The ICB
19. At the beginning of the period we are considering Wakefield Clinical Commissioning Group (CCG) managed Mrs J’s continuing healthcare. In July 2022 the CCG became part of the ICB. We refer to all actions as those of the ICB as it has taken on responsibility for the CCG.
20. Mrs J’s package of care was provided via a notional personal health budget (PHB). This is where a personalised care and support plan (CSP) is created and the financial budget for the care needed to meet that plan is held and managed by the ICB.
21. A CSP sets out the health and wellbeing needs of the person, and is created in collaboration with that person or their family to ensure it addresses their preferences for how their care is delivered. Any care provided must meet the needs set out in the CSP. This is supported by paragraph 172 of the National Framework which says:
22. ‘Where a person qualifies for NHS Continuing Healthcare, the package to be provided is that which the [ICB] assesses is appropriate to meet all of the individual’s assessed health and associated care and support needs. The [ICB] has responsibility for ensuring this is the case, and determining what the appropriate package should be.’
23. Mrs J’s care package changed three times in 2022. We have considered events chronologically and explain our findings below.
February to May
24. Between February and April Mrs J received 86.5 hours of care a week. This consisted of: • overnight care from 8pm to 7am every day • two hours of care from 10.30am to 2pm twice a week • 45 minutes of care from 3.30pm to 4.15pm twice a week.
25. The CSP said Mrs J needed carers to help with personal care, meals and maintaining a safe environment. She was able to go to the toilet by herself in between care visits and her daughter helped with meals too. Overnight carers provided support for Mrs J when she used her NIV. Twice a week she had some additional care to give her some company and provide respite for Ms P
26. Ms P visited her mother every day to assist with more routine aspects of her care and provided essential psychological and social support to help with her anxiety. The CSP identified that Mrs J wanted to see her daughter every day. Part of the PHB included funds to provide Ms P respite from her role as a carer when needed.
27. This package was based on the previously agreed upon plan following the annual review of Mrs J’s care in April 2021. This does not form part of the complaint to us so we have not commented on the review.
28. Ms P tells us in around February or March she asked the ICB for a teatime care visit to give her some respite. The ICB agreed to the request, but it could not be provided as the care agency had no capacity and an alternative provider could not be sourced.
29. From the records the ICB has provided to us we are unable to see any documentation about this request, which makes it difficult for us to see what happened during this time. We asked our CHC adviser what should normally happen in this situation.
30. Our CHC adviser explained that increases in care can only be provided immediately if the care agency can accommodate the increase. In this case it appears the additional care could not be provided for good reason, and there is no failing here. We also note there were no other concerns raised about the care package in terms of it not meeting Mrs J’s needs identified in the CSP.
31. Mrs J had her annual CHC review on 27 April. It was still agreed she should receive additional teatime calls and the care agency had capacity to provide this now. The ICB increased Mrs J’s care to 92 hours a week. This consisted of: • overnight care from 8pm to 7am every day • an hour of care at teatime from 4pm to 5pm every day • four hours of care from 12pm to 4pm twice a week.
32. The CSP said the additional teatime call was to allow carers to provide additional support with personal hygiene, meals, and toileting. This was due to Mrs J’s mobility deteriorating and her experiencing incontinence.
33. Our CHC adviser reviewed Mrs J’s needs and the agreed package of care. They explained the package of care provided Mrs J with the right amount of care to meet her identified needs during the day and night. As we have seen the care package was in keeping with the care and support plan, we consider the ICB acted in line with the National Framework.
June
34. Although Mrs J’s care was increased in May, she was only at home to receive this for around two weeks. Sadly, she then spent a significant amount of time in hospital.
35. During an admission between 28 May to 1 July, the ICB reviewed Mrs J’s care plan on 30 June and her package of care was increased further to 121.5 hours a week. This consisted of: • overnight care from 7pm to 10am every day • an hour of care every day from 3pm to 4pm (provided by a different care agency due to limited capacity).
36. This was in response to concerns raised by the hospital that Mrs J was now experiencing increased anxiety and breathlessness, so was using the NIV for longer periods including during the day.
37. The additional care meant carers arrived earlier in the evening and left later in the morning. She continued to receive care in the afternoon to assist with personal care and meals. The twice weekly visits for company for Mrs J and respite for Ms P increased to four hours and 45 minutes in length.
38. Our CHC adviser said this provided Mrs J with the care needed to meet her physical health needs during the day and night, and also provided the additional calming influence and practical support needed for her NIV treatment. Our CHC adviser said this was a significant care package that met Mrs J’s needs. As we saw Mrs J’s needs were adequately planned for, we found the ICB acted in line with the National Framework here.
July to September
39. After the package of care was increased at the end of June, Mrs J again did not spend much time at home to benefit from the increased care. She was only at home for around 11 days before another long admission from 17 July to 2 September which is the end point of the period we are considering. We were sorry to learn of Mrs J’s decline in this period.
40. Before Mrs J was discharged from hospital on 2 September there was a further review of her care plan on 31 August and the ICB increased her package of care again. She was now set to receive 143.5 hours of care a week, which was 20.5 hours a day. This consisted of: • care from 2pm, throughout the afternoon and overnight until 10am the following morning, every day. This was supplemented by a new provider as the care agency did not have capacity to provide all this care.
• additional care for thirty minutes every day from 7pm to 7.30pm.
41. This was to address Mrs J’s increasing needs. Whilst she was in hospital staff there identified that she now needed to use her NIV even more during the day and still throughout the night. Her anxiety increased further, and she was more dependent on assistance to meet her personal health needs.
42. Our CHC adviser said this care package increase was sufficient to provide Mrs J with the care needed to meet her identified needs. We therefore found the ICB acted in line with the National Framework here.
Summary
43. We acknowledge Ms P played a significant role in her mother’s care. Our CHC adviser says in their clinical experience the ICB did not unduly rely on support from Ms P. They also said the ICB did not put a cap on how much it was willing to spend on Mrs J’s care. This is evidenced by the increase in her care package, and therefore increase in budget, in accordance with her assessed needs.
44. It is our view the ICB acted in line with the National Framework and we found no failings here. We understand this may come as a disappointment to Ms P. We do not underestimate how difficult this period of time was for her whilst she was having to deal with her mother’s complex needs, worsening health, and hospital admissions.
The Trust
Care provided by PERT
Complaint about poor care leading to hospital admissions
45. Ms P told us her mother’s hospital admissions in 2022 could have been avoided had PERT visited more often and provided better self-management advice.
46. The Trust has explained PERT offer an ‘admission avoidance service’ for people who become unwell with new, or a flare up of, respiratory symptoms to try and prevent hospital admission. The team does not have capacity to perform regular home visits but provide people with self-management plans and carry out visits if the person is unwell or their symptoms change. Visits stop when the illness or flare up resolves, but the team can become involved again if things change. If symptoms are severe or there is a risk to health, it will advise hospital admission.
47. The NMC code says nurses must ‘pay special attention to promoting wellbeing, preventing ill health and meeting the changing health and care needs of people’. They must also help people access ‘information and support when they need it’.
48. There are no national standards that set out how often a team such as PERT should visit a patient like Mrs J. Our respiratory nurse adviser explained for a team like PERT, that provides support when problems arise rather than on an ongoing regular basis, the frequency and level of support is based on an individual’s needs and circumstances.
49. In Mrs J’s case, the focus of her care was managing her progressing COPD symptoms with NIV and managing any acute exacerbations (a flare-up of COPD where symptoms become more severe, often in response to an infection).
50. During April to October Mrs J had seven hospital admissions and PERT reviewed her 46 times. The focus here was ensuring Mrs J’s ventilation needs were being met. PERT regularly reviewed her machine to make sure it was delivering the prescribed treatment. They also liaised with the rest of the clinical team to make sure she was receiving the correct medication, oxygen, and support with her NIV.
51. Unfortunately, due to Mrs J’s frequent COPD exacerbations, she spent more time in hospital than at home during this period. When she was at home PERT reviewed her 21 times. They provided follow up care after hospital discharges, and continued to monitor the effectiveness of her NIV, making changes to her NIV regimen when needed. They reviewed Mrs J’s medication, and gave advice to her daughter on how to manage this, as well as ongoing advice about symptom control and what to look for.
52. Our respiratory nurse adviser told us PERT’s involvement was comprehensive and regular enough to meet Mrs J’s needs. Appropriate self-management advice was provided, and input from PERT was in line with the type of service it is supposed to provide. We consider this demonstrates the Trust reviewed and met Mrs J’s changing health and needs in line with the NMC code. We saw no failing here.
53. To offer Ms P further reassurance, our respiratory nurse adviser has explained there is no evidence Mrs J’s deteriorating condition or hospital admissions were a result of the care provided. Instead, she sadly had severe COPD that was becoming progressively worse and this put her at higher risk of exacerbations and hospitalisation. She needed to go into hospital because the treatment she needed could not be delivered at home.
Complaint about the NIV machine
54. Ms P says her mother’s NIV machine was always alarming and would leak water. She feels it must not have been working correctly, and PERT did not recognise this, meaning her mother did not get the treatment she needed.
55. Our respiratory nurse adviser explained day to day it would be the responsibility of PERT to act on any issues identified with the NIV machine. The NMC code says nurses should preserve the safety of their patients and take any necessary action to deal with safety issues. In these circumstances, that would mean addressing and resolving any problems with the NIV machine if they arose.
56. Our respiratory nurse adviser explained all NIV machines have an alarm triggering system to identify problems such as limited flow of air through the machine, leaks from a poorly fitting mask, disconnection of the mask or tubing, or an internal machine fault.
57. Some alarms will stop if the fault is corrected (for example an air leak). However, problems with the machine itself will always remain visible until corrected. The machine includes a data card and information downloaded from this will show any alarms that have been triggered. Any machine faults are specifically highlighted in the information download.
58. Mrs J’s records show PERT were regularly downloading information from the data card. They reviewed the data to see if there were any alarms, if the prescribed therapy was being delivered, and how long the NIV was used for. They also kept records that show they physically checked the tubing, masks and filters, providing replacements where necessary.
59. The records indicate no machine fault alarms were identified. There were alarms for leaks and low pressure, and these were identified as being caused by poorly fitting masks and water condensation in the tubing. Advice and replacement parts were given to address this.
60. In addition to this, when PERT identified Mrs J was needing to use her NIV for much longer periods of time, a second NIV machine was provided to ensure she had access to ventilation should her machine develop a fault.
61. We understand why Ms P was concerned about her mother’s NIV machine, particularly as she was do dependent on it. We have seen no evidence Mrs J’s machine had any fault alerts or she was not receiving the prescribed treatment. PERT responded to any issues appropriately and that was in line with the NMC code. There is no failing here.
Care provided in hospital
Complaint about oxygen
62. In hospital people are provided with oxygen if their oxygen saturations (the percentage of oxygen in their blood) are low. In Mrs J’s case, her severe COPD meant the target range for her oxygen saturations was 88 to 92%.
63. This is supported by the NICE COPD guidance which explains giving too much oxygen to people with COPD, when their levels are over 92%, can impact breathing and cause a dangerous rise in their carbon dioxide levels. This can lead to respiratory failure which results in a drop in oxygen levels and can be fatal.
64. The records show Mrs J had her regular dose of long-term oxygen for the whole admission, except for two occasions on 7 and 8 October when her oxygen levels were above 92%. Our hospital nurse adviser confirmed it would not be appropriate to give oxygen to Mrs J if her levels were above 92% without it, due to the risks of respiratory failure.
65. We found the Trust acted in line with the NICE COPD guidance and there is no failing here. We hope this explanation reassures Ms P that her mother was not left without oxygen when she needed it.
Complaint about NIV
66. Earlier in 2022 Mrs J was only using NIV overnight for a set number of hours. As her COPD became worse over the year she was using it for longer periods, and by the time of her admission in October she was using it during most of the day too.
67. The approach to Mrs J’s care was palliative (where the focus is on managing a person’s symptoms as they deteriorate, rather than providing curative treatment). The records indicate the plan was for Mrs J to use her NIV as much as she wanted to, with no restriction on the number of hours.
68. We could see no evidence in the records that staff were only letting Mrs J use her NIV intermittently. The records say she was using NIV more or less constantly and could not tolerate being off NIV.
69. We could see staff documented some occasions where Mrs J was off her NIV, but these were generally because she had removed it herself or were short lived to allow the provision of essential care (such as limited medications or higher strength oxygen).
70. The NMC code says nursing staff must act in the best interests of patients. Our hospital nurse adviser said it was in Mrs J’s best interests to let her use the NIV whenever she wanted, and we can see this is what happened. We saw no failing here.
Complaint about oxycodone
71. Mrs J took oxycodone to help with her breathlessness. Before this admission to hospital Mrs J usually took 1mg of oxycodone as and when needed.
72. GMC guidance says doctors should take account of patient’s history when providing treatment. Our physician adviser explained this includes considering their usual medications and dose and prescribing them correctly on admission to hospital.
73. When Mrs J was admitted to hospital doctors prescribed 1mg oxycodone to be given only four times a day. This was less frequent than her usual prescription. There was no documented reason for this. We cannot say the Trust took account of Mrs J’s history. Although the Trust did amend the prescription 17 hours later, the initial prescription was not in line with the GMC guidance. We found this was a failing.
74. As a result of this, Mrs J may not have been able to have oxycodone as often as she needed it until the prescription was amended. However, as we explain below, it is also possible she would not have been able to have more doses even if it was prescribed correctly.
75. In looking to assess the impact the reduced dose had on Mrs J we have identified from the records there were many occasions Mrs J did not take oxycodone because she could not tolerate coming off the NIV due to it making her feel even more breathless. We are concerned about the lack of action taken to address this.
76. The NMC code says staff should make sure people’s physical needs are responded to, and refer matters to colleagues when any action, care or treatment is required. Our hospital nurse adviser explained if someone is unable to take a medication and their symptoms are not being addressed, nurses should escalate this to the medical team.
77. We have not seen any evidence this happened in Mrs J’s case, and we found this was a failing. Our physician adviser explained that had this been escalated to the medical team, they may have considered prescribing injectable oxycodone or something equivalent such as morphine.
78. It is possible that had this happened, Mrs J’s breathlessness could have been reduced and any distress or discomfort associated with this could be reduced too. It is difficult to say to what extent this could have been better as our physician adviser says it is also possible it would not have made any difference.
79. Ms P is concerned this contributed to her mother’s death. We can reassure her this is not the case as she was sadly gravely unwell from the start of her admission. However, we saw the lack of escalation to the medical team meant there was a missed opportunity to consider alternatives which may have better managed her symptoms. This should have been the priority given the palliative approach to her care.
80. We recognise this information will be upsetting for Ms P, who was understandably worried about her mother’s symptoms. At the end of this report we set out what the Trust should to do put things right for her.
Complaint about nutrition
81. Mrs J had very limited oral intake during this admission. It is difficult to see from the records exactly how much food was offered, however staff noted Mrs J declined food because she could not come off the NIV mask. Our physician adviser and hospital nurse adviser also said her refusal of food was likely a reflection of her deteriorating clinical condition and an indication she was sadly dying.
82. For the general population, the NICE nutrition guidance says nutrition support should be considered in people at risk of malnutrition who have eaten very little or are likely to eat very little over the next five days. Our hospital nurse adviser explained nutrition support would be feeding via a nasogastric (NG) tube which goes from the nose into the stomach.
83. We can see this would not have been suitable in Mrs J’s circumstances. Our physician adviser explained Mrs J could not have been fed though an NG tube. She needed to keep her NIV mask on, and an NG tube would have prevented a tight seal and reduced the effectiveness of her NIV and causing additional breathlessness and discomfort.
84. We found did the Trust did not fail to provide adequate nutritional support as the only option available was not suitable. We understand why this was a worry for Ms P, and we hope the explanation provided here helps her see the reasons for her mother’s lack of oral intake.