Hampshire and Isle of Wight Integrated Care Board

3. Mrs A complains the ICB failed to deliver the recommendations it agreed to meet in January 2020 following a special education needs and disability (SEND) tribunal in September 2019 for her son, B. Specifically, it did not: • arrange for him to have psychiatric intervention and art therapy to help monitor his symptoms of psychosis • ensure he had therapeutic interventions to manage his anxiety and phobias • ensure he was allocated a care co-ordinator.

4. Mrs A complains the ICB had an absolute duty under the Children's and Families Act, Section 42 to provide the agreed recommendations.

5. Mrs A also complains the ICB has failed to address both of her sons’ (B and C) outstanding mental health needs in a timely manner, as agreed in a health care offer it made in September 2021. Specifically, she complains it took until February 2022 for the ICB to agree funding for psychiatric input, and despite doing this, it then delayed paying for the psychiatric appointments both boys attended.

6. Mrs A says her sons have had to wait for the care they need for over three years. She has described the impact of this as being horrific as her sons have struggled without this support. She has said this has impacted them being able to access education and to live fulfilling lives and her younger son C has been traumatised.

7. Mrs A has said these events have impacted the whole family. Her husband has had to give up his career for a year and she had to reduce her hours working to make sure they can meet their sons’ needs. They have both had to seek mental health support due to their frustration in trying to seek the support their sons need. Mrs A has said that due to the lack of support, her family has lost its support system and they no longer enjoy the activities they used to.

8. As an outcome for her complaint, Mrs A seeks recognition of the failings, an apology and compensation.

9. Clinical commissioning groups were set up in 2012, these NHS bodies were responsible for the planning and commissioning of healthcare in their local areas. In July 2022, these groups were dissolved and were taken over by integrated care systems. Within the new structure, integrated care boards (ICBs) were now responsible for planning health services for their local population. For consistency’s sake, we have referred to what was the CCG until 2022 as the ICB throughout this statement.

10. B had a medical history of neuropsychiatric presentation (a mental disorder caused by an issue with the brain), autism spectrum disorder (ASD), motor and vocal tics, anxiety, attention deficit hyperactivity disorder and presumed paediatric autoimmune neuropsychiatric syndrome (PANS) which occurs when the body’s immune response triggers neuropsychic symptoms.

11. C had diagnoses of ASD and dyslexia. Doctors went on to also diagnose him with developmental disorders, hyperkinetic disorders (abnormal, involuntary movements) and moderate depression.

12. A SEND tribunal took place for B and in September 2019, the recommendations were shared with the relevant bodies, including the ICB. A SEND tribunal handles appeals against local authority decisions about the special educational needs of children and young people and provisions including education, health and care plans.

13. On 27 January 2020, the ICB wrote to Mrs A to tell her it agreed to the tribunal's recommendations for B's care, this included psychiatric and therapeutic support from the Child and Adolescent Mental Health Services (CAMHS).

14. B had been referred to CAMHS prior to January 2020, and was already on a waiting list for psychiatric review and art therapy.

15. A CAMHS psychiatrist spoke to Mrs A at the end of March 2020 to discuss possible medication to help with B’s anxiety. Mrs A decided it was not the right time to start this due to the outbreak of COVID-19 and its impact on the support they could receive. B remained on the waiting list for psychiatric review.

16. In April 2020, Mrs A spoke to a CAMHS art therapist who explained they were not able to offer face-to-face appointments at that time. They agreed this was not a good time to try starting therapy.

17. In October 2020, the ICB referred B to the CAMHS trauma, anxiety and depression clinic. The clinic assessed B the following month and recommended the ICB refer him for further assessment at a clinic specialising in neurodevelopment disorders.

18. The ICB referred B to the Service for Complex Autism and Associated Neurodevelopmental Disorders (SCAAND) for psychological assessment.

19. In February 2021, Mrs A spoke to CAMHS to say B may now be able to engage in on-line art therapy. The art therapist agreed to assess B, with a first appointment in April. After this appointment, B did not want to attend anymore. Following discussion with his parents, the therapist decided B would not benefit from art therapy at that time.

20. In June 2021, the ICB held a multidisciplinary meeting to discuss the care for both Mrs A’s sons. The MDT concluded both children had unmet mental health needs and a private paediatrician (funded by the ICB) believed both children would benefit from psychiatric input.

21. The ICB had offered psychiatric intervention for B at another provider, but Mrs A had declined this as not being suitable. CAMHS told the ICB they did not have the relevant expertise to offer psychiatric input relating to immune mediated conditions.

22. The ICB agreed to fund the psychiatric treatment privately and approved independent funding requests (IFRs) for both children to have access to a privately funded psychiatrist in 2022.

Psychiatric intervention and art therapy

26. Following the outcome of the SEND tribunal, the ICB wrote to Mrs A on 27 January 2020 to say it would ‘follow the recommendations fully’.

27. The first agreed action was to ‘ensure’ CAMHS ‘provides (…) regular consultation and/or contact with B to monitor symptoms of psychosis through psychiatric intervention and art therapy’.

28. In its complaint response, the ICB said the actions it agreed to are ‘subject to clinical assessment of need and threshold as well as waiting times’. It said health providers are appropriately placed to make clinical decisions about the risk and priority for each person on a waiting list, and a tribunal outcome does not mean a child can supersede the CAMHS triage process.

29. Mrs A complains a waiting list is not a provision and the ICB did not meet its responsibilities.

30. Our Principles say, ‘in their decision making, public bodies should have regard to the relevant legislation’. They should also, ‘do what they say they are going to do. If they make a commitment to do something, they should keep to it, or explain why they cannot’.

31. As set out in the background section above, we can see B was already on the CAMHS psychiatry waiting list in January 2020. A psychiatrist later spoke to Mrs A to discuss possible medication, the following year the ICB agreed B’s health needs would be best met by a private psychiatry service which the ICB went on to commission.

32. In terms of arranging art therapy, we can see this was initially postponed due to the impact of the COVID-19 pandemic. When Mrs A then suggested the service try online sessions, CAMHS agreed to three assessment appointments to see if this would be suitable for B with the first taking place in April 2021.

33. The Childrens and Families Act 2014 says if a child’s education, health and care plan ‘specifies health care provision, the responsible commissioning body must arrange the specified health care provision for the child or young person’. The actions the ICB agreed to were recommendations made in B’s education, health and care plan.

34. The SEND code of practice further sets out the responsibilities of a health commissioner: ‘as health service commissioners, CCGs [ICBs] have a duty under Section 3 of the NHS Act 2006 to arrange health care provision for the people for whom they are responsible to meet their reasonable health needs’.

35. Our adviser has commented the guidance does not specify what a ‘health care provision’ is, it also does not define what a ‘reasonable health need is’. This means the guidance allows scope for ICBs to make their own decisions about what is appropriate to provide, within their local budget.

36. The SEND code of practice also says the bodies involved in providing the services for children and young people with SEND, ‘should assess the extent to which activities contribute to their local priorities and outcomes and decide which services should be commissioned or decommissioned…’.

37. It also says the health commissioning body should consider how best to commission services ‘for children and young people who have SEN with the CCG’s [ICB’s] broad responsibility for commissioning health services for other groups, including preventative services’.

38. Our adviser has said this further supports ICBs have flexibility in the decisions they make for what services to commission to meet identified health needs. As part of this decision, it must consider a wider system of health care and fund services from a limited budget. Our adviser has commented it is appropriate that all patients should follow a similar pathway, and there is no automatic by-pass of the referral pathways for any particular set of patients.

39. From the records and information we have reviewed, we can see the ICB communicated with CAMHS and Mrs A throughout the period in question. We can see B had a long wait for a psychiatry review and we can also see the art therapy provision was delayed. We have not seen the ICB as being the cause for these delays. Both provisions took place in 2021 and 2022. We recognise this was a very difficult time for B and his family.

40. Our adviser has commented the ICB acted appropriately by first seeing what standard NHS services could offer, and then consider if this was an exceptional case that would justify commissioning care outside of the NHS. They have explained mental health services for children and young people are under immense strain which can mean waits for treatment are much longer than the services would wish for.

41. In terms of the ICB’s role in ensuring B received this care, in consideration of the advice we have received and on review of the Childrens and Families Act 2014 and the SEND code of practice, we do not consider it acted outside of its responsibilities. It did arrange the care it agreed to.

42. As noted above, an ICB has to carefully consider both the health needs of the SEND patient, but also its wider responsibilities as a commissioning body. We have not seen reason why B should have had a quicker provision of care, or by-passed CAMHS waiting lists to be assessed.

43. We consider the ICB acted in-line with the SEND code of practice, the Childrens and Families Act 2014, and with our Principles. For this reason, we have not seen that anything went wrong here.

Therapeutic interventions

44. The second action the ICB agreed to following the outcome of the SEND tribunal was to ‘ensure therapeutic intervention is made available to manage anxiety and phobia relating to past traumatic experiences to support B to feel he can access education safely’.

45. As set out above in the background section, the ICB referred B for assessment at a specialist CAMHS trauma, anxiety and depression clinic in October 2020. We understand the initial delay was likely due again to the impact of COVID-19 on CAMHS services, and how this could impact B being able to engage in an assessment.

46. Following the outcome of the recommendations from the clinic, the ICB then referred B for further specialist assessment to see how his needs could be met. We note the clinic advised they did not consider the anxiety symptoms described by B could be targeted, ‘through even specialist psychological treatment’. It said he first needed specialist treatment that may involve behavioural programmes and medication.

47. B’s case is clearly complex and has involved several specialist services. Our adviser has commented the ICB worked with the relevant services to provide the agreed care for B. We consider the ICB’s action to first refer B for assessment by the CAMHS service to see how best to manage his symptoms, including anxiety, was in-line with the action it agreed to.

48. We also consider this was in-line with the SEND code of practice because the information from the assessment allowed the ICB to then consider how best to meet B’s reasonable health needs, and it went on to arrange this.

49. In summary, we consider the evidence supports the ICB carried out the agreed action and acted in-line with the SEND code of practice, the Childrens and Families Act 2014 and our Principles.

Allocation of a care co-ordinator

50. The third action the ICB agreed following the outcome of the SEND tribunal was to ‘ensure a medical care coordinator is allocated to B as a matter of priority’.

51. The CAMHS records from January 2020 say B’s paediatrician would co-ordinate the external network of clinicians involved in B’s care, and CAMHS would have a case holder who would co-ordinate the work within CAMHS and communicate with B’s family.

52. A CAMHS psychologist took on the co-ordination role in 2020. In May 2021, an ICB officer then took over the role as being a co-ordinator for the wider network. In September 2021, the ICB informed Mrs A the ICB officer would still be available to offer advice and information, but any new referrals for care would need to be managed by the relevant clinician. This was to ‘ensure fairness for all children and young people’.

53. Following careful review of the records, we consider the ICB liaised with CAMHS and a care co-ordinator was put in place for B. We can see that as B’s case developed, the arrangements changed, but we consider the ICB provided support to the family throughout. We are sorry Mrs A felt this support was not in place, and understand this was an on-going issue for her following the time period we have looked at in this case.

54. We consider the evidence supports the ICB considered B’s needs, and also its wider responsibilities as a commissioning body in its actions. We therefore consider it acted in-line with the SEND code of practice, the Childrens and Families Act 2014 and with our Principles.

Care and treatment for B and C

Funding for psychiatric input and payment of private costs

55. Mrs A complains that at the MDT meeting in June 2021, the ICB agreed to arrange and fund suitable psychiatric care for both her sons, but this took too long. Once the funding had been agreed, she says the ICB then delayed paying for the appointments. We understand Mrs A suffered frustration and stress as a result.

56. The finalised actions from the meeting set out several agreed interventions for C, including funding paediatric care and specialist occupational therapy. The ICB notes a paediatrician had referred to C as needing psychiatric intervention. The ICB stated the paediatrician would need to refer C to CAMHS or ask his GP to do this.

57. For B, it is noted a paediatrician had formally recommended urgent psychiatric intervention. Mrs A had requested B be seen by a specific psychiatrist who had expertise in immune mediated conditions. The ICB noted that the paediatrician had however said standard psychiatric intervention would be suitable. The ICB also added B back to the CAMHS waiting list for psychiatric review to make sure he had access that was local and face to face.

58. In November 2021, a CAMHS psychiatrist spoke with Mrs A to offer a review appointment. Due to Mrs A’s dissatisfaction with CAMHS, she declined this and said they wanted support for funding to see the private psychiatrist. We can see by this time Mrs A did not consent for the CAMHS clinicians to contact other health professionals involved in B’s care.

59. On 26 November 2021, the ICB received a specialist neuropsychiatric funding referral for B. On 21 December, the ICB received a specialist funding referral for C. The ICB rejected the requests and asked for more information around the goals, intended treatment and anticipated outcomes.

60. Mrs A contacted the ICB in February 2022 after being updated by her GP on the referral outcomes and provided further information. The ICB considered this and went on to agree to approve the funding that month. The ICB advised Mrs A should wait to receive confirmation of the approval, as this would be the date from when the funding would start.

61. After three weeks, the confirmed approval had still not come through. Mrs A said she had booked an emergency appointment for C and asked if this would be covered. The ICB agreed to this.

62. On 2 March, the ICB advised it has sent the ‘necessary invoicing details’ to Mrs A’s GP so they could set up future appointments with the psychiatrist.

63. In terms of delay in paying invoices, we can see the psychiatrist emailed two invoices to the relevant NHS service on 7 June 2022. On 12 June, they followed-up to say the invoices remained outstanding. Mrs A forwarded the email to the ICB, the ICB responded the following day to say they had instructed the relevant team to clear them ‘as soon as possible’.

64. Our adviser has commented that following the MDT, there were reasons for the delays such as Mrs A declining a CAMHS psychiatry review. The records also suggest a re-emergence of COVID-19 affected both the family and service.

65. We can also see there was some delay during which the funding requests were submitted, considered and then rejected due to the lack of information to support the requests. We do not consider this was due to the ICB doing anything wrong. In terms of the time taken for her sons to get funding approval and private psychiatry appointments, our adviser has not seen any unreasonable delay.

66. We can understand Mrs A’s frustration when she considered the ICB had agreed to action this support for her sons, and she wanted this in place as soon as possible. Following careful consideration of the ICB’s actions, we have not seen that it caused unnecessary delay and it did what it said it would.

67. In terms of paying the invoices for the psychiatric appointments, once the ICB was informed invoices were outstanding by one week, it acted to get its team to pay them promptly. Mrs A has told us she is still having problems with getting invoices paid on time which we are sorry to hear. For the time period we have looked at however, we have not seen any unreasonable delay by the ICB in arranging for the payments to be made.

68. We consider the ICB has acted in-line with our Principles and we will not take these concerns any further.

1. We have carefully considered Mrs A’s complaint about the Hampshire and Isle of Wight Integrated Care Board (the ICB). We are very sorry to hear of her concerns and how she says the actions of the ICB have impacted her sons and her family. It is clear she wants the best care for her sons to meet their needs.

2. Through our work, we have seen no indication that anything went seriously wrong in the ICB’s actions. This means we will not be taking the complaint any further. We do not question the seriousness of Mrs A’s complaint and we thank her for bringing it to us. We are sorry for the disappointment our decision may cause. We explain our decision in detail below.