Guy's and St Thomas' NHS Foundation Trust

5. Mr A complains about the care given to his child, C, by the Trust between June and November 2023. Mr A says the Trust:

• failed to adequately involve or consult him regarding a potential autism assessment in line with his parental responsibility • incorrectly decided to carry out an autism assessment on C during a period of medical treatment for a kidney condition, when they were highly stressed and anxious • failed to adequately consult or meet with him throughout the assessment process, resulting in a flawed report.

6. Mr A says C has been subjected to unnecessary stress. He also says he has experienced stress and anxiety because he was excluded from the decision-making processes in C’s care.

7. Mr A is seeking an acknowledgement of mistakes and an apology from the Trust. He is also seeking financial remedy.

8. Mr A’s child, C, has a history of membranoproliferative glomerular nephritis (a kidney disorder). Both parents have parental responsibility. C attended medical appointments with only their mother during the period in question.

9. In late 2022 and early 2023, C underwent several procedures, including a renal biopsy. He was six years old at the time. During this period, staff at the Trust experienced difficulties carrying out blood tests due to C’s behaviour in the hospital. The hospital instituted play therapy sessions and were concerned further treatment for C’s medical condition would be very difficult if C’s behaviour was not modified.

10. During this period, C’s mother advised hospital staff C had features of Autism Spectrum Disorder (ASD), but had not been diagnosed formally. The hospital referred C for an urgent clinical assessment for ASD in January 2023. Mr A was not involved in this decision at the time of referral, for which the Trust subsequently apologised.

11. The Trust advised Mr A they believed C needed to be assessed before starting further treatment at the end of January 2023. Mr A did not agree with the hospital’s assessment that C had severe behavioural issues which required assessment, but agreed with the plan and agreed doctors would update him regularly.

12. The Trust carried out an in-person assessment for autism in April 2023, which was attended by C and their mother. Mr A says he was told verbally that he would be invited to discuss the assessment process, but was not invited to the assessment. According to the Trust’s final response, C’s mother made the clinical team aware of Mr A’s parental responsibility for the first time during the assessment.

13. A report labelled as a draft and dated May 2023 was emailed to Mr A in June 2023, which diagnosed C with ASD. Mr A spoke to the assessing clinicians via telephone and video call in June 2023 (one day prior to his receipt of the draft report) and July 2023.

14. The assessing clinicians noted the input from school professionals and A’s parents differed to that observed in the clinic assessment. They agreed with both parents that a school observation would be organised for September 2023.

15. The school observation was carried out in September 2023. The clinicians concluded that the behaviours observed were consistent with clinic observations and reported home behaviours and supported the diagnosis of autism. Mr A was updated at the end of September and his wish for a second opinion was noted and discussed. They also updated C’s mother in October.

16. The final report was issued in November 2023, which incorporated comments from Mr A and the results of the school observation. The report confirmed C’s ASD diagnosis. Mr A first complained to the Trust regarding this period of care in October 2023, and requested a formal response from the Trust in March 2024.

The Trust failed to adequately involve or consult Mr A regarding a potential autism assessment in line with his parental responsibility

20. 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 found any indications that something has gone wrong.

21. The Children Act 1989 explains the legal meaning of parental responsibility. It also explains that when the parents of a child were not married at the time of a child’s birth, the mother automatically has parental responsibility and the father can acquire it by becoming registered as the child’s father.

22. DHSC guidance on Consent for Examination or Treatment, section 19, says where a child under 16 lacks capacity to consent, then consent can be given on their behalf by any one person with parental responsibility. Section 23 says that consent given by one person with parental responsibility is valid, even if another person with parental responsibility withholds consent. This applies unless the treatment concerns ‘a small group of important decisions,’ in which case the courts may adjudicate.

23. NHS guidance on consent to treatment for children and young people says, by law, healthcare professionals only need one person with parental responsibility to give consent for them to provide treatment. GMC ‘Professional Standards’ guidance, section 27, says it is usually sufficient for clinicians to have consent from one parent.

24. NICE guidance on recognition, referral and diagnosis of ASD says clinicians should seek parental consent before referring a child for an assessment and discuss any concerns with parents.

25. Our adviser said clinicians would discuss the child’s care and family background with the parent who brought the child to the appointment, which in this case was C’s mother. They said unless it was explicitly raised, they would not go into details about whether both parents had parental responsibility, and would assume that parents would communicate with each other regarding their child’s care.

26. The records show that C’s mother sought the referral for an ASD assessment and gave her consent. There was no requirement for the Trust to seek Mr A’s consent, even if it had been aware of his parental responsibility.

27. We recognise Mr A’s concern that he was not consulted prior to the arrangement of C’s autism assessment. Having reviewed the evidence, we are satisfied the Trust followed legislation and relevant guidelines when it gained consent for and arranged C’s autism assessment. We will therefore not be looking at this part of the complaint further.

The Trust incorrectly decided to carry out an autism assessment on C during a period of medical treatment

28. C received treatment for their kidney condition throughout 2022 and early 2023. They underwent a renal biopsy in January 2023. At several appointments in late 2022 and early 2023, clinicians involved in C’s care became concerned about their behaviour impacting on their medical treatment. Following discussions with C’s mother, C was referred for an urgent ASD assessment in January 2023. The assessment was carried out in April 2023.

29. GMC ‘Good Medical Practice’ says clinicians should promptly provide suitable advice, investigation or treatment where necessary.

30. NICE guidance on autism assessment says clinicians should perform a general physical examination (1.5.6).

31. The Trust referred C for an ASD assessment on an urgent basis, because it was concerned whether their ongoing treatment could continue without their behaviour being addressed. This is in line with GMC guidance regarding prompt investigations.

32. Our adviser said NICE guidance on autism assessments does not suggest a physical medical issue is a contraindication to an ASD assessment. They said the assessment was carried out over a period of several months and involved several different appointments, which would not have impacted on the management of C’s ongoing medical issue and would have minimised any anxiety. Similarly, they said there is no indication in the records that the ASD assessment was compromised by C’s medical issue.

33. We recognise Mr A’s concern that the Trust decided to carry out an autism assessment on C while he was receiving other medical treatment. In summary, the Trust decision to refer C for an autism assessment while he was receiving other medical treatment was not outside of GMC and NICE guidance. We will therefore not be looking at this part of the complaint further.

The Trust failed to adequately consult or meet with Mr A throughout the assessment process, resulting in a flawed report

34. The Trust carried out C’s autism assessment in April 2023, which was attended by C and their mother. The Trust say it was at this point it was formally made aware of Mr A’s parental responsibility. Mr A says he was told verbally in April that he would be invited to discuss the process, but this did not happen. There are no records to suggest the Trust invited Mr A to discuss the assessment at this point.

35. NICE guidance on ASD assessments, section 1.5.5, says clinicians should take a full family history, including the child’s experience of home life. Section 1.8.1 says the findings of the assessment should be discussed with parents in person and without delay. Section 1.6.2 outlines the criteria for a second opinion following assessment.

36. Following the assessment process beginning in April 2023 and the taking of a family and home life history from C’s mother, the Trust was aware Mr A had parental responsibility. The Trust discussed the assessment process with Mr A by phone and issued the draft report by email. They then discussed the draft report by phone. This is not entirely in line with NICE guidance, but it is not clear whether Mr A requested or was able to attend in person meetings.

37. The draft report issued to Mr A in June 2023 gave him the option of providing his input into the process. The report said it would be sent to parents in the first instance and invited comments from them. They said Mr A’s comments and input were taken into account, as demonstrated by the Trust’s arrangement of further school observations. These observations were incorporated into the final report of November 2023.

38. Our adviser said the assessment was carried out to a very high standard. They said it represented a ‘gold standard’ ASD assessment, with general history and observations, information gathered from multiple sources and structured assessments using several different assessment processes.

39. They said that while guidance had been broadly followed in terms of communication with Mr A, the Trust could have communicated with him more promptly and via in person meetings, if this had been preferred by Mr A. Our adviser said it was not standard practice to issue a draft report, and that often the only report issued to parents is the final report. They said the Trust decision to issue a draft report had allowed input from both parents, which was taken forward into the final report. They said that on delivery of the final report, Mr A was informed of his right to a second opinion, which is in line with relevant guidance.

40. In summary, the Trust communicated with Mr A broadly in line with NICE guidance throughout C’s ASD assessment process. The Trust could have offered face to face meetings with Mr A, if it had not done so, and communicated more promptly with him following the completion of the draft report. Overall, the Trust consulted with Mr A and included him in the assessment process in line with guidance.

41. We understand Mr A’s concern that the Trust did not adequately consult with him through the assessment process, which resulted in a flawed report. Having reviewed the evidence, we are satisfied the Trust followed NICE guidance and included Mr A in the process as soon as it became aware of his formal parental responsibility. We are satisfied it took Mr A’s input into account in the final report. We will therefore not be looking at this part of the complaint further.

42. We thank Mr A for taking the time and effort to bring his complaint to our attention. We recognise how stressful and frustrating this experience has been for him and his family. We hope our explanation provides some reassurance about the care and treatment C received and the communication Mr A received from the Trust. We wish Mr A the best for the future.

1. We have carefully considered Mr A’s complaint about the care given to his child, C, by the Trust in 2023.

2. We are very sorry to hear Mr A’s experience with the Trust has caused him distress.

3. We have looked at the Trust’s treatment of C and its communication with Mr A over this period. We have also looked at the Trust’s response to Mr A’s complaint. We have seen no indication anything went wrong in the Trust’s communication with Mr A prior to arranging the assessment, the decision to arrange the autism assessment for C, or its consultation with Mr A through the assessment process.

4. We hope our explanation below reassures Mr A the Trust assessed C appropriately and communicated with him in line with guidance.