4. Mrs R complains the Trust rejected two adult mental health referrals from her daughter, Miss R’s, GP on 21 April and 6 July 2020.
5. Mrs R says as a result Miss R continues to experience several seizures, headaches, and nosebleeds per day without any NHS support or treatment.
6. Mrs R is seeking an acknowledgement, and an apology, and for the Trust to improve its service.
7. In 2017 when she was 16 years old Miss R began experiencing frequent seizures. Her GP referred her to a neurologist with a sub-speciality in epilepsy at another Trust. The neurologist diagnosed Miss R with dissociative seizures. A scan, video recordings and an ECG showed some activity but not enough to diagnose her with epilepsy. She was also referred to a consultant paediatrician at the Trust.
8. In 2019 Miss R started to develop severe headaches and nosebleeds during seizures.
9. In August 2019 the Trust’s paediatric department discharged Miss R back to her GP as she was turning 18 years old. It asked her GP to refer her to adult mental health.
10. On 21 April 2020 Miss R’s GP made an adult mental health referral to the Trust. The GP referred her to the Single Point of Access Team (SPA).
11. On 22 April SPA CMHT referred Miss R to improving access to psychological therapies (IAPT). A senior mental health practitioner completed a threshold assessment grid (TAG). IAPT declined the referral due to Miss R’s dissociative episodes being outside of its remit.
12. On 29 April 2020 the Trust conducted a full mental health assessment of Miss R. It acknowledged that Miss R’s symptoms are currently impacting on her normal functioning. It referred Miss R for psychological therapies.
13. On 12 May 2020 psychological therapies rejected the referral. It suggested a referral to Isorropia, an independent wellbeing organisation.
14. On 6 July 2020 Miss R’s GP referred her back to SPA. It referred her to the psychological therapies. Psychological therapies rejected the referral and referred Miss R to Isorropia as she was already open to them.
15. On 15 September 2020 Isorropia discharged Miss R because it had not been able to get in touch with her.
16. On 7 October 2020 Miss R’s GP referred her back to neurology because her symptoms had worsened to include severe headaches and nose bleeding. Neurology rejected the referral and signposted her to seek mental health support.
17. On 26 October 2020 Miss R received a letter from her GP informing her that a referral for a second opinion at another Trust had been rejected and that they are going to try another Trust.
18. In February 2021 another Trust received a memory stick of video recordings of Miss R’s seizures. It explained that people are unconscious during dissociative seizures so would not be aware of them and may be difficult to rouse but that does not necessarily mean they are asleep.
19. On 25 February 2021 an MRI scan does not show any reason for Miss R’s headaches or seizures.
20. On 15 March 2021 Miss R’s GP referred her to the other Trust’s neurology department.
21. On 29 March 2021 the other Trust arranged video-EEG recording for Miss R, after a few hours she declined to stay and discharged herself before the investigations could be completed.
25. Mrs R complains the Trust rejected two adult mental health referrals made by her daughter, Miss R’s, GP on 21 April 2020 and 6 July 2020.
26. She says as a result Miss R continues to experience several seizures, headaches, and nosebleeds per day without any NHS support or treatment.
27. In its complaint responses the Trust said the information identified during Miss R’s assessment on 29 April 2020 was used along with any history to form a clinical judgement on an appropriate treatment pathway. It stated the assessor did not observe any evidence of serious mental illness.
28. The Trust explained within the assessment Miss R’s mental illness risks were low. This included risk of harm to self or others, and impulsive behaviours driven by mental illness. The Trust explained whilst Miss R’s symptoms were concerning, they are risks associated with a physical symptom, seizures, rather than symptoms of mental illness.
29. The Trust said it appreciated Miss R appeared to have had issues gaining access to healthcare previously and apologised she felt on this occasion, with this service, that she was not properly understood or valued. It was satisfied it was appropriate for SPA to refer her to IAPT. It said SPA maintained good communication with IAPT and promptly invited Miss R in for further assessments to avoid any delay in her treatment and acted within the guided response times.
30. The Trust said the assessor correctly identified Miss R as not having a major mental illness, however they did acknowledge her symptoms were distressing and impacting on her normal functioning, and appreciated this must be very distressing for Miss R and her mother.
31. The Trust said on 6 July 2020 Miss R’s GP made a second referral to SPA. SPA forwarded the referral to Isorropia as Miss R was already open to them. It explained Isorropia has direct links with the Community Mental Health Team (CMHT), and upon successful completion of their input, if required they can refer on to the CMHT psychological therapies. The Trust explained it offered support but Miss R chose not to engage with the support or chose not to accept it. The Trust said if Mrs R was concerned about Miss R’s mental health, she could call the specialist mental health triage service on 111, and sign posted her to a mental health website.
32. Records show on 22 April 2020 the Trust undertook a risk assessment with Mrs R on behalf of Miss R because she did not want to speak on the telephone. The assessor noted Miss R’s GP referred her because neurology recommended she would benefit from psychological therapy. The assessor noted Miss R had a history of seizures which had been fully investigated and diagnosed as dissociative in nature. The assessor planned to refer Miss R to IAPT for psychological therapy in relation to the symptom of dissociative seizures.
33. A clinical psychologist sent an email to the assessor on 27 April 2020 to say if Miss R wanted psychological intervention related to her dissociative seizures, this would be more appropriate for secondary care. The SPA assessment noted that it seemed Miss R and her mother were sceptical of the diagnosis of dissociative seizures and would not likely be motivated to engage with therapy relating to this. It said they requested psychoeducation around anxiety. Psychoeducation is a therapy intervention which teaches specific coping skills to use to manage your symptoms.
34. As the risks were very low, and there was no evidence of major mental illness or personality disorder, the Trust identified Miss R’s main health issue was anxiety. The Trust said this would not be an appropriate referral under secondary care, and if Miss R did not meet with IAPT criteria either, the assessor may wish to consider a referral to Isorropia where Miss R could attend workshops for anxiety management.
35. On 29 April 2020 records show the Trust conducted a full mental health assessment on Miss R. The assessor noted seizures can reportedly happen when she is asleep. They assessed her risks to herself and others as very low, there was no evidence of major mental illness or personality disorder, and identified her main mental health issues were related to anxiety, predominantly generalised anxiety. The assessor referred Miss R to IAPT.
36. Records show on 6 May 2020 at a psychological therapies referrals meeting psychological therapies declined Miss R’s referral for the reasons stated in the email of 27 April 2020.
37. Records show on 6 July 2020 Miss R’s GP made a second referral to SPA. SPA forwarded the referral to Isorropia as Miss R was already open to them.
38. Our adviser said Miss R probably has a complex neurodevelopmental disorder, a condition which affects how your brain functions, with diagnoses of autistic spectrum disorder (ASC), attention deficit hyperactivity disorder (ADHD), and anxiety, as well as seizures, which makes assessment more complex.
39. It appears the referrals were declined because Miss R and her mother were concerned there was another reason for the seizures which had been missed. This is an inappropriate reason to exclude someone with functional neurological disorder (FND) from receiving the service. Miss R has a complex disorder and had been referred for assessment for dissociative epilepsy.
40. Our adviser said psychological interventions would be valid, and potentially helpful to Miss R even if there is a mixed picture of actual seizures, with EEG activity and some that are dissociative.
41. The RCP’s ‘Standards for Community-Based Mental Health Services’ (2017), section three, says service users should have a comprehensive assessment including mental health, medication, psychological and psychosocial needs, and a physical health review as part of the initial assessment or as soon as possible. It also says when a complete assessment is not in place a working diagnosis and initial formulation should be created. The formulation should include the presenting problem and any other relevant factors such as influences, causes, perpetuating and protective factors.
42. The evidence we have seen so far suggests the Trust was incorrect in not assessing Miss R for secondary care psychology services and used restrictive criteria to accept her into the community services. Specifically, it used the diagnosis of anxiety disorder to summarise Miss R’s problems and did not accept that dissociative epilepsy was a relevant and important mental health diagnosis. We consider the reasons the Trust provided to decline Miss R’s GP referrals on 21 April and 6 July 2020 were inappropriate.
43. Our adviser said there is no specific guidance or standards for Miss R’s issues or how to treat them generally. Miss R’s dissociative seizures needed to be managed with a multidisciplinary approach and coordinated services.
44. Section four of the NHS Constitution says, ‘The patient will be at the heart of everything the NHS does… NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families, and their carers.’
45. Ideally there would have been joint work involving a neurology service, possibly with a specialist nurse or psychologist within the team, and for the mental health service to draw up a joint approach and treatment plan.
46. This is not always possible to achieve. However, an option would have been for the Trust to use a psychological approach within services by providing psychoeducation and cognitive behaviour therapy (CBT) to decrease anxiety and improve coping strategies, and specialist psychotherapy from a therapist used to working with FND.
47. It is unclear from the Trust’s response who it considers should provide treatment for FND as it is not the IAPT service. If the Trust did not have the skills in its service, this should be clearly stated so a referral can be made to another specialist service.
48. We consider there is a failing in that the Trust did not undertake a thorough assessment of Miss R’s needs nor did it give appropriate reasons for declining her GP’s referrals.
Impact
49. We have considered the impact Mrs R claims her daughter has suffered because of the Trust’s rejection of her GP’s referrals.
50. We acknowledge Mrs R’s concerns for her daughter’s health and wellbeing and the anxiety this would cause. We have not seen evidence to support Mrs R’s claims this rejection led Miss R to continue to experience several seizures, headaches, and nose bleeds per day without having any NHS support or treatment.
51. We have seen from the records a different NHS Trust offered to investigate Miss R’s symptoms in March 2021. Miss R discharged herself from this and did not engage with this offer of support. Miss R’s advocate has informed us she stopped engaging with the services, because of the lack of service she received. The advocate advised Miss R felt like she was going round in circles and then became so discouraged and severely anxious she was unable to manage engaging with the services.
52. We consider the Trust we are investigating should not have declined the referrals for the reasons it gave, and this would have been frustrating for Mrs R and Miss R.
53. Miss R had an opportunity for investigations at another Trust and chose not to go ahead. We note and appreciate the reasons why Miss R stated she could not continue engaging with the services. While we understand these reasons, even if the Trust had accepted the referrals, we are unable to say if the investigations or any treatment would have been successful or not. We cannot say if Miss R had received treatment, this would have stopped the seizures, headaches and nosebleeds. As such we are unable to say if her referrals being declined led directly to the claimed impact.
54. We understand our decision may be distressing for Mrs R and Miss R because this is not what they were hoping for. We acknowledge this has been a difficult time for both and it is not our intention to cause further anxiety.
55. Whilst we have found a failing, we are unable to link this directly to the claimed impact. We partly uphold this complaint. We hope we have clearly explained our decision.
1. We thank Mrs R for bringing her complaint to us about the Trust. We understand how important this complaint is to her. We are sorry to learn about the reasons for the complaint, and the events that her daughter Miss R experienced. We appreciate it would have this would have been a very difficult and worrying time for Mrs R and Miss R.
2. We have decided to partly uphold this complaint. We have found a failing when the Trust rejected Miss R’s GP’s referrals on 21 April and 6 July 2020. We consider the Trust should not have declined these referrals for the reasons it did. After careful consideration, we are unable to link Miss R’s claimed injustice to this failing.
3. As such we do not require any further action of the Trust.