NHS England

3. Mrs C complains NHS England’s independent review panel (IRP) upheld East Sussex ICB’s (the ICB, previously CCG) decision that her late mother, Mrs A, was not eligible for NHS funded continuing healthcare (CHC) when it assessed her care needs on 18 January 2023. Mrs C says the IRP did not properly consider: • the psychological and emotional and behaviour domains • the nature, complexity, intensity and unpredictability of her mother’s needs, which she feels demonstrated a primary health need.

4. Mrs C says her mother should have been entitled to CHC funding to meet the cost of her care. Her mother has been financially disadvantaged as she had to pay for her own care.

5. Mrs C wants NHS England to reconsider the IRP’s decision.

6. Until July 2022, East Sussex Integrated Care Board (ICB) was East Sussex Clinical Commissioning Group (CCG). We refer to it as the CCG below as this is what it was at the time of the original assessment.

7. Mrs A’s medical history included severe frailty, Alzheimer's disease and chronic kidney disease stage 3 among other conditions.

8. The CCG assessed Mrs A on 27 May 2022 and decided she was not eligible for continuing health care (CHC).

9. Compass CHC, on behalf of Mrs C. The CCG upheld the earlier decision. Mrs C then appealed the decision to NHS England. It held an independent review panel (IRP) meeting on 25 July 2023. It agreed with the CCG that Mrs A was not eligible for CHC and sent its outcome letter on 30 August 2023.

13. 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 went wrong when NHSE made its decision.

14. It is our role to decide whether NHS England’s IRP acted in line with the National Framework when it considered whether Mrs A was eligible for CHC. The National Framework sets out the principles and processes CCGs and NHS England should follow when considering if someone is eligible for CHC.

15. 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.

16. The IRP reviews if the CCG should have found the person to have a primary health need and therefore be eligible for CHC. It also reviews the CCG’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 CCG 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.

17. 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

18. Mrs C has told us she disagrees with how the IRP considered the psychological and emotional, and behaviour domains. We have looked at each of these in turn.

Psychological and emotional

19. Mrs C says her mother had a high level of need in the psychological and emotional domain. She experienced regular periods of distress, mood disturbance, anxiety and hallucinations. This had a clear and significant impact upon her health and wellbeing, as this often occurred during care interventions. Care staff stopped hoisting her due to the level of distress and anxiety she experienced.

20. She says her mother did not respond to staff attempts to distract her, have a chat or play music. She was prescribed lorazepam due to her anxiety and agitation. This was after other attempts at distraction and reassurance were unsuccessful. It was administered six times between 8 and 27 May 2022, and 25 times between 11 April and 8 May 2022.

21. Mrs C says her mother could be resistive to being given medication and all attempts to administer this could not be documented due to staffing issues at the care home. Mrs C says simply because her mother was noted to be calm at times does not negate the severity of her psychological and emotional needs. She says the mental health team involvement or prescription of medication is not necessary to satisfy a high level of need in this domain.

22. The IRP disagreed with the CCG and concluded Mrs A had a moderate level of need. The GP reviewed her needs, and she was prescribed lorazepam 1mg (milligram) as required, specifically 0.5mg twice a day. There was an improvement in her behaviour and her compliance with care provision. She was described as being anxious and distressed at times. In contrast, she was also described as quiet, comfortable and seemed restful. The documentary evidence from the care home reflected that she slept well.

23. The decision support tool (DST) defines high needs in this domain 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.’

24. The DST defines moderate needs in this domain as:

‘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.’

25. We can see from the notes that the IRP had a detailed discussion about Mrs A’s psychological and emotional needs. It asked the Mrs C and her representative to describe why they felt her needs were high. It weighed up their concerns about her anxiety and distress and whether these showed a higher weighting might be appropriate.

26. The IRP recognised that Mrs A could be resistive to care and her mood could change during interactions with care staff. Carers would need to leave her and return to complete the intervention. This is consistent with Mrs C’s own evidence from the discussions. We can see there is also mention that she was resistive to using the hoist, as Mrs C says, but this did not prevent her from spending time out of bed until 15 April 2022, when the records show that she began to spend most of her time in bed where she was more settled. There are only two incidents recorded where Mrs A was described as agitated during personal care.

27. Each of the descriptors in the psychological and emotional needs domain (apart from no needs) captures that the person experiences some level of mood disturbance, anxiety, distress, and so on, and that they struggle with engaging. The difference is how significantly this is affecting them and how much they have disengaged as a result of their psychological and emotional state. The evidence, including Mrs C’s, shows that her mother did not have a mood disturbance or hallucinations which had a severe impact on her wellbeing. This is the information the IRP would have needed to see to give a high weighting.

28. We know Mrs A was unable to engage in care planning due to her severe cognitive impairment, she was not intentionally disengaging from the process due to a mental health illness. Her cognitive abilities did not allow her to understand, follow or remember processes. This deficit was recognised in the cognition domain where she had a severe weighting.

29. We can see no indications of a failing in how the IRP considered this domain. We think the IRP considered Mrs A’s psychological and emotional needs in line with the National Framework and the DST guidance.

Behaviour

30. Mrs C says her mother had a severe level of need in the behaviour domain.

31. She says three carers were required to support her mother’s needs. This was not recorded within the care plans as this response was outside the range of planned interventions. The care note dated 9 March 2022 referred to her mother’s resistance to care which was reported to another member of care staff. She feels the IRP did not record that it was a new staff member who was not aware of her mother’s challenging behaviour. They felt the need to discuss with other care staff what they had experienced. Carers underreported her behavioural incidents due to their familiarity with her behaviour.

32. She says there were significant risks posed and her mother was known to present as aggressive towards others, namely staff, and would scratch and push them. She was non-compliant with necessary care interventions, including her nutritional intake, continence care, medication regime and personal care interventions. Lorazepam was prescribed due to the extent of her agitation and anxiety, which led to challenging behaviours. Her behaviour could not be effectively managed, particularly due to her non-compliance with her medication regime. Staff were required to retreat and return, however there were occasions where personal care could not be carried out.

33. The CCG had given a weighting of moderate. The IRP disagreed and concluded Mrs A had a high level of need. There was reference to her pushing care staff away, scratching and pinching them. There was no documentary evidence that more than two members of care staff were required to support her care needs. The IRP noted the oral evidence at the original DST assessment, local resolution meeting and IRP that Mrs A required up to three care workers at times. The IRP said the evidence, on balance, supported that if up to three members of staff were required, this was during the intermittent wound care provision. Therefore, this was at a maximum of every three days. There was no care plan documentation relating specifically to behaviour.

34. The IRP said care staff did spend time with Mrs A to support her needs when the needs arose. But there was no evidence to indicate that additional dedicated one-to-one supervision was required on an ongoing basis. There was reference to staff retreating and leaving Mrs A to become calmer, this was stated to be up to a maximum of one hour.

35. The DST defines severe needs in this domain as:

‘‘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.’

36. The DST defines high needs in this domain as:

‘‘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.’

37. We can see the IRP had a very detailed discussion about Mrs A’s behaviour needs. It asked Mrs C and her representative to describe why they felt her needs were of a higher weighting. It weighed up their concerns about her aggression and whether these showed a higher weighting might be appropriate.

38. It is clear there were discrepancies between what the family reported about Mrs A’s behaviour and the needs arising from this and what the records showed. The IRP report shows the panel considered the submissions as well as the documentary evidence to see what it could conclude about this,

39. The IRP recognised that Mrs A’s challenging behaviour was physically aggression. This is consistent with the Mrs C’s own evidence from the discussions. The only time that more than two staff were needed to support her mother’s care needs was to support her skin wound dressings. This was an intermittent need, rather than a reflection of her daily needs. Importantly, the IRP could not see strong evidence that Mrs A’s behaviour required a prompt and skilled response outside of the range of planned interventions. The IRP acknowledged that she could be resistive to personal care interventions as Mrs C says, but there are no recordings of frequent episodes, nor did she require the presence of a 1:1 carer.

40. We can see there are no incident forms that recorded untoward behaviour towards staff or other residents and there were no safeguarding alerts raised. There is no evidence of completion of any Antecedent, Behaviour and Consequence (ABC) charts. There is no indication Mrs A posed a significant risk to herself or others or their property. This is the information the IRP would have needed to see to give a severe weighting.

41. We appreciate the family do not think the care records gave an accurate picture of Mrs C’s behaviour. We think the IRP considered this before it made its decision in this domain. And it is clear Mrs C did have significant behaviour needs. When we weigh up the evidence the IRP considered, it aligned with the high weighting descriptor. We can see no indications of a failing in how the IRP considered this domain. We think the IRP considered Mrs A’s behaviour needs in line with the National Framework and the DST guidance.

Key characteristics

42. 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.

43. The National Framework sets out questions for the IRP to consider to help 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). (This is the section title in the 2018 version.) 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 A’s needs.

44. Mrs C has told us she disagrees with the IRP’s consideration of each of the four key characteristics.

45. She says her mother was living with Alzheimer's dementia. She did not recognise the need for care interventions and had no insight into her needs or basic risks. Her challenging behaviour posed a significant barrier to providing her care. Knowledgeable and skilled carers were also required to administer, manage, and monitor her prescription of lorazepam due to the risks associated with the potential fluctuation of her condition. She also showed challenging behaviour in the form of aggression, in that, she would push and scratch care staff, necessitating a prompt and skilled response that was outside the range of planned interventions. At times three members of care staff were required to attend to her mother due to her challenging behaviour.

46. She says her mother’s cognitive impairment and inability to reliably communicate her needs impacted many aspects of her care, such that difficulty was added to the anticipation and address of her needs. Her physical aggression added a level of complexity to her care and impacted on the care staff’s ability to carry out necessary care interventions. As a result of her challenging behaviours, many of her needs were extremely difficult to address. She was at high risk of malnutrition. Due to her dementia, she was unable to swallow or chew her food so needed pureed food.

47. She says her mother was unable to feed herself and it took her 45 minutes on a 1:1 basis to finish her meal, therefore evidencing intensity. Despite all attempts to increase her nutritional intake, she continued to be malnourished, demonstrating the need for ‘quantity’ and ‘continuity’ of care.

48. She says the deteriorating condition of her mother’s dementia meant she was unable to reliably communicate. Her inability to use a call bell to summon her carers added unpredictability to her overall care. Her challenging behaviour and psychological and emotional symptoms was also unpredictable. Given that her challenging behaviour, distress, and anxiety, impacted on the provisions of care such as nutrition, continence, skin, or mobility, it clearly indicated the unpredictability of her needs. When she presented as aggressive and resistive, there was a need for an increased level of support from a number of carers.

Nature

49. 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.’

50. The nature section of the IRP report gives an extremely detailed, extensive and thorough explanation of Mrs A’s needs. It acknowledged she had limited insight into her condition and day to day care needs due to her reduced cognitive function. She was dependent on carers with all her activities of daily living within her own home. It acknowledged that she had advanced dementia and co-morbidities and a range of needs that arose from these.

51. We can see the IRP presented a clear picture of how Mrs A’s needs were met. They describe the nature of her condition. The report sets out a consideration of the types of care Mrs A needed across each of the care domains to keep her safe and well. It noted these were routine interventions, including: • pureed food with thin fluids and fortified diet • use of incontinence pads, a pressure relieving mattress on a profiling bed as her skin was at risk of breakdown and barrier cream • and management of her medication.

52. She was unable to mobilise and needed moving and handling equipment. This was a hoist with a full body sling. She needed wheelchair support to move safely within the communal areas of home. Care staff had to interpret and anticipate her needs.

53. The report drew out that she was incontinent of urine and faeces during the review period and had loose stools. There were times she displayed challenging behaviour as Mrs C says, but this did not stop care staff from giving her the care she needed. She had a straightforward medication regime. Her care needs were met with care support.

54. We looked at the levels of training Mrs A’s carers needed. They were knowledgeable and well-trained in older person’s care for physical and mental health needs. We know Mrs A needed support to make choices and care staff would monitor, plan and review her needs. There were registered general nurses on hand and access to her GP if needed.

55. Mrs C feels the interaction and frequency of her mother’s needs and the frequency of her need for assistance required knowledgeable and skilled carers. We can see the evidence supports the IRP’s conclusion. They show Mrs A did need care to ensure all her needs were met. But it was routine interventions that did not need any particular knowledge, skill or training or took time to complete.

56. We think the IRP weighed up the things the National Framework PG3 says it should. It is very clear Mrs A needed a lot of care with all daily living activities. But we cannot see Mrs A needed any specific knowledge, skill or training beyond that a local authority carer could provide.

57. We think the IRP’s decision about the nature of Mrs A’s needs was in line with the guidance set out in the National Framework.

Intensity

58. 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 and how long it takes, how many carers are needed, and whether the care is needed over several domains.

59. The IRP’s report shows a detailed discussion about the intensity of Mrs A’s needs. It set out the domains where her needs were greatest and that the combination of these needed consistent care throughout a 24-hour period. It set out that she needed monitoring for her continence care, maintenance of pressure areas, skin dressings changed every three days, and support with transfers and mobility with the use of appropriate equipment. She needed support and prompting with her nutrition and hydration needs. It noted she needed reassurance when anxious or distressed during personal care interventions. When she was agitated, she was given time to settle and then offered the care intervention again.

60. The IRP noted there were no risk assessments for behaviour and no barriers to providing the care. No interventions were particularly time-consuming. Carers managed her needs within standard care plans, with oversight from a registered general nurse and other health professionals when needed.

61. The evidence shows the IRP looked at the amount of time needed to provide the care, how much planning was involved and how many carers were needed. These are the considerations PG3 advises to look at. Mrs A’s care could be delivered within standard care planning. There was no increase of frequency of support. She needed care 24 hours a day, as Mrs C says, but this alone does not indicate a primary health need. At different times of the day, she needed more or less help.

62. The IRP recognised Mrs A had a level of need in many of the DST care domains. We note it concluded the levels of care and monitoring 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 her interventions took a long time. Her needs remained stable during the review period.

63. We think the IRP’s decision about the intensity of Mrs A’s needs was in line with the guidance set out in the National Framework.

Complexity

64. 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.’ It sets out that assessors should think about how difficult it is to manage the need and alleviate the symptoms, how the need impact on each other, how much knowledge and skill is needed, and whether the person’s response makes it difficult to provide support.

65. The IRP report shows a good discussion about the complexity of Mrs A’s needs. It detailed Mrs A’s care was not difficult to deliver. It recognised her poor level of cognition impacted her behaviour, communication and psychological and emotional, medication, mobility, continence and skin needs. It reiterated that her one PRN (as needed) medication was not complex. The care staff needed to be watchful when she was unsettled, such as when it impacted on her eating and she would sometimes shout out, pinch and scratch care staff. There were no difficulties with her swallow as Mrs C says. She was not at risk of choking. She would become calmer with reassurance and her personal care needs could be carried out. Her care did not prevent carers from providing it in line with the care plans. It did not become problematic.

66. The IRP thought about the knowledge and skill needed to care for Mrs A. Her prescribed medication was administered following a clinical decision under the supervision of the GP. Carers anticipated Mrs A’s needs through familiarity and understanding her care plans.

67. We think IRP considered the factors PG3 says it should. It saw Mrs A’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 Mrs A’s response that meant it was more complex to provide her care. Her needs were not difficult to plan or provide for. She did not require intervention from specialist care teams and did not have frequent hospital visits.

68. We think the IRP’s decision about the complexity of Mrs A’s needs was in line with the guidance set out in the National Framework.

Unpredictability

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 a good discussion about the unpredictability of Mrs A’s needs. It detailed that her needs were stable throughout the review period. Her resistance to care followed a predictable pattern.

72. The IRP noted her health needs did not fluctuate. It saw carers could easily plan her care and effectively meet her care needs. Her care interventions were based on routine care plans. There was no rapid deterioration or sudden change in the level or type of support Mrs A required. 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 carers having to take action outside of the care plans to meet those needs.

73. The IRP noted there was a small gradual increase in the support she needed with her mobility and medication (prescribing lorazepam), but these changes were easily accommodated. It found no evidence that emergency interventions were needed. The care staff were aware that Mrs A could be resistant to personal care and had strategies in place should this occur. She did not require constant 1:1 supervision nor did she require the completion of behaviour charts. There were no safeguarding alerts raised.

74. We think the IRP’s decision about the unpredictability of Mrs A’s needs was in line with the guidance set out in the National Framework.

75. Our decision does not take away from the account the Mrs C has given us, or the challenges her mother faced. We appreciate Mrs A was reliant on the care she received at the care home. 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.

1. We have carefully considered Mrs C’s complaint about how NHS England (NHSE) looked at her continuing healthcare (CHC) claim for her late mother, Mrs A. We have seen no indication that anything went seriously wrong when NHSE made its decision.

2. We know Mrs A feels strongly that her mother should have been eligible for CHC. We have reviewed all the relevant evidence and we are satisfied NHSE acted in line with the National Framework for continuing healthcare.