Concerns not addressed in 2019
25. Miss L said it took a member of staff from Mindworks, an emotional wellbeing and mental health service for young people, to notice her daughter had autism. Miss L says she took the same notes, as she did in 2019, to Miss E’s recent appointment and it was found her daughter needed screening for autism.
26. She says her daughter is still on a waiting list for individual systemic intervention which would not be the case if her case had been dealt with correctly in 2019.
27. The Trust says the first clinician did follow up on this concern by contacting Miss E’s school for feedback, who suggested anxiety as being the main issue, made worse by dyslexia. The Trust explains help for anxiety was offered as a first line of treatment.
28. GMC guidance says,
’doctors must:
• adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient • promptly provide or arrange suitable advice, investigations, or treatment where necessary • refer a patient to another practitioner when this serves the patient’s needs.’
29. Our adviser says Miss E’s care and treatment in 2019 was in line with the GMC guidance as the Trust assessed and treated her condition.
30. Records show Miss E was originally referred to CAMHS for management of poor sleep due to increased anxiety after moving to secondary school.
31. After CAMHS accepted the referral on 22 February 2019, Miss L made a call to the service on 4 March because she was concerned about her daughter. The notes state ‘[Miss E] very anxious, not sleeping well at present. Tiredness not helping her anxiety and mum struggling to get her into school… she asked when [Miss E] would be seen by our service; advised likely to be another 2-3 month wait for consultation appointment’.
32. The Trust also noted it would need to speak to the team manager to see if the service could prioritise the appointment. We can see an email was sent passing on Miss L’s concerns. On 4 March an appointment with the psychologist for 1 April was sent to the family.
33. This shows the Trust managed Miss L’s concerns in a timely way and in line with GMC guidance.
34. During the face-to-face appointment on 1 April, the main concerns were noted as ‘anxiety (particularly at night-time) leading to difficult sleeping. Needs reassurance/comfort from parents who often sleep with [Miss E] to calm her down… Mum wanted sleep medication; advised that this would not be a recommended first-line treatment. Rather we would recommend a talking therapy such as [cognitive behaviour therapy] CBT’.
35. Records show Miss E was offered GSH sessions modelled around CBT. NHS England describes CBT as a ‘talking therapy that can help your child manage their anxiety by changing the way they think and behave’.
36. The NICE guidance on social anxiety disorder says, ‘offer individual or group CBT focused on social anxiety to children and young people with social anxiety disorder. Consider involving parents or carers to ensure the effective delivery of the intervention, particularly in young children’.
37. NICE recommends CBT as a first line of intervention for anxiety.
38. Miss E’s records show some improvement as she was able to use positive self-talk and distraction when faced with crowds and relaxation to help her sleep. For example, on 6 September during a session of GSH adolescent anxiety, the clinician rated this ten out of ten as Miss E did not go to her mum and dad and ‘praised [Miss E] for this achievement, which has been entirely self-managed and carried out without a step plan’. In terms of sleep, Miss E rated this achievement as seven to eight out of ten as ‘she tried to forget about the need for sleep, and has been using breathing and muscle tense/relax techniques to help her relax’.
39. On 26 September, the eighth session of GSH adolescent anxiety, noted her scores are down to 45 (for anxiety) and 55 (for anxiety and depression) from 60 and 73. This showed there was improvement for Miss E.
40. While we recognise Miss L’s concerns, we have seen the Trust managed Miss E’s care and treatment in line with GMC and NICE guidance.
ASD screening
41. Miss L complains her concerns about Miss E having ASD were not followed up by ASD screening. She raised this once during the first consultation with the psychologist and once again during the GSH for anxiety treatment.
42. We considered whether the Trust should have completed an ASD screening questionnaire at any point during 2019.
43. Records show there are queries about a diagnosis of ASD in the clinical psychologist’s first letter to the family dated 26 April 2019. It states, ‘you were concerned that she may be autistic’. The letter also states ‘[Miss E] met all of her developmental milestones on time. There were no concerns with regards to her social, emotional, or cognitive development’.
44. In the psychologist’s opinion, there were no impairments in Miss E’s social or emotional presentation or developmental history to show there may be any underlying ASD. Miss E did not meet the criteria for ASD screening.
45. While there is no evidence of ASD screening in 2019, our adviser says this may have been the clinical psychologist’s opinion after she met Miss E. Our adviser also says given the psychologist’s opinion of Miss E’s problems, screening was not necessary at that point, especially as a diagnosis of ASD was ruled out.
46. NICE guidelines on autism in children say, ‘there is considerable overlap in diagnostic features with other neurodevelopmental mental health, and communication disorders’. It goes on to list several conditions that may have similar clinical features to autism, and one of them includes ‘anxiety disorder’.
47. Our adviser says suspecting ASD in high functioning females is quite difficult and it sometimes needs a long period of working closely with patients.
48. This is supported by a research study by Durham University that says, ‘Autism is still underdiagnosed in girls and women. That can compound the challenges they face’. It says ‘girls who don’t get diagnosed tend not to have readily observable co-occurring difficulties, such as hyperactivity. But many girls and women receive other (sometimes incorrect) diagnoses instead of, or before, an autism diagnosis’.
49. We understand there is an overlap between ASD and other disorders which makes it difficult to make a diagnosis. We can see Miss L raised this concern twice during her interactions with CAMHS.
50. While we understand Miss E was later diagnosed with ASD, we cannot say she should have been given the opportunity of screening before 2019 because the main symptoms were anxiety and sleeping problems.
51. We note the Trust has apologised for the delay in diagnosis and the team has had more training in autism screening and referral writing. This is positive action to take.
Waiting list
52. Miss L says in 2022 ASD screening was done and her daughter was referred to CAMHS. At this time, she was told there was a 15-month waiting list. She was unhappy with this. She says after Miss E’s diagnosis, they were put back on a waiting list for individual systemic intervention. She thinks if her daughter was seen in 2019, they would not be back on the waiting list.
53. The Trust explains that although Miss E was seen and assessed relatively quickly in response to both referrals, if she had been referred for full assessment in 2019 it would have been quicker because the wait times were different then.
54. We considered whether CAMHS should have done things differently.
55. Our adviser explained there are currently huge demands on CAMHS which seem to have got worse since the COVID-19 pandemic. This has led to long wait times for young people which is not ideal.
56. This is reflected in research by The House. It explains, ‘some desperate young people [are] waiting up to four years for help’. The research found, ‘average community CAMHS waiting lists in February have rocketed by two-thirds in two years in England, meaning children are waiting on average 21 weeks for a first appointment’.
57. As the referral in 2019 was to treat Miss E’s anxiety and poor sleep our adviser says it is reasonable to assume the next referral would have been classed as a new referral. This meant she would go on the waiting list. There are no specific guidelines around managing waiting lists, it is done on a case-by-case basis.
58. We recognise that according to research by The House, the waiting times are long and this is also noted by several mental health organisations. For example, Mind says, ‘As CAMHS support so many young people, the waiting lists are often really long. Lots of people have to wait a long time for first appointments, plus any following treatment and support’.
59. NHS Digital’s latest publication on mental health statistics identifies 414,550 people were in contact with CAMHS at the end of August 2023. This reflects the current position on waiting times for appointments.
60. We recognise this has not been an ideal situation for both Miss L and Miss E. If Miss E’s ASD was diagnosed in 2019, there is no doubt she would have been referred for a full assessment and would have had the support she needed sooner because of the shorter wait times. But, we have not seen that the Trust did anything wrong when putting Miss E on the waiting list when it did.
61. We hope our consideration of Miss L’s complaint gives her reassurance that we have looked at her complaint in detail. We recognise they have gone through a difficult time and we hope this consideration brings closure to Miss L’s concerns.