15. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that something has gone wrong.
16. CHC describes care provided over an extended period of time to meet physical or mental health needs arisen as a result of disability, accident or illness. If someone meets the criteria to receive funding, their care will be funded by the NHS.
17. It is our role to decide whether NHS England’s IRP acted in line with the National Framework when it considered whether Mrs I was eligible for CHC. The National Framework sets out the principles and processes ICB’s and NHS England should follow when considering if someone is eligible for CHC.
18. We cannot consider the discretionary decisions the IRP made when it decided on eligibility. This includes the decisions it makes based on clinical judgement and clinician’s opinions. We can only consider if the IRP has followed the National Framework. This means we can only uphold a complaint about a CHC eligibility decision if we find the IRP did not follow the National Framework when it made its decision.
19. The IRP reviews if the ICB should have found the person to have a primary health need and therefore be eligible for CHC. It also reviews the ICB’s procedures when it was coming to its eligibility decision to make sure it was acting in line with the National Framework. If the IRP does find the ICB made a mistake, it can:
• recommend the CCG reconsiders if the patient had a primary health need, and • recommend the CCG addresses any procedural faults the IRP identified.
20. When we look at a complaint about an IRP, we consider if it took into account all the relevant information when it made its eligibility decision. To help us make a decision, we consider four key areas.
Did the IRP get all the relevant evidence?
21. Paragraph 199 of the National Framework says ‘the key elements involved in considering requests for independent reviews of NHS CHC eligibility include: scrutiny of all available and appropriate evidence as described in the local resolution section’.
22. We have reviewed the information provided to us in NHS England’s case file and we can see the IRP had access to the following:
• a summary of Mrs I’s case including a chronology of events • local resolution meeting minutes and letters • multi-disciplinary team (MDT) decision letter dated 16 June 2016 • decision support tool 10 May 2022 • clinical review dated 23 November 2022 • checklist assessment • general correspondence including Dr R’s submissions and appeal • St Joseph’s Hospice records • GP records • social services records • hospital records • mental health records • other professional records including community nurse records.
23. We also have a copy of the IRP’s report. The report documents the submissions Dr R gave in person.
24. It is clear the IRP had access to all the information the ICB used to make its decision on 14 June 2022. It gave Dr R an opportunity to provide verbal evidence during the meeting on 21 March 2023 and had access to his written submissions. The IRP also received Mrs I’s medical records from the ICB which demonstrated her needs during the review period.
25. We can see there are no obvious omissions in the documents and evidence NHS England considered. We are satisfied there is no indication of a failing in how the IRP established all the appropriate and relevant clinical facts. The IRP had access to information clearly detailing Mrs I’s needs. We saw the IRP acted in line with paragraph 199 of the National Framework here.
Before it made its decision, did the IRP consider all the relevant evidence?
26. Paragraph 199 of the National Framework is also relevant to this part of the IRP’s considerations.
27. We have looked at the information in the IRP report and considered how the panel discussed all the available evidence when it was weighing up the disputed domains. We can see the IRP discussed Dr R’s written and verbal evidence. This is clearly detailed in section five and seven of the IRP report where it outlines Dr R’s views on each individual domain that he disagreed with.
28. We can see the IRP also considered the information in Mrs I’s medical records. When it explained its weighting for each domain, it refers to specific pieces of information it taken from the medical records. We can also see the IRP had the National Framework in mind when it discussed its weighting of each domain and key characteristic. Paragraph 199 of the National Framework is also relevant to this part of the IRP’s considerations, and we saw it acted in line with this guidance here.
Did the IRP clearly explain how it had reached its decision?
29. Dr R has told us he disagreed with how the IRP considered two of the domains the health service uses to determine a person’s care needs.
Mobility
30. Dr R has told us and the IRP said his mother’s needs in the mobility domain were severe. The ICB and IRP both weighted this domain as high. Dr R said Mrs I was completely immobile at times.
31. The DST defines a high level of need in the mobility domain as:
‘Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning.
OR Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate.
OR At a high risk of falls (as evidenced in a falls history and risk assessment).
OR Involuntary spasms or contractures placing the individual or others at risk’.
32. The DST defines a severe level of need in the mobility domain as: ‘completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical’.
33. Dr R said his mother was completely immobile. He said his mother could not turn in bed and had contractions in her left hand. She could use her right hand to hold a beaker but could not move her head towards it. He said the carers could not put his mother in a sling because it was too risky due to her frailty and osteoporosis (brittle bones). He said his mother had brittle bones and could break a limb. He considered her need was more than high and slightly below severe.
34. The IRP said the care plans and daily records indicated Mrs I was completely unable to weight bear and unable to assist with transfers or positional change. Although on admission to St Joseph’s hospice she was initially able to sit out of bed, by the time of the MDT meeting she was unable to sit out and was nursed in bed.
35. The care plans and daily records indicate two staff and a slide sheet were required for all repositioning. She had limited use of her arms for feeding and drinking.
36. Our adviser said it is noted Mrs I was completely unable to weight bear (she could not put weight through her legs and therefore would not be able to mobilise) and she required positioning in her bed every four hours to prevent complications arising.
37. The DST dated 10 May 2022 notes she was in bed, unable to weight bear and did not tolerate sitting out. It further notes she had poor sitting balance. It was noted she had her bed set to the lowest position when not receiving interventions and she had not attempted to climb over the bed sides and she had experienced no falls. Our adviser said there is no evidence to support Mrs I’s needs were of a level that would warrant the score of severe and the ICB scored her appropriately at high needs.
38. The ICB representative said there was no evidence Mrs I was at high risk of serious physical harm. Positioning was not critical. There was no physiotherapy or occupational therapy input and no specific care plans in place. Although she was at risk of falls there were no recorded falls in the hospice. The IRP reviewed care plans and daily records for Mrs I with regard to her mobility. There was no evidence that on movement or transfer there was a high risk of serious physical harm and no evidence that positioning was critical. The IRP decided Mrs I had a high level of need.
39. The IRP report shows a detailed discussion of Mrs I’s mobility needs at the IRP meeting. Dr R gave his account of her needs and the IRP weighed up whether this indicated a higher weighting.
40. We saw the IRP acted in line with the National Framework when it considered Mrs I’s mobility needs. We acknowledge Dr R feels her mobility need was severe because she was sometimes completely immobile.
41. The DST defines the severe level of need in the mobility domain as completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical.
42. We can see Mrs I needed a lot of support to mobilise, but there is no indication she was completely immobile. This is reflected in care plans and daily records. She was unable to weight bear and unable to assist with transfers. Two staff and a slide sheet were required for all repositioning and Mrs I had limited use of her hands for feeding and drinking.
43. The high domain descriptor captures more significant mobilising needs than this. But the high domain descriptor includes the person was unable to weight bear and unable to assist with transfers and repositioning, as Mrs I was. There was no evidence that on movement or transfer there was a high risk of serious physical harm and no evidence that positioning was critical. This is why the IRP felt it best reflected her needs. We can see no indication of failings in how the IRP considered this domain.
Psychological and emotional
44. Dr R felt his mother’s needs in this domain were high. The ICB said her needs in this domain were low and the IRP weighted it as low too.
45. Dr R said on occasions when he visited, his mother would appear to be talking to someone who was not there. He also said she could become upset with him but could be reassured and calmed. He noted she had previously been prescribed anti-depressants, but these were discontinued because they made her sleepy. He said on occasions his mother said she wanted to die. Dr R said his mother had withdrawn from any attempts to engage her due to her cognitive impairment. He said this represented a high level of need.
46. The IRP considered Mrs I’s needs were consistent with the DST’s low definition of the psychological and emotional domain. The DST says this means:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which are having an impact on their health and/or well-being but respond to prompts, distraction and/or reassurance OR Requires prompts to motivate self towards activity and to engage them in care planning, support, and/or daily activities’.
47. The DST defines high as:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, that have a severe impact on the individual’s health and/or well-being OR Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities’.
48. The IRP noted that daily records and care plans did not show any evidence of low mood or hallucinations. Daily records reported her to be in bright or pleasant mood, no anxiety, no agitation where reference was made to mood.
49. The IRP noted Mrs I’s inability to engage with care plans or activities was due to her severe cognitive impairment. Her needs in relation to her cognition were recognised in the cognition domain.
50. There was no evidence this was due to her psychological or emotional state. Although care home records did not record mood disturbance the IRP considered the mood disturbance reported by Dr R represented a low level of need. The IRP concluded Mrs I had a low level of need.
51. Mrs I’s daily care records show she ‘settled well between interventions’ and she had many days when she was described as ‘chatty’, ‘bright and cheerful’, ‘had a lovely afternoon’ and she had ‘settled nights’.
52. We saw one incident where Mrs I is described as unsettled during the night on 15 February 2022, she was shouting out she was dying, the care staff offered reassurance and comfort in the way of positional change, continence care and a drink, to which she responded and settled back to sleep again.
53. Mrs I was prescribed zopiclone which is prescribed for poor sleep patterns and insomnia but she had no prescription for antidepressant or antipsychotic medication. Our adviser said there is no evidence to suggest Mrs I’s psychological state posed a barrier to her receiving care to meet her daily needs.
54. The report shows the IRP had a detailed discussion about Mrs I’s needs. It weighed up what Dr R said and considered if a higher weighting would be appropriate.
55. The panel acknowledged it was difficult to separate Mrs I’s psychological and emotional well-being needs from other needs, such as her cognitive impairment. It considered what Dr R had said about his mother’s hallucinations but considered this to represent a low level need.
56. We saw the IRP followed the National Framework when it considered Mrs I’s psychological and emotional needs domain. The difference between the low and high descriptors in this domain is the impact of hallucinations, mood and anxiety on the person’s health or wellbeing, and how far they have withdrawn from attempts to engage them.
57. Dr R said his mother could be reassured and calmed. The IRP noted her needs in relation to her cognition were recognised in the cognition domain. The report clearly explains why, based on the evidence including Dr R’s account, the IRP felt her hallucinations, mood and anxiety was not having a severe impact on her health and wellbeing. This is what it would have needed to see to decide her needs were high. We can see no indications of a failing in how the IRP considered this domain.
58. We have considered if the IRP did misinterpret Mrs I’s needs because of the level of care she was receiving. We saw the IRP correctly applied this principle. The IRP has detailed in its report the level of care Mrs I needed in each domain, and how the care she was receiving met this need. It had to do this to properly consider her needs. But we can see no indication the IRP said any of her needs were lower than they should have been because of how the carers met them. As we have set out above, we saw the IRP weighted each disputed domain in line with the evidence available to it.
Did the IRP apply the eligibility tests properly and reach an evidence based conclusion about them?
59. The IRP also applies an eligibility test to help it make a decision about a person’s CHC eligibility. The National Framework separates this test into four key characteristics: nature, intensity, complexity, and unpredictability. This test is used to establish if the quantity or type of a person’s care needs are more than what the local authority can provide. This indicates they have a primary health need, which in turn indicates they are eligible for CHC.
60. The National Framework sets out questions for the IRP to consider helping establish a person’s level of need. They are outlined in ‘Practice Guidance 3, When identifying a primary health need, how should the four key characteristics be approached?’ (PG3). The National Framework is clear the questions it provides are not meant to be strictly applied and are there to guide the IRP’s considerations. We use these questions when we are looking at whether the IRP properly considered the four key characteristics of Mrs I’s needs. Dr R has told us he disagrees with the IRP’s consideration of each of the four key characteristics.
Nature
61. The National Framework says this characteristic should ‘describe the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.’
62. We can see the IRP considered the nature of Mrs I’s needs at a level of detail we would expect to see and with PG3 in mind. The IRP has focussed on Mrs I’s individual needs rather than her diagnosed medical conditions. It discussed the impact of her needs on her health and wellbeing, establishing she was dependant on carers to meet all of her day to day needs.
63. Our adviser said the clinical evidence supports the decision made in respect of the nature of Mrs I’s presentation. The IRP considered the care plans and all other evidence in respect of her identified needs and found that although Mrs I had some challenges in regard her care, there was no indication she had a primary health need.
64. The IRP also looked at the types of care Mrs I needed to keep herself safe and well. The report sets this out in detail. It includes needs such as assistance with movement, assistance with feeding, assistance with managing her medication. Due to cognitive impairment, immobility, and double incontinence, Mrs I was at risk of pressure damage for which she was carefully monitored. The IRP weighed everything up before it concluded the nature of her needs was within the remit to social services.
65. We saw the IRP acted in line with the guidance set out in the National Framework when it considered the nature of Mrs I’s needs.
Intensity
66. The National Framework says this characteristic ‘relates both to the extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained/ongoing care (‘continuity’).
67. Our adviser said Mrs I’s care needs are assessed, planned and monitored by registered nurses and carers within the care home and the GP was consulted when required, however, her care was not intense in nature and did not indicate the presence of a primary health need.
68. The IRP’s report shows a detailed discussion about the intensity of Mrs I’s needs. This included considering how intense her needs were. It acknowledged that by the time of the assessment she needed two carers to transfer and manage her continence, washing, dressing and skin needs. Other tasks such as assisting with feeding or oral hygiene required one carer. There was no evidence in the daily records that carers found meeting Mrs I’s needs difficult or time consuming.
69. The IRP considered Mrs I’s routine daily care needs were well within the capacity of trained carers and did not find any evidence her needs were intense requiring additional staff input or sustained interventions lasting a long time. The IRP concluded her care needs were not intense. It weighed up all the evidence before it concluded the levels of care and monitoring required in these domains were not severe enough to determine a primary health need.
70. We saw the IRP acted in line with the National Framework when it considered the intensity of Mrs I’s needs.
Complexity
71. The IRP carefully considered the complexity of Mrs I’s level of need. The National Framework says, ‘this is concerned with how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care.’
72. Our adviser said whilst there were interactions between the domains, influenced by her underlying conditions, her care could be delivered by carers following a care plan that had been assessed, planned and monitored by a registered general nurse. There was no evidence to support her care was difficult and complex to manage, nor did she require regular, intensive input from a specialist team. Mrs I’s care was not complex in nature and did not indicate a primary health need was present.
73. The report shows us the IRP considered how difficult it was for the carers to manage Mrs I’s needs, and it established the care was not complex to deliver. The IRP report shows how the IRP considered the interaction of various combinations of Mrs I’s needs.
74. It said Mrs I’s care needs were clearly interrelated. Her severe cognitive impairment and immobility were closely related to all of her other care needs. Her lack of mobility combined with double incontinence put her at very high risk of skin breakdown. However, with appropriate regular preventive interventions her skin remained intact. Provided carers followed the appropriate care plans for each aspect of her care they did not encounter problems that required levels of knowledge, skill, or expertise beyond what could be expected of trained carers. Mrs I’s care planning required the oversight of a trained nurse but the actual day to day provision of care was well within the capacity of trained carers.
75. The IRP noted Mrs I had not required assessment or intervention by any specialist services except the speech and language therapy (SALT) team who assessed her needs and discharged her. The IRP did not find any evidence Mrs I’s needs were complex.
76. We can see the IRP weighed up all the evidence before it decided this key characteristic did not indicate a primary health need for Mrs I. It set out why it thought the level of skill needed to manage the interaction of her needs was not complex, or that any of the interactions posed a significant barrier to the carers looking after her.
77. We saw the IRP acted in line with the National Framework when it considered the complexity of Mrs I’s needs.
Unpredictability
78. The final key characteristic of a person’s level of need is unpredictability. The National Framework defines it as ‘the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.’
79. Our adviser said whilst there were interactions between the domains, influenced by her underlying condition, her care did not fluctuate unduly on a daily basis. Her care plans did not require frequent amendment. Her care followed a natural format that was appropriate to her underlying conditions. There was no evidence to support her care was unpredictable to manage.
80. The IRP has provided a detailed review of the unpredictability of Mrs I’s needs in its report and we can see the panel had PG3 in mind to inform its discussions.
81. The IRP noted, upon discharge from hospital, Mrs I was considered to be approaching end of life care and therefore her condition was likely to deteriorate rapidly. However, once in the hospice her condition stabilised. Mrs I’s condition gradually deteriorated while in St Joseph’s hospice. Although her condition was gradually deteriorating her day to day care needs remained largely unchanged. She continued to need carers to anticipate and meet all of her personal care needs, move her position, monitor her skin condition, and supervise her medication. Her care plans remained largely unchanged from month to month.
82. The IRP referred to Mrs I’s care plans, noting they were consistent. This is a key piece of evidence that showed the IRP that while her needs fluctuated, they were predictable and suggested she had a stable level of need.
83. Daily records did not show any fluctuations in care needs that might have required changes in management or rapid intervention. The IRP considered that although Mrs I’s condition was gradually deteriorating her care needs remained predictable.
84. We saw the IRP acted in line with the National Framework when it considered the unpredictability of Mrs I’s needs.
85. The IRP acted in line with the National Framework. This does not take away from the account Dr R has given us, or the challenges his mother faced towards the end of her life. We appreciate Mrs I was entirely reliant on the care she received, and we are pleased to hear she had a well-trained and dedicated team around her. The IRP’s conclusion that her care did not indicate a primary health need and fell within the remit of the local authority appears to be in line with the National Framework.
Other concerns
86. Dr R also told us:
• his concern that his mother’s GP said she had worsening dementia and very complex care needs • the disagreement between the social worker and the nurse about CHC funding.
87. In the note of the IRP meeting held on 21 Narch 2023, Dr R referred to the view of his mother’s GP that her needs were complex.
88. The IRP considered the letter from Mrs I’s GP stating she had worsening advanced dementia and very complex care needs. The IRP noted Mrs I’s GP was not part of the MDT meeting and therefore did not consider Mrs I’s needs in accordance with the National Framework for CHC. The IRP has fully considered the complexity of Mrs I’s needs. We are satisfied it acted in line with the National Framework. We understand it must be frustrating when his mother’s GP said she had complex needs and the IRP did not agree. The IRP’s conclusion that his mother’s GP had provided his view in accordance with the National Framework is correct. The GP did not form part of the MDT meeting.
89. Dr R told the IRP the social worker recorded the MDT recommended her mother was eligible for CHC, but this was then changed by the ICB. Dr R noted the social work report contained in the evidence file states the social worker and nurse assessor agreed a recommendation of eligibility for CHC. This was contrary to what was contained in the DST. The IRP was concerned about this discrepancy and raised the matter at the panel meeting.
90. The IRP noted the DST dated 10 May 2022 stated the MDT failed to reach agreement. The nurse assessor recommended Mrs I did not have a primary health need. The social worker was recorded as stating she did have a primary health need. The IRP also noted the social work record states the two assessors agreed Mrs I did have a primary health need.
91. The IRP was unable to determine the cause of these apparently contradictory statements. However, the record shows Mrs I’s case was considered by Sefton CCG’s CHC panel on three occasions between 10 May and 14 June 2022. The record indicates on the first consideration the case was referred back to the MDT for further information and consideration. The IRP noted the CHC panel considering Mrs I’s eligibility included a local authority representative. However, since the deliberations of the CHC panel were not minuted the IRP was unable to determine the nature of the decision making process resulted in a decision letter being sent to Dr R on 14 June 2022.
92. When Dr R appealed the outcome of the assessment of eligibility for CHC the case was passed to NHS Midlands and Lancashire Commissioning Support Unit (CSU) to process the appeal. The IRP was satisfied the appeal process undertaken NHS Midlands and Lancashire CSU was thorough and evidence based. The IRP noted the CSU procedures for local resolution do not include local authority or social work representation. In light of the disagreement between the social worker and nurse assessor at the MDT meeting the IRP considered it would have been desirable to have a local authority or social work representative to attend the local resolution meeting (LRM). At the IRP meeting the chair asked the ICB representative to explain the decision making process that had taken place following the MDT meeting on 10 May 2022. The representative was unable to answer questions on this matter because the CSU was concerned only with the appeal and LRM process.
93. The IRP recommended NHS Cheshire and Merseyside ICB review its assessment and decision making procedures to ensure ‘the decision making process on eligibility for CHC at the panel stage is properly minuted’.
94. The IRP also recommended NHS Midlands and Lancashire CSU acting for NHS Cheshire and Merseyside ICB in appeals, review its procedures for local resolution to ‘consider whether local authority or social work representation in the local resolution process would be desirable in cases where there has been disagreement at the MDT meeting’.
95. We are satisfied the IRP acted in line with the National Framework. We understand it must be frustrating when there were conflicting views about his mother’s care needs. This information did not change the IRP’s decision of the appeal, but it did highlight learning for the ICB.
96. We have considered if the IRP looked at the appropriate evidence when reaching its view that the ICB’s decision was sound. We appreciate the helpful evidence Dr R has given to us. We thank him for sharing this with us. We recognise how important his complaint is to him. We understand the distress these issues have caused Dr R and recognise the heartbreaking circumstances of his complaint. We hope he is reassured by our view that NHSE acted in line with the National Framework when it reached its decision.