Summary: We found no fault by a Council and Trust in terms of their decision to change Miss Y’s support arrangements. However, we did find fault with how they communicated those changes to Miss Y and her mother, Mrs X. The Council and Trust will apologise for this and make changes to prevent similar problems occurring in future. They will also make a symbolic payment to Miss Y and Mrs X to recognise the distress this caused them.

The complaint

1. The complainant, who I will call Mrs X, is complaining about the care and support provided to her daughter, Miss Y, by Dorset Council (the Council), Dorset ICB (the ICB) and Dorset Healthcare University NHS Foundation Trust (the Trust).
2. Mrs X complains that the organisations supporting Miss Y introduced a new protocol for care staff on how to manage her behaviour and that they did so without warning or consultation. In addition, Mrs X says these organisations failed to adequately review her daughter’s diagnosis, care needs and mental capacity in the community.
3. Mrs X says Miss Y found the changes to her care very distressing and that this placed her at increased risk.
4. Mrs X would like an urgent review of Miss Y’s care needs. She would also like a new care protocol to be drawn up in consultation with Miss Y and her family. Mrs X would like an urgent review of Miss Y’s mental capacity.

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The Ombudsmen’s role and powers

5. We investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, we consider whether it has caused injustice or hardship (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1), as amended).
6. If it has, they may suggest a remedy. Our recommendations might include asking the organisation to apologise or to pay a financial remedy, for example, for inconvenience or worry caused.  We might also recommend the organisation takes action to stop the same mistakes happening again.
7. If we are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, we can complete our investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)

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How I considered this complaint

8. In making my final decision, I considered information provided by Mrs X and discussed the complaint with her. I also considered relevant documentation from the Council and Trust, including the care records. In addition, I took account of relevant legislation and guidance. I invited comments on my draft decision statement from all parties and considered the responses I receive.

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What I found

Relevant legislation and guidance

Autistic spectrum conditions

9. Autism is a neurodevelopmental condition which affects the way a person communicates with others and perceives and makes sense of the world. People with autism can experience difficulty with social interaction, social communication and rigid and repetitive ways of thinking and behaving. They may also have other difficulties such as sensory sensitivity and anxiety.
10. The National Institute for Health and Care Excellence (NICE) produces guidance entitled ‘Autism spectrum disorder in adults: diagnosis and management [CG142]’. This guideline says all staff working with people with autism should have an understanding of autism. Those treating people with autism for mental disorders should understand how the core symptoms of autism might affect the treatment of the mental disorder.

Self-harm

11. NICE produces clinical guidelines for the management of self-harming behaviours. This is entitled ‘Self-harm: assessment, management and preventing recurrence [NG225]’.
12. Section 1.4 of the guidelines stresses the importance of involving carers and family members in supporting a person who self-harms. This is to encourage a collaborative approach to supporting the person. However, the guidelines make clear that professionals should be satisfied the person has consented to information to be shared with carers and family.

Emotionally Unstable Personality Disorder

13. NICE also produces guidance for the recognition and management of Emotionally Unstable Personality Disorder (EUPD - also sometimes known as Borderline Personality Disorder). This is entitled ‘Borderline personality disorder: recognition and management [CG78]’.
14. The NICE guidelines describe the disorder as follows: ‘[b]orderline personality disorder is characterised by significant instability of interpersonal relationships, self-image and mood, and impulsive behaviour. There is a pattern of sometimes rapid fluctuation from periods of confidence to despair, with fear of abandonment and rejection, and a strong tendency towards suicidal thinking and self-harm. Transient psychotic symptoms, including brief delusions and hallucinations, may also be present.’
15. Dialectical Behavioural Therapy (DBT – a talking therapy specially adapted for people who have trouble regulating their emotions) is a recognised therapeutic treatment for EUPD.

Mental Capacity Act 2005

16. The Mental Capacity Act 2005 (the MCA) applies to people who may lack mental capacity to make certain decisions. Section 42 of the MCA provides for a Code of Practice (the Code) which sets out steps organisations should take when considering whether someone lacks mental capacity.
17. Both the MCA and the Code start by presuming individuals have capacity unless there is proof to the contrary. The Code says all practicable steps should be taken to support individuals to make their own decisions before concluding someone lacks capacity. The Code says people who make unwise decisions should not automatically be treated as not being able to make decisions. Someone can have capacity and still make unwise decisions.
18. Section 2.11 of the Code says there may be cause for concern if somebody repeatedly makes unwise decisions exposing them to significant risk of harm or exploitation. The Code says this may not necessarily mean the person lacks capacity, but further investigation may be required.

Background

19. Miss Y is a young woman with complex care needs. She lives in supported accommodation with 24-hour support from a care provider.
20. Miss Y has a diagnosis of Autism Spectrum Disorder (ASD). She has received various mental health diagnoses over time. Miss Y currently has a diagnosis of EUPD, which she disputes.
21. As a result of a previous detention under the Mental Health Act 1983, Miss Y is entitled to free aftercare services under section 117 of that Act. The statutory duty for providing or arranging those services rests with the Council and ICB. However, they commission the Trust to provide Miss Y’s day-to-day care.
22. Miss Y is under the care of her local Community Mental Health Team (CMHT) and receives extra support from the Council’s adult social care service. The Trust manages Miss Y’s care under the Care Programme Approach (CPA). This is a system used for planning and managing the care of people with complex mental health needs.
23. Miss Y has an extensive history of self-harm and suicidal ideation.
24. In December 2022, the CMHT met with Mrs X and her husband. The meeting heard the care team had continuing concerns about the risks posed to Miss Y and her carers by her behaviour. The meeting discussed whether the multidisciplinary team could provide Miss Y’s care differently to better meet her needs.
25. The following day, a social worker visited Miss Y to discuss her care. The social worker suggested an alternative approach whereby care workers would not directly intervene when Miss Y was threatening to harm herself. Miss Y was noted to be unhappy with this proposal.
26. In February 2023, Miss Y’s care coordinator visited her at home to complete a CPA review. They discussed the impact of Miss Y’s self-harming behaviour. This included discussion around the risk these behaviours posed to Miss Y. The care coordinator also pointed out that such behaviours placed pressure on local emergency services and the professionals supporting Miss Y. The care coordinator explained that continued self-harming behaviours may also put Miss Y’s supported living placement at risk.
27. In March, Miss Y’s care coordinator met with the support workers at her accommodation to discuss a change to her self-harm protocols. Under the revised protocols, care staff would no longer restrain Miss Y when she tried to self-harm.
28. The care coordinator visited Miss Y on 20 March to share the revised protocols with her. The care records suggest Miss Y read and understood the proposed changes. However, Miss Y was noted to be angry and upset about the changes.
29. The following day, Mrs X contacted Miss Y’s care coordinator. She expressed unhappiness about the change to the protocols and the fact this had not been discussed with Miss Y or her family in advance.
30. Mrs X spoke to Trust staff several times over the subsequent days. She raised concerns that Miss Y lacked capacity to make decisions about her self-harm behaviours.
31. On 30 March, in consultation with Miss Y, the care coordinator amended the protocol. This was to provide Miss Y with further options when she felt at risk in the community.
32. On 27 May, Miss Y was detained under section 136 of the Mental Health Act 1983. This section of the Act gives police the power to detain a person without a warrant and transport them to a place of safety for an assessment. A Mental Health Act Assessment subsequently found Miss Y’s behaviour and presentation were consistent with her EUPD diagnosis.
33. A complex case panel discussed Miss Y’s care at a meeting on 5 June. This meeting was attended by representatives from the Trust, Council and Miss Y’s care provider. The meeting heard that Miss Y had capacity to understand the risks posed to her by her self-harming behaviours. The panel agreed the revised protocols represented an appropriate approach to Miss Y’s care.
34. In September, Mrs X raised further concerns with Miss Y’s care coordinator. She said Miss Y was experiencing psychotic episodes and needed to be confined to her property and treated by mental health professionals as if she were an inpatient. Mrs X again said she felt Miss Y lacked capacity.
35. In February 2024, an independent consultant psychiatrist completed a further capacity assessment. The Council and Trust received the report in June 2024 and will be sharing this with Miss Y and Mrs X.

My analysis and findings

Change to protocols

36. Mrs X said the Trust and Council made changes to Miss Y’s self-harm protocols abruptly and without warning. Mrs X said this amounted to a withdrawal of care and placed Miss Y at greater risk. Mrs X said the revised protocols were based solely on the EUPD diagnosis and did not consider Miss Y’s other diagnoses, such as ASD. Despite this, Mrs X said they refused to review the new approach and did not offer Miss Y regular mental health checks.
37. The care records show Miss Y has complex care needs and a history of repeated self-harm incidents. This meant the professionals supporting Miss Y regularly needed to restrain her to prevent her from harming herself. Miss Y has also assaulted care staff on occasion when they attempted to restrain her.
38. In December 2022, the CMHT met with Mrs X to discuss the current risks and whether support could be provided in a different way. The meeting heard that restraining Miss Y was not working to reduce incidents of self-harm and was placing care workers at risk. The meeting heard that professionals were proposing not to intervene directly if Miss Y threatened to harm herself but rather would remain available to support her via telephone contact or at home. If Miss Y was unresponsive to this, support staff would call emergency services. Those present also heard that Miss Y was engaging well in her DBT sessions and that it was hoped this would help her regulate her emotions and behaviours.
39. The notes of the meeting indicate that Mrs X recognised the need for a change in the way support was delivered. However, she did not agree with the proposed approach as this was linked to Miss Y’s EUPD diagnosis, with which she disagreed.
40. A social worker visited Miss Y at home the following day. She explained the new approach. The social worker noted that Miss Y was tearful and made clear that she did not agree with this change.
41. The social worker visited again later that week. Miss Y remained unhappy with the idea of changing the protocol.
42. In February 2023, Miss Y’s care coordinator visited her to conduct a CPA review. They discussed the risk posed to Miss Y and people around her by her self-harming behaviours. However, the care coordinator noted Miss Y was “hostile and defensive” and seemed not to understand why her behaviour would concern care staff.
43. Over the coming weeks. Miss Y’s care coordinators continued to visit her at home. Miss Y also attended regular DBT sessions with a specially trained member of the team, which she generally appears to have engaged well with.
44. In March, the CMHT discussed the case and agreed Miss Y’s care coordinator would visit her to share a copy of the revised protocols.
45. The care coordinator visited Miss Y shortly after this. The care coordinator explained that the professionals working with Miss Y had agreed to change their approach to supporting her. The care coordinator provided Miss Y with a copy of the revised protocols and offered to talk through them and answer any questions. The care coordinator noted that Miss Y read and understood the protocols. However, it was a difficult visit and the care coordinator noted Miss Y was angry and abusive. The care records show Miss Y subsequently harmed herself later that day.
46. The professionals supporting Miss Y discussed the revised protocols at a complex case panel on 5 June 2023. The panel acknowledged that Miss Y’s self-harming behaviours placed her at significant risk. It also discussed the associated risks posed to care staff and members of the public by these behaviours. The panel heard that, since the introduction of the revised protocols, the number of incidents of self-harm had reduced. The panel concluded that inpatient care would not be beneficial for Miss Y as her ASD diagnosis would make it difficult for her to cope with a busy inpatient environment. The panel decided that continued use of the revised protocols, along with ongoing DBT was the most appropriate approach to managing Miss Y’s behaviours.
47. In their response to my enquiries, the Council and Trust said Miss Y is an adult who has capacity to understand the consequences of her actions. They said that, as a result, there was no legal basis on which staff could restrain her. The Council and Trust added that they must also consider the risks posed to care staff.
48. The Council and Trust said the introduction of the revised protocols had been helpful for Miss Y. They detailed the number of incidents of self-harm for the period before the introduction of the new protocols (January to March 2023). The Council and Trust produced the same data for the period following their introduction (April to July 2023). This showed a significant reduction in both the number of incidents of self-harm by Miss Y and the number of hospital admissions.
49. The Mental Health Act 1983 does allow for restraint to be used in some circumstances. However, the accompanying Code of Practice makes clear that this should only be done as a last resort and when other interventions have failed.
50. Section 21 of the Code of Practice deals specifically with people with personality disorder diagnoses. Section 21.10 says that “treatment approaches for personality disorder need to be relatively intense and long-term, structured and coherent. Sustainable long-term change is more likely to be achieved with the voluntary engagement of the patient.”
51. The care records show the Council and Trust were working towards a long-term treatment plan for Miss Y. The records show the professionals involved gave extensive consideration as to the best way to achieve this. This led to the decision to build on Miss Y’s DBT sessions and support her, as a capacitated adult, to regulate her emotions and behaviour. This was ultimately a matter of professional judgment for the clinicians and social care workers involved. However, the evidence suggests this approach was effective, albeit I recognise it was initially difficult for Miss Y to adjust.
52. Taking everything into account, I found no fault by the Council and Trust with regards to the way in which they decided to change their approach to supporting Miss Y.
53. I have commented separately below on how these changes were communicated to Miss Y and Mrs X.

Communication

54. Mrs X said the Trust and Council failed to consult with Miss Y or her family before changing the protocols. Mrs X said Miss Y’s ASD diagnosis made this particularly hard for her to deal with. Mrs X said the Council and Trust failed to make reasonable adjustments for Miss Y.
55. As above, Miss Y’s care coordinator visited her on 20 March 2023 to share the revised protocols.
56. Mrs X contacted the Trust the following day. She expressed dissatisfaction that Miss Y’s care coordinator had not discussed the changes with Miss Y or her family in advance. Mrs X said Miss Y’s ASD diagnosis meant she needed time to process significant changes in her care. The care coordinator noted that “in hindsight, due to ASD, would alter approach, prepare [Miss Y] for change and give her notice to ingest the potential for change.” Mrs X subsequently also put her concerns in writing.
57. Miss Y’s care provider responded on 22 March, noting that “in terms of delivery we agree that more planning and thought could have gone into this.” The care provider also acknowledged that the timing of the visit (towards the end of the day) had been inappropriate as Miss Y did not have a chance to fully discuss her concerns. Mrs X continued to raise concerns over the subsequent days, explaining her view that the revised protocols placed Miss Y at greater risk.
58. Miss Y’s ASD diagnosis means it can take her longer to process information and ask or answer questions about her care. Therefore, it was not appropriate for staff to present Miss Y with the revised protocols without warning. This did not give her the time she needed to talk through and understand the changes. This was fault by the Council and Trust.
59. The case records show this caused Miss Y significant distress.
60. In their response to my enquiries, the Council and Trust acknowledged that it would have been helpful for care staff to notify Miss Y about the potential changes in advance of the meeting and that this had been identified as a learning point. I have addressed this further in the ‘recommendations’ section of this decision statement.
61. The Council and Trust told me they did not initially share the protocol with Mrs X as Miss Y had not given consent for this. This meant Mrs X did not find out about the change until the day the care coordinator visited Miss Y.
62. The Council and Trust have provided me with some evidence showing that, in early 2023, Miss Y sometimes withheld consent to share information with her family. However, I have seen no evidence that Miss Y specifically withheld consent to share the revised protocol with Mrs X. The available evidence does not support the Council and Trust’s comments on this point, therefore.
63. It is possible Miss Y did withhold consent and that staff simply failed to record it. Alternatively, the Council and Trust may be mistaken. The NICE guidelines make clear the importance of professionals satisfying themselves that a person has consented to information being shared with their family or carers. Professionals should clearly record any such decisions. The failure to do so in this case represents fault by the Council and Trust.
64. This has resulted in uncertainty for Mrs X as we cannot now say whether Miss Y withheld consent for information to be shared with her.

Capacity assessments

65. Mrs X challenged the view of professionals that Miss Y had capacity to decide to harm herself repeatedly. She said Miss Y was experiencing episodes of psychosis and catatonia. Mrs X said the Trust and Council should have completed a further capacity assessment considering Miss Y’s behaviours.
66. The Mental Capacity Act Code of Practice sets out five statutory principles to which organisations and individuals must have regard when considering whether a person has capacity to make a specific decision. Foremost of these is the assumption of capacity. This means that a person should be assumed to have capacity unless it is established that they do not.
67. Another principle makes clear that a person should not be treated as unable to make a decision merely because they make an unwise decision. The Code recognises that there may be cause for concern if a person “repeatedly makes unwise decisions that put them at significant risk or harm”. The Code emphasises that this does not necessarily mean the person lacks capacity, but that further investigation may be necessary.
68. Miss Y receives support from various health and social care professionals, including social workers, community psychiatric nurses and a clinical psychologist. I found no evidence in the care records to suggest that these professionals had any concerns about Miss Y’s capacity to decide to self-harm. Rather, the records suggest care staff were confident Miss Y understood the implications of her actions and the risk posed to her by her decision to self-harm.
69. A social worker completed a detailed capacity assessment on 20 March 2023. The assessment found that Miss Y could understand, retain and weigh up information about her care. The assessor concluded Miss Y had capacity to make decisions about her care.
70. The decision to treat Miss Y as having capacity was in keeping with the statutory principles set out in the Code. I find no fault by the Council or Trust on this point.
71. Nevertheless, this is an understandably upsetting situation for Mrs X. The Council therefore arranged for an independent consultant psychiatrist to complete a capacity assessment for Miss Y in February 2024. The Trust received the report from this assessment in June 2024. I understand the Trust will share information about the assessment with Mrs X and Miss Y in due course.
72. I understand Mrs X has also requested a further capacity assessment be completed by a clinician specialising in autism. Having now received the report from the consultant psychiatrist, the Council and Trust will now need to consider this and decide whether a further assessment is appropriate.

Diagnosis

73. Mrs X and Miss Y disputed the EUPD diagnosis. Mrs X said the Trust failed to review the diagnosis, despite her repeatedly raising concerns. Mrs X said Miss Y demonstrated features consistent with both psychosis and catatonia.
74. In its response to my enquiries, the Trust said Miss Y’s EUPD diagnosis had been reviewed by “numerous” consultant psychiatrists, all of whom have maintained that her clinical presentation is consistent with this diagnosis. The Trust said Miss Y is in receipt of ongoing DBT. The Trust said this is the main therapeutic intervention recommended by NICE for people with an EUPD diagnosis.
75. It is important to be clear that the Ombudsmen cannot diagnose a person. Nor can they substitute their judgement for that of the clinical professionals involved in that person’s care.
76. There is evidence in the clinical records to show that Miss Y has received significant input from clinicians in the community. As the Trust has explained, the clinicians remain satisfied that Miss Y’s presentation is consistent with the key features of EUPD as described by NICE, including emotional instability and “a strong tendency towards suicidal thinking and self-harm.”
77. Taking everything into account, I am satisfied the Trust has appropriately reviewed Miss Y’s diagnosis, albeit I understand that Mrs X does not agree with it. I found no fault by the Trust in this regard.

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Agreed actions

Miss Y

78. Within one month of my final decision statement, the Council and Trust will write to Miss Y to apologise for the distress caused to her by their failure to share the revised protocols with her in a way that took account of the communication difficulties posed by her ASD diagnosis.
79. The Council and Trust will each pay Miss Y £100 in recognition of this distress.

Mrs X

80. Within one month of my final decision statement, the Council and Trust will write to Mrs X to apologise for the uncertainty caused to her by their failure to properly record Miss Y’s wishes regarding the sharing of information with her parents.
81. The Council and Trust will each pay Mrs X £100 in recognition of this uncertainty.

Further agreed actions

82. Within three months of my final decision, the Council and Trust will write to the Ombudsmen to explain what action they will take to ensure that:

• key staff working with Miss Y are appropriately trained in supporting people with an ASD diagnosis. This should include ensuring that staff have a strong understanding of the communication difficulties associated with this diagnosis and how this affects the person in question;
• care staff understand the importance of maintaining accurate and complete records. This includes ensuring staff maintain a clear record of service users’ wishes with regards to consent to share information; and
• they work collaboratively with Mrs X and Miss Y to reword the protocols to use more suitable and compassionate language.

83. The Council and Trust should provide us with evidence they have complied with the above actions.

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Final decision

84. I found no fault with the Council and Trust’s decision to revise Miss Y’s care protocols, nor with the way they considered her diagnosis and capacity.
85. However, I did find fault with the way the Council and Trust communicated these changes to Miss Y and Mrs X. I am satisfied the actions the Council and Trust will now take represent a suitable remedy for the distress this caused.
86. I have now completed my investigation on this basis.

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Investigator's decision on behalf of the Ombudsman