Failure to listen to Ms B’s concerns
24. Ms B says the Trust did not appropriately act on her concerns about her mother’s nutrition and deterioration between September 2023 and January 2024. She thinks the dementia service should have taken further steps to look into this.
25. In the Trust’s complaint response, it said her concerns about her nutritional intake were shared with Mrs P’s social workers, as what Mrs P was eating and drinking was the responsibility of her carers. It also said the dementia service discussed this in multi-disciplinary team (MDT) meetings.
26. We recognise Ms B had concerns about Mrs P’s nutrition due to the food being provided by Mrs P’s carers.
27. Mrs P had private carers, and they were responsible for Mrs P’s food shopping and helping her with daily meals.
28. The Department of Health’s framework for older people says support should be available to help older people with mental health problems live safely in the familiarity of their own homes. Social care and other services should include provision covering, for example, personal care, care of the home, relationships, accommodation, finance and support to carers.
29. In line with this guidance, Mrs P’s social worker would be the appropriate body to investigate and respond to Ms B’s concerns about her mother’s nutrition.
30. Section 2 of NMC The Code says to listen to people and respond to their preferences and concerns.
31. The Trust’s operational policy says, ‘Specialist Dementia Frailty Teams should work collaboratively with Primary Care, Working Age CMHT’s, Social Care, IAPT, Psychological Services, Crisis Teams, Dementia/memory services and a variety of voluntary and third sector agencies to provide comprehensive services for the benefit of our patients.’
32. We consider Ms B’s concerns about Mrs P’s carers had to be handled by Mrs P’s social worker and the local authority. We have considered whether the Trust appropriately listened to Ms B’s concerns and worked collaboratively with social care in line with NMC The Code and the Trust’s operational policy as outlined above.
33. In September 2023, following a medical review which raised concerns about Mrs P’s care package, including whether she is able to prepare sufficient meals, the Trust forwarded these concerns to her social worker for them to review her care package and discuss with her carers.
34. In October 2023, the dementia service spoke with Ms B about her concerns about the carers, and Ms B said she was raising this with her mother’s social worker. The dementia service advised her to keep an email trail.
35. In November 2023, Ms B raised her concerns again, advising she was applying to the court of protection regarding the care package in place. She later raised concerns again with the dementia service about her mother becoming malnourished.
36. The dementia service spoke with Ms B about this and planned to do a joint visit with her mother’s GP. The dementia service and Mrs P’s GP attempted to do a joint visit on 8 December 2023, but Mrs P would not let them come inside.
37. The dementia service attempted to visit two more times, before contacting Ms B about arranging a visit.
38. At the end of December 2023, Ms B raised concerns in an email about the carers, and the food she was receiving. On 2 January 2024, the dementia service spoke with Ms B about her concerns and arranged an appointment to review Ms B.
39. The dementia service also discussed this with Mrs P’s social worker. They discussed Ms B’s concerns about the carers and agreed that Mrs P’s social worker would make contact with Mrs P’s care coordinator in the dementia service to discuss this further. We cannot see Mrs P’s social worker did this in the records.
40. On 18 January 2024, the dementia service discussed Ms B’s concerns about her mother’s carers and physical health deterioration in an MDT and planned an urgent medical review with Ms B present on 30 January 2024.
41. On 30 January 2024, Mrs P was assessed by the dementia service, and her nutrition was discussed.
42. We found the dementia service did listen to Ms B’s concerns appropriately in line with NMC The Code. As the concerns were about the care package provided through the local authority, the dementia service could not make changes to this. It advised her to continue raising any concerns with Mrs P’s social worker.
43. We found the Trust also worked collaboratively with both primary care and social services. The dementia service spoke with Mrs P’s social worker about Ms B’s concerns, and it arranged for a joint visit with Mrs P’s GP.
44. Our nursing adviser said it was appropriate for the dementia service to direct Ms B’s concerns to Mrs P’s social worker, as they were the appropriate body to monitor the carers and this was not the role of the dementia service.
45. Section 8.2 of the NMC code says to keep colleagues informed when they are sharing the care of individuals with other health and care professionals.
46. Following Mrs P’s lack of engagement in December 2023 with the dementia service, and Ms B’s ongoing concerns about her mother’s health, the dementia service arranged an MDT meeting in January 2024 to discuss Ms B’s concerns and consider whether it needed to do anything further. This is in line with the NMC code as above. This shows the dementia service listened and escalated Ms B’s concerns appropriately.
47. We are very sorry Ms B felt the Trust did not listen or act on her concerns about Mrs P’s carers and nutrition appropriately between September 2023 and January 2024. We recognise her frustration, and how she wanted the Trust to do more.
48. We have found the Trust appropriately listened to Ms B’s concerns and responded to these appropriately. We think the Trust discussed these concerns appropriately with her social worker and Ms B’s GP. We have not found a failing with this aspect of the complaint.
The Trust’s communication with Ms B in 2024
49. Ms B says she received regular updates about her mother prior to January 2024, but the Trust failed to keep her appropriately informed after this point.
50. The Trust have confirmed there was no communication plan or sharing arrangement in place. However, it is documented that Ms B was involved in, and invited to meetings about, her mother’s care. In Mrs P’s care plan, Ms B is noted to be involved with supporting her mother.
51. Between October 2023 and January 2024, the dementia service regularly communicated with Ms B, updating her after its visits with Mrs P. Staff would text updates about visits with Ms B and arrange joint visits with her present.
52. In December 2023, Ms B raised concerns about her mother’s health, and her nutrition. Following this, Mrs P’s care coordinator arranged a medical review on 31 January 2024.
53. Ms B was present at this medical review with her mother and the Trust where a care plan was agreed for Mrs P to try encouraging her to start medication.
54. After this appointment and up until May 2024, the dementia service visited Mrs P weekly. The dementia service did not provide Ms B with any updates about these visits.
55. In March 2023, Ms B contacted the dementia service with concerns about her mother calling the police, and she requested another medical review be arranged. The dementia service advised they were visiting her the next day, but nothing further was communicated to Ms B about this. The dementia service asked Mrs P and her carer about this incident but did not share this with Ms B.
56. The dementia service contacted Ms B on 23 May 2024, to advise a mental health assessment was being scheduled due to Mrs P’s GP raising concerns about her welfare. It is noted Ms B did not answer the phone, and a message was left by the team asking for her to call the team. Mrs P went into hospital shortly after this, where Ms B was kept updated by the care team.
57. Section 5.5 of NMC The Code says to share with people, their families, their carers, as far as the law allows, the information they want or need to know about their health, care and ongoing treatment sensitively and in a way they can understand.
58. As Ms B was noted as a point of contact and involved in her mother’s care plan, in line with NMC The code, the Trust should have kept sharing updates with her.
59. Our adviser said following the medical review on 31 January 2024, which involved Ms B, the Trust should have kept Ms B updated about the lack of progress in getting Mrs P to take medication.
60. In line with NMC The Code, this is information Ms B wanted and needed to know. Our adviser said it would have been beneficial to involve Ms B as she may have helped encourage her mother.
61. Our adviser also said, it would have been good practice in line with NMC The Code to keep Ms B updated due to the concerns she had about her mother’s care. They said in older patients, keeping the family informed is important, and it is not clear why Ms B’s communication reduced in 2024.
62. We have found, in line with NMC The Code, the Trust should have contacted Ms B after she requested a medical review appointment in March 2024, to provide her a full update and acknowledge this request.
63. We do recognise, Ms B could have contacted the Trust during this time if she wanted an update. However, we found the dementia service had a responsibility to share information with Ms B, in line with NMC The Code and in the best interests of Mrs P and improving her health.
64. We are sorry to hear about the Trust’s poor communication with Ms B in 2024 and the frustration and distress this caused her. We have found this is a failing by the Trust. We have considered the impact of this failing later in the report.
Mrs P’s medication
65. Ms B complains following the Trust prescribing Mrs P new medication at her medical review on 31 January 2024, the dementia service did not review this again despite Mrs P not taking the medication.
66. In an MDT meeting at the Trust on 18 January 2024, the Trust agreed to arrange an urgent medical review of Mrs P. There were concerns about Mrs P’s engagement with the service and her GP, and about her physical health deterioration.
67. On 31 January 2024, the dementia service reviewed Mrs P in her home. She was reviewed by a consultant psychiatrist and her care coordinator. Ms B was present. In this meeting, Ms B agreed to take quetiapine (an antipsychotic drug that can help with symptoms of schizophrenia, bipolar disorder and depression). Unfortunately, she declined it again before the end of the meeting. The dementia service planned to visit Mrs P weekly and to encourage Mrs P to take this medication.
68. Mrs P’s severe mental illness (SMI) worker visited Mrs P the next week. They tried to encourage Ms B to take this medication, but Mrs P declined this saying she was not unwell.
69. Mrs P continued to have weekly visits by the dementia service until her admission to hospital on 23 May 2024. The medical records do not show a discussion about medication with Mrs P at any of these appointments.
70. The dementia service did not arrange a review of Mrs P’s care plan or discuss her care in an MDT meeting between January 2024 and May 2024.
71. NMC The Code says nurses should assess need and deliver or advise on treatment, or give help, without too much delay, to the best of their abilities, on the basis of best available evidence.
72. We cannot see evidence of the dementia service discussing medication with Mrs P after 8 February 2024, as agreed as an action on 31 January 2024. We do not consider the dementia service discussed medication and advised Mrs P, to the best of its abilities, in line with NMC The Code.
73. Mrs P’s care plan says a medical review should be arranged as required. The Trust’s operational policy does not stipulate how often a patient like Mrs P should be discussed in an MDT meeting. The Trust confirmed it would be the responsibility of Mrs P’s care coordinator to bring any issues with Mrs P’s care to the MDT for discussion.
74. Our adviser said more could have been done at these weekly visits by the dementia service to encourage her to take medication. They said it would have been appropriate to encourage Mrs P every week to take medication, and if she continued to decline, raise this with Mrs P’s care coordinator to consider the best next steps, and potentially discuss Mrs P in an MDT meeting.
75. We recognise this lack of follow up about her mother’s medication caused Ms B distress and worry.
76. We do not consider, in line with NMC The Code, the dementia service tried, to the best of its ability, to encourage Mrs P to engage in treatment and take medication as agreed on 31 January 2025. We also consider had it been clear Mrs P was declining to take medication, it would have been appropriate for Mrs P’s care coordinator to arrange a medical review or raise it in an MDT meeting to discuss this. We find this is a failing by the Trust. We have considered the impact of this failing later in the report.
The Trust’s monitoring of Mrs P
77. Ms B complains the Trust failed to monitor Mrs P appropriately between September 2023 and May 2024. She complains her mother was deteriorating, physically and mentally, which she raised concerns about, alongside Mrs P’s GP, yet the Trust failed to notice this. She thinks the dementia service should have noticed this and intervened before her mother required admission to hospital.
78. Mrs P was on the Care Programme Approach (CPA). The Trust’s CPA policy says this is a care plan for patients with complex needs, a higher risk profile, and, or, requiring multi agency input.
79. Mrs P’s care plan was last updated on 18 May 2023. The care plan highlighted the goal of the dementia service was to minimise the risk of self-neglect, and the risk of mental health deterioration that may result in readmission to inpatient care.
80. The care plan noted she should have monthly home visits from the support worker to monitor her mental and physical health. It said a medical review should be arranged 6 to 12 monthly, or at Mrs P’s care coordinator’s discretion. It was noted the next review of the care plan was to be in November 2023.
81. The Trust’s CPA policy says a patient on a CPA plan will have an allocated care coordinator, who will work closely with the patient, be responsible for fully assessing the patient and meeting with them regularly to make sure the care plan is working. The Trust’s CPA policy says a patient’s care plan should be reviewed every six months.
82. It says a risk assessment is an essential and continuous ongoing part of the CPA policy. It says it is a mandatory requirement whenever a review takes place, or an individual’s circumstances change, to consider all of the risks and how these will be managed.
83. The Trust’s CPA policy says when a new care coordinator is allocated, there must be a formal CPA review with the patient, the old care coordinator, and the new care coordinator.
84. The Trust held weekly MDT meetings to discuss patients on the dementia service. The Trust’s policy does not stipulate how often a patient should be discussed in an MDT setting. The Trust has confirmed with us it would be the care coordinator’s responsibility to bring up a patient at the MDT meeting.
85. Mrs P was discussed in an MDT meeting at the Trust in September 2023, at which her GP’s concerns about her health was raised. The GP felt Mrs P’s mental health was affecting her physical health, including her nutrition and treating her medical problems. They said her health is likely to deteriorate due to her poor mental health, and at some point, she may need sectioning.
86. The Trust planned to continue monitoring Mrs P and encourage her engagement with medical treatment.
87. In October 2023, Mrs P’s care coordinator organised a visit with Mrs P to handover the care to Mrs P’s new care coordinator. At this appointment, her new care coordinator agreed with Mrs P that they would visit monthly with her SMI worker.
88. Although a plan was documented, in line with the Trust’s CPA policy, a formal CPA review should have taken place when Mrs P had a new care coordinator allocated, and a risk assessment should have been done. We have found a failing by the Trust to not review Mrs P’s care plan or conduct a risk assessment in line with its CPA policy.
89. After Mrs P’s last review in May 2023, her next review was planned for November 2023, in line with the Trust’s CPA policy of being reviewed six monthly. We have not seen evidence of this review, and the Trust has confirmed her last review was the one in May 2023. This is not in line with the CPA policy.
90. Although there was no formal CPA review, Mrs P’s care coordinator visited Mrs P in November 2023 and agreed a plan for her to visit monthly to monitor her mental state, and for Mrs P’s SMI worker to visit weekly.
91. After this, Mrs P’s SMI worker continued to visit weekly, but Mrs P refused to let them in with her GP for a medical review. During this time, Ms B and Mrs P’s GP raised concerns about Mrs P’s health. Her GP outlined concerns about her mental health, which was impacting her eating, and for the Trust to consider if intervention was required.
92. Mrs P’s care coordinator visited Mrs P, with her SMI worker, on 29 December 2023. Mrs P told them to leave and said she does not have mental health problems. The care coordinator planned to arrange an urgent medical review.
93. Mrs P’s case was discussed in an MDT meeting in January 2024, where Mrs P’s care coordinator advised she was not engaging with staff or her GP. They discussed the possibility of sectioning Mrs P. The team agreed for an urgent medical review and weekly contact.
94. As we have previously discussed, Mrs P had a medical review on 31 January 2024, and it was agreed to encourage Mrs P to take medication and arrange for an ECG and bloods. It was planned for Mrs P to have weekly visits from her SMI worker or her care coordinator.
95. Following this appointment in January 2024, Mrs P’s SMI worker visited weekly, up until her admission to hospital in May 2024. Mrs P’s care coordinator did not visit during this time. This is not in line with what was agreed in November 2023, that her care coordinator would visit monthly.
96. The Trust’s CPA policy says a care coordinator should ensure regular contact is maintained to monitor the person’s progress.
97. NMC The Code says professionals must act in the best interests of people at all times.
98. In line with the Trust’s CPA policy and NMC The Code, to act in the best interests of Mrs P, her care coordinator should have visited Mrs P between February 2024 and May 2024.
99. The dementia service had concerns following Mrs P’s presentation in December 2023, which led to an MDT meeting and an urgent medical review, when a plan was agreed to monitor her, perform tests and encourage her to take medication. Considering these concerns, we have found the care coordinator, responsible for coordinating Mrs P’s care, should have arranged to see her following this medical review to monitor her progress.
100. Ms B reported an incident in March 2024, explaining Mrs P had called the police and paramedics had attended. She requested another medical review be arranged. Mrs P was advised this would be reported to her care coordinator.
101. Following this, we have not seen evidence of Mrs P’s care coordinator considering this request or visiting Mrs P to assess her. We found, in Mrs P’s best interests, the care coordinator should have visited her.
102. Mrs P had weekly visits from her SMI worker. At these visits, between February 2024 and May 2024, it is continuously noted that she was eating, drinking and sleeping well, and she had no issues.
103. There is an entry on 23 May 2024 by the SMI worker, which must be dated incorrectly as it makes reference to the SMI worker visiting her next on 23 May 2024. We assume this is from the previous week, on 15 May 2024. In this entry, Mrs P was in her bedroom, reported she is eating and drinking well and had no issues to report. She had fresh fruit and vegetables in the fridge.
104. The following week, on 22 May 2024, Mrs P’s GP called the crisis line and requested a mental health act assessment for Mrs P. The GP said Mrs P was ‘at risk of dying due to self-neglect’.
105. The GP reported she appeared to have restricted herself to the bedroom, as food was left on the counter that was dropped off by the carers earlier in the week. They reported the Mrs P had not been eating or drinking well, she had visibly lost weight and looked pale. They reported she was deteriorating in her mental state. They said she appeared confused and was not responsive in their attempts at interaction.
106. She was then reviewed by the crisis team who noted she looked pale and malnourished. They said she appeared not to have attended to her personal hygiene, and her living conditions was unkempt. The team could not assess her mental state as she would not engage with the assessment. The crisis team made an advanced mental health practitioner (AMHP) referral to perform a mental capacity act assessment with Mrs P.
107. On 23 May 2024, the Trust attended Mrs P’s home with an AMHP, two consultant psychiatrists, Mrs P’s care coordinator and her SMI worker. The SMI worker documented Mrs P had appeared to have lost weight. The psychiatrist advised Mrs P was physically unwell and needed to be admitted to hospital. She was cold to touch, had low pulse rate and low blood pressure. Paramedics arrived and gave her medication and fluids to treat her low blood sugar and dehydration.
108. The hospital notes show when she was admitted to hospital, she had severe dehydration, faecal impaction (chronic constipation), poor nutrition, hypothermia and electrolyte imbalance (occurs when the levels of electrolytes in your body become too high or too low and can be caused by dehydration). She also had two hernias.
109. Mrs P sadly died in June 2023 after she suddenly became unwell with a perforated bowel.
110. Mrs P’s notes between February 2024 and May 2024 show she was visited weekly and noted to be well in these visits. By 22 May 2024, her GP reported she was seriously unwell, had lost weight and was confused. She was described as malnourished when she was admitted to hospital on 23 May 2024.
111. Where there is conflicting evidence, or uncertainty about what did happen, we consider whether something is more likely or not to have happened, based on a balance of probabilities. We have considered whether it is more likely, than not, the Trust failed to assess Mrs P appropriately and miss her deterioration, documented in the notes from her GP, the crisis team, and A&E in May 2024.
112. Our adviser said between February 2024 and May 2024, despite Mrs P’s weekly visits, the dementia service did not fully review Mrs P’s mental state, the notes were brief and did provide much detail. The notes do not provide us with much insight into Mrs P’s mental state at the time.
113. NMC The Code says a professional should make sure a patient’s physical, social and psychological needs are assessed and responded to.
114. In line with this guidance, we consider the dementia service should have explored Mrs P’s mental state more, to ensure that this was not deteriorating.
115. In the Trust’s visit to Mrs P a week before her hospital admission, the SMI worker raised no concerns about Mrs P. The notes do not detail how her mental state was. It notes Mrs P reported she was eating and drinking well and had no issues to report to the SMI worker. She was also reported to be in her bed.
116. When the GP saw Mrs P, they reported she had restricted herself to the bedroom and had visibly lost weight and was at risk of dying due to self-neglect.
117. Due to how unwell Mrs P was when the GP visited on 22 May, we consider it more likely than not, on a balance of probabilities, Mrs P’s deterioration happened over a period of time leading up to her GP visit, and not in the week after Mrs P’s last visit from the Trust.
118. NHS Inform states that malnutrition generally happens gradually and there are common signs of malnutrition that can be identified such as poor appetite, weight loss, tiredness and low energy levels, and difficultly keeping warm.
119. As such, we found it likely that the notes from the SMI worker from the week before do not accurately reflect the clinical picture, and as such the Trust likely missed signs of Mrs P’s deterioration by not monitoring her appropriately.
120. Mrs P was at risk of self-neglect, and the Trust’s aim outlined in her care plan was to monitor her mental state and assess her risk of self-neglect. Our adviser said the Trust failed to notice Mrs P’s self-neglect and deterioration and did not explore Mrs P’s mental state during the weekly visits.
121. We are very sorry to hear Ms B’s concerns about how her mother was monitored by the Trust. We understand why she feels that her mother’s deterioration should have been identified earlier.
122. We have found that the Trust failed to review Mrs P’s care plan in line with its CPA policy. We have also found the Trust failed to appropriately monitor her mental state or identify signs of her deterioration, in line with NMC The Code. We have considered the impact of this failing later below.
Our findings on Impact
123. We have found failings with the Trust not providing regular updates to Ms B in 2024, not following up regarding Mrs P’s medication, and not appropriately monitoring Mrs P or noticing signs of her deterioration.
124. Ms B says Mrs P’s death was avoidable, she thinks if Mrs P’s deterioration had been noticed earlier, she would not have become severely unwell. She also considers Mrs P’s diet and self-neglect led to her perforated bowel.
125. She also thinks had the Trust followed up regarding Mrs P’s medication, she may have taken this, and her condition would have improved and prevented her deterioration.
126. We cannot conclude that the Trust’s failure to appropriately monitor Mrs P caused her death.
127. This is because Mrs P was under the care of her GP, a social worker, private carers and the mental health service. We cannot say the Trust were solely responsible for, or could have prevented, what happened to Mrs P when she was under the care of a number of teams.
128. Furthermore, regarding Ms B’s claim Mrs P’s poor diet led to her perforated bowel, we could not say this was an impact of the Trust’s failings as her mother’s diet and care package was the responsibility of social services and her carers.
129. We cannot say, had Mrs P been monitored in line with the Trust’s CPA policy and NMC The Code, she would have engaged better with the service, or her condition would have improved.
130. We can say that had Mrs P been monitored by the Trust appropriately in line with the CPA policy and NMC The Code, her deterioration and self-neglecting could have been noticed, and her care plan could have been discussed and potentially altered to try to improve Mrs P’s mental state.
131. Our adviser said had the care coordinator been visiting Mrs P, they may have identified signs of deterioration and organised a medical review or discussed her in an MDT meeting like they did in January 2024.
132. Therefore, we have found the Trust’s failure to monitor Mrs P appropriately led to a missed opportunity to identify and act on any signs of self-neglect and deterioration, which may have prevented her significant deterioration.
133. Ms B thinks had the Trust followed up with Mrs P regarding her medication, she may have begun taking medication and her mental state would have improved.
134. We understand why Ms B thinks had the Trust encouraged her mother to take medication, she may have begun taking it.
135. It is documented in Mrs P’s medical records that she did not believe in traditional medication, and she had spiritual beliefs. In a previous discussion in September 2023 Mrs P had declined medication as she believed in healing herself.
136. Due to Mrs P’s history of declining medication, we cannot say had the Trust followed up with her and encouraged her to take medication, she would have decided to start medication.
137. We do recognise, by the Trust failing to encourage Mrs P, Ms B has now been left wondering whether this is a missed opportunity for her mother to start medication, and whether this would have improved her mother’s mental state.
138. We also consider, the Trust’s failure to monitor Mrs P appropriately has contributed to Ms B’s distress and worry about whether her mother’s deterioration could have been prevented. Ms B has told us how she has lost faith in the NHS as a result of the treatment her mother received.
139. We have found Ms B was caused additional distress and worry by the lack of communication from the Trust in 2024. We recognise this must have been upsetting for Ms B, considering she was updated and involved in her mother’s care plan before this point, and she had raised concerns about her mother’s health.
140. We have not found Mrs P’s death was avoidable, or her deterioration could have been prevented by the Trust. We can say the Trust missed an opportunity to identify and act on any signs of self-neglect and deterioration, which may have prevented her significant deterioration. We can also say the failings we have found caused Ms B significant distress, worry and upset.