Royal Berkshire NHS Foundation Trust

4. Mrs Z complains about the Trust’s service in February 2019, when an unexpected change in Miss Z’s behaviour caused concerns. This included aggression towards Mrs Z and Miss Z could not go to school.

5. Mrs Z says:

• she was treated unfairly and judged by staff due to being on an existing child protection plan. This includes staff making negative comments in safeguarding meetings • Miss Z was not given scans due to being autistic and needing sedation to tolerate procedures • Miss Z was almost removed from her care due to the comments staff made • investigations were delayed due to a lack of reasonable adjustments, such as sedation and shorter waiting times • potential treatment was delayed because of delayed investigations.

6. Mrs Z would like financial compensation for private health investigations for Miss Z.

7. Mrs Z says Miss Z is ‘severely autistic, very complex and non-verbal’. Mrs Z says Miss Z caught Influenza-B (flu) on 28 December 2018 and her behaviour changed after this.

8. She says her daughter was too unwell to go to school. She had arranged to see a paediatrician on 16 January 2019 to have her daughter medically signed off from school, but they did not arrive.

9. Miss Z was not eating, drinking, going to the toilet or getting out of bed.

10. On 24 February 2019, Miss Z’s behaviour became more challenging, but the ambulance service declined to take her to hospital and a mental health doctor was contacted instead. The doctor suggested police support to take Miss Z to hospital, which the family declined due to her distress.

11. On 25 February, Miss Z’s general practitioner (doctor) was contacted about sedation for her to be able to go to hospital by ambulance.

12. On 26 February, a consultant suspected an acute infection may have caused the change in behaviour, but recommended an MRI scan to rule out other potential causes. They also recommended a referral to the Child and Adolescent Mental Health Service (CAMHS).

13. On 27 February, Miss Z’s consultant reviewed her. They agreed with the plan, but believed the cause of the behaviour change was related to autism.

14. An appointment was arranged for an MRI scan around four weeks later, but no arrangements were made for sedation to support Miss Z to attend the appointment or have the procedure. Mrs Z cancelled this after consulting with Miss Z’s doctor.

15. On 5 March, an appointment letter was sent to Mrs Z for an MRI scan with a four to six week wait for this to be done under general anaesthetic. Mrs Z had concerns about how to get Miss Z to the appointment without sedation so it was cancelled.

16. During this time, Miss Z’s consultant raised concerns to Miss Z’s social worker about Mrs Z’s ability to keep Miss Z safe and meet her needs. A strategy meeting was held to discuss Miss Z’s needs and Mrs Z’s ability to meet them.

17. Mrs Z has arranged private consultations for Miss Z, alongside NHS consultations, to explore the diagnosis and treatment of the cause. These investigations are ongoing and no conclusive diagnosis has been made to explain the change in Miss Z’s behaviour.

19. The law says a person needs to make their complaint to us within a year of becoming aware of the problem (we call this the date of knowledge). We cannot investigate complaints brought to us after one year, unless we consider there is a good reason to do so. We have discussed this with Mrs Z to understand the reasons why she could not complain sooner. We have also considered the time the Trust took to respond to Mrs Z.

20. Mrs Z explained she first had reason to complain during Miss Z’s hospital admission on 24 February 2019, as she was faced with difficulties getting her to hospital for investigations due to the need for sedation. This is because Miss Z is autistic and experiences a high level of distress when getting out of the car to go to an unfamiliar place such as a hospital.

21. Mrs Z complained to the Trust on 11 February 2020, approximately 12 months after the problem she was complaining about. The Trust first responded to Mrs Z on 17 March 2020.

22. Following this, Mrs Z says she cared for her daughter at home due to the COVID-19 pandemic and her own workplace closed. She says she had no respite care and she had appointments to go to about her daughter’s social care and education.

23. The Trust responded to her again by email on 18 June 2021 and by letter on 15 July 2021. Mrs Z emailed on 31 July 2021 to say she was not happy with the response.

24. Mrs Z did not chase a response to this for a further six months. She says she attended a hospital appointment for herself on 20 January 2022 and took this opportunity to speak to the Patient Advice Liaison Service (PALS) about the lack of response she had received.

25. On 8 March 2022 the Trust responded to Mrs Z’s questions.

26. On 14 March 2022 Mrs Z emailed the Trust about the lack of a face-to-face meeting and delays to complaint handling.

27. On 15 March 2022 the Trust emailed Mrs Z advising it sent her a letter on 8 March 2022.

28. Mrs Z complained to us on 27 March 2022, approximately 25 months out of time.

29. On 13 October 2022 Mrs Z explained she was scared to complain sooner because of the involvement of social services. She also says she did not have access to the records she is complaining about at the time. She says:

• she received some of the information in 2021. She believes she was sent some strategy meeting minutes in error and this is the source of the comments she is complaining about in relation to taking her daughter to hospital • she received her daughter's medical records from the hospital in April 2022, which gave her more information about Miss Z’s admission • she is complaining now because she feels a psychologist working with her is suggesting if there is no change in her daughter in the next three months, then she should be removed from her care.

30. We have considered this explanation along with a timeline of events Mrs Z provided by email, in which she explains how the pandemic and ongoing child protection proceedings affected her and her family life during this time.

31. We have considered that Mrs Z received more information in 2021 and April 2022 which added elements to her complaint. But Mrs Z was already unhappy with the barriers to Miss Z’s care and treatment before she had this information. She had already complained to the Trust before receiving it, and already complained to us before receiving the information in April 2022. This does not affect the date of her knowledge and does not explain her delay in raising her concerns with the Trust or us. We consider Mrs Z’s complaint to be out of time by approximately 25 months. We have not seen any strong reason to show she was unable to progress her complaint sooner than she did.

32. We have also considered the impact Mrs Z claimed. As of 16 November 2022, NHS and private doctors had not diagnosed Miss Z with a condition linked to her behaviour change. This is still under investigation. We would be unable to decide whether a condition could have been identified and treated sooner without a diagnosis, because we cannot consider what the NHS could and should have done to diagnose and treat it. It is possible that investigations completed sooner under sedation could have been inconclusive or identified a condition explaining the behaviour. There is currently not enough information to reach a clear finding about this.

33. Some of the additional information Mrs Z received was about comments made about her parenting and behaviour in a strategy meeting to discuss safeguarding concerns about Miss Z. Mrs Z disagreed with the comments and was upset, but there was no further impact. Mrs Z says these comments could have resulted in Miss Z being removed from her care. Miss Z remained in Mrs Z’s care, so we consider the impact from these comments to be low.

34. We appreciate Mrs Z has been pursuing her complaint for a long time. We understand she has ongoing concerns about Miss Z’s health, which the NHS and private clinics are investigating. We appreciate our decision is not the one she hoped for.

1. The Parliamentary and Health Service Ombudsman has carefully considered Mrs Z’s complaint about Royal Berkshire NHS Foundation Trust (the Trust) and its care and treatment of her daughter, Miss Z.

2. After careful consideration, we have decided the complaint falls outside of our time limit. We have not seen good reason to put the time limit to one side.

3. We understand this is a long-standing complaint for Mrs Z and Miss Z, and that the issues she raises have caused her worry and distress for a long time. We are sorry to hear of the distress Mrs Z and Miss Z have experienced.