Findings regarding Trust A
Delay referring to Mental Health services
18. Child L was seen by two different consultant paediatric gastroenterologists in 2016. In their role, these consultants would not be able to diagnose an anxiety condition or ASD. ASD affects how people experience the world and behave and is diagnosed by a child psychiatrist or other suitably qualified specialist. We therefore looked at whether these consultants should have recognised signs of possible ASD or mental health problems and referred Child L to services who could help explore this.
19. It is not possible for us to see exactly how Child L acted in these consultations, and we cannot give any view on the balance of probabilities whether her behaviour showed she needed a mental health or ASD assessment. We have to make our decision by looking at all the evidence we have so we can understand as best as possible what occurred during Child L’s appointments.
20. Mrs L shared a copy of a letter from Child L’s school in February 2015, which said Child L was being supported her with ‘excruciating abdominal pain’ and ‘high anxiety’. She told us she showed this letter to Consultant A when Child L saw him at the end of the same month. That letter is the only written record we are aware of that Child L was experiencing the kind of difficulties that she may need to see mental health services before that referral was made. Our Paediatric Gastroenterology Adviser noted that anxiety could occur alongside abdominal pain and be a factor in making it worse.
21. Mrs L told us Child L was shy and avoided eye contact. She said these were signs of possible ASD. We cannot see for ourselves how Child L presented in those appointments, but we do not think behaviour such as this would be unusual in a child when meeting a doctor, an experience which can often be intimidating for children in general. Mrs L told us Consultant A was aware Child L was suffering anxiety but there is no reference in the evidence available to us of anxiety, distress, or environmental factors being observed as a possible cause of Child L’s symptoms or discussed in those consultations.
22. Mrs L told us that this was frequently discussed, although Trust A’s evidence includes no reference to this. While we acknowledge Mrs L’s recollection of those conversations, we are not able to reach a view on the balance of probability as to what exactly was discussed and how with regard to anxiety. Consultant A made notes of how Mrs L described her daughter’s physical appearance during an episode of stomach pain in February 2015, and that ‘she seems a different child since the Pizotifen, has gained control of her abdominal pain’ when he saw her three months later. He described her as seeming ‘well’ when he examined her for a third time in September 2015.
23. The written evidence from 2015 and 2016 does not show us that Consultant A should have identified possible anxiety or ASD as the cause of Child L’s symptoms. Child L’s presenting complaint was severe abdominal pain, and the evidence does not show a correlation with her school attendance. Her abdominal pain seemed to continue through the school holidays. Trust A’s records show it questioned whether there may be something in Child L’s environment causing her to feel unwell and there is no record a relationship between school or any other activity was identified. We also note that if Child L was presenting in a way that showed she did need a referral to mental health services, Child L’s school or GP may have facilitated this separate from any investigations for stomach pain. They would usually be best placed to do so because of the more detailed insight they had into Child L’s development.
24. Trust A’s records reflect that Child L was experiencing strong pain in her upper abdomen. She felt nauseous in the morning and before bed most days, would also experience headaches, and often would not eat all day. The focus of the assessment with Consultant A in January 2016 was on finding the best medication to treat suspected abdominal migraine but he also considered the possibility she may have a food allergy based on his observations since February 2015. Consultant A gave a prescription of sodium cromoglycate because this can help allergy sufferers. His understanding was this did benefit Child L, and for that reason he recommended a detailed dietary investigation.
25. Child L did not see Consultant A again. She went on to see Consultant B and we note that, based on her assessment of Child L on 21 May 2016 and on the outcome of Consultant A’s investigations, Consultant B referred Child L to mental health services. We understand Mrs L’s view is that referral should have been made sooner, but we also note that the sequence of testing and investigations already undertaken allowed Consultant B to see that the diagnoses of abdominal migraine and food allergy, which she would consider first of all, had already been explored and were therefore not likely to apply.
26. The primary care mental health assessment that led to Child L being referred to Trust B shows that Child L struggled with a number of aspects of her school life, but this was only established when a mental health worker had a number of meetings with her and also observed her in school. This assessment noted that she began to experience significant anxiety after she moved school in September 2016 and also said historically her difficulties had been masked because ‘she has always been compliant, well behaved and as a result appeared to manage.’ The later assessments at Trust B said that Child L was suffering anxiety ‘associated with social situations but it is also related to change, rules and understanding what is expected of her’ and confirm that this became more significant after she changed school, and after she stopped seeing Consultant A.
27. This shows the way Child L’s autism was making her anxious was relatively complex. We do not think the evidence shows Consultant A needed to consider referral to mental health services during the time he was treating her stomach pain. Our Paediatric Gastroenterology Adviser explained proceeding to investigate possible allergy was appropriate considering the family history and the evidence such as clinical research in the Postgraduate Medical Journal showing allergy is a frequent cause of symptoms such as Child L had. We have not seen evidence that meant investigation for anxiety was indicated at this point. Consultant A’s assessment of Child L and his focus on possible medical explanations was appropriate, consistent with the available evidence and in line with his responsibility to assess, treat and refer, which is set out in part 15 of the General Medical Council’s ‘Good Medical Practice’ guidance.
28. Mrs L was concerned that her daughter was prescribed pizotifen, propranolol, sodium cromoglycate, cyclizine, amitriptyline and omeprazole throughout the period when she was in the care of Consultant A and Consultant B. She views these prescriptions as unnecessary. Trust A’s records reflect that some of these medications were considered to be helping Child L and others were not. Where medications were not successful they were discontinued. Having considered our independent clinical advice, we are satisfied that the evidence shows Child L demonstrated a clinical benefit from these medications and that it was in line with the above GMC guidance on decision making.
29. Whilst we appreciate that an earlier referral to mental health services may have limited the involvement of the paediatric gastroenterologists, a referral to the paediatric gastroenterology team would usually involve assessment and treatments including with medication. Trialling these medications was an essential step in determining whether there was a medical cause to her illness. We have not seen any suggestion that the prescription of medications such as these was inappropriate. We also note that Child L continued to take pizotifen, omeprazole and amitriptyline after being diagnosed with anxiety, and after her treatment by Trust A ended, which suggests they continued to be of benefit to her.
30. We cannot speculate what medication decisions might have been made if Child L had been referred to mental health services and diagnosed earlier. Trust A reached a clinical view that her condition was gastric in nature, based on the evidence available and in line with the GMC guidance previously mentioned.
31. Mrs L said there were also problems with the patient handover when Consultant A retired because he had not referred Child L on to one of his colleagues. Child L waited four months for a consultation after Consultant A retired. Consultant A did arrange for her to be followed up with a dietician in his department and, once Child L saw that dietitian on 18 April, an appointment with Consultant B was arranged for 21 May 2016. This was a failure to provide the continuity of care required by part 44 the GMC’s Good Medical Practice, which requires that doctors must see that ‘a named clinician or team has taken over responsibility when your role in providing a patient’s care has ended’.
32. We appreciate that in the context of Child L’s difficulties at that time, Mrs L would have been concerned at not having regular consultant input, and uncertain about the next steps. Trust A accepted this had been a problem and apologised for both the delay and the distress it caused Mrs L and Child L when it responded to the complaint. We consider this to be an appropriate response to remedy the injustice of distress caused to Mrs L, in line with the requirements for ‘Putting things right’ in Our Principles for Remedy. We have not seen this delay caused any other impact, including any clinical impact to Child L.
33. Consultant B referred Child L to CYPS on 1 June 2016. That referral explained that she had chronic abdominal pain and asked that she be assessed ‘for any other anxiety issues’ and for help with coping strategies. Consultant B did not mention ASD in the referral, and there is no mention that she suspected ASD in the evidence we have seen. She documented how Child L answered some of her questions but did not document any observations about her behaviour being a cause for concern in itself. We cannot see that there is anything to suggest that Consultant B should have reached a different view in this consultation based on the evidence available to her, or that she should have highlighted that Child L may benefit from an ASD assessment.
Findings regarding Trust B
Trust B’s handling of the June 2016 referral
34. Mrs L said the referral Trust A sent on 1 June 2016 should not have been declined by Trust B. Trust B decided the referral was more suitable for Primary Care Mental Health rather than its own CYPS.
35. Trust B operates as a single point of access for child mental health services in the area. This means referrals for children needing all levels of support all go to the same place, where they are triaged to the most suitable service. Primary care services would usually support children with less complex needs, while CYPS would work with young people needing more long-term treatment or those who have more complex needs. We understand it was the correct procedure at that time for a patient with needs Child L was reported to have to be assessed by primary care services first and have the interventions they could offer. This approach was in line with NHS England’s ‘Future in Mind’ guidance. There was no suggestion Child L needed an ASD assessment at this point.
36. When Trust B responded to the complaint, it said the letter declining that referral should have given more information about the reasoning behind that decision and contact details for the service. We do not consider the letter was so poor as to be a failing in service, as it communicated the decision and provided some information around it. It met the relevant requirements from our Principles of Good Administration by including clear explanations and the level of detail we consider was appropriate in the circumstance. By including contact details for the team that made the decision, it also provided an accessible service.
37. However, we are glad to see the Trust has taken the complaint seriously and identified how it can learn from Mrs L’s concerns in future. The decision that Child L needed to see primary care services was appropriate and in line with applicable guidance. The evidence from that time does not show she needed the kind of services CYPS offered at that stage.
Time it took Trust B to provide treatment
38. Mrs L complains Trust B did not provide treatment as quickly as it should have. When Child L was diagnosed with ASD in December 2017, there was no initial plan for further treatment at CYPS. The plan at that time was for her school to look at how it could support her, and the school arranged a meeting to discuss her educational needs.
39. Trust B invited Mrs L and her husband to an ASD parenting group on 22 February 2018 but did not see Child L again during this time. Although Mrs L felt medication for anxiety would not be appropriate in December, she contacted Trust B on 29 March 2018 asking what medication would help, and a prescription for the antidepressant fluoxetine was issued the same day.
40. When Mrs L emailed Trust B on 29 March she said she had been trying to contact Child L’s CYPS psychiatrist over the previous four weeks without reply. She said she assumed her messages had not been passed on. It is difficult to know what did happen during this period. Trust B said Mrs L’s complaint ‘suggests that some calls may not have been formally entered’ onto its records system but had no evidence to confirm this. We can see Trust B’s view was ‘communications and connections between the CYPS management team and our consultant cohort were less than ideal’ but this seems to be a reference to prescriptions being issued over the telephone, which Mrs L felt had been helpful in expediting her daughter’s care.
41. On the balance of probabilities, it seems likely Mrs L’s messages were not handled appropriately. She left messages which did need the attention of the CYPS team and were not responded to until she made further calls. Trust B has accepted there were occasions where there were issues with communication. Our Principles of Good Administration say organisations should provide accessible services and respond within reasonable timescales, and the Trust failed to meet that standard in the handling of some of Mrs L’s calls. Trust B apologised if any calls had not been returned and said CYPS has new administrative processes in place which should mean call backs requests will be handled better in future. This is an appropriate remedy for the frustration Mrs L experienced at that time, in line with the requirements for putting things right in Our Principles for Remedy.
42. Mrs L complained the difficulty she had contacting Child L’s psychiatrist led to a delay in prescribing anxiety medication. Child L’s psychiatrist seems to have recognised there had been a delay in messages being passed on because he sent a prescription immediately on 29 March rather than waiting till he could see her. Trust B said it would usually expect its doctors to see the patient when issuing a prescription, and the evidence suggests the psychiatrist attempted to be helpful by acting immediately in this situation. As the next appointment Trust B could arrange for Child L was on 26 April, we think this avoided any significant delay in Child L’s prescribing. There was a delay in Child L being seen but no significant delay in her getting medication.
43. Mrs L also complained about delays in arranging CBT for Child L. The option of CBT was first discussed by Trust B in a consultation on 26 April 2018, and Mrs L agreed to the referral on that date. This referral was reviewed by a CBT therapist on 16 May 2018, who suggested PBS would be more appropriate. Although Mrs L complained the psychiatrist had not been able to give an update on the referral when she saw him on 14 June, the clinic letter from that referral suggests the psychiatrist had discussed the plan for PBS instead of CBT with Mrs L. He asked whether the team could confirm Child L would be offered PBS the same day, which is timely.
44. The offer of PBS was not confirmed until 14 August. A CYPS occupational therapist contacted Mrs L to discuss that plan the same day and began her work with Child L two weeks later. This is 18 weeks after Child L was referred to CBT.
45. Trust B repeated its statement that ‘internal communications between specialist groups in CYPS have been fragmented and below standard’ when it responded to this part of the complaint. It said the communications with Mrs L had been ‘below an acceptable standard’. Mrs L said she was ‘left with the impression someone had overturned the Psychiatrist’s instruction’ so Trust B clarified that decisions about whether CBT was appropriate needed to be made by CYPS team members and therapy practitioners themselves.
46. We note Trust B’s view was that communication with Mrs L was ‘below the required standard.’ However, it has not accepted that Child L waited longer than she should have for that treatment. While we understand it is frustrating and worrying for there to be any periods where a child has to wait for valuable support, we cannot see there were failings here. There are no nationally agreed standards for how long young people should wait for psychological therapies, nor has Trust B set its own target.
47. Where there are no nationally agreed targets, a healthcare provider should take account of their responsibilities under the NHS Constitution and the accompanying Handbook. The Constitution tells us that ‘All patients should receive high-quality care without any unnecessary delay. Patients can expect to be treated at the right time and according to their clinical priority.’ We have therefore considered whether there is evidence of an unnecessary, avoidable delay.
48. We have not seen anything in the clinical records to suggest there were periods of avoidable delay or that Trust B failed to move Child L’s case forward when it could do so. Trust B said the communication around Child L’s treatment could have been better, and the clinical records suggest Child L began PBS two weeks after the relevant team member contacted her to say she had capacity. Child L was receiving regular support from other members of the team in the meantime. It is unfortunate Trust B did not have the resources to begin Child L’s psychological therapies as soon as it was suggested, but we cannot see there was a failing in the amount of time Child L had to wait in the circumstances.
Conclusion
49. While we found both organisations made mistakes in some areas, we also consider they took the right actions to put things right in line with Our Principles for Remedy. We are glad to see they have done so and hope this provides some reassurance to Child L’s family that the Trusts have learned from their concerns. This concludes our report into this complaint.