Family not allowed to visit
14. Ms T says the Trust should have allowed her, as the carer, to visit and assist her mother, for example with eating and drinking. We know how well the family cared for Mrs T at home and so we appreciate how upsetting it must have been to not be able support her in hospital.
15. The NHS guidance in place at the time stated ‘visiting was suspended with immediate effect’. The purpose of this guidance was to protect visitors, patients and staff from COVID-19. It said:
‘The only exceptional circumstances where one visitor – an immediate family member or carer – will be permitted to visit are listed below.
• The patient you wish to visit is receiving end of life care.
[…] • You are supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed.’
16. The actions of the Trust were in line with this guidance. Mrs T was being given treatment and her sad death was unexpected, so the first bullet point did not apply at any time during her hospital stay.
17. In relation to the second bullet point, our physician adviser explained family members would only be allowed to support a patient with dementia if the patient’s behaviour was having an extreme effect upon themselves or others. The medical records do not show this was the case with Mrs T. While we recognise Mrs T experienced some confusion, she did not demonstrate the kind of restlessness that would cause a danger to herself or others.
18. Later in the hospital stay we can see the Trust allowed Ms T to attend the ward to prepare for Mrs T’s discharge and to identify any support she needed. Our physician adviser said it was good practice the Trust made an exception to the visitor guidance at this time, to help make the discharge smoother.
19. All guidance needs to be balanced against the needs of the patient. To allow Ms T to attend at this point was in line with GMC guidance which says, ‘You must use your judgement in applying the principles to the various situations you will face as a doctor’.
20. For these reasons we did not see any failings in this part of the complaint.
21. It is unfortunate that families were not able to support their relatives in the way they would like during the pandemic. This made communication more important, and we have gone on to consider communication later in this decision.
The Trust’s decision to keep Mrs T as an inpatient
22. Mrs T was very unwell when she was admitted to hospital. The records show she had sepsis, heart failure, dementia and frailty and other conditions. Our physician adviser explained Mrs T needed immediate care to treat her and stop any suffering.
23. The GMC guidance says:
‘In providing clinical care you must: • prescribe drugs or treatment, including repeat prescriptions, only when you have adequate knowledge of the patient’s health and are satisfied that the drugs or treatment serve the patient’s needs • provide effective treatments based on the best available evidence • take all possible steps to alleviate pain and distress whether or not a cure may be possible’.
24. Our physician adviser said the Trust did thorough assessments in line with this guidance.
25. There is no evidence in the records to show Mrs T refused care or treatment. She was showing signs of improvement and so it was reasonable and in line with guidance for the Trust to continue treatment.
26. Our physician adviser explained if the Trust had decided to discharge Mrs T at this point, before the sepsis had gone, it is likely she would have died. He told us Mrs T’s condition could be improved and so there was no reason for the Trust to consider discharge with end of life (palliative) care.
27. For these reasons we have not seen any failings in the decision to not discharge Mrs T to the care of her family.
28. However, there was a lack of communication with the family about the decisions made and the reasons Mrs T needed to be kept in hospital.
This lack of communication meant the family were not given the information they needed to understand why Mrs T needed active treatment in hospital, rather than palliative care at home. We have looked at this later in the decision.
Adjustments for individual needs
29. Ms T says the Trust did not make specific changes in its care. She explained Mrs T had dementia and needed special care for certain things, like being blind on her right side. We understand what a worry this was as Ms T was not allowed to visit.
30. NICE guidance says hospitals should record personal details and preferences about people with dementia as it helps staff to understand and anticipate their needs. It says staff should encourage people living with dementia to give their own views and opinions about their care. It suggests using a structured tool to record their likes and dislikes, routines and personal history. The Trust has a booklet called ‘About Me’ to do this.
31. The Trust recognised in its complaint response that staff did not complete the ‘About Me’ booklet with Mrs T.
32. The Code says nurses should ‘listen to people and respond to their preferences and concerns’ and ‘make sure that people’s physical, social and psychological needs are assessed and responded to’. Our nursing adviser told us the nursing assessments were not in line with this guidance. She explained there is no record the Trust ever undertook a holistic ( complete person-centred) assessment of Mrs T to look at all her needs. The records show she was given practical care, but there is nothing to show she was given the individualised care we would expect.
33. We saw other areas where the Trust fell short of what is expected in relation to personalised care. The admission document in the medical notes is incomplete. It states Mrs T did not have any eyesight/hearing problems and did not have any specific dietary needs or mental capacity issues. This information is not accurate.
34. The nursing document that was filled in shows basic tick box evaluations were carried out to provide practical care. There were more detailed plans available in the records, but they were generally not completed.
35. The communication nursing care plan shows no assessment of Mrs T’s communication needs. There was a dementia/cognitive/sensory impairment care plan template available in the records, but this was not completed.
36. There is evidence of some assessment of Mrs T’s needs. Brief nursing evaluations record Mrs T’s ability to communicate her care needs for most of her stay in hospital. There are some records of her refusing to take medications. There are very regular assessments for the risk of falls. However, there are notes saying there were no concerns about changes in Mrs T’s mental state, which is different to some other evaluations that noted some confusion.
37. We can see there is good evidence of some care given, such as the food charts, which shows nurses were acting in line with the dietician’s advice. However, there is no evidence the family were involved in any of the care planning on the ward. This meant there were gaps in knowledge about what Mrs T needed.
38. The nursing records do not provide any reassurance Mrs T was assessed and given the individual care that would be expected from the NICE or NMC guidance.
39. We have looked to see what the impact was of these failings later in this decision.
Whether Mrs T had a coordinated care plan
40. NICE guidance says when a person is admitted to hospital, those treating them should identify staff to form a hospital team that will support the patient. The structure of the team should reflect the person's needs and circumstances.
41. The guidance says as soon as people with complex needs are admitted to hospital, all relevant practitioners should start assessing their health and social care needs. They should also start discharge planning.
42. There were many staff involved in Mrs T’s care and treatment including medical clinicians, nurses, occupational therapists, dieticians, microbiologists and physiotherapists. All were treating Mrs T to make her fit enough for discharge.
43. Our physician adviser said it seemed all staff were working to get the best outcome for Mrs T, but there was no evidence of a coordinated care plan. They said there was good evidence of discharge planning from physiotherapy and good coordination by social care to work with the family to establish a care package on discharge. However, this appeared to happen separately to the team. There was a lack of management of the clinical investigations that were done and whether these were in Mrs T’s best interests.
44. Mrs T was admitted with biliary sepsis (a severe life-threatening infection of the biliary tract) and it was essential this was identified and treated.
45. The Trust also carried out a variety of other tests for other less serious issues. Our physician adviser said this happened without evidence of any overall plan or consideration of the benefit to Mrs T.
46. There is no evidence of staff giving any consideration that these investigations would impact on Mrs T and her family’s expressed wish for her to go home as soon as possible.
47. This could have been avoided if there had been a coordinated understanding of the treatment, clear communication between the people treating Mrs T and the assessments and discharge planning.
48. NICE guidance explains the importance of ‘an assessment by a professional, that takes into account your abilities, needs and wishes’ and ‘involvement with your family if you wish, in decisions about intermediate care. This includes whether it will be suitable for you and which setting it will be provided in.’
49. Our physician adviser said there was no evidence the Trust focussed on Mrs T’s wishes as required by this guidance.
50. The lack of a lead clinician in the decision making and consultation with the family means the Trust did not draw up a coordinated plan of care and treatment. This was a failing.
51. We cannot know if Mrs T would have been discharged sooner if this had happened, but there was a missed opportunity for the Trust to assess this and for Mrs T and her family’s wishes to be considered. We know how distressing this was and we have gone on to consider the impact more fully later in this decision.
Communication
52. Ms T told us communication was poor. She told us she had to wait two weeks before she could speak to a doctor. She said the family spoke about Mrs T’s needs over the phone to the Trust daily, but the same problems kept happening. She explained it was as if what the family said was not written down and so there were no improvements to Mrs T’s care.
53. NICE guidance says hospital teams should recognise the value of carers and families as an important source of knowledge about the person's life and needs.
54. This guidance says if the discharge plan involves support from family or carers, the hospital team should take account of their: • willingness and ability to provide support • circumstances, needs and aspirations • relationship with the person • need for a rest period.
55. The Silver Book makes references to the importance of involving carers with the treatment and decision making for older people. It says ‘people must be treated as individuals with dignity and respect; their wishes and those of their carers must be acknowledged, with shared decision making based on clinical considerations’.
56. There are only two notes to show the hospital staff had any communication with the family. Our physician adviser said this shows poor communication that is not in line with guidance. There are no notes of the contacts the family made to ask for involvement and to request an early discharge. This lack of contact was a missed opportunity to gather relevant information and to ensure the care and treatment was what Mrs T wanted.
57. Our nursing adviser also had concerns. She explained that during the visiting restrictions due to COVID-19, most NHS trusts established ways to keep in touch with families. She said there is no evidence of a co-ordinated approach to communication in this case. She also noted the family had made multiple calls to the hospital to raise concerns and to express their eagerness for Mrs T to come home. There is no note of these calls in the medical records.
58. The Code says, ‘share with people, their families and 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’. There is no evidence this happened.
59. We know Mrs T had dementia. This made it even more important that the Trust communicated with the family to make sure it was able to meet Mrs T’s needs. There is no evidence of this happening. Every time nursing staff failed to fill in the assessments with any personal information it was a missed opportunity to assess Mrs T as an individual.
60. There is nothing to show any empathy or care for the family. There is not any note of the care given to Mrs T after her death to provide comfort to her family.
61. We find communication with the family was not in line with the expectations of the guidance.
Complaint handling
62. Ms T told us the Trust’s complaint handling made her distress worse. She said the original concern she raised with the Patient Advice and Liaison Service (PALS) was not properly passed on to the investigating officer. She said she did not think an independent and fair investigation had taken place and she did not feel the Trust was being open.
63. The complaint file shows there was some confusion about whether the family’s concerns would be dealt with by the Bereavement and Medical Examiners Service or whether the Trust would be doing a complaint investigation. This confusion was unfortunate and we can see why this was upsetting for the family.
64. We can see the Trust took quick action to correct this once the situation was cleared up. The Trust wrote to Ms T explaining its understanding of the issues. This is in line with the Regulations which say an organisation should write and explain how the complaint will be handled and the time the organisation expects the complaint to take.
65. The Trust’s responses recognised some parts of the care and treatment were not as they should have been. We recognise that Ms T disagreed with some of the information in the responses and felt the investigation did not go as far as she wanted, and so we can see why she was unhappy.
66. We have reviewed the complaint file and can see how seriously the Trust treated the complaint. We can see the investigation involved staff from different departments in making the responses. The Trust also offered to meet with Ms T to try to answer her concerns more fully.
67. We have not seen any failings in relation to the complaint handling. We think the Trust acted in line with our Principles which say organisations should deal with complaints promptly, listen to the complainant’s views and give clear evidence based explanations.
68. We cannot see anything to suggest the Trust did not carry out an independent, fair and open investigation. We accept that it did not provide all of the answers for Ms T and we regret this.
Impact of failings
69. We understand how upsetting it is for Ms T to be left with the concern her mother’s condition deteriorated because she was not getting the care and treatment she needed. Taking into account the views of both of our advisers we did not think this was the case.
70. Our physician adviser explained if Mrs T’s death had been due to gradual deterioration we would have expected to see it in the records, and there is no evidence of this.
71. The Trust were giving Mrs T care and she was responding to this and recovering from her serious illness. There is no evidence her unexpected and sudden decline and sad death were due to the failings we found. Our physician adviser explained it is likely her death was because of her underlying conditions and frailty. We have seen nothing to show her death was avoidable.
72. Our nursing adviser explained the medical and nursing assessments did not show any evidence Mrs T’s death could have been predicted. Her National Early Warning Score (NEWS is a risk tool used to monitor deterioration) remained stable and at a level that did not need additional treatment. Our nursing adviser said right up until Mrs T’s sudden death, discharge planning was continuing for ongoing care at home, not end of life care.
73. We can say there was a missed opportunity to consider discharging Mrs T sooner. We do not know whether a better coordinated approach would have led to an earlier discharge, and so allowed Mrs T the opportunity of dying at home with her family. Sadly, the family has been left with this unanswered question.
74. We cannot say the lack of consideration of Mrs T’s individual care needs led to the impact Ms T identified. However it is clear it caused a lot of distress for the family that could have been avoided with better communication.
75. We can see Mrs T was frail and had co-morbidities (the presence of two or more medical conditions in a patient). She had dementia, which is a life limiting condition, and when she was admitted she was already quite poorly and dehydrated.
76. Our nursing adviser said there is nothing in the records to suggest Mrs T had heart failure due to malnutrition (not eating enough), as Ms T told us she had worried. She explained it is not possible to conclude, that the failings in communication, assessment and care planning led to Mrs T’s deterioration and death.
77. We accept the result of the failings is that the family continue to be distressed by their memories of Mrs T’s last days of her life, and their worries she was not getting the care she needed.
78. We carefully considered whether the Trust has done enough to put right the impact of the failings and to prevent it happening again.
79. The complaint responses have given details of some actions the Trust has taken. New processes such as daily contact with relatives and a dementia champion are examples of good practice.
80. We think there are additional steps the Trust should take to provide reassurance of improvements it has taken, or plans to take. We have not seen evidence the Trust has recognised the full extent of the failings in meeting individual needs, coordinated care planning and communication.
81. We think it should look to see what caused the failings and check that these are not wider issues within the Trust.