17. It is our role to decide whether NHS England’s IRP acted in line with the National Framework when it considered whether Mrs K was eligible for CHC. The National Framework sets out the principles and processes ICBs 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 clinicians’ 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 made 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 ICB reconsiders if the patient had a primary health need, and • recommend the ICB 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.
21. Mr K says the IRP wrongly refused to consider a second DST the ICB completed in 2022 even though he believes this would have made a difference to its overall eligibility decision. Mr K also says the IRP should not have made its decision because it did not have a number of records which were key to understanding his wife's needs. He said it did not have his wife's annual consultant records, as it only looked at records from the three months before the DST. He says NHS England did not ensure it had crucial records such as his wife’s district nursing and social care records.
22. The IRP said it could only consider the eligibility decision Mr K was complaining about, which was informed by the April 2021 DST. But it said the information from the second DST was in the pack of information sent to the IRP for consideration. It said it had queried with the ICB that it had not sent the district nursing and social care records.
23. We can see from the records the later 2022 DST was in the IRP’s pack of information. Mr K was also able to tell the IRP what it said and how that could affect the eligibility decision at the IRP meeting. The National Framework says an IRP can only consider the particular primary health need decision being challenged, so it could not make a decision based on the 2022 DST at this meeting. That was detail about a point after the April 2021 assessment. But we can see it was aware of what had happened in 2022, including the views the ICB and Mr K gave.
24. We can also see from the records the IRP did not have all of the records it requested. The records show the IRP asked the ICB about this in June 2024. It was particularly concerned it did not have district nursing or records from the carers who visited Mrs K at home at the time of the assessment. The records show the IRP did have Mrs K's GP records, plus records from a meeting with her multiple sclerosis clinical nurse specialist, hospital in- and outpatient records, neurology, blood and osteoporosis notes and records from a consultant in rehabilitation medicine. The records available to the IRP included details of Mrs K’s medication regime.
25. It is not clear from the records how often the ICB asked the care organisation and NHS Trust for the relevant records. But we can see from the records it did so on at least nine occasions after April 2021 up to the IRP meeting. The NHS Trust told it in August 2023 there were no records from the period for it to send the ICB for a number of areas, including district nursing records, falls and care home services, mental health records and community services. This means there was never anything for the IRP to consider about these areas. The IRP accepted this was the case.
26. The care organisation told the ICB in August 2023 it had lost the relevant records for the period under review. It is not clear when it initially lost them, which may have been before the first DST. We appreciate this meant key evidence could not then be considered, which was very frustrating for Mr K. But the records from the carers who visited Mrs K at home were simply not available for the IRP to consider.
27. We asked our adviser about this. They said there are occasions where an ICB or IRP cannot get hold of all the records they request. They said the IRP should proceed if the ICB can show it had genuinely tried to obtain records. The National Framework says an IRP can go ahead if it has access to the views of key parties and should consider all the available evidence. The records indicate that was the case here.
28. We appreciate the ICB not being able to provide all of the records to the IRP was very frustrating and worrying for Mr K. We can see the IRP did have a good variety of records and information on which to base its decision. It considered records which were within the period it was considering, which is what we would expect it to do. When we weigh up the evidence, we think it acted in line with the National Framework in making its decision without further information here.
Domains
29. Mr K has told us he disagrees with how the IRP considered the nutrition, mobility, psychological and emotional needs, behaviour cognition, behaviour drug therapies and medication and alternative states of consciousness domains. We have looked at how the IRP considered these in turn.
Nutrition
30. Mr K disagrees with the IRP’s weighting of this domain. He says it should have been moderate, but the IRP weighted his wife’s needs as low. Mr K says his wife needed to be supervised when eating to ensure she did not choke and that he had to make all her meals for her. He said she occasionally coughed when eating.
31. The IRP said Mrs K had a normal diet, could feed herself, but needed help in cutting up some food. It said there was no evidence she was at nutritional risk or required expert input about this domain.
32. The descriptor for a low weighting for this domain is:
‘Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).
or able to take food and drink by mouth but requires additional/supplementary feeding.’
33. The descriptor for a moderate weighting is:
‘Needs feeding to ensure adequate intake of food and takes a long time (half an hour or more), including liquidised feed.
or Unable to take any food and drink by mouth, but all nutritional requirements are being adequately maintained by artificial means, for example via a non-problematic PEG.’
34. We asked our adviser about this. They said the records did not show Mrs K had any other care needs when eating than needing supervision. The records do not show she needed a specific diet, such as soft food and she did not need her drinks thickened. She could feed herself and, if she did need to cough when eating, the records show she was usually able to clear the problem herself or could do so after a gentle pat on the back.
35. We appreciate Mrs K’s difficulties with eating and drinking were upsetting for Mr K. When we weigh up the evidence, we have not seen indications of what the IRP would have needed to see to give a higher weighting here. We think it considered the relevant evidence in detail, including Mr K’s concerns. Based on the evidence it had, the IRP’s rationale for its decision appears to be sound and in line with the DST. We have not seen indications of a failing regarding its decision in this domain.
Mobility
36. Mr K disagrees with the IRP’s weighting of this domain. He says it should have been severe, but the IRP weighted Mrs K’s needs as high.
37. Mr K says his wife’s osteoporosis diagnosis and poor mobility best fit the severe descriptor. He said the care package in place did not always meet her needs in this domain. He said Mrs K had had several falls around the time of the original DST.
38. The IRP said she could weight bear and could pull herself up and transfer using a rotunda (a piece of equipment to help with transfers). She could use a Zimmer frame to walk a few steps but was at risk of falls. It said she did not need a sling hoist. It said her positioning was not crucial nor was she at risk of physical harm when transferring position.
39. The descriptor for a high weighting for this domain is:
‘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.’
40. The descriptor for a severe weighting is:
‘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.’
41. We asked our adviser about this. They said the records showed Mrs K needed supervision when mobilising. Carers needed to be aware she could be impulsive and try to stand up and walk without waiting for support, which had caused her to fall. They said the IRP had considered the moderate descriptor because Mrs K could mobilise, but chose the higher weighting because of her high risk of falls.
42. To award a severe weighting for this domain, the IRP would have needed to see evidence Mrs K was either completely immobile or that her condition led to a high risk of serious harm where her positioning was critical. We have not seen evidence to support a weighting of severe here. We understand Mr K’s concerns about his wife’s mobility. Her falls were undoubtedly very upsetting and distressing to see. When we weigh up the evidence, we cannot say the IRP did not make its decision in line with DST. We do not think it got something wrong here.
Psychological and emotional needs
43. Mr K disputes the IRP’s weighting of this domain as moderate. He says it should be high. He says his wife was withdrawn and he had to do everything for her, including making decisions about her care. He said she would often actively refuse to take part in activities.
44. The IRP said Mrs K could withdraw from activities at the day centre, but also sometimes participated actively. It said she had episodes of low mood and anxiety and was prescribed mood stabilisers. She could be tearful and withdrawn. It said she could engage at times with persuasion and reassurance.
45. The descriptor for a moderate weighting for this domain is:
‘Mood disturbance, hallucinations or anxiety symptoms, or periods of distress, which do not readily respond to prompts, distraction and/or reassurance and have an increasing impact on the individual’s health and/or well-being.
or Due to their psychological or emotional state the individual has withdrawn from most attempts to engage them in care planning, support and/or daily activities.’
46. The descriptor for a high weighting is:
‘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.’
47. We asked our adviser about this. The records indicated Mrs K did need reassurance and prompting for her anxiety about visiting the day centre. She would sometimes say she did not want to go, but appears to have enjoyed taking part in activities once she was there. Our adviser said the records did not indicate Mrs K had other care needs related to this domain.
48. We appreciate Mrs K’s needs in this domain were frustrating for her husband. When we weigh up the evidence, we think the IRP took account of both her disassociation and lack of motivation about her care and activities and acknowledged she responded on most occasions to reassurance. We have not seen indications of her needs having a severe impact on her health or wellbeing or that Mrs K had totally withdrawn from care planning, support or daily activities as per the high weighting descriptor. We do not think the IRP got something wrong when it made its decision on this domain. We think it was in line with the DST.
Cognition
49. Mr K disagrees with the IRP’s weighting of this domain. He says it should have been severe, but the IRP weighted Mrs K’s needs as high. He says her short-term memory, ability to plan and to make decisions were strongly affected. He said she had no understanding of risk and could not retain information.
50. The IRP said Mrs K had had a limited level of understanding about what was happening and a limited ability to make simple choices at the time of the DST, but could not recognise risks. It felt this meant her needs were more appropriately weighted as high rather than moderate.
51. The descriptor for a high weighting for this domain is:
‘Cognitive impairment that could, for example, include frequent short-term memory issues and maybe disorientation to time and place. The individual has awareness of only a limited range of needs and basic risks. Although they may be able to make some choices appropriate to need on a limited range of issues they are unable to consistently do so on most issues, even with supervision, prompting or assistance. The individual finds it difficult even with supervision, prompting or assistance to make decisions about key aspects of their lives, which consequently puts them at high risk of harm, neglect or health deterioration.’
52. The descriptor for a severe weighting is:
‘Cognitive impairment that may, for example, include, marked short or long-term memory issues, or severe disorientation to time, place or person. The individual is unable to assess basic risks even with supervision, prompting or assistance, and is dependent on others to anticipate their basic needs and to protect them from harm, neglect or health deterioration.’
53. We asked our adviser about this. They said the IRP acknowledged Mrs K had short term memory problems and was unable to carry out some functions to do with memory and planning. She needed to be reminded not to stand up by herself, showing she had difficulty with assessing risks and remembering instructions.
54. The records also show Mrs K gave consent to the CHC assessment process, was able to answer some questions and could make some decisions for herself. Aside from trying to mobilise, there was no evidence of Mrs K engaging in other risk taking behaviour or decisions.
55. Mrs K’s cognitive decline was clearly very upsetting for Mr K and undoubtedly means she has needs in this domain. She could make some decisions for herself about her needs. The records also showed she was able to remember some things and was not severely disorientated to time or place. When we weigh up the evidence, we do not think the ICB got something wrong when it made its decision on this domain. Mrs K’s presentation did not demonstrate what the ICB would need to see to award a severe weighting here. We think it made its decision in line with the DST.
Behaviour
56. Mr K says his wife’s needs in this domain were severe. The IRP weighted them as low. Mr K said his wife could be very challenging and regularly put him at risk. She would not cooperate with transfers using the rotunda and could be very stubborn and verbally abusive.
57. The IRP said the records did not evidence any physical or verbal aggression. The IRP felt carers had not had any particular challenge in delivering Mrs K’s care due to her behaviour. It said no risk assessments about this were available.
58. The descriptor for a low weighting in this domain is:
‘Some incidents of ‘challenging’ behaviour. A risk assessment indicates that the behaviour does not pose a risk to self, others or property or create a barrier to intervention. The individual is compliant with all aspects of their care.’
59. The descriptor for a severe weighting is:
‘‘Challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.’
60. We have not set out the weighting descriptors in between these, but we have noted then in case the evidence supported this rather than what the IRP or Mr K thought.
61. We asked our adviser about this. They said the IRP had acknowledged Mrs K could be verbally abusive and abrasive and that Mr K often bore the brunt of this as her primary carer. Mr K’s evidence indicated his wife had become less inhibited around him.
62. We can see from the records Mrs K’s care was managed by a single carer. The records do not indicate her behaviour required prompt or skilled responses outside the range of planned interventions, or that her behaviour caused a significant risk to herself, others or property. This is what we would expect if the ICB should have awarded a severe weighting here.
63. We think the IRP’s weighting of this domain was in line with the evidence and the descriptors. We understand how upsetting Mrs K’s behaviour was for Mr K. When we weigh up the evidence, we have not seen indications her behaviour formed a barrier to how carers delivered her care. We do not think the IRP got something wrong here. Its decision appears to be in line with the DST.
Drug therapies and medication
64. Mr K disagrees with the IRP’s weighting of this domain. He says it should have been severe, but the IRP weighted Mrs K’s needs as high. Mr K says he had had training to give Mrs K injections for her osteoporosis and her fampridine medication (given to people with walking difficulties) needed to be administered extremely carefully and had a range of dangerous side effects.
65. The IRP agreed her medication regime was not straightforward. It was time sensitive and the side effects of one medication required particular attention. It said it was not problematic to manage nor were there reasons why monitoring could not take place.
66. The descriptor for a high weighting for this domain is:
‘Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. However, with such monitoring the condition is usually non-problematic to manage.
or Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care.’
67. The descriptor for a severe weighting is:
‘Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for this task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. Even with such monitoring the condition is usually problematic to manage.
or Severe recurrent or constant pain which is not responding to treatment.
or Non-compliance with medication, placing them at severe risk of relapse.’
68. We asked our adviser about this. They said the IRP acknowledged Mr K had been specifically trained to administer some of Mrs K’s medication. This indicates there were risks associated with her medication regime. When we look at the records, we have not seen indications Mrs K suffered any adverse side effects to her medication regime or was experiencing severe and intractable pain. The evidence does not indication her medication was problematic to manage.
69. It is clear Mrs K’s medication required specific instructions and needed real care in its management. We appreciate why Mr K feels her needs here are severe. When we weigh up the evidence, we think the IRP made its decision in line with the DST. We have not seen indications Mrs K was at severe risk of relapse or did not respond to treatment. There is no indication of what the IRP would have needed to see to give a higher weighting. We have not seen indications of a failing here.
Altered states of consciousness
70. Mr K disagrees with the IRP weighting of this domain as no needs. He says its weighting should have been high. He says his wife experienced absences and could be unresponsive, which sometimes led to him calling an ambulance.
71. The IRP said there was no evidence Mrs K having altered states of consciousness had been raised by a neurologist, or a mental health team. She had not been to hospital for this.
72. The descriptor for no needs for this domain is:
‘No evidence of altered states of consciousness (ASC).’
73. The descriptor for high needs is:
‘Frequent episodes of ASC that require the supervision of a carer or care worker to minimise the risk of harm.
or occasional ASCs that require skilled intervention to reduce the risk of harm.’
74. We have not set out the weighting descriptors in between these, but we have noted them in case the evidence supported this rather than what the IRP or Mr K thought.
75. We asked our adviser about this. They said the evidence supported the IRP’s decision on this domain. The evidence did not indicate Mrs K experienced seizures or any form of strokes, including transient ischaemic or syncopal attacks (a sudden lack of consciousness). The records did not say she suffered from blackouts. There was nothing, for example, in her GP records about this and no record that she needed the supervision of carer or skilled interventions because of the risk of harm to her in this area.
76. We appreciate Mr K’s concerns about his wife’s needs in this domain. When we weigh up the evidence, we have not seen indications of what the IRP would have needed to see to give a higher weighting. We have not seen indications of a failing regarding its decision in this domain. We think it made it in line with the DST.
The four key characteristics
77. The IRP also applies an eligibility test to help it make a decision about a person’s CHC eligibility. This is called the four key characteristics – the nature, intensity, complexity and unpredictability of their needs. 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. This is not a reconsideration of a person’s specific needs in each domain.
78. 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 are not meant to be strictly applied and are there to guide the IRP’s considerations. It does not have to consider them exactly as laid out in PG3. We use these questions when we are looking at whether the IRP properly considered the key characteristics of a person’s needs. We have also considered what the IRP did with regards to our view on the psychological and emotional needs domain, as we described above.
79. Mr K also disputes the IRP's decision on each of the four key characteristics. He says it did not consider the interactions of the domains in each characteristic sufficiently, or that the local council had consistently told him it could not provide for Mrs K’s care needs.
Nature
80. For the nature characteristic, the National Framework says the IRP must consider the particular characteristics of an individual’s needs (which can include physical, mental health, or psychological needs), and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.
81. We asked our adviser about this. We can see the IRP explained the nature of Mrs K’s needs in detail in its report. We can see it considered how these interact and what care is needed for them. Our adviser said the IRP said Mrs K had more than one health need and the features of dementia, but she was still able to interact with people and was continuing to live in her own home with the support of only one carer.
82. The IRP said Mrs K’s care was not above what a local authority could provide. We can see it described how her care needs were met by local carers and the NHS. When we weigh up the evidence, we think the IRP considered all the relevant evidence and how this related to her needs as robustly as we would expect. We think the IRP acted in line with the National Framework and DST when making its decision on the nature of Mrs K’s needs.
Intensity
83. The National Framework says the intensity characteristic is about both the extent (‘quantity’) and severity (‘degree’) of the needs and the support required to meet them, including the need for sustained or ongoing care (‘continuity’).
84. We asked our adviser about this. When we look at the records, we can see Mrs K’s care was delivered by carers following a care plan that had been assessed, planned and monitored by the registered managers of the care providers and her carers within her own home, and the GP was consulted when required. We can see the IRP’s report considered whether her needs could be met by her carers or if she needed specialist interventions, which she did not.
85. When we weigh up the evidence, we think the IRP considered all the relevant evidence and how this related to her needs as robustly as we would expect. We think the IRP acted in line with the National Framework and DST when making its decision on the intensity of Mrs K’s needs.
Complexity
86. The National Framework says the complexity characteristic is concerned with how the person’s needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage their care. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as where a physical health need results in the individual developing a mental health need.
87. We asked our adviser about this. They said there were interactions between Mrs K’s needs across the domains which were influenced by her underlying conditions. We can see the IRP referred to these in its report. We can also see it considered if specialist or particular skills were needed to manage her care. It noted her needs did not require a highly individualised approach or a care regime which was likely to change often.
88. Our adviser said the records did not indicate Mrs K’s care was difficult or complex to manage and she did not need specialist care, such as we would expect if her needs were complex. When we weigh up the evidence, we think the IRP considered all the relevant evidence and how this related to her needs for this characteristic as robustly as we would expect. We think the IRP acted in line with the National Framework and DST when making its decision on the complexity of Mrs K’s needs.
Unpredictability
89. The National Framework says the unpredictability characteristic is about the degree to which needs fluctuate and thereby cause challenges in their management. It does not mean whether everything a patient does can be predicted. Therefore, whether a specific individual event can be anticipated is not in itself an indication of whether a person has a primary health need in this characteristic.
90. We asked our adviser about this. They said the IRP considered the evidence presented. There were interactions between Mrs K’s domains which were influenced by her underlying conditions. But the records do not show her needs fluctuated unduly on a daily basis. Her care did not have to change suddenly. It followed a natural format that was appropriate to her underlying conditions.
91. The IRP appears to have described her needs here in line with what the evidence shows. We have not seen indications of the things we would expect to see which would have indicated to the IRP that Mrs K’s needs were unpredictable. When someone has unpredictable needs, we would expect to see frequent or sudden changes in their care plans, or frequent need for carers to intervene outside of the care plan. There is no indication this was the case for Mrs K. The IRP considered that she could be anxious and stubborn and needed reassurance. When we weigh up the evidence, we think the IRP acted in line with the National Framework when making its decision on this characteristic.
92. We understand why Mr K thinks Mrs K had a primary health need at the time the ICB assessed her. She was clearly not well. When we weigh up the evidence, we think the IRP report explained Mrs K’s needs and how they interacted in detail for each characteristic. We think it did consider the care she had from her carers and local NHS providers. The report considered the questions for each characteristic as we would expect it to and provided a detailed explanation of why it made its decision. We have not seen any indication her needs or care plan to deal with these changed suddenly or unexpectedly or that her care was particularly difficult to manage. Her carers, including Mr K, appear to have known how to deal with her and did not need a higher level of skill or training to do this.
93. We recognise how stressful this process and Mrs K’s condition and needs were for her and Mr K. We hope our decision reassures him that the IRP made its decision as it should.