Lack of promised mental health support for Mrs I’s daughter following her referral in November 2020
21. Mrs I complains that following her daughter’s referral to it for mental health purposes in November 2020, no action was taken by the Trust until she had an initial assessment in July 2021. We considered how quickly Mrs I’s daughter should have been assessed for autism, following her referral based on advice we received and the available guidance.
22. CQC guidelines on waiting times for CAMHS, 2019, states no one should wait more than 18 weeks for treatment. From the available medical records, we can see Mrs I’s daughter did not receive an initial assessment until 22 July 2021 which falls outside of this timescale by a considerable amount of time.
23. We considered with our adviser whether based on relevant guidance and the records provided, the Trust could have taken any other action to provide support to Mrs I’s daughter whilst she remained on the waiting list for occupational therapy.
24. Our findings show, Mrs I’s daughter waited an exhaustive length of time for her interventions. She waited 19 weeks after referral to be offered an assessment. The initial assessment was then only offered for 22 July 2021 which is 32 weeks after the referral was made.
25. We are conscious the beginning of the COVID outbreak may account for some of the delays. The advice provided to us, however, explains this began in March 2020 and during this period Trust’s made adaptations to prioritise crisis interventions. By the time Mrs I’s daughter was referred, virtual and telephone supports had been put in place and it is therefore our decision this does not justify the delay.
26. Based on advice received, we have found there were other supports such as assessment and care planning that could have been made available. Our adviser also explained the Trust could have signposted Mrs I to other agencies such as the National Autistic Society for parenting supports.
27. Mrs I’s daughter also voiced she wished to receive support for anxiety and regulation according to her medical records. NICE clinical guideline CG170: Autism spectrum disorder in under 19s: support and management states that organisations should, “Develop a care plan with the child or young person and their families or carers that outlines the steps needed to address the factors that may provoke behaviour that challenges, including: treatment, for example, for coexisting physical, mental health and behavioural problems, support, for example, for families or carers necessary adjustments, for example, by increasing structure and minimising unpredictability”.
28. We have seen no evidence that a care plan was discussed or developed with Mrs I’s daughter and her family during the time she was waiting for occupational therapy. The available medical records show no evidence that any other supports were offered during this time. Our findings are that this is a failing on the Trust’s behalf.
29. We have found that the Trust could have provided further support to Mrs I’s daughter whilst she was awaiting occupational therapy. We have also considered the impact of this below.
Mrs I’s daughter not being provided with medication until December 2022
30. Mrs I complains her daughter was not provided with medication until December 2022.
31. The advice provided to us explained that medication can be used for sleep problems and anxiety. Antipsychotic medications can also be used to treat symptoms and behaviours attributed to autism which can be helpful.
32. Although we are aware this would have required careful consideration and assessment prior and during usage, it is our decision that medication was not considered as an option due to the delays in assessment and care planning. We have considered the impact of this below.
Mrs I’s daughter not being provided with a care co-ordinator until March 2023
33. Mrs I also complains that her daughter was not provided with a care co-ordinator until March 2023.
34. In its response letter dated 6 December 2021, the Trust stated its service continued to have substantial delays within its pathway and at this moment in time were allocating care co-ordinators to young people who were referred in March 2020. This is eight months prior to Mrs I’s daughter’s referral and highlights the delays within the Trust.
35. Whilst we appreciate the Trust acknowledged the delays in its response letter, it has not provided any reason as to why the delays were present. No explanation has been given for these delays that fall outside of timescales given by the above guidance.
36. It is therefore our findings that this is a failing on the Trust’s behalf as Mrs I’s daughter should have been assessed sooner than she was based on the available guidance. If this had been done, our view is that a care co-ordinator could have been allocated sooner. We have considered the impact of this below.
Lack of communication and organisation within the Trust
37. Mrs I has raised issues regarding the communication from the Trust after she had raised her complaint with it. She states she met with the investigating manager on numerous occasions and it seemed the complaint would be resolved.
38. Mrs I states, with the exception of her daughter being referred to an external provider for her autism assessment which resulted in a diagnosis, at the time of raising her complaint with PHSO, nothing further had developed. We are aware Mrs I’s daughter has now been allocated a care co-ordinator and in receipt of medication.
39. She says at the time of raising her complaint various things had been promised such as post diagnostic support, occupational therapy support and regular contact from CYPS to keep her informed. Mrs I explains none of this happened which led to her contacting the investigating manager again.
40. The investigating manager advised Mrs I they would maintain regular contact and update her each Monday. She states the investigating manager then went on annual leave for two weeks with no contact from any other staff members. Mrs I advises they received constant assurances from the Trust which did not happen.
41. Mrs I has provided a log detailing 14 occasions where she contacted the Trust either via telephone or email but did not receive a response from it. The Trust in its response stated fortnightly emails were sent and it could not see any documented notes to suggest it had agreed to a plan where weekly phone calls would be made to provide updates.
42. Due to a lack of evidence, we are unable to comment on what communication plan was agreed between the Trust and Mrs I. Our decision is the Trust could have been more pro-active in its responses to acknowledge Mrs I’s concerns and not cause any further dissatisfaction.
Impact
43. Mrs I’s daughter was referred to the Trusts CYPS department on 9 December 2020 by her GP as she was having increasing problems with her mood. She reported that she felt sad a lot of the time, was not motivated and struggled to concentrate. The referral from her GP advised Mrs I’s daughter was having issues at school regarding the quality of her work, completing homework and how she was getting on with her teachers.
44. The referral explained Mrs I’s daughter did not really enjoy any activities and had been for a walk with her friends, however, this did not make her happy. She was reported to be crying a lot of the time with no obvious cause and had on occasion refused to go to school because of how she was feeling.
45. Mrs I’s daughter also had exhibited extreme behaviour including meltdowns (an uncontrolled emotional outburst or a mental collapse) which also led to her physically hurting herself.
46. Mrs I explains following this referral, her daughter experienced a two-year delay without a care co-ordinator and medication. This prevented her mental health from improving during this period.
47. Mrs I says during the period of time between referral and the initial assessment, her daughter withdrew from school whilst in year 10, as she was experiencing high levels of anxiety and depression during this time.
48. Mrs I’s daughter received a diagnosis of autism in January 2022 and had not attended school since May 2021 at the time of complaint. Mrs I stated that her daughter only managed to sit three out of her planned ten GCSE’s and had to repeat this year at school.
49. She had to sit her GCSE’s a year later at college but was extremely anxious about whether she would be able to cope with this.
50. We considered with our adviser whether the absence of a care co-ordinator or medication may have contributed towards preventing Mrs I’s daughter’s mental health from getting better.
51. Based on advice we have been provided, we have found that an allocated Mental Health Practitioner or Clinician would have had an impact on the co-ordination and provision of care. By having an allocated worker, this would help to identify and liaise with other agencies such as the National Autistic Society to help provide a comprehensive care plan and also arrange supports for Mrs I’s daughter and her family.
52. Our findings show that this could have provided support to Mrs I’s daughter’s family to allow them to gain further understanding into neurodevelopmental issues such as Mrs I’s daughter’s. Our decision is this would have helped Mrs I and her family to contain and understand her daughter’s feelings more clearly.
53. We have found, if Mrs I’s daughter felt understood in school and at home, then she would be more able to thrive. The advice provided to us states reasonable adjustments in school and in the home help this process. We can see from the available medical records and communication with Mrs I that as soon as supports, such as being allocated a care coordinator, were put in place there were clear improvements in her daughter’s mental wellbeing. We have therefore found this should have been done sooner by the Trust.
54. Our adviser explained, allocated clinicians could work with a young person’s school to ensure that reasonable adjustments could have been made, to accommodate differences in young people who may or may not have received a diagnosis for neurodiversity. They said strategies can be implemented to help with various aspects of learning and relationship development in school.
55. The advice provided to us, directed us to SCOPE’s reasonable adjustments guidance (updated 2023), which states, ‘these adjustments help make sure you get the same access to education as anyone else’. Though updated after the date of the complaint, this guidance was still relevant at the time of the events complained about. It is our findings that there were other supports which could have had a positive influence on Mrs I’s daughter’s mental health whilst she awaited assessment for medication.
56. We have seen no evidence in the available medical records that other supports were offered to Mrs I’s daughter in the interim. Our decision is that this would impact negatively on Mrs I’s daughter’s emotional and mental wellbeing.
57. The Trust’s complaint response dated 9 June 2022, states it agrees if Mrs I’s daughter had been allocated a care co-ordinator and had engaged in regular talking therapy and/or pharmacological therapy (medication) it is possible her situation may have changed. At the time of this letter, however, Mrs I’s daughter still remained on its waiting list for occupational therapy.
58. It states it has experienced increased waiting times because of the pandemic. It says this does not sit comfortably and it is working extremely hard to reduce these waiting times. We have considered the Trust’s acknowledgement of this when providing our recommendations below.
59. We have found that the failings in not providing suitable care to Mrs I’s daughter in an adequate timeframe caused a delay in her mental health beginning to improve. It is our findings that the Trust could have reduced this impact at the time of the events complained about.
60. We considered whether should Mrs I’s daughter have been provided with adequate care such as a care co-ordinator or medication, whether this could have meant she felt more comfortable attending school and being able to maintain and develop friendships.
61. The Equality Act, Section 6, 2010 says ‘a pupil has a disability if he or she has a physical or mental impairment that has a long term and substantial adverse effect on his or her ability to carry out normal day-to-day activities.
62. The advice provided to us states these activities do include relationships. Our adviser explained if interventions were provided, then Mrs I’s daughter may or may not respond, however, stated from their experience the support does generally help. They explained whilst it can’t be said for certain, from their experience, it is likely there will have been a positive impact.
63. We have found that intervention could have meant Mrs I’s daughter was able to stay in school, maintained her relationships with friends and peers and also helped her to feel less abandoned.
64. With regards to the issues Mrs I experienced regarding communication from the Trust after raising her complaint, we can appreciate that this will have been frustrating for her.
65. PHSO’s Principles of Good Complaint Handling states;
‘2. Being customer focused
• Having clear and simple procedures.
• Ensuring that complainants can easily access the service dealing with complaints and informing them about advice and advocacy services where appropriate.
• Dealing with complainants promptly and sensitively, bearing in mind their individual circumstances.
• Listening to complainants to understand the complaint and the outcome they are seeking.
• Responding flexibly, including co-ordinating responses with any other bodies involved in the same complaint, where appropriate’
66. Based on the lack of clarity surrounding when Mrs I was due to be contacted with updates, and also the lack of contact she was able to have with the Trust when calling and emailing, we have found that the Trust’s complaint handling falls below the level we would expect.
67. We can appreciate that this will have led to increased distress in what was already a stressful time for both Mrs I and her daughter. As Mrs I was unable to gain answers and responses from the Trust regarding her complaint, whilst Mrs I’s daughter continued to wait for treatment, we can recognise this may have contributed to an enhancement in their lack of trust for the organisation.