 May and his initial screen appointment was 25 July. This means he was offered an assessment within 12 weeks of referral. The assessments for both CBT treatment and ASC screening seem to have been offered in line with NHS guidance.
28. Mrs Y told us Mr R has yet to have his CBT treatment or get a diagnosis of autism. His records do support this. We sympathise with Mr R and understand his frustration with the long waiting period.
29. Our adviser told us the long waiting time was explained on the initial referral and there is sadly a national shortage of resources, meaning many people in need of the service are still waiting for treatment.
30. NICE guidance ‘Autism Spectrum Disorders in Under 19s’ recommends an ASC assessment is started within three months of a referral. But, our adviser explained it is commonly known among clinicians that the average delay between first contacting a health professional and getting a diagnosis is 3.6 years. This was after the House of Commons released a review, ‘Library Debate Pack’, in September 2017 on waiting times for autism diagnosis.
31. We realise Mr R has not had CBT treatment yet or been formally diagnosed with autism. The records show the Trust did refer him for both CBT and ASC screening and he was initially assessed within the NHS timescales. Sadly, there are currently long waiting times to access mental health treatment. We hope our explanation has reassured Mr R that the delays are not because the Trust did something wrong.
Risk of suicidal ideation
32. Mr R says his care providers and school should have been told about his risk of suicidal ideation, because at the time of the assessment in April 2022 he was considered at risk.
33. NICE guidance, ‘Decision-making and mental capacity’ says clinicians should have a thorough understanding of the Mental Capacity Act 2005 and should use this knowledge to influence decision making.
34. NHS guidance on understanding the Mental Capacity Act 2005 says the act is designed to protect and empower people aged 16 and over. It states clinicians must assume someone has the capacity to make decisions themselves, unless it is proven otherwise and wherever possible, help people make their own decision.
35. At the time of the assessment on 5 April, Mr R was 16. Our adviser explained that because of his age, capacity to make decisions on his own was presumed in line with the guidance. Because he was over the age of 16, information could not be shared without his specific consent.
36. The records show that on 5 April Mr R said he wanted to keep everything confidential and not to include his carers in correspondence. The records also show a more detailed assessment of capacity and Mr R was found to be capable of making his own decisions.
37. Mr R’s records show that on 26 April he changed his confidentiality decision and signed a ‘children and young person receiving letters’ form, which states copies of letters were to be sent to him at his home address and he agreed to his parents and GP getting a copy of any medical information. The consent excludes Mr R’s school from getting this information.
38. We have seen evidence that two letters were sent between 5 and 26 April, which include information about Mr R’s risk assessment outcome. The information was shared with Mr R only, in line with the consent decision made on 5 April and in line with the Mental Capacity Act.
39. Mrs Y says there should have been a duty of care to waiver (ignore) Mr R’s consent, due to his risk of harm. She feels the information should have been shared with her and the school because of Mr R’s risk of suicidal ideation.
40. Our adviser explained the Trust would have needed to use clinical judgement to understand whether it was in Mr R’s best interest to breach his decision for confidentiality. They said the risk presented by Mr R would have needed to be greater than breaching clinical confidentiality and potentially his trust in sharing information.
41. NICE guidance on depression in children and young people says the risk of suicide is assessed with a tier system and is briefly categorised as, ‘thoughts, attempts and completion’.
42. The records show that on 5 April Mr R shared that he was experiencing suicidal ideation, meaning he had thoughts about suicide. He disclosed that he had not made any attempts to end his life.
43. Our adviser explained the records support that the Trust used clinical judgement when deciding not to share Mr R’s risk of harm and breach confidentiality. This is because although he was sadly at risk due to his thoughts about suicide, he had not disclosed any attempts to end his life. So, in line with NICE guidance he was considered a tier one risk and his risk was not greater than the need to keep his confidentiality under the Mental Capacity Act.
44. We have decided the Trust acted in line with NICE and NHS guidance on the Mental Capacity Act and used clinical judgement to decide not to breach Mr R’s confidentiality and potentially lose his trust. We do understand and sympathise with Mrs Y’s worry and frustration that she was not told about her son’s increased risk of harm. We hope this clearly explains why the Trust acted in line with guidance and how it did not want to compromise its relationship with Mr R.
Gender dysphoria and mental health support
45. Mr R says the Trust should have given him more support for his mental health and gender dysphoria. He says if it had, his mental health may not have deteriorated.
46. It is important to note the Cass Report also explains there is a national shortage of resources for children and young people with complex mental health and this needs to improve.
47. BMA guidance on advice and support for GP practices says doctors can refer individuals for specialist services, if they feel it is necessary, without input from a mental health service.
48. In line with this it seems Mr R’s GP decided he needed to be referred to a specialist gender identity development service (GIDS) alongside the referral to CAMHS for CBT and ASC assessments. The GP referred Mr R to GIDS in February 2021.
49. The records show the GP did not tell CAHMS it had also made the referral to GIDS. This seems to be in line with the BMA guidance that says GPs can refer individuals to specialist services without input from a mental health service. But, our adviser explained that in Mr R’s case it would have been useful for GIDS to have worked jointly with CAMHS to help coordinate his care.
50. That said, the Trust was not responsible for the GP’s decision not to tell CAMHS about the referral to GIDS. Because the Trust’s CAHMS did not know about the referral, it could not coordinate with GIDS about care and treatment. We can also see a private provider was involved with GIDS and we cannot comment further on this. We are sorry for any upset this may cause.
Gender dysphoria, eating disorder and mental health support after discharge in May 2022
51. Mr R says he did not get the support he needed for his gender dysphoria, eating disorder and mental health after his discharge from the Trust in May 2022.
52. Mr R was referred to the eating disorder service on 11 May 2022, after a period of restrictive eating associated with excessive exercise and lack of menstrual cycle. This referral was rejected on 12 May because the service needed more information. Further information was submitted on 12 May and the GP noted a possible diagnosis of atypical anorexia.
53. The Trust felt Mr R’s main concern, driving his eating disorder, was his lack of hormone treatment, due to his gender dysphoria. The records show the Trust recommended a community dietician and support from CAMHS, as well as GP input. In addition to this, remote eating disorders support links were provided. The Trust explained that Mr R needed to be re-referred with a blood test and an echocardiogram (ECG).
54. NICE guidance on ‘eating disorders: recommendations and treatment’ says clinicians should make sure that all people with an eating disorder and their parents and carers have equal access to treatment, regardless of gender or gender identity.
55. Mr R was referred again on 17 July after he had been admitted to hospital. An urgent assessment was given by the eating disorder service and he was diagnosed with atypical anorexia. The records show a safety plan was put in place.
56. The records show the initial referral was rejected with a recommendation for Mr R to be referred for community support and to have blood tests as well as an ECG. We can see Mr R’s circumstances had not changed between the referral in May and the one in July, but when he was admitted to hospital, bloods and an ECG were done. His second referral for his eating disorder was then accepted.
57. In line with NICE guidance, it seems the Trust missed an opportunity to refer Mr R in May, because it did think he had an eating disorder even if the main reason for this was his gender dysphoria. But, the advice it provided when initially rejecting Mr R’s referral and saying to get community support and have blood tests and an ECG was in line with NICE guidance. This is because it was continuing to gather information about his condition.
58. We asked our adviser about the impact this missed opportunity to refer Mr R in May rather than July could have had on him. Mr R’s mother told us his mental health deteriorated, which led to suicidal ideation and increased risk of harm. Our adviser explained because he was already sadly experiencing these feelings, we cannot specifically link this impact to the two-month delay. They said Mr R’s care was highly complex and he was offered advice on getting more tests then re-referring to the service with this further information.
59. NICE guidance on eating disorders says, ‘review the needs of the person every 4 weeks after treatment begins and then every 3 months to establish how regular sessions should be and how long treatment should last’.
60. The records show Mr R’s follow up appointments after his referral was accepted were within these timescales. The Trust also organised a parent’s group, in line with NICE guidance, to support Mrs Y.
61. NICE guidance on coordination of care for people with an eating disorder says clinicians should take particular care to make sure services are well coordinated when there is more than one service involved.
62. There were different services involved in Mr R’s care including GIDS, CAMHS and the eating disorder team. The records show there was limited coordination between these services. In line with NICE guidance, the Trust should have provided more coordination between services.
63. Our adviser explained the number of appointments offered by each individual service was in line with the guidelines for CAMHS and the eating disorder service. GIDS is not a service provided by the Trust so we cannot comment on this. But, given the complexity of Mr R’s case our adviser explained it might have been more helpful to have a consultant psychiatrist or another appropriate consultant to lead and coordinate the care and this could have helped communication and coordination between the services involved.
64. The records show a lead consultant was not put in place, but there is no specific guidance to say this should happen. GMC guidance on communication says children should be included in all discussions about their care and their views and concerns should be considered. Doctors should make sure all professionals are aware of their role and knowledge and skills are appropriately delegated to make sure there is continuity of care for the patient.
65. The Trust’s communication between services was not in line with GMC guidance in Mr R’s case, but it does seem that he did have appointments from each individual service. We can clearly see that both Mr R and his mother were frustrated and felt like there was not enough support provided. We can understand how the lack of coordination would have made this confusing.
66. We did not see evidence that this directly led to Mr R’s mental health deterioration, suicidal ideation or increased his risk of harm because he was being cared for by each service involved.
67. We can see the individual services involved have apologised for any confusion they may have caused. We hope Mr R is reassured that all the services involved did provide the correct level of care, despite the overall standard of communication falling below what is expected.
68. Our Principles say in many cases an apology and explanation may be a fair and appropriate response. They say each complaint should be considered on its own merit and thought should be given to the level of impact any failing had on the complainant.
69. We hope Mr R is reassured that the Trust has apologised for the confusion it caused, in line with our Principles. This is what we would expect the Trust to do and we do not think it needs to do anymore to put the lack of communication right.
Review
70. Mr R says that on 27 May 2022 his psychiatrist told him he would have a medical review in two to three weeks. He says this did not happen until over 12 weeks later, on 23 August. The records show the Trust has acknowledged and apologised for this delay.
71. We asked our adviser about the potential impact this delay may have had on Mr R. Mr R told us the impact of this was that his mental health got worse. Our adviser explained the delay would not have had a specific or measurable impact on his overall condition. This is because other members of the multidisciplinary team involved with Mr R’s care and treatment during this period, were still involved despite the delayed medical review.
72. We are satisfied the impact of this delay has already been addressed by the Trust and it has done enough by acknowledging and apologising for the delay.
73. We are very sorry to hear about Mr R and his Mrs Y’s experience and the impact it had and continues to have on them. We hope our investigation gives them confidence that we have examined the evidence and have seen the Trust followed the relevant guidance and where it did get something wrong, it has addressed it and put things right.