Diagnosis of emotionally unstable personality disorder (EUPD)
27. Before we decide if we should conduct 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 indications that something has gone wrong.
28. Ms P has raised concerns the Trust incorrectly diagnosed her with EUPD. We are sorry to learn Ms P feels the Trust incorrectly diagnosed her. We understand the upset this would cause and also the worry she has that because of this her care and treatment was not appropriate.
29. The Trust has apologised if Ms P is unhappy with her diagnosis and says her current diagnosis is ‘recurrent depressive illness with some features of personality disorder with negative affectivity’.
30. We can see throughout this time period Ms P was either diagnosed with EUPD as she met the criteria for a full diagnosis or she was assessed as showing traits of EUPD.
31. Ms P’s medical records show on three different occasions, 5 May 2022, 29 June 2022 and 18 July 2022, the Trust assessed Ms P was showing features of EUPD during her reviews and consultations.
32. We understand Ms P also gained a second opinion in December 2023, this review states Ms P presents with emotional dysregulation. This symptom is associated with EUPD.
33. The ICD-11 describes EUPD as,
‘The central manifestations of Personality Disorder are impairments in functioning of aspects of the self (e.g., identity, self-worth, capacity for self-direction) and/or problems in interpersonal functioning (e.g., developing and maintaining close and mutually satisfying relationships, understanding others’ perspectives, managing conflict in relationships). Impairments in self-functioning and/or interpersonal functioning are manifested in maladaptive (e.g., inflexible or poorly regulated) patterns of cognition, emotional experience, emotional expression, and behaviour.’
34. Ms P was presenting with difficulties in managing strong emotions, impulsive outbursts and feeling overwhelmed, and seeking external sources to contain distress. We consider this is in line with the ICD-11 definition of EUPD.
35. The NICE BPD guidance says,
‘If a person presents in primary care who has repeatedly selfharmed or shown persistent risk-taking behaviour or marked emotional instability, consider referring them to community mental health services for assessment for borderline personality disorder.
1.3.1.2 When assessing a person with possible borderline personality disorder in community mental health services, fully assess:
• psychosocial and occupational functioning, coping strategies, strengths and vulnerabilities • comorbid mental disorders and social problems • the need for psychological treatment, social care and support, and occupational rehabilitation or development • the needs of any dependent children.’
36. Our adviser says the Trust appropriately undertook comprehensive interviews in line with the NICE BPD guidance and it gained a number of clinical opinion from different clinicians.
37. We consider the Trust appropriately assessed Ms P and diagnosed her appropriately with the features she was presenting with. We have not found any evidence to suggest the diagnosis of EUPD was incorrect at the time. There is no indications of a failing here.
38. We understand since being diagnosed with ADHD, Ms P has questioned her diagnosis of EUPD. Whilst, she may be disappointed with our findings we hope she gains some reassurance the Trust appropriately assessed her and at the time, with the features she was presenting with it was appropriate to diagnose her with EUPD.
ADHD referral
39. Ms P has raised concerns the Trust ignored her requests to be referred for an ADHD assessment and when it did, it did not provide the appropriate support for her to complete the referral.
40. Ms P has now been diagnosed with ADHD and we understand her distress that she could have had this diagnosis much sooner.
41. The Trust says following a request from Ms P to be referred for an ADHD assessment in April 2023, it gathered further information it needed before submitting its referral. The Trust also says it told Ms P that in order to make the referral she needed to complete a form. The Trust says this form was emailed to Ms P as requested however, it says it also told Ms P within the appointment letter she needed to complete this form and provided a link for her to follow and complete it.
42. The NICE ADHD guidance says,
‘1.1.2 Mental health services for children, young people and adults, and child health services, should form multidisciplinary specialist ADHD teams and/or clinics for children and young people, and separate teams and/or clinics for adults.
1.2.10 Adults presenting with symptoms of ADHD in primary care or general adult psychiatric services, who do not have a childhood diagnosis of ADHD, should be referred for assessment by a mental health specialist trained in the diagnosis and treatment of ADHD, where there is evidence of typical manifestations of ADHD (hyperactivity/impulsivity and/or inattention) that:
• began during childhood and have persisted throughout life • are not explained by other psychiatric diagnoses (although there may be other coexisting psychiatric conditions) • have resulted in or are associated with moderate or severe psychological, social and/or educational or occupational impairment.’
43. We can see within Ms P’s records she showed traits of impulsivity which in line with the NICE ADHD guidance could trigger an ADHD referral. However, our adviser says impulsivity was not Ms P’s predominant presenting feature and it did not cause significant impact to her. Therefore, it did not warrant an ADHD referral.
44. We have not seen any other indication Ms P should have been referred for an ADHD assessment any sooner than she was. Ms P did not discuss any problematic symptoms which would indicate an ADHD assessment was needed.
45. We consider there is no indication of a failing with the timing of Ms P’s ADHD referral.
46. We have considered the support the Trust provided to Ms P to help her complete her referral form. We understand the Trust does not diagnose or treat ADHD. This service is provided by an externally commissioned provider. This means for Ms P to access an ADHD assessment both herself and the Trust need to complete referral forms for her to be referred appropriately.
47. We understand this was discussed with Ms P and she asked for the link to the form to be emailed to her, which the Trust did. We also understand a link to the form was also provided with a letter sent by the Trust on 4 July 2023.
48. Our adviser says there is no guidance on what support should be offered by Trust’s in this situation but added the Trust explained the process and provided Ms P with a link to complete the form, which is what was requested by Ms P.
49. The GMC GMP guidance say, ‘You must give patients the information they want or need in a way they can understand.’
50. We consider the Trust has acted appropriately by explaining the referral process and providing the link to Ms P. This is in line with guidance. We do not consider the Trust should have done anything more and we do not consider there is any indication of a failing here.
Neurodiversity
51. Ms P says the Trust did not consider her anxiety and depressive symptoms could have been due to her neurodiversity. We recognise Ms P’s feelings that the Trust had not fully understood or assessed her symptoms.
52. The Trust says it diagnosed Ms P with ‘recurrent depressive illness with some features of personality disorder with negative affectivity.’ It also says Ms P has been diagnosed with depressive illness since August 2023.
53. As previously explained, we consider the Trust made an appropriate diagnosis based on Ms P’s symptoms and in line with the EUPD description within the ICD-11 guidance. We have seen no evidence to suggest the diagnosis of her symptoms was incorrect due to her more recent ADHD diagnosis. While we understand her diagnosis of ADHD would lead Ms P to question her treatment and other diagnoses, we have not seen any indication of a failing here.
Medication
54. Ms P has raised concerns when she received her private diagnosis of ADHD, she needed medication to help treat her ADHD. However, she could not access this medication due to her low mood. When she asked the Trust to help treat her low mood, it did not which left her without treatment for her ADHD. We understand this was a difficult situation for Ms P.
55. The Trust says any medication needs to be prescribed by an ADHD medic, which is only available via the Leeds Adult ADHD Service. Ms P has been added to its waiting list.
56. We understand the Trust decided not to prescribe Ms P with lithium following a review on 12 January 2024. The Trust says in her records, she does not suffer from a mood disorder which meets the threshold for prescribing lithium. The records also say the risks associated with lithium would outweigh the benefit and Ms P’s emotional regulation difficulties are due to her ADHD.
57. The NICE bipolar guidance says, lithium is mainly used for people suffering with bipolar disorder. Lithium has many adverse effects which need to be carefully considered before it is prescribed.
58. We have not seen any evidence Ms P had symptoms of bipolar disorder and we do not consider there is any indication of failing with the Trust’s decision to not prescribe lithium for her low mood.
We hope our decision helps Ms P understand why the Trust did not prescribe this to her and this can offer her some reassurance.
Face to face consultations
59. Ms P has raised concerns she did not receive any face to face consultations with the Trust. We understand how being seen face to face can help a patient’s experience in feeling listened to.
60. The Trust says it is not possible for all patients to see a consultant in a face to face capacity. There is no guidance on what would be an appropriate amount of times a patient is seen face to face.
61. The GMC GMP guidance says, ‘You must provide safe and effective clinical care whether face to face, or through remote consultations via telephone, video link, or other online services. If you can’t provide safe care through the mode of consultation you’re using, you should offer an alternative if available, or signpost to other services.’
62. The GMC remote consultations guidance also provides guidance on when a face to face consultation may be preferable, which include: ‘you are not the patients usual doctor, you need to examine the patient, the patient has complex clinical needs, you cannot access the patient’s medical records, you are unsure of the patients capacity and you cannot determine the patients has all the information they want or need.’
63. We consider Ms P did not meet the criteria for needing a face to face consultation. Therefore, as the Trust has explained due to demand it cannot always offer face to face appointments, we do not consider there is any indication of a failing here.
64. We hope this helps to explain to Ms P when face to face consultations are deemed to be needed and that unfortunately, due to how busy the NHS is not all patients can be seen in a face to face setting.
Care plans
65. Ms P has raised concerns the Trust did not provide her with a care plan.
66. The Trust says, ‘On reviewing your records, the care plans dated September 2021 and October 2022 were deemed insufficient.’
67. Ms P’s records show the Trust created a care plan for Ms P on 2 July 2024 and a safety plan in July 2023, which it shared with Ms P on 22 December 2023.
68. The NCCMH guidance says, ‘Care plans are collaboratively developed with the person and their families or carers (if appropriate), as well as any other professionals or support people they want involved, to ensure it is tailored to meet their needs. There is an agreed date to review the care plan, including information on who is involved and how these reviews are carried out.’ To complete a care plan appropriately it needs the patient’s input and openness to care and treatment.
69. The Trust has agreed it did not include Ms P in the process when it was creating the care plans. We consider this is an indication of a failing. We will consider the impact this had on Ms P.
70. Ms P says because of the Trust’s failing with her care plans she did not receive the appropriate treatment.
71. Our adviser says even though a formalised care plan format is helpful it does not mean Ms P was not having planned care. In Ms P’s records there are letters reflecting consultations, plans, discussions with Ms P. We recognise Ms P’s medical records show she did not always agree with the Trust’s suggested plans and there is reference to difficulties in reaching an agreement. We consider the Trust acted appropriately in caring and treating for Ms P.
72. While we have seen an indication of a failing in the Trust not completing Ms P’s care plans in line with the its policy, we have seen no evidence it had an impact on her treatment.
73. As we cannot link Ms P’s claimed impact to the indication of failing, we will not consider this further.
Risk assessment
74. Ms P has raised concerns the Trust did not complete risk assessments due to her low mood.
75. The Trust says it completed risk assessments in 2020, 2023 and 2024 and a safety plan in July 2023. The Trust says it did not share the safety plan with Ms P until January 2024.
76. Ms P’s medical records confirm risk assessments were completed on 13 July 2023, 23 July 2023 and 25 January 2024. Records also show it completed a safety plan in July 2023. We understand this safety plan was shared with Ms P on 23 December 2023.
77. The DoH guidance says, ‘Risk assessment only has a purpose if it enables the care team and the service user to develop a plan of action in specific areas to manage the risks identified. This plan should be developed with the service user and their carer, and should be regularly reviewed.’
78. The scope of our consideration is from May 2022 and therefore we are not looking at whether a risk assessment was completed when Ms P was first referred to the Trust. Our adviser says after an initial risk assessment a new one should be completed when there is significant change, such as a crisis resulting in referral to more intensive care.
79. We consider there is no indication of a failing here as a risk assessment does not need to be completed every time Ms P discloses she has a low mood as this is a symptom the Trust are aware of and is not a significant change to her condition.
Mood stabilisers
80. Ms P has raised concerns the Trust did not prescribe her with mood stabilisers.
81. The Trust says mood stabilisers are prescribed by a psychiatrist and are only prescribed if it is clinically indicated at the time.
82. Ms P was prescribed with antipsychotic medication, aripiprazole which is a mood stabiliser. We have already considered the Trust was correct in its decision to not prescribe lithium.
83. On 28 November 2022, Ms P was reviewed by the Trust and it discussed that medication may not be helping her and was possibly making some symptoms worse. Ms P said she wanted to continue with the medication. Again in July 2023, Ms P was reviewed by a nurse who documented Ms P was of the opinion she needed medication. On 8 February 2024, the Trust again reviewed Ms P and made a plan for less emphasis on medication and more on psychosocial interventions.
84. The NICE BPD guidance says medication is used as a guide to treat patients with emotional dysregulation and there is no recommendation for long term medication but medication can be used during crises.
85. This means there was no need for mood stabilisers to be prescribed to Ms P she had no diagnosis of bipolar disorder. Our adviser says emotional dysregulation is not usually helped by medication. This supports the Trust’s view as seen in Ms P’s medical records. We know Ms P was keen to have medication to help with her. Our adviser says it is likely the Trust prescribed this medication due to her insistence this would be helpful to her.
86. We do not consider Ms P was diagnosed with a condition which would benefit from medication. Though the Trust prescribed her with aripiprazole intermittently this was due to Ms P wanting the medication rather than the medication being deemed helpful with her symptoms. We consider there is no indication of a failing here.
Autism
87. Ms P has raised concerns the Trust suspected she had autism but did not signpost her for an assessment or offer any support with this.
88. We understand how worrying and frustrating it would have been for Ms P to believe the Trust were not providing her with the care she needed.
89. The Trust has apologised if Ms P feels more should have been done with regards to this.
90. Ms P’s medical records show two instances when autism was mentioned. The first stated ‘possible autism’ and the second was during a multi-disciplinary team meeting on 9 January 2024 which says, ‘Also see traits of autism…. Resents us considering autism’.
91. Our adviser says suspecting autism does not automatically mean an autism diagnosis referral should be made.
92. The NICE autism guidance says,
‘Consider assessment for possible autism when a person has:
• one or more of the following: • persistent difficulties in social interaction • persistent difficulties in social communication • stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests, and • one or more of the following: • problems in obtaining or sustaining employment or education • difficulties in initiating or sustaining social relationships • previous or current contact with mental health or learning disability services • a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or mental disorder.’
93. We have not seen any notes to suggest an autism referral was required based on the NICE autism guidance. Our adviser says the Trust had two second opinions on Ms P’s case and neither of these considered the possibility of autism was strong enough to warrant further investigation.
94. Overall, we consider whilst autism was mentioned during this time period, it did not warrant a concern strong enough for further referrals for investigation. We therefore consider there is no indication of a failing here. We hope our consideration helps Ms P understand the Trust’s decision.
Support services referral
95. Ms P says the Trust has noted within her records sexual assault and a head injury but did not refer her to support services.
96. We are sorry to learn Ms P believes the information within her medical records is incorrect meaning she did not receive the appropriate care she needed.
97. Within the Trust’s response it has directed Ms P to guidance about changing factual inaccuracies within medical records.
98. Ms P’s medical records show she accessed psychotherapy for prolonged period of times and was also offered care co-ordination. In October 2022, the Trust offered Ms P family therapy however, this did not appear to progress after Ms P discussed it with her husband. When Ms P was in crisis she rejected psychosocial interventions, which would include signposting to third sector supports.
99. Our adviser says it is clear from the notes the Trust was taking a biopsychosocial approach, which is an understanding of the background and context in which the patient presents.
100. The NICE depression and anxiety guidance says this includes understanding,
• ‘Personal strengths and resources, including supportive relationships • Difficulties with previous and current interpersonal relationships.
• Current lifestyle (for example, diet, physical activity, sKp).
• Any recent or past experience of stressful or traumatic life events, such as redundancy, divorce, bereavement, trauma.’
101. Our adviser says the psychotherapy and care co-ordination are all appropriate support mechanisms for significant psychosocial stressors which might impact Ms P’s mood and coping.
102. We therefore consider there is no indication of a failing here as the Trust was providing the appropriate care and support for Ms P to help with her symptoms and struggles.
Staff behaviour
103. Ms P has raised concerns the staff of the Trust were cold, patronising and unprofessional when communicating with her. We acknowledge this could have added stress to an already stressful time for Ms P.
104. The Trust says it has not been able to categorically determine the attitudes of staff and it cannot look into this any further as no staff names or times have been provided. It says it expects all staff to communicate to patients in a caring and supportive manner.
105. When we make a finding on a complaint we have to make sure we are fair and impartial to both the complainant and the organisation being complained about. This means to make a finding we need to see evidence of what happened.
106. We have considered Ms P’s account of what happened during her interactions with the Trust, but we recognise we were not there during these events and have no access to independent witnesses. We are unlikely to ever be able to make a decision about the way in which a member of staff spoke to a patient. This does not mean we do not believe Ms P’s account of these interactions.
107. We are unable to make a decision on this element of Ms P’s complaint.
108. We thank Ms P for bringing her complaint to us and wish her well for the future.