15. Before we set out our decision, we would like to explain how an IRP reaches its decision and what this means for how we look at it.
16. An IRP is a panel set up by NHS England that completes a review of:
a) the primary health need decision made by an ICB or b) the procedure followed by a ICB in reaching a decision as to that person’s eligibility for CHC.
17. The IRP then makes a recommendation to NHS England in light of its findings.
18. Whether or not an individual is eligible for NHS continuing healthcare funding is a discretionary decision. It is our role to decide if the IRP made its decision in line with the National Framework.
19. When looking at complaints about IRP decisions, we consider four key questions.
Did the IRP get all the relevant evidence?
20. Paragraph 219 of the National Framework says the following:
‘the key elements involved in considering requests for independent reviews of NHS Continuing Healthcare eligibility include: scrutiny of all available and appropriate evidence as described in the Local Resolution section.’
21. 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:
• Mrs V’s care home records, GP records, district nursing records, diet and hospital records • correspondence from Mrs U which includes her views and concerns about her mother’s eligibility for CHC funding and the ICB’s processes and actions • the decision support tool (DST) and local resolution meeting documentation.
22. 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 V’s needs in the period under consideration.
23. Mrs U raised concerns the ICB did not look at a long enough period of time when it made its decision. We can see the care home records only cover one month before 24 August 2022, as that was how long Mrs V had been at the home when the ICB completed the DST. But we can also see it asked for other records to cover a period of three months leading up to the assessment. We can see, for example, Mrs V’s GP records go back to 20 May 2022, and a dietary information sheet to 9 June.
24. We understand why Mrs U was worried about whether the IRP had considered enough information to make a fair decision on Mrs V’s eligibility for CHC. When we weigh up the evidence, we think the IRP had sufficient information and records to make a robust decision. We think the IRP acted in line with paragraph 219 of the National Framework here.
Before it made its decision, did the IRP consider all the relevant evidence
25. The IRP report and notes show it considered how the panel discussed all the available evidence when it was weighing up the disputed domains. We can see the IRP discussed Mrs U’s evidence, including with her on the day. We can see it included this in some detail across the domains and other parts of its report.
26. We consider Mrs U’s specific concerns about the particular domains below. We can see the IRP considered the information in Mrs V’s medical and care records. When it explained its weighting for each domain, it referred to specific pieces of information it taken from these. We can also see the IRP had the National Framework in mind when it discussed its weighting of each domain and key characteristic. It outlined how it weighted each domain and explained how its weighting was in line with the National Framework.
27. Paragraph 219 of the National Framework is also relevant to this part of the IRP’s considerations, and we think it acted in line with this guidance here.
Did the IRP clearly explain how it had reached its decision?
28. Under this question, we look at any disputed weightings in the care domains. Mrs U disagrees with how the IRP determined the nutrition, psychological and emotional needs and behaviour domains.
Nutrition
29. Mrs U disagrees with the IRP’s weighting of this domain as moderate. She says it should be high.
30. Mrs U says her mother had lost weight dramatically, going from a dress size of 16 to 8. She says Mrs V was on a food and fluid chart, her eating and drinking needed monitoring every 15 minutes and she needed a lot of encouragement to eat. Mrs V could take over half an hour to finish eating and sometimes fell asleep when doing so. Mrs U said her mother had a phobia of other people touching her food and her issues with fluid intake led to UTIs.
31. The IRP said Mrs V could feed herself independently but at times needed prompting and encouragement. It said her weight and BMI was consistent between 28 June and 15 July 2022. It said her fluid intake could be poor at times but otherwise she drank over a litre per day. It said she did not have a choking or swallow impediment or special diet.
32. The DST gives the following descriptor for a high weighting in this domain:
‘Dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.
or Subcutaneous fluids that are managed by the individual or specifically trained carers or care workers.
or Nutritional status “at risk” and may be associated with unintended, significant weight loss.
or Significant weight loss or gain due to identified eating disorder.
or Problems relating to a feeding device (for example PEG) that require skilled assessment and review.’
33. It gives the following descriptor for a moderate weighting:
‘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. The records show Mrs V’s intake of food and drink was variable and she was paranoid about people touching her food. They said the evidence shows Mrs V needed support and encouragement to eat and drink. Our adviser said when she was at home, Mrs V’s carers would prepare filled rolls for her which Mrs V could then eat when she wished. They said her eating improved once she moved into the care home and her diet record charts show she had a good intake of food. Our adviser said the records show Mrs V continued to feed herself.
35. Our adviser also said the records show Mrs V’s BMI range (which compares height with weight) indicated she had a healthy weight at the time of the assessment. They said the IRP could have even considered a weighting of low for this domain, as Mrs V ate and drank herself but needed supervision and prompting. We do not think it was wrong to err on the side of caution, but we include this to show that, based on the evidence, if there had been a question about the right weighting, it would have been between low and moderate.
36. We understand why Mrs U was concerned about Mrs V’s needs in this area. Her paranoia about other people touching her food meant Mrs V’s mealtimes were challenging. For the IRP to have given a weighting of high for this domain, it would need to see evidence Mrs V had a risk of choking, needed subcutaneous fluids (given via a needle in the skin) to be managed by specialist carers, have problems with a feeding device or her nutritional status be at risk, including suffering severe weight changes due to an identified eating disorder. We have not seen indications any of these were the case for Mrs V.
37. When we weigh up the evidence, it appears the IRP made its decision on Mrs V’s needs in this domain in line with the DST descriptors. We have not seen indications of a failing here.
Psychological and emotional needs
38. Mrs U disagrees with the IRP’s moderate weighting in this domain. She says it should be high.
39. Mrs U says her mother had withdrawn from any planning about her care and her dementia was deteriorating in 2022. She says the IRP should have taken more note of that. She says her mother had hallucinations and was paranoid about her food. She says Mrs V suffered from depression and needed a great deal of emotional support.
40. The IRP noted Mrs V took mirtazapine for her needs in this domain and had previously been known to the community mental health team. It said she had not been prescribed PRN (as needed) medication for her mood but could be resistant to personal care and tearful, but the latter was not often prolonged. The IRP said her care records did not indicate she had significant care needs in this domain. It said it could not see severe impacts on her health and wellbeing in this domain.
41. The DST gives the following descriptor for a high weighting:
‘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.’
42. The descriptor for a moderate weighting says:
‘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.’
43. We asked our adviser about this. They said the records showed Mrs V had Alzheimer’s and the IRP had considered this. It was aware of her paranoia around food, but our adviser said the records indicated this problem lessened once she was living at the care home, where she was also more settled than when she had been living at home.
44. Our adviser said the records showed Mrs V had good and bad days both in her own home and once she had moved to the care home. She could be very aggressive and unpleasant to carers, but could also demonstrate good moods during which chatted to care staff.
45. We can see Mrs V had needs in this domain. This was clearly upsetting for her and for her family to see. The records indicate she did engage in daily activities to some extent and did respond to some prompts. She had Alzheimer’s which, as the family said, was deteriorating. As the IRP said, it is difficult to know if her withdrawal from attempts to engage her in care planning was a result of her cognition or psychological and emotional needs. We note the IRP agreed a severe weighting in the cognition domain (the highest possible weighting), which shows it acknowledged the extent of the impact of her Alzheimer’s. Given the evidence that her mood could be good on some days, we think the impacts set out in the moderate descriptor do best align with this.
46. When we weigh up the evidence, it appears the IRP considered Mrs V’s needs in this domain in line with the DST descriptors. We have not seen indications of a failing here.
Behaviour
47. Mrs U disputes the IRP’s weighting of high for this domain. She says it should be severe.
48. Mrs U says her mother assaulted carers 13 times in 28 days, including kicking, biting and punching them. She says her mother caused carers injuries, was a such a risk to herself she needed three carers for personal care and often became verbally aggressive. She says this shows her mother’s needs were severe. She feels they were over and above what a local authority could provide.
49. The IRP said Mrs V’s behaviour charts showed 18 incidents of challenging behaviour, which were mostly physical in nature and all of which followed personal care assistance. It said her sleeping pattern was good and she very rarely refused care. It said most of the incidents were not serious or daily and did not pose a significant risk to carers or Mrs V.
50. The descriptor for severe for this domain 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.’
51. The descriptor for a high weighting is:
‘‘Challenging’ behaviour of type and/or frequency that poses a predictable risk to self, others or property. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions.’
52. The IRP’s description of Mrs V’s needs in this domain was detailed. We asked our adviser about this. They noted Mrs V sometimes injured herself when lashing out at carers. They said her verbal and physical aggression happened in both her own home and the care home.
53. We can see from the records the care home had noted Mrs V could be physically and verbally challenging and violent. They also said she was frail and sometimes was not able to hurt carers because she was too tired. Her care plan said she was generally settled but could become physically and verbally aggressive during personal care. We can see the IRP also noted that.
54. The IRP said planned interventions were generally effective in minimising but not removing risks, but Mrs V’s behaviour posed a predictable risk to herself and others. We can see from the records planned interventions did not always resolve issues here. We can also see Mrs V’s care plan and risk assessments did not say she needed specialist expertise for her care for her behaviour needs.
55. Mrs V clearly had needs in this area. These were distressing for her family to witness and caused them real concern. We understand why Mrs U feels her needs were severe. When we weigh up the evidence, we have not seen indications Mrs V required a skilled response outside the range of planned interventions or her actions posed a significant risk. The IRP would need to have seen such evidence to award a higher weighting here.
56. We think the IRP considered Mrs V’s needs in this domain in line with the DST descriptors. We have not seen indications of a failing here.
Did the IRP apply the eligibility tests properly and reach an evidence-based conclusion about them?
57. Mrs U disagrees with how the IRP considered the four key characteristics, in particular nature, which it used to determine whether her mother had a primary health need. She believes the IRP did not consider Mrs V’s likely future deterioration (and thus increased needs) sufficiently when making its decision, which she says happened five months later, when considering the nature of her needs.
58. The IRP said it did not take the view Mrs V’s needs were beyond that which could be expected of a local authority during the period under consideration.
59. Practice guidance 3 (PG3) in the National Framework sets out how to consider the key characteristics. These are the nature, intensity, complexity and unpredictability of the person’s needs. PG3 includes some questions for each characteristic to help guide them in how to think about it. However, the National Framework does not expect an organisation to prescriptively answer each question – they are prompts.
Nature
60. For the nature characteristic, the National Framework says the IRP should 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.
61. We can see the IRP report explains the nature of Mrs V’s conditions and how the domains interacted with each other. It considered the needs that followed from these and how her carers and medical professionals met those needs. This is what we would expect it to do.
62. We asked our adviser about this. They said the clinical evidence supported the IRP’s decision. The IRP had considered Mrs V’s care plans and had found there were some challenges when her behaviour deteriorated but these were not outside what a local authority could provide.
63. We can see the IRP did not specifically address whether Mrs V’s condition was improving or deteriorating (or was likely to do so in the future) when it considered the nature of her needs. We understand why Mrs U is concerned about this. But we can see it had considered this issue when looking at the Psychological and emotional needs domain. And the records show it had consulted the local resolution meeting transcription where the family had raised this concern. We cannot say the IRP had not considered this concern during the course of the meeting. We also cannot see any indication in the contemporaneous care records that indicated Mrs V’s would deteriorate further.
64. The records show Mrs V did not require any specialist care at that time. Her medication was not complex or hard to administer and there were no changes to her care plans. When we weigh up the evidence, we think the IRP made its decision about the nature of Mrs V’s needs in line with the National Framework.
Intensity
65. The National Framework says the intensity characteristic is about both extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained or ongoing care (‘continuity’).
66. We asked our adviser about this. They said the IRP considered carefully the evidence for the intensity of Mrs V’s needs. We can see the IRP’s report looked in detail at how Mrs V’s needs across the domains interacted and whether they created intensity. Our adviser said Mrs V’s care was delivered by carers following a care plan that has been assessed, planned and monitored by registered nurses and carers within the care home and the GP was consulted when required.
67. We can see the IRP considered the severity of Mrs V’s need, how often she needed intervention and for how long, how many carers she needed and in which care domains. These are the things the prompt questions ask it to. Mrs V’s records do not evidence any factor that suggested intensity of her needs that indicated a primary health need. When we weigh up the evidence, we think the IRP made its decision about the intensity of Mrs V’s needs in line with the National Framework.
Complexity
68. 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 the 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.
69. We asked our adviser about this. They said the IRP had explained the interactions between Mrs V’s needs and how these were influenced by her underlying conditions. This is what we would expect it to do. We can see it considered how her behaviour affected her nutritional intake and how she needed to be cared for. It said she rarely refused medication and there was no indication carers could not perform personal care for her overall.
70. Our adviser said the records showed Mrs V’s care could be delivered by carers following a care plan that had been assessed, planned and monitored by a registered general nurse. The records do not indicate her care was difficult and complex to manage, nor did she require regular, intensive input from a specialist team.
71. When we weigh up the evidence, we have not seen indications that would have suggested to the IRP Mrs V’s care needs were complex to manage at that time. There are no indications her needs were beyond what the local authority could provide. The IRP appears to have described her needs thoroughly here. We think it made its decision about the complexity of Mrs V’s needs in line with the National Framework.
Unpredictability
72. 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.
73. We asked our adviser about this. They said the IRP considered Mrs V’s needs in this domain in detail. The panel noted Mrs V’s needs did not fluctuate unduly or on a daily basis. The records do not show carers needed to amend her care plans or change these suddenly. This is a key piece of evidence because a person with unpredictable needs is very likely to need care that is outside agreed care plans, or care plans that change frequently. We cannot see from the records any evidence that would have led the IRP to conclude Mrs V’s care was unpredictable to manage. We think the IRP made its decision about the unpredictability of Mrs V’s needs in line with the National Framework.
74. When we weigh up the evidence, we think the IRP report explained Mrs T’s needs and how they interacted in detail for each characteristic. 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.
75. We understand why Mrs U thinks Mrs V had a primary health need at this time. She was clearly not well and her behaviour was noted to be challenging. When we weigh up the evidence, we have not seen evidence her needs or care plan to deal with these changed suddenly or unexpectedly or that her care was particularly difficult to manage. Carers appear to have known how to deal with her and did not need a higher level of skill or training to do this. It appears the IRP considered the Mrs T’s needs in the four characteristics in line with the National Framework. We have not seen an indication of a failing here.
76. We would like to thank Mrs U for bringing this complaint to us. It was clearly a difficult time for her and her family and we wish them well for the future.