West Suffolk NHS Foundation Trust

7. Mrs J complains about the care the Trust provided to her son, K, between July 2023 and November 2024 concerning an Autism Diagnostic Observation Schedule (ADOS) assessment. Specifically, she complains the Trust:

•did not arrange the ADOS assessment at their local centre •did not video record K’s ADOS assessment in line with guidance •did not take an appropriate family history during the ADOS assessment •did not refer K to Great Ormond Street Hospital (GOSH) for a second opinion despite requests from parents •provided incorrect information regarding K’s referral to the Autism Diagnostic Youth Service (ADYS).

8. Mrs J says the failure to follow procedure for the ADOS assessment led to K scoring lower and not being diagnosed with autism. She says not referring him for a second opinion has left K without the support he needs, with mental and physical effects. She says K is being bullied at school and has been attacked at school and in the community. This has caused ongoing stress and worry for the family.

9. Mrs J says the Trust’s failure to provide correct information regarding K’s referral led to time being wasted and him not being placed on the waiting list. She says waiting times have increased and K could wait a further three years before being re-assessed.

10. Mrs J says K does not have the correct support in place at school, which affects his anxiety and other medical conditions and causes stress. She says the stress and upset has also affected her mental and physical health.

11. Mrs J wants K to be referred to GOSH for an autism assessment. She is also seeking an apology, service improvements and financial remedy of at least £3000.

12. Mrs J’s son, K, is now 13 years old. K was referred to Community Paediatric Services (CPS) several times in 2021 and 2022. On each occasion his referral was declined. Mrs J initiated a complaint about the Trust.

13. Following the conclusion of this complaints process, the Trust agreed to carry out an ADOS assessment of K. This took place in July 2023. A speech and language report was completed and a school visit carried out by the consultant paediatrician. In January 2024, the Trust informed Mr and Mrs J that K did not fulfil all the diagnostic criteria for autism. They suggested the Autism Diagnostic Youth Service (ADYS) could be accessed if Mrs J sought a second opinion, and believed K was already on ADYS’s waiting list.

14. In February 2024, Mrs J wrote to PALS about the results of the ADOS assessment and advised K was not, in fact, on the ADYS waiting list. She also advised she was seeking a referral to Great Ormond Street Hospital (GOSH). In September, the Trust apologised for the confusion and said they were happy to refer K to ADYS with the parents consent, but declined to make the referral to GOSH. The Trust said they did not refer K to GOSH because GOSH require that the community team retain responsibility for ongoing treatment, which the Trust did not feel would be appropriate following his discharge and because K was over 11 years of age. This meant K was now beyond the age range cared for by CPS. The Trust felt the ADYS team should review K’s needs, because it deals with young people aged 11-17.

15. In October 2024, Mrs J gave consent for the ADYS referral and again requested referral to GOSH. In November, the Trust confirmed it had made the ADYS referral and confirmed it would not make a referral to GOSH for the reasons stated above.

The Trust did not arrange the ADOS assessment at Mrs J’s local centre

19. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not seen indications something has gone wrong.

20. Mrs J complains the Trust incorrectly arranged K’s ADOS assessment in a centre further away, rather than at their local centre.

21. We recognise Mrs J is concerned that K’s ADOS assessment was held at an unfamiliar centre. We are sorry to hear this caused her distress.

22. The records show the Trust agreed to carry out an ADOS assessment in June 2023. The assessment took place in July 2023, followed by a speech and language assessment in October and a school visit in November. Mrs J was advised of the outcome in January 2024.

23. Our adviser said there is no specific guidance saying assessments should be held at a patient’s local centre. They said both sites in this case are part of the same Trust. They said appointments would have been arranged according to consultant availability and to ensure K was assessed as soon as possible, and the assessment was arranged in line with standard practice.

24. We recognise Mrs J’s concern that K was assessed at an unsuitable location. Having reviewed the evidence, we are satisfied the Trust arranged K’s assessment in line with standard practice and ensured he was seen promptly. We will therefore not look at this part of the complaint further.

The Trust did not video record the ADOS assessment

25. Mrs J complains the Trust did not video record K’s ADOS assessment in line with guidance. She says she has been told all other providers record assessments.

26. In its response to Mrs J’s complaint, the Trust said it is not a requirement to record assessments. It said that while practice varies nationally, there is no clinical requirement to record assessments.

27. Our adviser said there is no guidance or requirement for ADOS assessments to be recorded. The NHS webpage on ‘What happens during an autism assessment’ does not suggest assessments are routinely recorded. Our adviser told us assessments are sometimes recorded to enable review of the assessment and allow clinicians to check certain elements to ensure standardisation of testing, but recording is not integral to the assessment. They said the Trust’s decision not to record the assessment was in line with guidance and NHS information.

28. We recognise Mrs J’s concern that K’s assessment should have been recorded. Having reviewed the evidence, we are satisfied the Trust’s decision not to record the assessment was in line with standard practice. We will therefore not be looking at this part of the complaint further.

The Trust did not take an appropriate family history during the ADOS assessment

29. Mrs J complains the Trust did not take an appropriate family history during the ADOS assessment.

30. NICE guidance on ‘Autism spectrum disorder in under 19s: recognition, referral and diagnosis,’ CG128, section 1.5.5, says a developmental, medical and family history should be taken during the assessment.

31. The records show Mrs J and K had engaged with the Trust since 2021. Clinicians met with Mrs J to discuss K in July 2022 and discussed the family’s medical background. The ADOS assessment process began in July 2023. Mrs J spoke to the assessing clinician to give background in July and by video call at the start of August. In January 2024, the Trust advised Mrs J that following assessment, K did not meet the diagnostic criteria for a diagnosis of autism.

32. Our adviser said that clinicians were aware of Mrs J’s family history from previous engagements with them. They said an appropriate developmental, medical and family history appeared to have been taken, in line with NICE guidance CG128. Our adviser said Mrs J’s genetic family history had been discussed in the meeting of July 2022, where the Trust had clarified K did not have any genetic disorders. This indicates clinicians were aware of the family history.

33. Our adviser said the family history would not have changed the way the ADOS assessment was carried out. They said it may have informed the decision to accept the referral for assessment, but would not influence the outcome.

34. In summary, our adviser said the Trust took an appropriate family and social history during the assessment, in line with NICE guidance.

35. We recognise Mrs J’s concern that the Trust did not account for her family history when carrying out K’s ADOS assessment. Having reviewed the evidence, we are satisfied the Trust took a history in line with guidance and carried out the assessment appropriately. We will therefore not look at this part of the complaint further.

The Trust did not refer K to Great Ormond Street Hospital (GOSH) for a second opinion

36. Mrs J complains the Trust did not refer K to GOSH for a second opinion, following her request in February 2024.

37. In its response to Mrs J’s complaint, the Trust said it did not make the referral to GOSH, because GOSH require that the community team retain responsibility for ongoing treatment. The Trust said this would not be appropriate because it had discharged K from its CPS services and because CPS is responsible for children aged up to 11. It said because K was over 11 years of age, the ADYS team should review him, because it is responsible for young people aged 11-17.

38. GMC ‘Good Medical Practice’ says clinicians must respect a patient’s right to seek a second opinion. While there is no legal right to a second opinion, it should not be unreasonably refused.

39. GOSH online guidance about autism referrals says referrals must come from a local Child and Adolescent Mental Health (CAMHS) team with the backing of a CAMHS Lead Clinician or Consultant Psychiatrist and that the local team must accept responsibility for ongoing care. It says GOSH offer an assessment-only service.

40. Our adviser said GOSH’s guidance is clear that the community team should only refer for a second opinion if it was willing to retain responsibility for ongoing care. In this case, K’s age meant he was progressing outside the age range of Trust paediatric services (CPS) who originally assessed him. Because he was aged between 11-17, he required ongoing care from the ADYS service, rather than CPS.

41. Our adviser said the Trust CPS service could not have made the referral to GOSH as CPS could not have been responsible for K’s ongoing care, given he was aged over 11. CPS could not have referred him to GOSH with ongoing care falling under the ADYS team. The ADYS service would likely not have accepted responsibility for K’s ongoing care without reviewing him first.

42. Our adviser said the Trust’s course of action was reasonable and followed GOSH guidance. They offered to make a referral to the service appropriate for K’s age, which was taken up and completed once consent was received from Mrs J. In summary, our adviser said the Trust decision not to refer K to GOSH for a second opinion was in line with guidance.

43. We recognise Mrs J’s frustration that the Trust did not refer K to GOSH for a second opinion. We are sorry to hear of the distress this caused her and the delays she has experienced. Having reviewed the evidence, we are satisfied the Trust’s decision not to refer K to GOSH, but to instead refer him to the ADYS team, was reasonable, appropriate for his age and in line with guidance.

The Trust provided incorrect information about K’s referral to the ADYS service

44. Mrs J complains the Trust provided incorrect information regarding K’s referral to the ADYS team. She says this caused an avoidable delay to K’s referral.

45. The records show the Trust’s assessing clinician met with Mrs J in January 2024 following the conclusion of the ADOS assessment process. The clinic letter from this meeting said ‘Mrs [J] reports that [K] is already on the waiting list for the ADYS service.’

46. In February 2024, Mrs J complained to the Trust disputing the clinic letter which said K was already on the ADYS waiting list. She advised K was not on the ADYS waiting list and that the service had confirmed this via email. The records show ADYS emailed Mrs J to confirm K was not on their list and it had not received a referral for him.

47. In September, the Trust responded to Mrs J’s complaint. It said the assessing clinician’s clinic letter of January 2024 had documented that K was already on the ADYS waiting list and acknowledged this appeared to not be the case. It apologised for the confusion and said the miscommunication arose following information provided by Mrs J. It confirmed it was willing to formally refer K to the ADYS service if Mrs J gave her consent.

48. Mrs J gave her consent in October 2024. In its final response of November 2024, the Trust confirmed it would make the referral. The records show the referral was made in November.

49. The contemporaneous notes record the assessing clinician’s belief that K was already on the ADYS waiting list. It is unfortunate this was not the case, but there is no evidence this belief was anything other than a miscommunication between Mrs J and the assessing clinician.

50. Mrs J made the Trust aware that K was not on the ADYS waiting list through the formal complaints process. This point was one of several raised to the Trust in the same letter. We consider it reasonable that the Trust sought to collate a response to all these points together, in line with their normal complaints process.

51. Section 14 of the relevant legislation governing NHS complaints, ‘The Local Authority Social Services and National Health Service Complaints (England) Regulations 2009,’ says responses should be made as soon as reasonably practicable and within six months from the date the complaint was received. A period of six months passed following Mrs J making the Trust aware that K was not on the ADYS waiting list, and the Trust agreeing to make the referral once consent was provided. This is in line with the legislation.

52. Our NHS Complaint Standards say organisations should give fair and accountable responses to complaints and identify ways to put things right. Once the Trust became aware of the fact K was not on the ADYS waiting list, it responded within an appropriate timeframe and confirmed it was willing to make the referral once Mrs J provided consent. When Mrs J provided consent, it made the referral promptly. We consider the Trust’s response to this part of Mrs J’s complaint to be in line with our NHS Complaint Standards.

53. We understand how frustrating this delay was for Mrs J and are sorry that K experienced a delay in being added to the ADYS waiting list. Having reviewed the evidence, we are satisfied the Trust’s belief that K was already on the ADYS waiting list was a misunderstanding and does not amount to service failure.

54. When Mrs J made the Trust aware this was not the case, she did so through a formal complaints process in conjunction with several other points. We consider it reasonable the Trust took time to respond to these complaints in a single response, in line with the relevant legislation.

55. The Trust could not have made the referral any earlier, because to do so required Mrs J to give consent. When Mrs J gave consent for the referral to be made, the Trust actioned the referral promptly. We consider the Trust’s actions were reasonable and in line with legislation and our complaint standards. We will therefore not be looking at this part of the complaint further.

56. We thank Mrs J for taking the time and effort to bring her complaint to our attention. We recognise how distressing and frustrating this experience has been for her and her family. We hope our explanation provides some reassurance about the care and treatment K received. We wish Mrs J and K the best for the future.

1. We have carefully considered Mrs J’s complaint about the care her son, K, received from the Trust between July 2023 and August 2024.

2. We were very sorry to hear Mrs J’s experience with the Trust has caused her and K ongoing stress and worry.

3. Mrs J told us the Trust incorrectly arranged and carried out an Autism Diagnostic Observation Schedule (ADOS) assessment for K. She said the Trust did not arrange the assessment at a convenient location, did not take an appropriate family history and did not video record the assessment in line with guidance.

4. Mrs J also told us the Trust did not refer K for a second opinion to Great Ormond Street Hospital (GOSH) despite her requesting one and provided incorrect information regarding his referral to the Trust’s Autism Diagnostic Youth Service (ADYS).

5. We have looked at the Trust’s treatment of K over this period and the Trust’s response to Mrs J’s complaint. We have seen no indication anything went wrong in the Trust’s assessment of K or its decision not to refer K to GOSH for a second opinion. While there was a communication error concerning K’s referral to ADYS, we consider this was a mistake and does not indicate service failure. We consider the Trust’s actions, once made aware of the issue, were appropriate and reasonable.

6. We hope our explanation below reassures Mrs J the Trust assessed K appropriately and dealt with his referrals in line with guidance.