Preparing for discharge
21. Mrs N says the Hospital Trust failed to assess A’s care needs when he was in hospital in preparation for discharging him home and did not put in place the right care for him at home before he left.
22. The Trust said A needed minimal help while in hospital, therapists assessed him as not needing a package of care at the time of discharge but recognised he would need care in the future.
23. The Trust also said A wanted to return home. It made referrals to both the district nurses and the community palliative care team so that support was available at home and so that clinicians could apply for a package of care when it was needed.
24. Relevant NICE guidance on transition between hospital and community settings, outlines how patients should make choices about their own care. It also identifies how patients in A’s situation should have their needs assessed and support put in place so that they can be discharged to their preferred place, including being offered the support of community palliative care services based on their needs.
25. The records indicate while A was an inpatient the hospital palliative care team discussed with him and Mrs N where he would like to be discharged to on several occasions. A explained he wanted to be discharged to his own home which he reinforced to doctors and physiotherapists.
26. Staff, including physiotherapists and doctors, assessed A’s care needs before he was discharged and deemed he was independent in caring for himself. It is documented, for example, that A was fully independent on the ward. A agreed that, at that stage, he did not need a package of care or any equipment at home.
27. Staff recognised and discussed with A and Mrs N the likely need for future care and ensured, following discharge home, he had on-going input from the Hospital Trust community palliative care team and the Trust community nurses. The plan was for these professionals to reassess his care needs on an on-going basis after he went home.
28. Our consultant adviser explained that the Hospital Trust formulated the plan for A’s discharge with both him and Mrs N which was based on his individual preferences. They said the Hospital Trust should not have arranged a package of care before he left hospital as this was contrary to the agreed plan at this stage. They outlined that a robust plan was in place so that staff could reassess A’s care needs at home.
29. Informed by our consultant adviser, we consider staff at the Hospital Trust acted in line with relevant NICE guidance in how they considered and addressed A’s care needs in preparation for his discharge home.
30. We are satisfied hospital staff did not do anything wrong in how they arranged care and support for A at home while he was an inpatient. We will take no further action.
31. Our decision here is not made without recognising the extremely distressing circumstances A and Mrs N experienced after they arrived home.
Discharge suite
32. Mrs N says on the day of discharge, staff at the Hospital Trust transported A to the discharge suite in a wheelchair rather than on a bed and he had to spend four hours waiting in the discharge suite due to unnecessary delays including his prescription getting lost.
33. The Trust acknowledged there was miscommunication between members of staff in relation to whether A should have been in a bed or a wheelchair in the discharge lounge which caused confusion. It explained that it has since improved staffing levels and staff’s knowledge of the discharge processes in the discharge lounge.
34. We appreciate that what happened in the discharge lounge was frustrating and that A felt uncomfortable.
35. Our Principles for Remedy outline how an apology means an organisation accepts responsibility for what happened. They also explain that organisations should learn from what went wrong and explain what it has done to prevent this from being repeated.
36. We are pleased to see the Hospital Trust acknowledged what happened and put appropriate measures in place to stop this happening again, in line with our Principles for Remedy.
37. We will take no further action here as we consider the Trust has already done enough to put this right.
Care and treatment at home
38. Mrs N says both the Hospital Trust and the Trust failed to assess A’s needs and provide the right level of care for him at home including visiting him regularly enough. She is particularly concerned given A was terminally ill and his condition was deteriorating. Mrs N is further concerned staff were reluctant to care for A on his narrowboat home.
39. At 10.16am on 24 April, a receptionist at the integrated community team based at the Trust took a telephone referral from the Hospital Trust about A ahead of his discharge home. The receptionist recorded ‘palliative, fairly independent at the moment, likely to deteriorate quite quick, requesting introductory visit, chc has been applied for. Being discharged with jic [just in case] meds [medication]…… lives on boat in marina’.
40. CHC (continuing healthcare) is a package of care funded by the NHS for adults with complex, on-going healthcare needs.
41. We have not seen any evidence of the same phone call from the Hospital Trust’s records. A member of staff at the Hospital Trust completed a discharge sheet on 24 April, noting ‘package of care not currently required, CHC funding has not [underlined] been requested, referred to community palliative care’.
42. In the afternoon of 25 April nursing staff from the integrated community team visited A and Mrs N at home. A nurse noted A and Mrs N were ‘currently managing’ and they provided them with information about how to contact the district nursing team (at the Trust). The nurse also completed a document based on their discussions with A in which ‘staying on my boat’ was what mattered to him.
43. On 26 April, a nurse from the integrated care team (at the Trust) made a referral to the occupational therapy team (also at the Trust) as A was a ‘deteriorating palliative patient’. The purpose of the referral was ‘to look at provision of equipment and to assess due to expected rapid decline’.
44. On 27 April a member of the occupational therapy team and a nurse at the Trust discussed concerns that the ‘patient lives on a very small narrow boat so equipment and care provision are very limited’. The records also document there was concern A wanted to remain at home for the time he had left but ‘due to the challenging environment, intervention possibilities will be very limited’.
45. Later that day, a palliative care nurse from the Hospital Trust visited A and Mrs N at home. The nurse recorded A ‘is rapidly deteriorating’ and told A and Mrs N he would ‘not be able to access a care package’ in his narrowboat home ‘due to the access issues and close quarters which are not amenable to equipment’. Mr and Mrs N explained they thought they would be able to manage with the help of friends. The nurse sent a letter to A’s GP outlining this discussion.
46. On 28 April, Trust records show that, in two separate phone calls, a nurse from the Trust and a member of the occupational therapy team spoke to the palliative care nurse from the Hospital Trust. The palliative care nurse explained their assessment of the situation from the day before to both Trust staff. The Trust occupational therapist decided, having spoken to the palliative care nurse, that ‘there are no therapy solutions to the issues at present’ and closed the occupational therapy referral. According to the Trust record, if A needed therapy the palliative care nurse could phone the referral centre and the referral could be reopened.
47. There is no record of these telephone calls in the Hospital Trust documents we have seen.
48. The Trust records document Mrs N contacted the nurses at the integrated community team by telephone on 28 April with concerns about A’s condition. Nurses provided support over the phone and also made a follow-up call the following day in which they arranged a home visit on 30 April. Nurses visited A at home on 30 April and 1 May.
49. On 2 May, a nurse at the Trust phoned staff at the local Integrated Care Board (ICB) to see if anybody (from the Hospital Trust or the Trust) had applied for CHC funding for A. The ICB decides whether to commission CHC care to a patient once clinicians make an application. ICB staff confirmed nobody had.
The Hospital Trust
50. In its response of 20 December 2023, the Hospital Trust apologised A did not get the care and support he needed after its palliative care nurse visited him at home. It said the palliative care nurse should have recognised A needed care and applied for it including highlighting the individual circumstances of his needs. The Trust accepted that when assessing A’s home environment, the palliative care nurse assumed carers may not be able deliver care safely. The Trust said this was wrong and again apologised. It also said staff did not intend to discriminate.
51. DHSC Fast-track pathway tool for NHS continuing healthcare guidance, says a doctor or nurse can consider a person for fast-track funding if they believe the person’s condition is rapidly deteriorating and may be entering a terminal phase.
52. We understand from our nurse adviser that once he went home A’s condition sadly deteriorated quickly.
53. We also understand from our nurse adviser that the palliative care nurse did not follow relevant DHSC guidance when they saw A at home on 27 April because they did not apply for an assessment for CHC funding.
54. Our nurse adviser said fast-track funding is available to support anyone in their last six weeks of life to ensure that care and support services are put in place as soon as possible to best meet a person’s care needs in their preferred place of care.
55. We consider the Hospital Trust did not act in line with DHSC guidance because the palliative care nurse did not consider A for fast-track funding given his condition was rapidly deteriorating and he may have been entering a terminal phase. We go on to consider the impact of this further below.
The Trust
56. The Trust acknowledged that its nursing staff did not check soon enough whether a referral for fast track CHC had already been made. It also acknowledged that nurses at the integrated community team did not provide appropriate levels of care and support to A when he was at home or communicate effectively with him or Mrs N.
57. Coalition for Collaborative Care and NHS England guidance states that care practitioners need to work in partnership with the patient and listen to what is important to the individual including their preferences. It says conversations should encourage reflection, shared decision making and sometimes negotiation. It says staff should communicate effectively and regularly with the dying person and those important to them.
58. Leadership Alliance for the Care of Dying People guidance says staff should provide care that is tailored to the needs, wishes and preferences of the dying person. It also says they should assess the patient’s condition whenever that condition changes and make timely and appropriate responses to those changes.
59. Our nurse adviser explained it was clear from the first time Trust staff visited him at home that A wanted to stay on his boat and the nursing staff should have worked with him to provide the best care possible in his home location. They said Trust staff were led by the assessment of the palliative care nurse from the Hospital Trust.
60. Our nurse adviser further explained that Trust staff did not recognise soon enough how close A was to the end of his life despite the Trust records indicating he was deteriorating quickly.
61. Our nurse adviser also outlined how staff did not always communicate effectively with A and Mrs N.
62. Informed by our nurse adviser, we consider staff at the Trust did not act in line with either Collaborative Care or Leadership Alliance for the Care of Dying People guidance. This is because they did not work with A around his preferences soon enough, provide care that was tailored to his changing needs and wishes, or communicate effectively with him and Mrs N. We will consider the impact of this further below
63. We also think Trust nurses did not consider fast-track funding for A soon enough in line with DHSC guidance, whether this was checking that staff at the Hospital Trust had already done this or making a referral themselves. This is further indication that something went wrong and we will consider the impact further below.
64. We asked our nurse adviser about whether staff visited A at home as often as they should have. They said there was no urgency for nurses to visit on the day of his discharge from hospital as it is recorded in the hospital records A and Mrs N had stated they were ‘sure they could manage at home on boat’.
65. Our nurse adviser explained that one of the most difficult aspects of palliative care is assessing when a person is in their last days of life. They further explained that had the Trust nurses recognised sooner how close to the end of life A was they could have put a plan in place to support him and Mrs N in line with Leadership Alliance guidance.
66. We consider what went wrong here is as previously stated above. Trust nurses did not act in line with Leadership Alliance guidance and correctly assess A’s condition as it changed once he got home. This resulted in them failing to make timely and appropriate responses to those changes by providing the care he needed.
Impact
67. Where we see indications that something went wrong, we go on to consider the impact this had.
68. Mrs N says because of what happened, A’s end of life was not as comfortable or as dignified as it should have been and he was more agitated as a result. She also says she had to do more of the caring for A which meant she was deprived of spending quality time with him. She says she was frightened of hurting A by getting him back in bed once she provided personal care to him.
69. Mrs N also says she suffered from the distress of seeing A die in this way and feels they were discriminated against because they lived on a boat.
70. We understand from our nurse adviser that if staff from the Trust and the Hospital Trust had done what they should have a higher level of care would have been provided to A, particularly in the last 36 hours of his life. They said fast-track CHC funding could have resulted in carers being arranged to support both A and Mrs N, including night sitters to allow her to get some rest.
71. Our nurse adviser outlined that it is likely there would have been constraints in terms of the equipment that staff could use such as hoists or electric profiling beds to provide care to A as space is restricted on a narrowboat. They explained that in turn staff would likely not be able to lift A as employers have a legal duty to protect staff from hazardous manual handling at work and it is not routine for staff to manually lift patients (without equipment). However, they further explained that overall, if Hospital Trust and Trust nurses had done what they should have A’s care would have been much better supported in his own home, which was the place of his choosing.
72. We are satisfied there is an injustice to both A and Mrs N here as we consider his end of life was not as comfortable or as dignified as it might have been. We also appreciate what Mrs N tells us about her having to care more for A which deprived her of spending time with him. In addition, we recognise the events of the last days of A’s life caused Mrs N significant added distress at what was already a very difficult time.
73. In terms of both her and A feeling discriminated against because of where they lived, we can see the palliative care nurse from the Hospital Trust told them on 27 April that A would ‘not be able to access a care package due to access issues and close quarters which are not amenable to equipment’. We do not consider this to be the case. We think A could have accessed a care package even though there may have been some restrictions owing to the space on the narrowboat. We can appreciate why A and Mrs N felt they were not getting what they were entitled to because of where they lived.
Outcomes
74. Mrs N came to us wanting the Trust and the Hospital Trust to apologise for what happened and to make service improvements.
75. Our Principles for Remedy explain how an apology means accepting responsibility for what happened.
76. The Hospital Trust has acknowledged that the palliative care nurse should have recognised A needed care and applied for it, and made an incorrect assumption that carers may not be able to deliver care safely.
77. The Trust acknowledged that its staff did not ensure a referral for fast-track CHC care had happened and did not provide the right level of care and support to A at home.
78. We consider both the Hospital Trust and the Trust have acted in line with our Principles in terms of apologising for what happened.
79. Our Principles for Remedy say organisations should explain the changes they have made so what went wrong is not repeated.
80. The Hospital Trust outlined how the specialist palliative care team have considered A’s case and learnt from it to ensure going forward staff make a CHC fast-track application for all eligible patients. It said the team will continue to sensitively counsel patients and those important to them around the practicalities of caring for someone when there are identified health and safety concerns.
81. The Hospital Trust also said it was setting up a new CHC workforce group to review access and eligibility for this type of care. It said this would include considering how patients, who may not be eligible for this funding stream, can still access rapid care in their dying phase.
82. Our nurse adviser gave their view that these changes will ensure an assessment will be undertaken for all those deemed eligible for a fast-track CHC application. They said this will lead to an assessment of needs together with an evaluation of the home environment and an informed response to the patient and their family. They also explained that the new CHC workforce group would improve and speed up access to funding for people in their dying phase.
83. We are satisfied the Hospital Trust has acted in line with our Principles here in respect of the actions it has taken which we consider will prevent what went wrong in this case from being repeated.
84. The Trust explained that it has established regular community team patient reviews for all palliative patients which gives staff greater oversight and reduces the risk of issues being overlooked.
85. It also outlined that it has arranged essential ‘End of Life Masterclass’ training sessions for its nurses together with ‘Communication at the End of Life’ training for all its staff. The ‘End of Life Masterclass’ training included modules on: • recognising when someone is dying • assessment of symptoms • pain.
86. We understand from our nurse adviser that the ‘End of Life Masterclass’ training will support staff to recognise when a patient is deteriorating and entering the dying phase while the community team patient reviews will help to ensure palliative patients’ needs are regularly considered.
87. They also explained that the communication training will ensure staff are provided with the tools to have meaningful and sensitive conversations with patients and those important to them at the end of their life.
88. We are satisfied the Trust has acted in line with our Principles in taking action which we consider will prevent what went wrong in this case from being repeated.
89. We have also conducted precedent checks as part of our process. We have not received any similar complaints about the Hospital Trust or the Trust.
90. We will take no further action here as we consider both the Hospital Trust and the Trust have already done enough to put right what went wrong.
91. This does not in anyway undermine the tragic circumstances of what happened to A and the impact this had on both him and Mrs N. We fully appreciate how Mrs N continues to be affected.
92. We hope Mrs N is reassured that by taking the time to raise her complaint with both the Hospital Trust and the Trust, both organisations have identified what went wrong and have carefully considered appropriate measures to prevent this happening again in the future.
Continence care
93. Mrs N says staff did not provide the right continence care to A when he was at home and did not consider putting a catheter in place.
94. The Trust said a nurse visited A on 30 April and found that he could still mobilise a few steps to the toilet but was very weak. It also said the following day, after Mrs N contacted the service and reported A had become incontinent, staff provided a urine bottle.
95. Royal College of Nursing (RCN), Catheter Care, explains that nurses should carefully consider whether a catheter is necessary when a patient is receiving end of life care because of the risk of infection and discomfort.
96. On 28 April, Mrs N called the Trust district nurses because she was worried about A’s urine output. Staff gave her advice to monitor this and noted A was only having sips of water and was in no pain. Staff advised her to call back if there was no urine output or any increased discomfort.
97. In the evening of 29 April, Mrs N called the Trust district nurses and requested a visit as she was worried about A. It is documented he was not in any pain and could ‘shuffle’ to the toilet and back. The nurse arranged a visit for the following day.
98. In the morning of 30 April, a Trust nurse visited A. They recorded that A had no pain but ‘grimaces when he moves’. He was managing to get to the toilet to pass urine. The nurse discussed providing A with a urine bottle which A and Mrs N agreed with.
99. In the early afternoon of 1 May, Mrs N called the Trust district nurses requesting a visit and for A to be catheterised following a number of falls.
100. At 3.15pm on 1 May, a district nurse and healthcare support worker from the Trust saw A at home. He said he was not in any pain. Mrs N reported that his urine was thick. It is documented that the nurse discussed having a catheter but it was agreed that A would try using the urine bottle as he was passing thick urine.
101. Our nurse adviser said because A was independent and mobile on discharge from hospital he did not need a catheter when he arrived home.
102. They explained that catheterisation is not usual in end of life care if a patient is able to pass urine and mobilise to a toilet or commode. It can make patients more uncomfortable and there is an increased risk of them contracting an infection. Our nurse adviser further explained the district nurses were correct to provide urine bottles as catheterisation is only provided as a last resort.
103. We understand from our nurse adviser that Trust nurses acted in line with RCN guidance because they carefully considered whether a catheter was necessary for A and took account of the risks.
104. We are satisfied Trust nurses acted in line with RCN guidance in terms of the continence care they gave to A including not inserting a catheter.
105. We will take no further action here as there is no indication the Trust did anything wrong.
106. Again, we do not in anyway underestimate how difficult a time it was for both A and Mrs N in the last days of A’s life.