Assessment and referrals
16. When we investigate a complaint, we first look at what the organisation or clinicians involved should have done. We do this by looking at what the relevant guidance says.
17. Section 13.2 from NMC, ‘The Code’ says, ‘make a timely referral to another practitioner when any action, care or treatment is required.’
18. NMC: ‘SPCHN’ says health visitors, ‘build trusting relationships with children, carers, and families, to positively influence their future health outcomes. They identify their health needs and strengths and deliver timely, effective, evidence-based interventions in partnership with them.’ It also says health visitors coordinate care and maintain continuity across different services and agencies.
19. The following sections from NICE [CG128] say:
‘1.2.1 Consider the possibility of autism if there are concerns about development or behaviour but be aware that there may be other explanations for individual signs and symptoms.
1.2.2 Always take parents' or carers' concerns and, if appropriate, the child's or young person's concerns, about behaviour or development seriously, even if these are not shared by others
1.2.3 When considering the possibility of autism and whether to refer a child or young person to the autism team, be critical about your professional competence and seek advice from a colleague if in doubt about the next step.
1.2.4 To help identify the features suggesting possible autism, use boxes 2 to 4 (see the appendix). Do not rule out autism if the exact features described in the boxes are not evident; they should be used for guidance, but do not include all possible manifestations of autism.
1.2.5 When considering the possibility of autism, be aware that: • autism may be missed in children or young people who are verbally able.
1.3.3 Consider referring children and young people to the autism team if you are concerned about possible autism on the basis of reported or observed features suggesting possible autism (see boxes 2 to 4 in the appendix). Take account of: • the impact of the features suggesting possible autism on the child or young person and on their family • the level of parental or carer concern and, if appropriate, the concerns of the child or young person.’
Box 2 from the above NICE [CG128] appendix lists ‘Features suggesting possible autism in preschool children’.
‘Unusual or restricted interests and/or rigid and repetitive behaviours: • Repetitive 'stereotypical' movements such as hand flapping, body rocking while standing, spinning, finger flicking.
• Repetitive or stereotyped play, for example opening and closing doors.
• Over-focused or unusual interests • Excessive insistence on following own agenda Extremes of emotional reactivity to change or new situations, insistence on things being 'the same' • Over or under reaction to sensory stimuli, for example textures, sounds, smells • Excessive reaction to taste, smell, texture or appearance of food or extreme food fads.’
20. Regarding support for families and carers which clinicians should provide, section 1.9.1 says: ‘Provide individual information on support available locally for parents, carers, and autistic children and young people, according to the family's needs. This may include: • contact details for: • local and national support organisations (who may provide, for example, an opportunity to meet other families with experience of autism, or information about specific courses for parents and carers and/or young people)’.
21. Miss Y believes the Trust did not listen to her concerns regarding K’s behaviour because it delayed in referring him to audiology and to community paediatrics.
22. The Trust said in its response, ‘The referral to audiology for K did not happen until 2 March 2023. [The health visitor] has reflected on this and acknowledged that increased pressure on [their] workload contributed to the delay in making the referral.’
23. The Trust also said a health visitor referred K community paediatrics on 3 March 2023, which included information from K’s nursery, and observations from Miss Y. It also apologised for the delay.
24. We have explored the SOGS assessment and both referrals below:
• SOGS assessment and audiology referral
25. We can see from K’s medical record on 30 September 2022 that Miss Y told a health visitor at the Trust that he, ‘will put his hands over his ears, for example with the aircon in the car’. She also said he will ask to turn this off and says, ‘I don't like it’.
26. On 3 October 2022, the Trust called Miss Y to discuss her concerns regarding her son’s behaviour. The clinician booked a health visitor appointment on 12 October 2022 ‘with view to offer further contact to complete SOGS’ assessment.
27. A SOGS assessment provides a measure of child development through the assessment of nine key areas: Passive Posture, Active Posture, Locomotor, Manipulative, Visual, Hearing and Language, Speech, and Language, Interactive Social and Self-Care Social.
28. A healthcare professional can complete this assessment if they have any concerns about any of the above issues in a child’s development.
29. We can see from this telephone call that a clinician at the Trust had identified a need for assessment (SOGS) and set a task on the Trust’s system to alert the health visitor.
30. On 12 October 2022, K’s records show a health visitor completed a home visit. During the home visit, Miss Y discussed her concerns regarding K. We can see the health visitor did not mention the SOGS assessment during the appointment or add it to the action plan they completed.
31. We can see in K’s medical record on 30 November 2022 that the Trust added an action to complete the SOGS assessment.
32. On 16 December 2022 the health visitor completed a further home visit. During the visit, Miss Y told the health visitor that K is, ‘very sensitive to sounds and will cover his ears when he hears certain sounds. [For example] an aeroplane overhead or the car air conditioner.’
33. We can see some of the actions from this home visit were for an assistant practitioner to contact the family to arrange a SOGS assessment in January 2023 and to refer K to audiology for a hearing test.
34. From our review of K’s records, we noted a clinician from the Trust completed the SOGS assessment on 23 January 2023. From the outcome of the assessment, K scored at 30 months for hearing and language skills. His age at the time was 40 months. Our health visitor adviser said this indicated K needed a referral to audiology.
35. Our health visitor adviser said there was a delay of at least three months in completing the SOGS assessment as the Trust raised this as an action point on 3 October 2022. They said if the health visitor had completed the assessment in October, it would likely have shown K needed a referral to an audiology specialist.
36. Following the outcome of the SOGS assessment on 23 January 2023, we can see the Trust referred K to audiology on 2 March 2023.
37. Our health visitor adviser said the Trust did not act within the standards set out in ‘The Code’ section 13.2 or the above section of ‘SPCHN’ as they did not complete the referral in a timely way.
38. They also said if the clinician had carried out the SOGS assessment in October 2022, they could have completed the referral at that time. Had this happened, the Trust could have referred K to audiology five months earlier than it did.
39. We know this was a very worrying time for Miss Y.
40. We have found the Trust’s five-month delay in referring K to audiology falls so far short of NMC guidelines as to be a failing in his care.
• Community paediatric referral
41. We can see from K’s medical records that the Trust referred him to community paediatrics on 3 March 2023. In its referral, the Trust included the following timeline:
• ‘January 2021 - mum expressed concern something is wrong • December 2021 - mum reported that his difficult behaviour has escalated • March 2022 – mum reported that he is exhibiting anger tantrums • April 2022 – mum reported that his behaviour has become very extreme – angry and aggressive. If his routine is disrupted or changed he will hit and scream.’
42. The referral also said that nursery staff, ‘have not observed any difficult behaviour when K is in nursery’.
43. The Trust’s referral states that Miss Y had raised concerns regarding K’s behaviour since January 2021 and by December that year her concerns had grown.
44. We can see in K’s medical records on 20 December 2021 that, ‘Mum rang in for advice as K’s behaviour had escalated’. A health visitor recorded Miss Y’s concerns that, ‘outbursts can last for up to 30 mins for stupid things.’ Miss Y gave an example as she gave him, ‘one cheese and one tuna and he wanted a jam sandwich. He threw them across the floor, kicked, screamed, slammed doors, and tried to hit his mum.’
45. The appendix of NICE [CG128] guidelines includes, ‘Features suggesting possible autism’. Our health visitor adviser noted several of the features in the above December entry in K’s records. For example, excessive insistence on following own agenda and over reaction to sensory stimuli (a response to event or object by one or more of the five senses).
46. We can see from K’s medical records on 24 March 2022, Miss Y again called the Trust for advice regarding his behaviour. On this date health visitors wrote, ‘K is reported as having excellent speech development and can speak in sentences’.
47. Section 1.2.5 of NICE [CG128] says clinicians should be aware that autism can be missed in children who are ‘verbally able’.
48. Clinicians at the Trust also wrote in K’s records, ‘He recently spent 5 hours working on building a house out of Lego type brinks and was not interested or aware of anything else going on around him’. They also said, ‘K also has a tendency to empty wardrobes/drawers and pile things in the middle of the room and get very upset if anyone moves the pile or tries to put things away.’
49. Our health visitor adviser said they noted some further possible features of autism from the NICE [CG128] appendix in the March entry in K’s record. They gave the example of over-focused or unusual interests and repetitive play, in this case emptying wardrobes or drawers.
50. We can see on both occasions in December 2021 and in March 2022 health visitors at the Trust offered advice and support to Miss Y.
51. Although we can see this happened, our health visitor adviser said based on the features of possible autism from the NICE appendix, there were indications clinicians needed to refer K to a community paediatrician from December 2021 onwards. In not referring him in a timely manner, they felt the Trust did not act within section 13.2 of ‘The Code’ or within the above sections of the NICE guidelines.
52. We can see Miss Y continued to raise concerns regarding K’s behaviour (including those the Trust included in its timeline on K’s referral to community paediatrics).
53. We acknowledge Miss Y’s frustration and long-term concerns about his behaviour and know she would have found this time very challenging.
54. The Trust referred K to specialist services on 3 March 2023. We have found this shows a delay of 12 to 15 months.
Impact
55. We have found the Trust should have completed a SOGS assessment for K in October 2022 and then referred him to audiology. We have also found the Trust should have referred K to community paediatrics between December 2021 and March 2021 and it did not do this.
56. Miss Y told us she has felt significant distress as she felt alone and not listened to. She also told us that K has struggled with symptoms of autism with no additional support.
57. To fully assess the impact of the failing, we need to look carefully at what would have occurred had the Trust taken the appropriate steps in referring K to specialists earlier.
• audiology referral
58. We have seen the Trust referred K to audiology specialists in March 2023. From the records Miss Y shared with us, we can see K had a specialist hearing assessment on 26 April 2023. This happened approximately one and a half months after his referral.
59. Had the Trust completed the SOGS assessment on 12 October 2022, which our health visitor adviser believed would likely have shown a need for referral at that time, he would have attended audiology by the end of November 2022. This would have been five months earlier than he did attend hearing specialists.
60. The summary of the hearing assessment specialists completed in April 2023 says, ‘Today’s results indicate satisfactory hearing. The results have been explained and K has been discharged from the audiology clinic.’
61. We can see K’s hearing results were satisfactory and clinicians discharged him from audiology. Therefore, we cannot establish any impact to him from the delay in referral. This is because while specialists reviewed K, they did not offer any support or further tests which may have benefitted him had the Trust referred him earlier.
62. Miss Y told us the delays made her feel the Trust was not listening to her which caused her significant distress. She also told us she felt alone and not listened to. We therefore feel that had the Trust completed the SOGS assessment in October and referred him to audiology at that time, this would likely have lessened Miss Y’s distress and she would have felt the Trust was listening to her concerns.
63. In summary, we have not found the delay had any impact on K as he did not need further support from audiology. We have found that an earlier referral would likely have lessened the impact on Miss Y.
• community paediatrics
64. We can see the Trust referred K to community paediatrics on 3 March 2023. We have found the Trust should have referred him between December 2021 and March 2022.
65. We can see when the Trust referred K in March 2023 the main aim was to request an ASD assessment.
66. We can see from the Trust’s referral to community paediatrics that Miss Y had raised concerns about K’s behaviour generally in January 2021 and by December her concerns had grown. Our psychiatry adviser said the Trust recorded detailed accounts of her concerns and its plans to address them.
67. After reviewing K’s medical record, we noted several conversations between March and November 2022 specifically relating to concerns Miss Y had raised about K’s behaviour and the possibility he may have ASD.
68. We can see during these conversations that clinicians gave advice about the concerns Miss Y raised. Our psychiatry adviser said the Trust advised on general strategies relevant to children with suspected ASD. The strategies included advice on using visual aids, social stories, preparation for change, maintaining routines, and positive behaviour strategies.
69. In K’s record we can see on 18 July 2022 a health visitor wrote, ‘Decision to signpost [Miss Y] to specific aspects of Solihull parenting course and follow up with review of parent’s engagement with Solihull and application to everyday routine.’ This shows the Trust also signposted Miss Y to resources for parenting support.
70. On 14 November 2022 the Trust also made additional signposting to further organisations such as ECFS (Early Childhood and Family Service, provided by the local county council). We can see from K’s records that Miss Y accessed this organisation.
71. We can also see on the same day the Trust signposted Miss Y to ASD specific organisations, for example, ASD Helping Hands and Autism Anglia. Clinicians also discussed educational support advice available from SENDIASS (Special Educational Needs and Disability Information, Advice Support Service).
72. Our psychiatry adviser felt the advice the Trust gave was appropriate for Miss Y’s concerns and would be appropriate to meet the needs of a child with suspected ASD. They also said the advice offered shows the Trust acted within section 1.9 of the above NICE guidelines.
73. Our psychiatry adviser also said because the Trust acted in line with NICE CG128, it is very unlikely that it would have given different support for K if the health visiting team had made an earlier referral to community paediatrics. They also said because of this, the delay in referral did not have a negative impact on K in this case.
74. Miss Y also says she has experienced significant distress as she felt alone and not listened to. We have seen that the Trust offered support for K in line with NICE guidelines and offered support to Miss Y through a parenting course.
75. Despite this, Miss Y still felt not listened to. Her complaint to us is that the Trust did not assess or refer K to the correct services as early as it could have. She has not complained to us about the support the Trust provided.
76. On 30 September 2022, we can see Miss Y telephoned the Trust as, ‘She has concerns around K’s behaviour. He is hand flapping, hitting himself. We have noticed lots of things going on with him, other people have noticed as well. We think it could be ADHD. Myself and my partner are struggling with his behaviour. It’s affecting my mental health.’
77. We can see Miss Y discussed many concerns around K’s behaviour on this date and the Trust gave advice. We acknowledge the concern she felt at the time and has continued to experience since then.
78. We can also see on the 14 November 2022, Miss Y contacted the Trust and told clinicians she, ‘is really struggling’ with K’s behaviour. We can see she, ‘was upset during the call’ and also, ‘informed she thinks K has ASD’.
79. A clinician called her back on the same day and signposted her to ECFS, ASD Helping Hands, SENDIASS and Autism Anglia for support. Miss Y said she was happy with the advice she received.
80. Although the Trust offered support and advice at this time, as we have explored earlier, it did not refer K to community paediatrics.
81. On 2 February 2023 Miss Y contacted the Trust again for advice on K’s behaviour. A clinician wrote that Miss Y felt, ‘no one is listening to her’.
82. We have found that while the Trust provided advice according to NICE guidelines, it did not refer K to community paediatrics as early as it could have. We have seen evidence in K’s medical records Miss Y felt not listened to. We therefore believe this 12- to- 15-month delay in referring him caused Miss Y significant distress.