Summary: The Ombudsmen do not consider Northern Lincolnshire & Goole NHS Foundation Trust’s (the Trust) decision to remove M from the watchful wait list in January 2017 was fault. However, the Trust should have told Miss L it removed M from the watchful wait list in July 2016, before it later reinstated him. The Ombudsmen do not consider the Trust unnecessary delayed sending M for an autism assessment. Also, Lincolnshire Partnership NHS Foundation Trust’s autism assessment of M was in line with the relevant guidelines.

The complaint

1. Miss L complains about the actions of North East Lincolnshire Council (the Council), North East Lincolnshire Clinical Commissioning Group (the CCG), North Lincolnshire and Goole NHS Foundation Trust (the Trust) and Lincolnshire Partnership NHS Foundation Trust (the Partnership Trust). Miss L says:
• The Trust’s child development centre (CDC) wrongly removed her son, M, from its watchful wait list for a multi-agency assessment in January 2017.
• There are flaws in the local autism screening/diagnosis pathway which led to a delay in her son, M receiving an autism assessment.
• CAMHS (part of the Partnership Trust) wrongly diagnosed M as not having autism
2. As a result, Miss L says:
• The delay lead to a lack of support for her son which caused him to fall behind at school;
• Her son suffered distress at having to change schools; and
• Her family have suffered time, trouble frustration and distress at waiting so long for an assessment. The stress has worsened her brain condition, which led to delays in surgery.
3. Miss L would like changes to the local autism process to ensure delays do not happen to other families.

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The Ombudsmen’s role and powers

4. The Ombudsmen have the power to jointly consider complaints about health and social care. Since April 2015, these complaints have been considered by a single team acting for both Ombudsmen. (Local Government Act 1974, section 33ZA,as amended, and Health Service Commissioners Act 1993, section 18ZA)
5. The Ombudsmen investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, the Ombudsmen consider whether it has caused injustice or hardship. (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1), as amended)
6. If it has, they may suggest a remedy. Our recommendations might include asking the organisation to apologise or to pay a financial remedy, for example, for inconvenience or worry caused. We might also recommend the organisation takes action to stop the same mistakes happening again.
7. The Ombudsmen cannot decide what level of care is appropriate and adequate for any individual. This is a matter of professional judgement and a decision that the relevant responsible body has to make. Therefore, my investigation has focused on the way that the body made its decision.
8. If the Ombudsmen are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, they can complete their investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)

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How I considered this complaint

9. I have considered the complaint information Miss L has provided to me. I have asked the Council, CCG, Trust and Partnership Trust to comment on the complaint, and provide supporting documentation. I have taken the relevant law and guidance into account.
10. I wrote to Miss L, the Council, the CCG, the Trust and the Partnership with a draft decision and considered their comments.

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What I found

11. In 2011, the National Institute for Health and Care Excellence (NICE) issued guidance on autism in young people, ‘Autism in under 19s: recognition, referral and diagnosis’. This guidance recommends setting up a local pathway for recognition, referral and diagnosis. In particular, the guidance suggest a local multi-agency strategy group is set up. This group should include a:
• Paediatrician and/or child and adolescent psychiatrist
• Speech and language therapist
• Clinical and/or education psychologist
12. After the autism team receives a referral, at least one member of the team should consider whether to carry out an autism diagnostic assessment and/or an alternative assessment. When deciding whether to carry out an assessment take account of the following:
• The severity and duration of the signs/symptoms
• The extent to which the signs/symptoms are present across different settings (for example, home and school)
• The impact of signs/symptoms on the child or young person and on the family or carer
• The level of parental or carer concern, and if appropriate the concerns of the child or young person
• Factors associated with an increased prevalence of autism
• The likelihood of an alternative diagnosis
13. They should start the autism diagnostic assessment within three months of the referral to the autism team.
14. Each autism diagnostic assessment should include:
• Detailed questions about parent’s concerns
• Details of the child’s experience of home life, education and social care
• A developmental history, using an autism specific tool to gather this information
• Assessment of social and communication skills and behaviours
• A medical history
• A physical examination
• A consideration of the differential diagnosis
• Assessment for conditions that may coexist with autism
• Development of a profile of the child’s strengths, skills, impairments and needs to create a management plan
• Communication of findings to the family
15. Consider referring the child to appropriate services based on their profile.

Delegation of duties

16. Section 75 of the NHS Act 2006 allows NHS organisations and councils to arrange to delegate their roles to one another. NHS organisations can take on providing social work services which are normally the responsibility of councils. Subsection 5 of section 75 says the NHS and councils remain liable for the exercise of their own roles.
17. In North-East Lincolnshire, the CCG delegates responsibility for children’s health service commissioning to the Council. In turn, the Council delegates commissioning for adult social care to the CCG. This is done with the aim to provide an integrated service.

The diagnosis of Autistic Spectrum Conditions (ASC) in North-East Lincolnshire

18. Children under five years old in North-East Lincolnshire with a social communication disorder would have a multi‑agency assessment at the Trust’s Child Development Centre (CDC). The assessment is designed to help understand the child’s development.
19. The CDC criteria for an assessment include:
• Over a 12-month developmental delay in more than one area; and
• Evidence of consistent attempts to support the child’s progress with limited success.
20. The watchful wait list allows the CDC to review a referral later, rather than reject it up front. Waiting times for an assessment can vary.
21. The single assessment is the main tool the CDC consider when completing the multi-agency assessment.
22. The CDC send the multi-agency assessment back to the referrer (usually a paediatrician), who then decides whether to refer the person on for any further assessments, including autism if necessary.
23. For children over five, the CCG are accountable, and the Council responsible, for developing the ASC pathway in North-East Lincolnshire. Before July 2016 there was a gap in commissioning ASC services. No organisation was formally responsible for providing that service. However, the Trust and CAMHS still accepted referrals and provided an ASC service during that period.
24. After July 2016, the Council specifically commissioned CAMHS (and funded by the CCG) to provide ASC assessments, diagnoses, and support. The CCG set up an interim pathway to access ASC diagnosis for children. The process was as follows:
• Referral from a GP.
• Early screening by a paediatrician at the Trust. If there was no evidence of ASC, a team of professionals would identify ways to meet the child’s needs. If there was evidence of ASC, the paediatrician would refer the child to the ASC clinic.
• Joint assessment in the ASC clinic at the Trust by a paediatrician and a CAMHS psychologist. They would either diagnose or not diagnose ASC. If there was a diagnosis or not at the clinic, they would identify ways to meet the child’s needs.
25. The CCG later introduced a ‘single assessment’ which removed the route in to the pathway by the GP. Rather, a professional needed to submit information to the Council to consider.
26. In April 2018, the Council and the CCG jointly launched the new Access Pathway to diagnose ASC in North-East Lincolnshire. The key elements of the pathway were:
• There was one route in to the pathway – the Families First Access Point. At this stage, information will be obtained from various sources to decide what referral to make next.
• The Access Panel would decide if the child met the criteria for a referral to the joint paediatric clinic
• Awaiting the result of the assessment, a package of care would be completed for the child and a lead professional in the Paediatric department would continue to provide support to the child and family.

Key facts

27. M was two years old in June 2015 when his GP referred him to the Trust. Miss L had concerns M was autistic.
28. In September 2015, a paediatrician at the Trust reviewed M. The paediatrician said M did not have features suggesting autism. However, they referred M to the child development centre (CDC) for a multi-agency assessment.
29. In December 2015, the CDC said M needed a single assessment and the Council would follow this up. The CDC added M to the watchful wait list until the single assessment was completed.
30. In July 2016, the early help practitioner told the CDC meeting Miss L had withdrawn her consent to the single assessment. This was not correct. However, the CDC removed M from the watchful wait list.
31. In September 2016, Miss L told a speciality registrar at the Trust she was still completing the single assessment with the Council. Therefore, the CDC reinstated M on the watchful wait list.
32. In December 2016, the CDC wrote to M’s parents and said:
• It could not complete a multi-agency assessment because there was not enough information about M’s progress at school.
• There had been no request for support from the Specialist Advisory Service.
• M’s development was mildly delayed, and he may not warrant an assessment.
• Parents had not engaged with the services offered from the Council’s Family Hub, through the Early Help process.
• It would keep M on the watchful wait list, and review M again if necessary if more information is provided.
33. M’s parents were still worried about M’s development and not sure how useful the involvement of the Family Hub was. The CDC agreed to review new information provided by the family.
34. After reviewing the school nursery information, in January 2017, the CDC decided M was making acceptable progress. Therefore, it removed M from the watchful wait list and did not complete an assessment. The CDC noted Miss L had withdrawn consent for the Family Hub, and had not engaged with that service. Therefore, the Council closed the single assessment.
35. In February 2017, M’s parents told the CDC they were angry M had not been offered an assessment. They disagreed they had withdrawn consent for the single assessment. The Council reopened the single assessment in March.
36. In April 2017, a speciality doctor reviewed M. The doctor wanted to see how M progressed at school from September.
37. After chasing an autism assessment with the CCG, in December 2017, a paediatrician reviewed M. She said she would refer M to the Trust’s autism screening clinic as he was now over five years old.
38. In March 2018, a different consultant paediatrician reviewed M in the autism screening clinic, with a clinical psychologist. They found:
• The questionnaires completed by the parents indicated autism would be a very likely diagnosis. Also, the school’s score indicated it was a possible diagnosis.
• M had features suggesting autism, so he was referred to Child and Adolescent Mental Health Services (CAMHS) at the Partnership Trust for a full autism assessment.
39. In June 2018, CAMHS completed the autism assessment, and did not diagnose M with autism. However, they made numerous recommendations to address both M and the family’s needs.
40. In September 2018, the Care Quality Commission and Ofsted carried out a joint inspection of the Council’s special educational needs and disability provision. This included the pathway for an autism diagnosis. It found:
• There was an unacceptable delay for children under five years old waiting for a multi-agency assessment at the CDC. The pathway was not in line with the relevant NICE guidelines. While managers were aware of this, they have not provided plans to reduce these waiting times.
• Autism assessments for children and young people over five years old were comprehensive and timely. Assessments were evidence based, used national guidance and were informed by best practice. Reports given to families were detailed and included information about support provided by local and national groups, as well as practical advice and guidance.

Complaint responses

41. In response to Miss L’s complaint, on 8 August 2017 the Council said it could not assess M for autism. He needed to go through the autism pathway, which started with the school.
42. Miss L later told the Council it did not have a commissioned diagnostic pathway for autism in children, and she had not been able to get an autism assessment for her son. She was unhappy she had to go through the single assessment process in order to get an autism assessment.
43. On 23 August 2017, the Council said it opened a single assessment in April 2016, and closed it in January 2017 because Miss L withdrew her consent. It opened another single assessment in March 2017 against the original one, and apologised for the confusion.
44. In response, Miss L said the single assessment did not including recognition, referral and diagnosis of autism. Also, professionals could not diagnose autism.
45. In response to Miss L’s complaint, in January 2018, the CCG said Miss L needed to seek a referral for her son through his paediatrician at the Trust. The CCG understood this was in progress. The same month, the Trust provided a response to Miss L’s complaint which detailed events up to that point. It did not identify any fault with its own actions.
46. In May 2018, the Council told us while the CDC is based at the Trust, the service is delivered by a team including Council staff too.

Analysis

The CDC’s decision to remove M from the watchful wait list in January 2017

47. The CDC was satisfied with M’s progress and considered his development was only mildly delayed. The CDC wanted to see how M progressed with support from other services before completing a multi-agency assessment. Also, the CDC said Miss L had not been engaging with other services while he was on the watchful wait list. Therefore, it removed M from the list.
48. The evidence I have seen supports the explanation about why M was removed from the watchful wait list. Miss L did not engage with all the services the CDC requested her to. Also, based on the limited evidence it had about M’s development, it was satisfied it did not need to complete the multi-agency assessment.
49. Miss L felt the Council’s Family Hub staff were invasive during the single assessment. The Council also explained it could not get an autism assessment for M. I agree the Council could not do this. I also appreciate Miss L became frustrated with the single assessment, and how it fit into the pathway to get an autism assessment. The CDC could have explained why the single assessment was so important, and how it fed into the pathway for an autism assessment. However, there was no fault in requiring the family to follow the processes that were set out.
50. Overall, I do not consider the CDC’s decision to remove M from the watchful wait list in January 2017 was fault.
51. However, the CDC removed Miss L from the watchful wait list in July 2016 as the Council claimed she withdrew her consent to the single assessment. I have not seen evidence Miss L withdrew her consent at that time. The Council has since accepted Miss L withdrew her consent in January 2017. The CDC reinstated M in October after Miss L confirmed she had not withdrawn consent, and the single assessment was then completed.
52. I consider the CDC should have told Miss L it had withdrawn M from the watchful wait list in July 2016. This led to a short delay which caused Miss L distress and confusion. If the CDC told Miss L in July 2016, I consider she would have confirmed she had not withdrawn her consent to the assessment. I have recommended how the Trust can remedy the injustice to Miss L later in this statement.

The delay in getting an autism assessment

53. It took the CDC 16 months to decide not to complete the multi-agency assessment. The CDC said it took this long because M’s development was only mildly delayed, and the team wanted to see how M responded to the support already on offer before engaging in a lengthy assessment. The decision not to carry out the assessment was not due to any capacity issues within the service.
54. The CDC were waiting for Miss L to complete the single assessment. I do not consider the CDC’s pathway stopped Miss L accessing the autism assessment for her son. The CQC identified concerns with waiting times for a multi-agency assessment. However, I do not consider those concerns apply in Miss L’s case.
55. Between April and December 2017, the Trust wanted to see how M progressed after he started full time education in September. In April, the doctor considered M’s symptoms, Miss L’s concerns and the CDC’s decision in January. The doctor also referred M to Barnardos for sleep issues, and prescribed medication. I have not found fault with the way the Trust reached its decision to see how he progressed at school.
56. Between December 2017 and March 2018, the Trust followed the pathway for referring children over five to the ASC screening clinic. M turned five in October 2017. This was the correct route for M as Miss L still had concerns he had autism. I do not consider there was any fault with the Trust.
57. CAMHS started the autism assessment within three months of the referral from the Trust. This was in line with the relevant NICE guidelines. I do not consider CAMHS was at fault.
58. Overall, I do not consider there were any delays in the Trust providing an autism assessment for M. Also, I have not identified significant flaws in either diagnosis pathway for children under and over five. Both pathways had a route towards ultimately gaining an autism assessment.

The lack of diagnosis by CAMHS

59. In June 2018, the professionals in the autism assessment were a specialist clinical psychologist, a clinical psychologist and an assistant psychologist. These were the right professionals to complete the autism assessment as per the NICE guidelines.
60. I consider the CAMHS assessment of M was robust, and in line with the relevant NICE guidelines. The professionals:
• Considered the parents’ concerns and the views of the paediatricians who referred M for an autism assessment.
• Considered M’s experience of home life and at nursery and school
• Used an autism tool to capture information about M’s development, including interviews with M and the family.
• Reviewed questionnaires from the school and family about M’s social communication.
• Considered M’s medical history, including speech and language therapy, cardiology and paediatrics.
• Carried out a physical examination of M.
• Considered other diagnoses to explain M’s symptoms and made the appropriate referrals for these.
• Explained what M’s strengths, skills and impairments were, and made recommendations to provide support for him; and
• Communicated the result of their assessment to the family in a meeting.
61. Miss L said it was not in line with the school reports and earlier paediatric assessments. The evidence shows professionals took the school reports and paediatric assessments into account during the assessment process. The professionals involved in the autism assessment were trained to provide the diagnosis of autism. I understand Miss L disagreed with the professionals’ consideration of evidence. However, I am satisfied their assessments properly considered all the available evidence and where they disagreed with other professionals, they have provided appropriate explanations to explain their differing views.
62. Miss L did not agree with the CAMHS view on her son’s social communication. The Trust provided a comprehensive reason why it came to a different view about M’s social communication in its report. The Trust took the Miss L’s concerns into account but did not identify the same issues during their assessment of M’s behaviour.
63. Overall, I consider the Trust’s assessment was in in line with the relevant NICE guidelines. I understand Miss L has approached another Trust for a second opinion.

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Recommendations

64. Within four weeks of the final decision, the Trust should apologise to Miss L for the distress caused when it removed M from the watchful wait list in July 2016.

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Final decision

65. I do not consider the CDC’s decision to remove M from its watchful wait list in January 2017 was fault. However, the CDC removed M from the watchful wait list in July 2016, without telling Miss L. This caused her distress.
66. I do not consider the Trust unnecessarily delayed sending M for an autism assessment. Also, I have not found fault with CAMHS’s assessment of M.

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Investigator's decision on behalf of the Ombudsman