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East London NHS Foundation Trust

P-003855 · Statement · Decision date: 27 July 2023 · View East London NHS Foundation Trust scorecard
Complaint (AI summary)
Mr A complained the Trust stopped his daughter's autism assessment and family support without explanation, causing his family uncertainty, anxiety, and distress.
Outcome (AI summary)
The complaint was closed as the Ombudsman found no evidence that the Trust did anything wrong in this matter.

Full decision details

The Complaint

3. Mr A complains about the care and treatment he and his daughter, Ms L, received from the Trust between June 2020 to February 2021. He complains the Trust:

• stopped his daughter’s autism assessment • stopped the family’s autism support • failed to explain why the support was stopped.

4. Mr A says the family suffered from support being stopped. He said the lack of a confirmed diagnosis has left Ms L in uncertainty and has caused anxiety. He said the support stopping without notice or explanation caused upset, distress and frustration to them all.

5. Mr A wants the autism assessment completed and family support started again. He wants changes to avoid this happening to other families. He also wants an apology.

Background

6. Ms L’s GP referred her to the Trust on 3 January 2020 for an ASD Assessment (an assessment to see whether a person is on the autistic spectrum).

7. An ASD assessment involves interviewing parents, observations at school and face to face meetings with the young person. This part of the ASD assessment is known as Autism Diagnostic Observation Schedule (ADOS). It lets clinicians check for behaviours which would confirm the diagnosis.

8. The Trust confirmed it had received the referral and began the assessment process. It sent Mr A and Mrs A questionnaires to complete in February 2020 and sent Ms L’s school forms to complete.

9. Ms L’s school replied in March 2020 and the Trust confirmed Ms L had been accepted onto the Autism Liaison Pathway for further screening and assessment to see if she met the criteria.

10. In April 2020 the Trust confirmed it had received the family’s completed questionnaires. It confirmed the next step of the assessment process needed face to face meetings with Ms L. It said it could not currently complete the next step of the assessment or offer face to face appointments due to the COVID-19 pandemic.

11. In June 2020 the Trust spoke to Mr A to discuss Ms L’s behaviour and ways to help her parents in managing that behaviour at home. The Trust suggested Mr A contact ‘Early Help’ for support for the family. Early Help is a local authority service to support children and families when problems develop. It can be provided at any stage in a child or young person's life. Mr A contacted them at the end of June 2020 but it said it was unable to help.

12. On 14 July 2020 the Trust reported on Ms L’s assessment so far. The report said it had conducted a phone assessment with Ms L’s parents. The report gave a provisional diagnosis of high-functioning autism (HFA) for Ms L. It confirmed the next step for a complete diagnosis would need the ADOS assessment or school observation to be completed. It said the report so far was a general assessment and on its own a diagnosis of autism could not be made.

13. In complaining to us Mr A said all support stopped after this and the Trust provided no explanation when he asked for one. He said the Trust then stopped communicating with him and stopped Ms L’s autism assessment.

Findings

Stopped Ms L’s autism assessment

16. Before we decide if we should do 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 signs that something has gone wrong.

17. The NICE guidance says an autism assessment should start within three months of a referral and be done by a team of people who are specialists in autism.

18. It says the assessment includes ‘collecting information to help the assessment’ from the school, doctor or social worker. During the assessment the autism team will talk to the young person and family to help them get to know the young person.

19. It says they might also need to come and see how the young person gets on at school or at home and arrange other assessments. This information will help them work out how best to help the young person and plan what support the young person and their family need.

20. The Trust started the assessment within three months of receiving Ms L’s referral in January 2020. It completed some initial activity with Ms L’s family and her school. In March 2020 the family completed questionnaires. The Trust said further assessment was needed and it sent questionnaires to the family and Ms L’s school to complete in April 2020.

21. COVID-19 lockdown began in March 2020 and many schools were closed. The Trust explained to Mr L it was unable to arrange any face-to-face assessments due to the COVID-19 pandemic. It said it planned to restart the assessment process at the first available opportunity and would contact Mr A with further information as soon as it could.

22. The Trust continued with non-face-to-face parts of the process during summer 2020.

23. On 9 October 2020 the Trust emailed Mr A confirming Ms L was still on the assessment pathway. It explained it had done as much possible up to the pandemic restrictions. It confirmed the next stage of the assessment process was to complete the observations. The Trust told Mr A this would be a face-to-face appointment and could not be completed if either child or examiner had to wear personal protective equipment (PPE). The Trust told Mr A once restrictions allowed it to safely offer this assessment then it would contact him to arrange an appointment.

24. The Trust wrote to the parents on 12 October 2020, saying Ms L was still on the assessment pathway. In October Mr A changed his GP practice. The new practice wrote to the Trust on 29 October for the transfer of Ms L’s care to another Trust’s service as the family felt that would be helpful. On 16 December the Trust did this and told Mr A of Ms L’s discharge from its service and confirmed it would start the process for transfer of her care.

25. Our Principles say organisations should do what they say they are going to do. In this case, the Trust said it would complete an autism assessment for Ms L.

26. The Trust did that. It started the autism assessment process in line with NICE guidance. The Trust completed all parts of the assessment that it could in the COVID-19 restrictions at that time.

27. The Trust kept Mr A informed between March and October 2020 of the process, telling him Ms L needed a school observation and face-to-face meeting to complete the assessment process.

28. The Trust explained to Mr A it could not complete Ms L’s autism assessment without school observation. It said this could not be done remotely and all young people waiting for this assessment faced these delays due to the pandemic.

29. Mr A complains the Trust stopped Ms L’s autism assessment. We have seen no sign that was the case. It discharged Ms L from its service in December 2020 only after Mr A asked it to transfer Ms L’s care to another Trust. We have seen no sign the Trust would not have completed Ms L’s assessment had Mr A not transferred her care somewhere else. We have seen no signs the Trust did anything wrong. We will take no further action on this.

Stopped the family’s support and would not explain why

30. We have considered these two parts of the complaint together.

31. Our Principles say organisations should behave helpfully. They should treat people with sensitivity. It is worth noting the Trust’s role here was limited to providing an autism assessment for Ms L.

32. In June 2020 the Trust discussed ways to help Mr A with Ms L’s behaviour. It suggested a referral to ‘Early Help’. Mr A confirmed he contacted the service but it could not help. The Trust also reassured Mr A the service would progress Ms L’s assessment and begin part of it over the phone.

33. The Trust emailed Mr A on 21 October 2020 to say he could contact its child and adolescent mental health service clinician whenever the family needed support with Ms L.

34. Mr A says the Trust stopped support for the family. We have seen no sign that was the case. We have seen nothing to suggest the Trust was responsible for providing support beyond the assessment itself. The Trust offered opportunities to contact it if the family needed help with Ms L. In June and July 2020 the Trust gave Mr A details of ’Early Help’, and also offered to refer him directly. Mr A indicated ‘Early Help’ could offer no support but that was not the Trust’s responsibility. We have seen no sign the Trust did not act helpfully or sensitively in line with our Principles. It did not stop the family’s support because it was not providing support. We will take no further action on these complaints.

35. We acknowledge Mr A’s frustration in not being able to speed up Ms L’s assessment. We know this must have been a difficult time for him and his family.

Our Decision

1. We have carefully considered Mr A’s complaint about East London NHS Foundation Trust (the Trust). We are sorry to hear about the circumstances that led Mr A to complain to us and the impact the events had upon his family. We would like to thank Mr A for taking the time to complain to us and for supplying the information we needed to complete our decision.

2. We have seen no sign the Trust did anything wrong. We will explain our decision in more detail below.

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