Summary: Ms B complained about the way an integrated health and social care service which includes a Council and four NHS Trusts completed assessments to decide whether her child had autism. She also complained about delays in the assessment process and a failure to make reasonable adjustments. We found no fault in the way the integrated service, Camden MOSAIC, completed an autism diagnostic assessment. There was a two-month delay in the assessment process which caused limited personal injustice but led to service improvements. Camden MOSAIC also failed to follow up on a referral for a second opinion. There was a delay agreeing reasonable adjustments by one of the NHS Trust and this caused Ms B injustice when accessing the service, but it has since improved. We recommend the NHS Trust apologise to Ms B. All the authorities within Camden MOSAIC should work together to improve the way referrals are followed up and monitored.

The complaint

1. The complainant, who I shall refer to as Ms B, complains about the way Camden MOSAIC assessed whether her child had autism. Camden MOSAIC is a jointly commissioned integrated service led by Central and North West London NHS Foundation Trust (CNWL Trust). Integrated services are provided by CNWL Trust, London Borough of Camden (the Council), Tavistock & Portman NHS Foundation Trust (T&P Trust), Whittington Health NHS Trust (WH Trust) and Royal Free London NHS Foundation Trust (RFL Trust). Ms B says there were delays in completing an adequate assessment of her child’s needs since 2017. As a result, she claims she had to pay for private assessments and therapy until the Trust agreed to arrange for an external independent assessment.
2. Ms B also complains about Camden MOSAIC’s failure to make reasonable adjustments in line with the Equality Act 2010 when she was going through the assessment process.
3. As a remedy for her complaint Ms B would like Camden MOSAIC to acknowledge that there were delays in providing an adequate assessment and reimbursement for private assessments she had to pay for. She also wants relevant staff to complete autism training.

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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 on behalf of both Ombudsmen. (Local Government Act 1974, section 33ZA, 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)).
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. 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

8. I have considered information provided by the complainant in writing and by telephone. I have considered information provided by the Council and the CNWL Trust in response to my enquiries. I have also considered the law and guidance relevant to this complaint.
9. Camden MOSAIC is a multidisciplinary team consisting of officers employed by all authorities named in this complaint. Where I refer to Camden MOSAIC it should be recognised that this represents all the authorities named in this complaint with the CNWL Trust acting as lead authority. Specific authorities will be named where any actions relate solely to that authority.
10. All parties have been given an opportunity to comment on a draft of this decision.

Legal and administrative context

11. The Council and a CCG commissions the Trust to provide Camden MOSAIC. The Council provides services within Camden MOSAIC as well as the Trust and three other NHS Trusts. The Trust is the operational lead for Camden MOSAIC and the wider Camden Integrated Children’s Services.
12. The London Borough of Camden and North Central London Commissioning Group commission Central and North West London NHS Foundation Trust to provide Camden MOSAIC.

Central and North West London NHS Foundation Trust is the operational lead for Camden Integrated Children’s Service (CICS), within which Camden MOSAIC sits. MOSAIC Child Development Team is one of the multi-disciplinary teams within Camden MOSAIC.

Staff are employed according to profession by each of the providers. Staffing is as follows:

• Speech & Language Therapists (SLT) are employed by WH Trust.
• Occupational Therapists (OT), Physiotherapists, Paediatricians are employed by RFL Trust.
• Child and Adolescent Mental Health Services (CAMHS) are employed by T&P Trust.
• Universal Children’s Services, CICS Leadership and administration are provided by CNWL Trust.
• Children’s Disability Social Workers and Keyworkers (KW) are provided by Camden Council.

13. NICE Clinical guideline [CG128] – Autism Spectrum disorder in under 19s: recognition, referral and diagnosis.

This guidance says, “1.5.1 Start the autism diagnostic assessment within 3 months of the referral to the autism team. 

1.5.2 A case coordinator in the autism team should be identified for every child or young person who is to have an autism diagnostic assessment. 

3. The autism case coordinator should:
• act as a single point of contact for the parents or carers and, if appropriate, the child or young person being assessed, through whom they can communicate with the rest of the autism team
• keep parents or carers and, if appropriate, the child or young person, up-to-date about the likely time and sequence of assessments
• arrange the provision of information and support for parents, carers, children and young people as directed by the autism team
• gather information relevant to the autism diagnostic assessment.”

14. The reasonable adjustment duty is set out in the Equality Act 2010 and applies to anybody (such as health and social care authorities) which carries out a public function. It aims to make sure that a disabled person can use a service as close as it is reasonably possible to get to the standard usually offered to non-disabled people.
15. The CNWL Trust has a Disability Policy for Service Delivery in place. This policy governs Camden MOSAIC and refers to the reasonable adjustment duty.

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What I found

Background

16. Ms B’s child, G, was assessed by a SLT in January 2017. The SLT completed the initial assessment and then made a referral to CICS. Within the assessment the SLT said, “to be assessed by MOSAIC for concerns around social communication and receive support if indicated”. At the time of this assessment G was less than three years old.
17. In May, a multidisciplinary coordinator wrote to Ms B to confirm G was accepted for an assessment with the MOSAIC development team. The letter offered an appointment with the Specialist Health Visitor who expected to meet with
    Ms B within six weeks of receiving the referral. The letter said the assessment may involve meeting with other members of the multidisciplinary team such as a Paediatrician, OT, SLT, Psychologist or Physiotherapist.
18. A month later the MOSAIC Specialist Health Visitor went to visit Ms B and G as agreed. Following this meeting the practitioner made a referral for keyworker support. The referral for keyworker support noted “will start ASD assessment after September”.
19. In July, again the CNWL Trust wrote to Ms B to say it had accepted G for an assessment with the MOSAIC Child Development Team (CDT). The letter listed six appointment dates for G and Ms B to be seen by different practitioners between November and December.
20. The CNWL Trust sent a letter to Ms B that detailed the aim of the six appointments its earlier letter had listed. the appointments included occupational and developmental assessment, autism diagnostic interview, assessment of behaviour and emotional wellbeing. The last meeting was the assessment feedback meeting. The CNWL Trust confirmed the first of these meetings was the start of the G’s formal assessment.
21. Following the assessment feedback meeting held in December 2017 the CNWL Trust wrote to Ms B. The letter came from a Consultant Paediatrician who was part of Camden MOSAIC. The letter confirmed the assessment was undertaken by members of the MOSAIC CDT which included the Consultant Paediatrician, a SLT, an OT and a Clinical Psychologist.
22. The letter confirmed the outcome of the assessment and stated, “although [G] had some traits which are often seen in children who have a diagnosis of autism spectrum disorder (ASD), when we reviewed all the information we had gathered on [G] during our assessment, using the DSM-5 diagnostic criteria tool, we found that G did not meet the threshold for a diagnosis of autism spectrum disorder at present.  However, I noted that we assessed [G] while [G] was still very young and that we may need to assess [G] again in the future once [G] has been to a nursery or similar setting.”
23. The letter also said that MOSAIC CDT felt a piece of work with MOSAIC CAMHS would be the way to address G’s behaviour. Once the CAMHS work was completed and G had spent time in nursey the team would consider G’s progress and any difficulties arising. This would help determine whether further diagnostic assessment was necessary also plan the next steps in G’s therapeutic intervention. The letter noted Ms B had consented to ongoing CAMHS work so the team would arrange this.
24. A Consultant Child & Adolescent Psychotherapist from T&P Trust wrote to Ms B following a meeting on 27 February 2018 as a referral had been received from MOSAIC for generic CAMHS. The letter said T&P Trust could offer Ms B and G some parent-child work but acknowledged Ms B’s main concern was getting G an ASD diagnosis and remaining in the MOSAIC service. The letter noted Ms B had met with Camden MOSAIC to discuss their assessment as she believed G had an ASD diagnosis. The letter asked Ms B to get in touch if she wanted any further help from this service.
25. Camden MOSAIC wrote to Ms B again in June 2018. The letter invited Ms B to several appointments where the Clinical Psychologist, OT and SLT could observe and assess G.
26. Ms B complained to Camden MOSAIC in June and alleged there had been delays in assessing G. She said MOSAIC CDT did not give G a diagnosis of ASD and she felt her views were not heard. Ms B also complained as she was dissatisfied with the support offered by MOSAIC CDT as well as other matters.
27. The CNWL Trust replied to the complaint in July. In response to the parts of the complaint relevant to this investigation the CNWL Trust said, it had followed NICE guidelines as it had started G’s assessment within three months of the referral. However, it acknowledged there was a four month wait for the rest of the assessment. It confirmed the MOSAIC CDT had used a recognised diagnostic tool when assessing whether G had an ASD. This had involved five professionals within the MOSAIC CDT completing several assessments and who all then concluded G did not have an ASD. The CNWL Trust confirmed a doctor would refer G to a clinic at the Royal Free Hospital for an independent second opinion.
28. The complaint response also referred to support Camden MOSAIC had offered to Ms B and G. Ms B had complained she would have liked to have support from the start of the assessment process. In response to this the CNWL Trust said there was a new early support pathway in place for young children referred to Camden MOSAIC. It apologised that this was not in place earlier for G to access. It said Camden MOSAIC would provide support to transition G to nursery including sharing strategies for nursery staff to use with G.
29. In response to Ms B’s complaint about the lack of support for a person with Asperger’s Syndrome the CNWL Trust said, it was ‘sorry that you do not feel that supportive strategies and reasonable adjustments have been used to support you to engage in the assessment process.’ The CNWL Trust said it was working with the Council to meet the outcome of its Autism Plan. It said the MOSAIC CDT tried to support Ms B by allocating a keyworker who then helped Ms B coordinate appointments and apply to charities for funding.
30. A doctor referred G for the second opinion assessment in October 2018. When responding to a further complaint from Ms B the CNWL Trust noted Ms B felt the referral was inappropriate and asked if she still wanted to go ahead with it. During a case discussion meeting in March 2019 the referral was discussed and one of the actions was to follow up on the assessment which had been made to the Royal Free Hospital.
31. The CNWL Trust responded to a follow up complaint from Ms B in July 2019 after it considered further complaint information she had provided. The parts of the response relevant to this complaint said:
• a joint occupational and speech and language therapy report and programme was provided for home and school with a recommendation to review G’s progress in nursery. Following this review no evidence was found to suggest G needed further occupational therapy.
• the referral to the Royal Free Hospital was rejected and this led to a referral to Great Ormond Street Hospital (GOSH).
• Camden MOSAIC did not reassess G as a review of the assessment completed by a different professional confirmed G scored below the threshold for diagnosis.
• Camden MOSAIC provides assessment and intervention for a broad range of children with complex and additional needs. G was offered appropriate support from the CAMHS service in February 2018 which Ms B declined. Following the reassessment G received a block of multidisciplinary therapy appointments.
• the CNWL Trust accepted Ms B was unhappy with the original assessment and review of the assessment. In response to this the CNWL Trust provided a new team of staff to work with G and arranged for a second opinion at GOSH.
32. In February 2020, an assessment team at GOSH completed a new autism assessment. This assessment report noted G had undergone a social communication in 2017 which was reviewed in 2018. This had concluded G had some traits of autism but did not meet the criteria for autism diagnosis.
33. The GOSH assessment noted G had language and cognitive skills within the appropriate age range. However, GOSH found that G’s motor and functional skills appear to be significantly below the average range expected at G’s age. The GOSH report said G had a range of sensory processing difficulties such as auditory sensitivity. The report confirmed G’s presentations were seen in clinic through both formal and informal observation as well as reported by G’s parents. The GOSH concluded that G showed enough difficulty to meet the criteria for Diagnosis of Autism Spectrum Disorder.

Findings

The assessment completed by Camden MOSAIC

34. Camden MOSAIC is a multidisciplinary team consisting of officers employed by all authorities named in this complaint. Where I refer to Camden MOSAIC this represents all the authorities named in this complaint with the CNWL Trust acting as lead authority. Specific authorities will be named where any actions relate solely to that authority.
35. Ms B is an expert of her child’s needs as G’s parent, and her view and opinion were just as important as that of the professionals involved. Given her caring responsibilities and natural concerns about G because of her experience with her other children she was right to involve professionals and push for G to be assessed when she did.
36. The process used by Camden MOSAIC when completing G’s autism assessment used the DSM-V manual. This is an assessment tool recommended by the relevant NICE guidance. Camden MOSAIC followed the relevant NICE guidance when completing the assessment. For example, it considered Ms B’s views, G’s developmental history and assessed through interaction and observation with G. It also included a multi-disciplinary approach involved speech and language therapy, occupational therapy, Consultant Paediatrician and Clinical Psychologist.
37. The approach taken by Camden MOSAIC was holistic and considered specific assessments. The approach did not solely rely on clinical judgement or
    autism-specific criteria. Rather approach by the CDT was to consider information from different sources.
38. The NICE guideline says, there may be uncertainty about the diagnosis particularly in children younger than 24 months. When the referral was first made G was younger than 24 months. The Camden MOSAIC team acknowledged G’s age and confirmed G may have to be assessed later, for example, after starting nursery. This was an appropriate approach based on good clinical guidance. The CDT also passed information to G’s nursery about the outcome of assessments and had discussions with school staff.
39. There was clear discrepancy and difference of opinion between Ms B’s reported signs and symptoms of G and the findings of the observations in the clinical setting. In this event Camden MOSAIC offered to continue to work with Ms B and G or refer to other appropriate services. This is in line with NICE guidance.
40. Camden MOSAIC also said it would refer G for a second opinion at the Royal Free Hospital when it responded to Ms B’s complaint in July 2018. A doctor made the referral in October 2018. Although Ms B later questioned the referral at the time it was made the evidence available shows the referral was discussed by the Camden MOSAIC team in March 2019. This suggests the referral was still in progress.
41. In response to our enquires the CNWL Trust said it had learnt that the Royal Free Hospital contacted a doctor within Camden MOSAIC in April 2019. The Royal Free Hospital said its assessment team had been trying to contact MOSAIC CDT for further information about G’s referral but had not received a response. Because of this the Royal Free Hospital assessment team did not proceed with the assessment.
42. The evidence available now, suggests Camden MOSAIC did not follow up on the referral made for the second opinion after it was made. Despite discussing in a case conference which took place about five months after the referral was made there is no evidence to show what action was taken. This is fault by Camden MOSAIC. If Camden MOSAIC had followed up on the referral it is more likely than not that a second opinion from the assessment team at Royal Free Hospital would have been provided. This is likely to have caused Ms B frustration and led her to complain again to the CNWL Trust and ask for another ASD assessment for G.
43. Camden MOSAIC made a referral to GOSH in July 2019 and any wait time from this time until the assessment was completed in February 2020 was not because of fault by Camden MOSAIC.
44. Although the GOSH assessed G as having a diagnosis of autism this does not lead to a view that Camden MOSAIC’s decision was made with fault. The GOSH assessment was completed in February 2020 and by this time G was two years older than when the original Camden MOSAIC assessment was completed in 2017. G was also being observed by external professionals in a school setting and this helped to inform the GOSH assessment when Ms B provided information. It is more likely than not that these factors could have had a bearing on the assessment outcome.
45. The GOSH completed a comprehensive assessment but its report did not discuss the difference between the GOSH assessment and that completed by Camden MOSAIC. In any case, the GOSH assessment captured G’s presentation at the time when G was two years older and attending school. The Camden MOSAIC assessment did not have the benefit of some factors due to G’s age.
46. I have considered whether Ms B decision to pay for private therapy assessments was because of fault by the Camden MOSAIC. Based on the evidence available now, I do not consider this to be the case. Camden MOSAIC had continued to work with Ms B and G and reviewed the assessment when Ms B raised concerns. When she remained dissatisfied it made a referral for a different assessment although it failed to follow this up. Camden MOSAIC kept G’s case under review and referred the case to the GOSH for a second opinion when this became necessary.
47. The CNWL Trust said there was no change in the service that G received once diagnosed with autism as service provision is dependent on functional need rather than a particular diagnosis. Camden MOSAIC provided evidence to show the services G continued to receive after being diagnosed with autism.

Delays by the CNWL Trust in assessment process

48. When responding to Ms B’s complaint the CNWL Trust said there was a four month wait for the rest of G’s assessment to commence as it counted the visit from the Specialist Health Visitor in June 2017 as the start of the assessment. I do not find this to be the case as the evidence available now suggests G’s assessment started much later.
49. The CNWL Trust accepted G for an assessment in May 2017. In line with NICE guidance the autism diagnostic assessment should have started within three months. The evidence available suggests the first visit made in June 2017 was not the start of the ASD assessment process. This is because the visiting officer recorded that the ASD assessment would start after September 2017. The next appointment was in November 2017 and this means the assessment did not start within three months in line with the guidance. This is fault by the CNWL Trust as it was the lead agency responsible for the administration of the service.
50. I find that there was a delay of two months even after allowing three months for the assessment to have started. When responding to Ms B’s complaint the CNWL Trust apologised for delay. It is therefore not necessary for the Trust to recommend a further apology for the injustice caused to Ms B. The CNWL Trust also took action to improve by reviewing the resources within Camden MOSAIC and moved staff capacity from one service into Autism Spectrum Disorder assessment pathways.

Reasonable adjustments made by CNWL Trust

51. When Ms B approached the CNWL Trust in 2017 to ask for an assessment of G it was aware she had a disability. Ms B said the need to make reasonable adjustments had previously been discussed with the CNWL Trust when she complained about her older child. This is likely the case as the CNWL Trust referred to this in one of its complaint responses to Ms B. Therefore, it is likely that CNWL Trust was aware Ms B had needs at the time it was dealing with G’s case.
52. The CNWL Trust said the Specialist Health Visitor noted Ms B’ diagnosis and request for additional support around organisation. The CNWL Trust provided some evidence of the keyworkers interaction with Ms B in providing some support. On the evidence available now, I do not find on balance the CNWL Trust made reasonable adjustments for Ms B in line with the Equality Act 2010 Code of Practice or its own policy.
53. The CNWL Trust’s policy states ‘once a service provider has become aware of the access requirements of a particular person who uses or seeks to use its services, it might then be reasonable for the service provider to take a particular step to meet these access requirements. This is especially so where a person with a disability has pointed out the difficulty that they face in accessing services, or has suggested a reasonable solution to that difficulty.’ This is in line with the Act’s Code of Practice.
54. Ms B provided the CNWL Trust with specific examples how the service could better support her to access the service. These examples are detailed in the Trust’s response letter sent in August 2018. The evidence available now does not show the CNWL Trust recorded these reasonable adjustments in Ms B’s records as stated in its policy. Therefore, I find the CNWL Trust at fault. The CNWL Trust should have made Camden MOSAIC staff aware of the need to ask about reasonable adjustments sooner than it did. It is likely Ms B had to explain what she needed at different times owing to a lack of awareness and consistency by the officers involved. It is also likely Ms B could not access the service as close as it was reasonably possible to get to the standard usually offered to non-disabled people.
55. The CNWL Trust has since improved and says Camden MOSAIC staff will now routinely ask at the start of the service whether a person has additional needs that requires additional support. This information is then appropriately recorded in patient’s notes.

Conclusion

56. I do not find fault in the way Camden MOSAIC completed the autism diagnostic assessment for Ms B’s child. There were delays in the assessment process but the CNWL Trust made improvements. Camden MOSIAC failed to follow up on a referral for a second opinion and this is likely to have caused Ms B avoidable frustration. The CNWL Trust delayed agreeing reasonable adjustments in line with the Equality Act 2010 Code of Practice and its own policy. As a result, it is likely that Ms B could not access the service as close as it was reasonably possible to get to the standard usually offered to non-disabled people.

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Recommendations

57. Within four weeks of the final decision, we recommend:
• the CNWL Trust as the lead agency remind Camden MOSAIC, which includes all the authorities named in this complaint, of the importance of following up on referrals after they are made to ensure good practice. Camden MOSAIC should also review processes to ensure referrals can be tracked and monitored where necessary; and
• the CNWL Trust write to Ms B to apologise for the impact the failure to make reasonable adjustments in line with the Equality Act 2010 Code of Practice had on her. We also considered a financial remedy in line with our usual approach which was declined by Ms B.

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Final decision

58. I have considered comments from all parties and found fault causing injustice as detailed in this decision statement. The authorities have agreed to the recommendations, so I have completed the investigation.

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Investigator's decision on behalf of the Ombudsman