14. Before we decide if we should do 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 went wrong when NHS England made its decision.
15. It is our role to decide whether NHS England’s IRP acted in line with the National Framework when it considered whether Dr C 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.
16. 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.
17. 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 ICB reconsiders if the patient had a primary health need, and • recommend the ICB addresses any procedural faults the IRP identified.
18. 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.
Domains
Skin
19. Mrs B has told us she disagrees with how the IRP considered the skin domain. She says her father’s needs were high.
20. She says the district nursing team supplied dressings for her father’s pressure-related wounds but her mother, who has a nursing background, applied them. She did this because the wounds could only be accessed when carers hoisted her father onto the bed and rolled him, and district nurses could not reliably attend at the times when carers were present. Her father’s skin integrity continued to deteriorate. Pressure damage and wounds were frequent and close to a permanent state, and they were increasingly difficult to treat. His type 2 diabetes significantly increased the risk of skin breakdown, delayed healing, infection and sepsis, requiring more urgent and specialist wound care.
21. Mrs B says barrier cream was applied at least twice daily to suspect or open areas, and dressings applied and changed due to double incontinence. His needs fluctuated depending on the presence and severity of wounds, and the wounds caused him pain. He was unable to relieve pressure, meaning the wounds remain pressure-related and were directly linked to his mobility needs. His immobility significantly increased the risk, severity and persistence of pressure damage. His condition was progressive and did not improve.
22. The IRP agreed with the ICB and said Dr C’s skin needs were moderate.
23. The IRP said he experienced pressure wounds and daily care notes showed his carers’ vigilance in checking for pressure areas and his wife’s proactive treatment at the first sign of concern. The district nurses provided advice and intervention. The IRP said the records showed that Dr C’s wounds responded to treatment and resolved with the application of barrier creams. This was a routine first step of treatment for a pressure wound and did not represent a specialist dressing regime.
24. A high level of need is described in the DST as:
‘Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is not responding to treatment OR Pressure damage or open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’, which is/are responding to treatment.
OR Specialist dressing regime in place; responding to treatment’.
25. A moderate level of need is described in the DST as:
‘Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.
OR Pressure damage or open wound(s), pressure ulcer(s) with ‘partial thickness skin loss involving epidermis and/or dermis’, which is responding to treatment.
OR An identified skin condition that requires a minimum of daily treatment, or daily monitoring/reassessment to ensure that it is responding to treatment’.
26. We can see the IRP had a detailed discussion about Dr C’s skin needs. The panel asked the family and their advocate to describe the help he needed with his skin and position changes. It weighed up their concerns about the support he needed when he had pressure wounds and whether this showed a higher weighting might be appropriate. Any concerns about Dr C’s skin integrity and pressure areas were recorded and monitored.
27. The moderate descriptor captures that he had risk of skin breakdown. So, the IRP acknowledged his skin was at risk, as Mrs B says. The evidence shows that Dr C was difficult to reposition due to his underlying conditions and that he required pressure relieving equipment. The IRP also acknowledged that Dr C’s wife was a registered nurse and was able to apply protective dressings when required and to treat any pressure ulcers as required. The dressings were not of a specialist type and were easily applied. This is consistent with Mrs B’s own evidence from the discussions and the moderate descriptor.
28. There was no evidence to support that Dr C’s wounds did not heal or that they were of the higher grades exposing underlying tissues and bone. While he needed help with his skin, his carers and wife could plan for and usually manage this. There was no evidence of pressure damage, open wounds or specialist dressing regime for any infections. This is the information the IRP would have needed to see to give a high weighting.
29. We can see no indications of a failing in how the IRP considered this domain. We think the IRP considered Dr C’s skin needs in line with the DST guidance.
Mobility
30. Mrs B has told us she disagrees with how the IRP considered the mobility domain. She says her father’s needs were severe.
31. She says he was completely immobile and unable to move or reposition himself in any way. He was fully dependent on trained carers, her mother, and family for all activities of daily living, including transfers, toileting, showering, dressing, feeding, hydration and medication. He required hoisting multiple times daily and could not assist with transfers or positioning, making correct positioning critical to prevent injury and falls. He was unable to communicate pain physically and relied on carers to interpret vocalisations and facial expressions. His condition was permanent and progressive, with no consideration given to anticipated deterioration.
32. Mrs B says he was unable to feed himself, use cutlery or a cup, or reliably drink through a straw, with meals taking up to an hour and medications administered five times daily. He required frequent repositioning of his head and chair, ongoing hygiene care, and regular cleaning of saliva. Due to immobility, he was at high risk of pressure injuries and experienced ongoing skin integrity issues, complicated by diabetes. He was unable to use emergency devices or evacuate independently. His complete dependence and loss of independence caused significant psychological distress, anxiety and a marked reduction in quality of life.
33. The IRP agreed with the ICB and said Dr C’s mobility needs were high.
34. The IRP noted he was total immobile and the level of care he needed due to this. The IRP said it thought about a hierarchy of needs within this domain. It was clear that Dr C’s needs were not at the highest level when compared with the examples given by the ICB. Whilst he was immobile, his needs did not fall into the second part of the severe descriptor and there was not a high risk of harm on moving and his positioning was not critical.
35. A severe level of need is described in the DST 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’.
36. A high level of need is described in the DST 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.’
37. We can see the IRP discussed Dr C’s mobility needs. The panel asked the family and their advocate to describe the help he needed with his mobility. It weighed up their concerns about the support he needed when moving, the risk of harm on transfer and whether this showed a higher weighting might be appropriate.
38. The IRP acknowledged Dr C’s immobility and lack of ability to assist in transfers. He had some contractures to his lower limbs. It described him as being in one position for most of the time and it also recognised that he required careful handling due to risk of physical harm. This is consistent with Mrs B’s own evidence from the discussions and the high descriptor.
39. There was no evidence that Dr C had a condition where movement and transfers posed a high risk of serious physical harm. This is the information the IRP would have needed to see to give a severe weighting. The IRP recognised there was a safe system of moving and handling which managed the risk of injury and his positioning was not critical in a clinical sense.
40. We can see no indications of a failing in how the IRP considered this domain. We think the IRP considered Dr C’s mobility needs in line with the DST guidance.
Key characteristics
41. The IRP 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.
42. 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 key characteristics of a person’s needs.
43. Mrs B has told us she disagrees with the IRP’s consideration of the four key characteristics.
Nature
44. Mrs B says that her father required full anticipation of his needs and complete support with all activities of daily living due to advanced Parkinson’s disease and dementia. He had severe mobility, cognitive and communication impairments, which affected his skin integrity and breathing, with immobility contributing to respiratory difficulties. He experienced frequent breathlessness during care activities such as hoisting, showering and dressing. He required skilled two-person hoist transfers and specialist wound care and was unable to recognise or manage risk. Due to the interaction of his multiple conditions, regular and sometimes daily deterioration was to be expected.
45. The National Framework says nature 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.’
46. The nature section of the IRP report gives a detailed explanation of Dr C’s needs and considered the way in which those needs were met. It acknowledged he had a number of medical conditions such as Parkinson’s disease and linked vascular dementia diabetes which impacted his day-to-day care needs. He was dependent on his wife (a former registered nurse) and carers and needed support with activities of daily living within his own home.
47. We can see the IRP presented a clear picture of how Dr C’s needs were met. They described the nature of his condition. The report sets out a consideration of the types of care Dr C needed across each of the care domains to keep him safe and well. It noted these were routine interventions, including clearing his mouth of sputum, applying barrier cream, administration of medication, soft and small cut food, a hoist and sliding sheet for correct and comfortable positioning and wound care from his wife. There was no risk of harm to others around daily care interventions. His care needs were met with care support.
48. We looked at the levels of training Dr C’s carers needed. They were knowledgeable and well-trained in older person’s care for physical and mental health needs. We know Dr C needed support because of his significant diagnoses. Care staff, along with his wife’s oversight of care, which he benefitted greatly from, would monitor his needs. There was access to his GP, district nursing service and specialist hospital-based services if needed.
49. Mrs B feels the range, interaction and frequency of her father’s needs and the frequency of his need for assistance required knowledgeable and skilled carers, without which he could not cope. We can see the evidence supports the IRP’s conclusion. They show Dr C did need care to ensure his needs were met. But it was routine interventions that did not take a long time to complete.
50. We think the IRP weighed up the things the National Framework PG3 says it should. It is very clear Dr C needed a lot of care with daily living activities, as Mrs B says. But we cannot see he needed any specific knowledge, skill or training beyond that which a local authority carer could provide. Although he had variable needs including very fragile skin, his care interventions could be planned and were not unusual.
51. We think the IRP’s decision about the nature of Dr C’s needs was in line with the guidance set out in the National Framework.
Intensity
52. Mrs B says her father’s immobility showed the extreme level and intensity of his needs. He was unable to perform even the most basic tasks and was entirely dependent on others for all aspects of care. Although his needs were well managed, this did not reduce their intensity.
53. She says her father required multiple interventions several times each day across numerous care domains, including nutrition, medication, mobility, skin care, continence and communication. Except for behaviour, he had some needs in almost every domain. He required the involvement of at least five individuals daily, with the DST recommending additional carer visits that would increase this to at least nine individuals per day. His needs were continuous, unremitting and progressive, with no prospect of improvement.
54. 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’). It sets out that assessors should look at how severe a person’s needs are, how often an intervention is needed and how long it takes, how many carers are needed, and whether the care is needed over several domains.
55. The IRP report shows there was a discussion about the intensity of Dr C’s needs. It asked his wife to set out the domains where his needs were greatest and that the combination of these required consistent care throughout a 24-hour period. It set out that he needed help with his moving/handling and positioning.
56. Dr C also needed support with his nutrition and prescribed medication (this included laxatives or pain relief). He was monitored when his skin was reddened or broken with barrier creams and dressings applied. He was generally compliant with care interventions from carers and his wife.
57. There were no barriers to providing the care. His support and interventions were managed successfully, with oversight from the GP and district nurses when needed.
58. The evidence shows the IRP acknowledged he needed supervision and monitoring with his general health and daily activities. It noted Dr C’s care could be delivered with no increase of frequency of support. He needed care 24 hours a day, as Mrs B says, but this alone does not indicate a primary health need. At different times of the day, he needed more or less help.
59. The IRP recognised he had a level of need in many of the care domains. We note it concluded the levels of care required in these domains were what local authority carers could be expected to provide and were not intense enough to determine a primary health need. There is no indication that the majority of his interventions took a long time. They were straightforward to meet with a family member and/or paid carers visits in the morning and tea time.
60. We think the IRP’s decision about the intensity of Dr C’s needs was in line with the guidance set out in the National Framework.
Complexity
61. Mrs B says that her father’s needs were highly interrelated, creating significant complexity in his care. Severe immobility from Parkinson’s affected all aspects of daily care, including transfers, feeding, medication, repositioning and skin integrity. It increased risks associated with hoisting and wheelchair use. There was a clear interaction between mobility, continence, skin integrity and diabetes.
62. She says his double incontinence complicated wound care and increased the risk of further skin damage. His diabetes increased the risk of poor wound healing, infection and sepsis. Cognitive and communication impairments affected nutrition, hydration and pain management, as he could not reliably express his needs. This led to reduced appetite and dietetic input. Lengthy positioning also compromised his respiratory function, while fluctuating consciousness increased risks during transfers and positioning due to poor postural control.
63. The National Framework says this characteristic 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.’ It sets out that assessors should think about how difficult it is to manage the need and alleviate the symptoms, how the needs impact on each other, how much knowledge and skill is needed, and whether the person’s response makes it difficult to provide support.
64. The IRP report shows the panel discussed the complexity of Dr C’s needs. It noted his care for his physical frailties was not difficult to deliver. It recognised his level of cognition and psychological and emotional needs were linked. It noted his hallucinations could impact on his communication and nutrition. The interactions Mrs B raised impacted his mood, appetite and compliance with medication. He needed distraction, reassurance and de-escalation when he was distressed and agitated at times. This did not become difficult or need adjusting on a regular basis. It noted he needed a hoist to move from his chair or bed and monitoring of his constipation or skin integrity. He had limited fluid intake, but this was not problematic.
65. The IRP thought about the knowledge and skill needed to care for Dr C. Carers and his wife anticipated his needs through familiarity and understanding of his care. It thought about whether the needs combined to create complexity and set out why it thought they did not.
66. We think IRP considered the factors PG3 says it should. It saw Dr C’s care interventions were not difficult to manage and did not need specific skill or knowledge beyond that which a well-trained carer would have. There were no interactions or difficulties with Dr C’s response that meant it was more complex to provide his care. His needs were not difficult to plan or provide for. He did not require intervention from specialist care teams, such as speech and language therapy (SALT), around the time of the assessment.
67. We think the IRP’s decision about the complexity of Dr C’s needs was in line with the guidance set out in the National Framework.
Unpredictability
68. Mrs B states that due to her father’s cognitive impairment, he was unable to understand or manage risk, leading to unsafe behaviours and unpredictability, including serious health deteriorations such as loss of his swallow reflex and choking. These episodes caused interruptions to medication and worsened his physical health. He required constant monitoring, reassurance, and could not be left unattended for any significant period.
69. 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.’
70. The National Framework says an assessor should think about whether it is possible to anticipate the person’s needs, whether the needs or support change at short notice, if the person’s condition is stable, what level of knowledge or skill is needed for a spontaneous response, and what would happen if the need was not met.
71. The IRP report shows the panel considered the unpredictability of Dr C’s needs. It noted that his needs were stable during the period. His medication was given at set times to enable his physical care and his seizure activity could not be predicted. But his wife and the care staff knew what to expect and the appropriate actions to respond on each respond. There was no difficulty in meeting those needs.
72. The IRP noted Dr C required regular observation, but his health needs did not fluctuate and did not present a high level of risk. His care interventions were routine. There was no rapid deterioration or sudden change in the level or type of support Dr C required. He did not need unplanned district nursing visits due to unexpected changes in need. These are key pieces of evidence in this characteristic. If a person had unpredictable needs, we would expect to see frequently changing care plans, or the family or carers having to act outside of the care plans to meet those needs.
73. We can see he did not require constant 1:1 supervision, nor did he require the completion of behaviour charts. There was no safeguarding alerts raised. He did not have frequent emergency interventions.
74. We think the IRP’s decision about the unpredictability of Dr C’s needs was in line with the guidance set out in the National Framework.
Well managed needs
75. Mrs B says that her father’s needs did not reduce or cease, even where they were managed. Due to his complete immobility and limited availability of district nurses, her mother had to provide ongoing skilled care, particularly in managing his skin integrity and wounds, which she felt should be recognised. She says although his mobility risks may have been well managed, the risk of serious harm remained. His immobility meant he required intensive, continuous support to maintain quality of life, with the majority of his care (nutrition, hydration, medication, personal hygiene, interpretation of needs, supervision and reassurance) being provided at home primarily by her mother, with support from other family members.
76. The IRP concluded that even though Dr C’s needs were well managed, they did not constitute a primary health need.
77. The National Framework says, ‘care must be taken not to misinterpret a situation where the individual’s care needs are being well-managed as being a reduction in their actual day-to-day care needs.’
78. We can see why Mrs B was concerned about the IRP’s consideration of the well managed needs principle. Dr C had a variety of needs which she felt the IRP did not recognise.
79. We have considered if the IRP did misinterpret Dr C’s needs because of the level of care he received. We think the IRP correctly applied this principle. The IRP has detailed in its report the level of care Dr C needed in each domain and the key characteristics, and how the care he was receiving met this need. It had to do this to properly consider his needs.
80. The IRP discussed Dr C’s needs in totality and there was evidence that the panel considered the need for skilled intervention. It recognised he received good quality care from his wife, carers and district nursing staff. The specialist neurology team oversaw treatment plans for his Parkinson’s and dietary needs. It acknowledged he needed a degree of skilled oversight and input but did not deem it as a skilled response outside of routine provision within his home. He had trained staff input, but this was generally to oversee the care. It detailed his deterioration arising from his Parkinson’s, dementia and physical frailties. Within the drug therapies domain, it determined a higher level of need than that which was evidenced by the ICB and family.
81. Dr C’s needs were managed by his wife (providing treatment to areas of skin reddening) and two visiting carers to assist him in getting up and his activities of daily living. This included safe moving and handling and his physical wellbeing. The district nurse supported with his skin care. He complied with activities of daily living throughout the assessment period.
82. We cannot see that the IRP misapplied the well managed need principle. There is no evidence that the IRP marginalised Dr C’s needs. It referred to how carers and his wife managed his needs, which it must do to make decisions about the four key characteristics. The report shows the IRP’s application of the well managed need principle was supported by the evidence available and in line with the National Framework.
Conclusion
83. Our decision does not take away from the account Mrs B has given us, or the challenges Dr C faced. We appreciate he was reliant on the care he received at home. The IRP’s conclusion that his 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.