Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

5. Mrs R complains about the following aspects of the Trust’s care and treatment of Mr R, between September 2018 and September 2019: · Mr R was under the care of the Children’s and Young People’s Service (CYPS) and in a clinic letter, dated 11 September 2018, a plan was agreed that Mr R would be allocated a care coordinator to provide one-to-one sessions, as well as attention deficit disorder (ADHD) review. A care coordinator was never allocated · Mr R was discharged from the service in May 2019 despite being identified as being a danger to himself and potentially others, and at risk of harm · the Trust failed to explore or diagnose Mr R’s symptoms of FAS.

6. Mrs R tells us the discharge from the Trust was unfair and harmful to Mr R’s mental health. Mr R was re-housed in supported housing accommodation in a different area and his care was transferred to another Trust. This was disruptive to his care and moved him away from his family and into an unfamiliar area. Although Mr R is now back in his hometown, the impact of these events on his mental health is still there, and he suffers from depression and anxiety which affects his daily life.

7. As an outcome to the complaint, Mrs R is seeking service improvements across CYPS, as well as an acknowledgement of failings. If appropriate, Mrs R would like a financial remedy for Mr R, to put right the impact this has had and to help him get back on the right path.

8. Mrs R tells us that Mr R has ADHD, autism spectrum disorder (ASD), attachment insecurities, and FAS.

9. Mr R was due to attend an ADHD review with the specialist ADHD nurse on 24 August 2018 but did not attend. Mrs R attended the review and explained the problems they were having with Mr R’s behaviour. She explained that Mr R was not taking his ADHD medication when not at home, and that he was experimenting with drugs and alcohol. Mrs R explained to the specialist nurse that she felt Mr R needed to be reviewed by a psychiatrist. The specialist nurse agreed to discuss this with the lead psychiatrist and Mr R’s social worker to see what action could be taken.

10. The specialist nurse contacted the psychiatrist to discuss the concerns about Mr R. The psychiatrist suggested they arrange a strategy meeting and to speak with Mr R’s social worker and the safeguarding team. The specialist nurse spoke with the safeguarding team in August 2018 about the family situation. Social services contacted the specialist nurse on 31 August 2018 to advise they were holding a strategy meeting on the same day, however due to the last minute nature of this correspondence, they were unable to attend.

11. On 7 September 2018, an email was sent to the specialist nurse and the psychiatrist from the safeguarding team, as Mr R’s case was being reviewed for an upcoming multi-agency risk assessment conference (MARAC). They were asked to consider if Mr R needed to be seen to ensure there were no additional mental health concerns, and to review his medication, given the concerns raised by Mrs R.

12. A review was arranged to see Mr R on 11 September 2018. On the same day, the MARAC took place. The resulting plan included updating Mrs R on her options and contacting children’s services to speak to Mr R’s social worker.

13. Mr R was reviewed by the psychiatrist on 11 September 2018. The outcome of the review was for Mr R to continue taking medication for his ADHD, to continue regular ADHD reviews with the specialist nurse, and for Mr R to be allocated a care coordinator from the mental health team to provide one-to-one sessions. From Mr R’s records we can see a referral for a care coordinator was made on 16 September 2018.

14. Mr R’s progress notes record that on 3 October 2018 he was to be allocated to a clinician for support and to assess his current presentation. An email on 17 October 2018 from the clinician to social services explains that the clinician was working their notice and was due to leave the Trust in November. It was explained that due to upcoming leave, there was a very limited timescale to set up some sessions before they left, but they were looking to do this.

15. In January 2019 Mrs R called the specialist nurse to say that while Mr R’s behaviour had not been as bad, he was not taking his medication consistently. Mrs R also explained that they were still waiting for a care coordinator for Mr R. It was noted that a review would be arranged, and the allocation of a care coordinator would be chased.

16. An ADHD review took place on 19 February 2019. The outcome of the review was for Mr R to continue taking his medication, for the specialist nurse to seek advice and a possible consultation with a psychiatrist, as well as a further review to be arranged.

17. The specialist nurse contacted the psychiatrist the following day to discuss the concerns about Mr R. They explained that although Mr R had initially been allocated a care coordinator, the clinician had since left the Trust and no further support had been arranged. The psychiatrist offered an appointment for Mr R to further assess his mental health, and an agreement made to chase up the allocation of a care coordinator.

18. Mr R was seen for a psychiatric assessment on 5 March 2019. The outcome of this assessment was for Mr R to continue taking his medication, to continue his ADHD reviews with the specialist nurse, and to chase up the referral for a care coordinator for one-to-one sessions.

19. A follow up review took place on 9 May 2019, however, Mr R was not present at this review due to ongoing concerns about his difficulties at home.

20. Mrs R expressed her worries about Mr R’s vulnerability and his risk taking behaviour. She also advised that if he was unhappy living with them, they were open to social services placing him in voluntary supported accommodation. It was agreed that a strategy meeting would be called to decide how to proceed.

21. The notes from the strategy meeting explain that social services would not try to find Mr R any accommodation even though relationships had broken down at home. The psychiatrist outlined that the role of the Trust was to provide ADHD reviews, and as Mr R was no longer taking his medication he would be discharged from the service.

22. The Trust wrote to social services mid May 2019 asking for them to review the case because of Mr R’s recent behaviour and increased risk, and that it reviewed the management plan to provide him with more support.

23. Mrs R contacted the Trust later in May 2019 to speak with the psychiatrist. Due to the concerns raised by Mrs R, it was agreed that the Trust would keep Mr R open to CYPS until it had discussed the situation with the safeguarding team and social services again.

24. The progress notes show that between May and June 2019 discussions were taking place with the safeguarding team about Mr R’s care.

25. The Trust received a referral from Mr R’s college in June 2019 and the team called Mrs R, who thought Mr R had been discharged, however she was advised that he was still open to the CYPS team and a follow up appointment was made.

26. The Trust received a second referral from social services at the beginning of July 2019. Social services requested a forensic assessment to support Mr R’s risk management. They were contacted on the same day and asked to arrange a professionals meeting to coordinate multiagency future planning.

27. Forensic CAMHS (FCAMHS) did not receive a response from social services and wrote to them mid July 2019 advising that if they no longer wished for their input, Mr R would be discharged from their service on 31 July.

28. A meeting took place on 30 July 2019 and the forensic assessment referral from social services for a was discussed. A professionals meeting was arranged for 27 August 2019.

29. Mr R was seen by the specialist nurse on 20 August 2019 for an ADHD review. It was noted that as Mr R had moved out of the area, he would be discharged from the Trust but also because he no longer wished to take his medication.

30. The professionals meeting took place on 27 August 2019. In the meeting it was noted that the possible diagnosis of FAS could not be formally confirmed due to not being able to access full information about Mr R’s birth family, specifically the history of his birth mother’s alcohol use and the extent of it during pregnancy.

31. During the meeting it was agreed that the Trust (CYPS and FCAMHS) would transfer his case over to their colleagues in the area Mr R had moved to. The psychiatrist also agreed to send a letter to the paediatricians in the new area to request an assessment for FAS, and social services agreed to make efforts to find Mr R’s early birth records for supporting evidence.

32. Referrals for transfer were made to the Tees Esk and Wear Valley NHS Foundation Trust (the TEWV Trust) on 28 August 2019. On 5 September 2019, a referral was also made to CAMHS/CYPS and a letter sent to the paediatricians.

Allocation of a care coordinator

36. Mrs R tells us that when Mr R was assessed in September, a plan was agreed with the consultant psychiatrist that a request would be made for Mr R to be allocated a care coordinator from the mental health team to provide one-to-one sessions, as well as the specialist ADHD nurse continuing with his ADHD reviews.

37. Mrs R says no care coordinator was ever allocated, despite regular reviews of the waiting list. Mrs R tells us she reminded the management team every week that Mr R was waiting to be allocated support and informed them of his behaviour. However, there was a lack of communication, and they did not receive any updates about this throughout Mr R’s time with the service.

38. We have reviewed Mr R’s records and note that a referral for one-to-one support was made on 16 September 2018. Mr R was allocated to a clinician for support on 3 October 2018. The allocated clinician was working their notice at the time and was due to leave the Trust in November 2018. It is our understanding that no appointments took place between Mr R and his allocated one-to-one support before the clinician left the Trust. Mr R was then put back on the waiting list.

39. The referral for one-to-one support was chased by Mr R’s specialist nurse on 19 February 2019 and by the psychiatrist on 5 March 2019. Mrs R was also chasing the service about this referral. A clinician was not allocated and Mr R was transferred out of the service in September 2019.

40. We have reviewed the Trust’s Care Coordination within Children and Young People’s Services policy. The policy explains that at each review, it should be considered if the young person’s needs have changed, and, if appropriate, whether the level of care coordination needs to be changed. However, continuity of this role is to be encouraged unless the clinician is no longer to be involved in the young person’s care and treatment.

41. The policy also explains the role of care coordinators. The appropriate CYPS worker to take the role of care coordinator will be decided on a case-by-case basis and should be the most appropriate person, given the young person’s needs. The care coordinator has a responsibility to contact the young person at agreed intervals, provide care planning, review arrangements, and communicate effectively with all those involved in the young person’s care.

42. The Trust has advised that while there is no official policy, the expected standard for allocating a care coordinator is 18 weeks. It explains that the waiting list is reviewed on a weekly basis by the clinical lead, who will allocate based on clinical risk and complexity.

43. Based on our consideration of what happened, and what should have happened, we consider there are indications of service failure in relation to the allocation of one-to-one support for Mr R.

44. The time between November 2018 and September 2019, starting from the one-to-one support clinician leaving the Trust and Mr R’s discharge, is outside of the Trust’s 18-week target to allocate. Also, the Trust realises Mr R should have been allocated to another clinician, rather than being put to the back of the waiting list.

45. We also consider there are indications of service failure in relation to the Trust’s communication with Mrs R. We can see the Trust has accepted that it did not meet its service standards on keeping the family updated and offering advice while waiting for a clinician to be allocated.

46. Mrs R tells us that not having one-to-one support between September 2018 and September 2019 was harmful to Mr R’s mental health. Mrs R considers this caused him to change his path in life from what could have been a positive experience into a harmful negative experience.

47. Mrs R explains that Mr R ended up in a supported housing, which was well outside of his hometown. Mr R also had dealings with the police. Both actions have been harmful to his mental health due to his vulnerability.

48. We have considered the indicated failings and claimed injustice. It is not possible for us to say if the outcome of Mr R’s care during this period would have been any different, as we do not know if Mr R would have fully engaged or benefited from the one-to-one sessions. This is supported by the advice we have received from our adviser, who commented that treatments with a family focus show better outcomes than individual focused work for those with a similar condition to Mr R. We consider there has been a missed opportunity for involvement in his care, and to try to improve his circumstances.

49. It is important to acknowledge that Mr R was seen by his specialist ADHD nurse and the psychiatrist during the period under consideration, and they carried out reviews of his condition, his medication, and ongoing care plan. As such, although the one-to-one support would have been an extra service providing support for Mr R, we consider it important to recognise that he still had a good level of support from the mental health team.

50. We recognise this period of waiting caused frustration and distress for Mr R and Mrs R, and they now have the uncertainty of not knowing whether this would have made a difference.

51. Our Principles for Remedy say that where poor service has led to an injustice, the organisation responsible should take steps to provide an appropriate and proportionate remedy. This can include acknowledging where things have gone wrong, accepting responsibility, and learning from the poor service.

52. In response to this aspect of the complaint, the Trust has accepted that there were delays in allocating extra support for Mr R and that its service fell below its expected standards. It has also acknowledged the poor communication, and that Mr R should not have been placed back onto the waiting list when his one-to-one support left the Trust.

53. The Trust has provided an apology to Mr R and Mrs R for the standard of care provided and explained that it would be reviewing its systems and processes to prevent this happening again. It advised it would be looking at the way it allocates cases and was considering not making separate waiting lists for families who are already within the service.

54. Based on this, we consider the Trust has provided a fair and proportionate remedy for this part of the complaint and the impact it has had. For this reason, we will not be taking any further action on this part of the complaint.

55. We appreciate that this was a difficult and distressing time for Mr R and Mrs R, which has likely been more challenging because of the uncertainty of the difference the missed opportunities could have made. We recognise that Mrs R clearly wanted the best for Mr R, and we can understand why she feels more could have been done to support him.

Discharge

56. Mrs R explains that Mr R was reviewed at the beginning of May 2019 by the consultant psychiatrist (although he was not present at this meeting) and she reported that Mr R was not happy living at home, and that she had no contact with his new social worker. She says Mr R was discharged from CYPS following a strategy meeting with his social worker in May 2019. She understands the reasoning for the discharge was because the psychiatrist wanted social services to step up and find accommodation for Mr R.

57. Mrs R is concerned that Mr R has been failed by those who are meant to care for and support him, and that he was discharged from mental health services despite assurances a care plan would be put into place to support him.

58. The Trust explains that at the meeting in May 2019, there were differences of opinion from those involved in Mr R’s care about how best to meet his needs. The psychiatrist was considering discharge from CYPS as Mr R was not compliant with his medication or attending his appointments, however, a decision was not made to discharge him at this meeting.

59. A telephone call took place in May 2019 between the psychiatrist and Mrs R in which Mrs R raised concerns about the lack of support from social services to find Mr R an appropriate placement. The psychiatrist agreed to discuss this with the safeguarding team, and was advised to write to social services to raise their concerns. The Trust says Mrs R was told that Mr R would remain open to CYPS until this was resolved. The team were informed during a meeting in August 2019 that Mr R had moved outside of the Trust’s boundary area, and so the psychiatrist made a referral to the TEWV Trust.

60. We have reviewed the Trust’s Care Coordination with Children and Young Peoples Services policy which provides guidance for when young people move outside of the Trust’s area. Where this is an unplanned move and it is at some distance, discussions should take place between teams at the earliest opportunity to enable a formal handover including the child/young person’s records.

61. If the young person is moving outside of the geographic area by CYPS, care coordinators should establish the appropriate team/service that covers the area the service user has moved to. They should contact the team/service that covers the area and arrange a formal handover.

62. We have reviewed Mr R’s medical records which show that he was not discharged in May 2019. We can see that several meetings were taking place about how best to meet Mr R’s needs, and although discharge was discussed in a meeting in May 2019, this was put on hold due to ongoing correspondence with social services.

63. The notes within the records are clear that Mr R would remain open to CYPS support until social services had found a resolution to the matters within the family home. Mr R was reviewed by the specialist nurse on 20 August 2019, and at this point it was noted that he had moved out of the area. This was formally confirmed in a professionals meeting on 27 August 2019. In the meeting, it was agreed that Mr R’s care would be transferred to TEWV Trust, and a referral/handover was sent with details of Mr R’s care and requirements going forward.

64. By taking this approach, we consider the Trust has acted in line with the policy outlined above. It has correctly transferred Mr R’s care to the closest Trust to his new home and completed a handover. For this reason, we have not identified any indications of service failure in relation to Mr R’s care being transferred to TEWV Trust.

Diagnosis

65. Mrs R is concerned that the Trust did not explore the concerns that Mr R may have FAS, despite identifying that he had symptoms of this and that he would need a further assessment to confirm the diagnosis.

66. In response to the complaint, the Trust explained that on the occasions the psychiatrist reviewed Mr R in clinic, they felt he had symptoms of FAS. It said this was not discussed with Mrs R or Mr R at the review appointments.

67. It also explained that the diagnosis of FAS is made based on a confirmed history of foetal exposure to alcohol, and at that time, the Trust, social services, and Mrs R did not have the evidence to support this. Given that Mr R’s pressing needs were social, it was felt that it was more important to press looking for suitable housing.

68. The GMC’s Good Medical Practice guidance explains that clinicians should assess patient’s conditions, taking account of their history, and should promptly provide or arrange suitable advice, investigations, or treatment where necessary. Following this, they should refer a patient to another practitioner when this serves the patient’s needs.

69. Having reviewed Mr R’s records between September 2018 and September 2019, the first mention of possible FAS is in the notes of a review on 9 May 2019. While it is noted that this was a possible diagnosis, there are no other notes which indicate what was done to explore this further. Mr R was not at this meeting, and at the time, discussions were being held with social services about how best to meet his needs and possible discharge.

70. In the meeting on 27 August 2019, it was agreed that the local authority would try to find Mr R’s previous records to look at his biological mother’s substance misuse history. The psychiatrist who had been seeing Mr R over the previous 12 months also sent a referral letter to the paediatricians at TEWV Trust to assess him for possible FAS. This letter is dated 5 September 2019.

71. A letter to social services dated 29 August 2019 explains that the clinicians thought that there was a high possibility Mr R may be suffering from underlying FAS. The consultant explained that over the years, Mr R had been displaying features of FAS. However, they did not have a detailed developmental history for Mr R, and they did not have information regarding Mr R’s biological mother’s use of alcohol or drugs.

72. We consider it was in line with the GMC’s guidance to refer Mr R on to the paediatricians at TEWV Trust when he moved out of the area. They continued to explore the diagnosis further, following the attempts of the local authority to get more information about Mr R’s biological mother. Without this information, it would not have been possible to confirm a diagnosis sooner. And as the priority in the period we are looking at was Mr R’s behaviour and social needs, it was right to focus on resolving those matters.

73. We have not identified any indications that the Trust failed to explore this diagnosis, and for this reason we will not be taking any further action on this part of the complaint. It may be helpful for Mrs R to know that our adviser told us that there is no treatment for FAS, and the neurodevelopmental difficulties cannot be reversed. As such, appropriate educational and behavioural strategies and a better understanding of the child’s presentation can help. We understand that as Mr R was diagnosed with both ASD and ADHD, he may have already been given educational behavioural strategies that were helpful. For this reason, we understand it would be difficult to decide how things could have been different if Mr R was given a diagnosis of FAS sooner.

1. We have carefully considered Mrs R’s complaint about Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (the Trust). We are sorry to hear how Mrs R and her son, Mr R, were affected. It is clear they have had a difficult and challenging time, and understandably, Mrs R is wanting to put things right.

2. After considering the information provided by Mrs R and the Trust, and taking advice from a children and adolescent mental health services (CAMHS) psychiatrist, we have identified indications of service failure in how the Trust allocated one-to-one support for Mr R. We recognise that this caused a period of frustration and distress and that there is uncertainty around whether this would have made a difference to Mr R’s care. We have considered the actions the Trust has taken to address this, and we consider it has provided a fair and proportionate remedy for this part of the complaint.

3. We have not identified indications of service failure about Mr R’s discharge, or the diagnosis of Foetal Alcohol Syndrome (FAS). We will explain our reasons for our decision in this statement.

4. Complaints give us valuable insight into the organisations we investigate, so we would like to thank Mrs R for sharing her experience with us. It is important to acknowledge that finding no indications of service failure does not take away from Mr R’s experience or how this affected him and his family.