14. Glossary:
CHC is a package of care the NHS pays for when someone has a ‘primary health need’. A person or their representative can apply for this retrospectively if they think they may have been eligible in the past, with a view to the CCG reimbursing them for care costs they have already paid.
A decision support tool (DST) is a document that captures full details of an individual’s needs to help NHS organisations decide if the person has a primary health need.
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:
• the primary health need decision made by a CCG or
• the procedure a CCG followed to reach a decision on a person’s eligibility for CHC.
The IRP makes a recommendation to NHS England in light of its findings.
17. Whether or not an individual is eligible for CHC funding is a discretionary decision. It is our role to decide if the IRP made its decision in line with the National Framework.
18. When we look at complaints about IRP decisions we consider four key questions.
Did the IRP get all the relevant evidence?
19. Rev R says the IRP ignored key medical evidence and did not weigh up properly the family’s evidence about his mother’s decline and condition. He says the information gathered was not an accurate assessment of his mother’s needs. He says the IRP should have considered his mother’s hospital discharge records, which would have indicated whether she had a proper assessment before she moved into the care home and whether her dementia diagnosis was correct.
Paragraph 199 of the National Framework says ‘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.’
20. We have reviewed the information in NHS England’s case file and can see the IRP had access to: • Mrs R’s care home records (also covering her nursing care), GP records and social services records • correspondence from and with her family, including their views and concerns about her eligibility for CHC funding and • the DST and local resolution meeting documentation.
21. Mrs R was discharged from hospital and moved into the care home in August 2017. This was significantly before the October 2019 DST the IRP was considering. Details of her diagnosis, care package and treatment were available in her other records. There was no need for the IRP to consider documentation from 2017.
22. The CCG has confirmed Mrs R did not need hospital visits or an ambulance during the relevant period, so there were no records for these services for the IRP to consider.
23. We understand Rev R’s concerns about the records available to the IRP. Having weighed the evidence, we can see there was sufficient detail from the relevant time period for it to make a decision based on the clinical evidence.
24. There are no obvious omissions in the documents and evidence NHS England considered. We are satisfied there is no sign the IRP got anything wrong in how it established the appropriate and relevant clinical facts. The IRP had access to information clearly detailing Mrs R’s needs in the period under consideration.
25. We think the IRP acted in line with paragraph 199 of the National Framework.
Before it made its decision, did the IRP consider all the relevant evidence?
26. Rev R also says the IRP did not sufficiently take the family’s views into account. He feels NHS England did not give him enough time to review the care home records before the IRP meeting.
27. Rev R did not attend the IRP meeting. On 4 October 2021 he emailed NHS England to say he had not yet received the full set of care records the IRP was to review. His email added: ‘Fortunately I believe that the detailed written statements that I have already submitted cover all of my concerns.’
28. He emailed NHS England on 7 October to confirm he had received the care home records. He said: ‘In view of their length and the fact that much of what is written in them is barely legible, it's not possible - given the lack of sufficient time - to submit a detailed series of comments. It may, however, not be necessary.’ He also asked for his concerns about his mother’s diagnosis and treatment to be put before the IRP. We have not seen evidence Rev R asked for the IRP meeting to be postponed so he could produce a new or more detailed set of comments.
29. The records show he and his sister were at the DST meeting on 8 October 2019. Rev R sent written comments for that meeting. We can see these were available for the IRP to consider.
30. The IRP report and appendices show it considered the IRP had discussed all the available evidence when weighing up the disputed domains. We can see the IRP discussed Rev R’s evidence.
31. We appreciate Rev R’s frustrations with the CHC process. We can see he raised concerns about making sure his family’s views were heard. We can see the IRP considered the information in Mrs R’s medical and care records. It refers to specific information from these when explaining its weighting for each domain. We can also see the IRP considered the National Framework when it discussed its weighting for each domain and key characteristic. It outlined how it weighted each domain and explained how this was in line with the National Framework.
32. Paragraph 199 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?
33. Under this question, we look at any disputed weightings in the care domains and how the IRP considered the well-managed needs principle.
34. Rev R disagrees with how the IRP determined the mobility and psychological and emotional needs domains.
Mobility
35. Rev R disputes the IRP’s finding in the mobility domain. He says his mother’s needs were severe. He believes his mother’s dementia affected her ability to move safely and so did her inability to straighten her legs. He says she did not like being moved and needed careful positioning/repositioning once she was bedbound.
36. The IRP said Mrs R was nursed in bed but her condition and osteoporosis did not need special techniques for repositioning. It said she was not at risk of serious physical harm. It assessed her needs as high.
37. The DST defines the high mobility weighting 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.’
38. It defines the severe weighting 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.’
39. We can see from the IRP report the panel considered whether Mrs R was completely immobile. It listened to the family’s account she was nursed in bed and could no longer move her legs, but could move her head slightly. Complete immobility is a key difference between the descriptors for high and severe in this domain.
40. Our adviser said the records show Mrs R’s mobility had deteriorated and she spent most of her time in bed. The IRP report noted Mrs R was bedbound. It states she had very poor sitting balance and little bodily control. Our adviser said carers would have needed a full hoist to transfer her and slide sheets to reposition her in bed.
41. The records do not show Mrs R needed specialist teams to advise on her postural support and therapy. She did not have a specialist sleep system to maintain her posture when she was asleep. The records do not indicate there was a high risk of serious physical harm when she was moved or suggest her positioning was critical. The records do not say she had a condition putting her at risk of serious physical harm.
42. When we weigh up the evidence, it appears the IRP acted in line with the National Framework and DST guidance when it considered Mrs R’s needs in this domain. Its high weighting captures the significant needs Rev R described and what the records show. There is no indication of what the IRP would have needed to see to give a higher weighting. We have not seen signs it got anything wrong here.
Psychological and emotional needs
43. The IRP weighted this domain as moderate. Rev R says it should have been weighted as high.
44. He says Mrs R was not engaging in any care or activities. He says the statement in the records she was watching TV was incorrect, as she did not have any recognition or understanding of what she was watching, including her favourite programmes. The IRP noted her social services assessment said she was often distressed and tearful during care interventions, but would calm down and care was always given.
45. The IRP agreed she was withdrawn, but said this was due to her dementia removing any understanding of her condition, not because of emotion. It said she was often distressed and tearful during care interventions but would calm down once carers left the room. It said the carers followed a ‘retreat and return’ policy and care was always then given. It said the moderate weighting was appropriate because her mood did not readily respond to prompts, distraction or reassurance.
46. The DST gives the following descriptor for a moderate weighting in this domain:
‘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.’
47. It 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.’
48. We can see from the IRP report the panel considered the family’s account Mrs R did not engage in care or activities, and the reason for this. This was important because the descriptors for this domain refer to withdrawal specifically because of the person’s emotional or psychological state.
49. The records show Mrs R was taking mood-levelling medication, did become tearful and anxious and did not respond readily to reassurance. The statements in the DST refer to engagement in care planning, support and/or daily activities and apply when an individual has wilfully disengaged from these.
50. Our adviser said the evidence shows Mrs R was withdrawn from efforts to engage her in daily living, but this was not a wilful withdrawal but due to her severe cognition impairment. This meant she had no insight into her condition.
51. When we weigh up the evidence, it appears the IRP acted in line with the National Framework and DST guidance when it considered Mrs R’s needs in this domain. It took on board Rev R’s views and adequately explained why these did not demonstrate high needs in line with the domain descriptor. We have not seen signs it got anything wrong here.
Well-managed needs principle
52. Rev R believes the IRP did not take sufficient account of the high level of care his mother was receiving when assessing if she had a primary need. He believes the IRP did not follow the National Framework. His mother was looked after very well but any change in this care would have shown she still had severe needs.
53. He feels the IRP ignored his evidence his mother’s care home specifically advertised itself as a specialist dementia home whose staff received additional training on looking after dementia patients. He said this was a key reason he chose that home, but the IRP said there was no evidence an increased level of skill was required by the care home staff.
54. The National Framework (paragraph 63) 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’.
55. Due to his mother’s dementia, Rev R wanted to place her in a care home with particular skills in that area. We appreciate his concerns about his mother’s condition and what was needed to look after her. Rev R has not specified which of her needs he thinks the IRP marginalised (did not give enough weight). We have looked across the needs and think the IRP based its view on what the evidence showed.
56. Our adviser said the evidence showed Mrs R’s care needs were met in an appropriate and timely manner. The records do not show Mrs R required or was given specialist care beyond what could be routinely given by a local authority, whatever setting she was in. We appreciate this information may be disappointing for Rev R and understand why he raised this point with the IRP.
57. We have considered if the IRP did misinterpret Mrs R’s needs because of the level of care she was receiving. We think the IRP correctly applied this principle. The IRP report gives details of the level of care Mrs R needed in each domain and how the care she received met this need. It had to do this to properly consider her needs. It also considered the level of skill needed to give care under the complexity characteristic. But we understand Rev R's concern the IRP marginalised her needs because she was being cared for in a home where staff were specifically trained and skilled in looking after people with dementia.
58. There is no indication the IRP said any of her needs were lower than they should have been because of how the carers met them. As we have set out above, we think the IRP weighted each disputed domain in line with the evidence available. We have seen no signs the IRP got anything wrong in how it considered the well-managed needs principle.
Did the IRP apply the eligibility tests properly and reach an evidence-based conclusion about them?
59. Rev R disagrees with how the IRP considered the four key characteristics it used to determine whether his mother had a primary health need. He believes the IRP was wrong to indicate there was no evidence his mother had a primary health need because the CCG assessor had told him after the DST was completed her case was ‘borderline’. He says the IRP did not consider the totality and interaction of her needs properly or his mother’s dementia as both a physical and mental illness.
60. We have no reason to disbelieve Rev R’s statement he was told his mother’s case was ‘borderline’. The conversation is not documented in the records, so we cannot consider the context or what exactly was meant by borderline. Even if Mrs R’s case was borderline, that does not mean the IRP should have found her eligible - it still needed to fully consider the submission. There will be borderline cases but we expect an IRP to consider any case in line with the National Framework, which is what we looked at.
61. The IRP said it did not take the view Mrs R’s needs were beyond those a local authority could meet.
62. 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 questions for each characteristic to guide how to think about it but these are prompts and the National Framework does not expect an organisation to stick to them exactly.
Nature
63. The National Framework says the nature characteristic ‘describes 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.’ The questions PG3 suggests an IRP considers for nature are:
• How does the individual or the practitioner describe the needs (rather than the medical condition leading to them)? What adjectives would you use?
• What is the impact of the need on overall health and well-being?
• What type of interventions are required to meet the need?
• Is there particular knowledge/skill required to anticipate and address the need? Could anyone do it without specific training?
• Is the individual’s condition deteriorating/improving?
• What would happen if these needs were not met in a timely way?
64. The IRP gave us a detailed assessment of Mrs R’s needs and condition and how these were met. We can see it covered the above prompt questions in its report (pages 12 to 14). Its report refers to clinical evidence, including from her GP. It considered her needs, the impact of these and what her carers were doing to meet those needs. We can see it considered if this care was beyond what a local authority could be expected to give.
65. The IRP recognised Mrs R was gradually deteriorating and needed care staff to anticipate all her needs and keep her safe. This included repositioning her regularly, personal care, feeding and giving her medication as needed, although she did not need much medication. Her deteriorating cognition meant her behaviour was less challenging but sometimes carers still had to manage her resistance to them.
66. Our adviser said the IRP’s description of Mrs R’s needs in the nature characteristic is detailed and considers how her needs were met. The clinical evidence showed Mrs R had dementia and relied on those around her to meet those needs. But mostly she received social care, including living in a safe place and getting help with washing, feeding and continence care.
67. It appears the IRP considered the nature of Mrs R’s needs in line with the National Framework. We have seen no signs it got anything wrong.
Intensity
68. The National Framework says intensity ‘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’)’.
69. When looking at this characteristic, the National Framework says it may help an IRP to consider:
• How severe is this need?
• How often is each intervention required?
• How long is each intervention required?
• How many carers/care workers are required at any one time to meet the needs?
• Does the care relate to needs over several domains?
• Do lower levels of need combine to create any intensity?
70. The IRP report (page 14) says Mrs R’s care needs were met by one or two carers. It said the carers implemented well-established care plans under the direction and monitoring of registered nurses. It described how often they checked her and said most care interventions took place every two hours. It said her feeding and medication needed one carer. It noted only her feeding took more time than would normally be expected in a care home.
71. The IRP said Mrs R depended on support and help for everything day or night to keep her safe and well. It did not see any evidence her distress or resistance to care made excessive demands on her carers’ skill or time. It said they gave all her care using techniques familiar to all carers.
72. Our adviser said the evidence shows Mrs R’s care could be delivered in the care home by her carers using the care plan and consulting her GP as required. The records do not indicate the intensity of her needs meant Mrs R needed specialist care beyond what could be routinely given by a local authority.
73. We can see the IRP considered the prompt questions when assessing the intensity of Mrs R’s needs. For example, it described how many carers she needed, what they did in each intervention and how long each intervention usually took. It considered how difficult it was for carers to look after Mrs R.
74. It appears the IRP considered the intensity of Mrs R’s needs in line with the National Framework. We can see no signs it got anything wrong.
Complexity
75. The National Framework says: ‘Complexity 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. This may arise with a single condition, or it could include the presence of multiple conditions or the interaction between two or more conditions. 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.’
76. The National Framework says an IRP may consider these questions on complexity:
• How difficult is it to manage the need(s)?
• How problematic is it to alleviate the needs and symptoms?
• Are the needs interrelated?
• Do they impact on each other to make the needs even more difficult to address?
• How much knowledge is required to address the need(s)?
• How much skill is required to address the need(s)?
• How does the individual’s response to their condition make it more difficult to provide appropriate support?’
77. Rev R says his mother’s dementia meant her needs were complex and caused interactions across the domains and characteristics demonstrating she had a primary health need.
78. The IRP said (pages 15 and 16) the interaction between Mrs R’s mental and physical frailty led to care needs in most of the domains. For example, she could not communicate reliably or look after herself. This meant she did not understand what was happening during care interventions and at times made her anxious and resistant. But this did not seem to be the case in the months around October 2019, when she was mainly asleep in bed.
79. It said her weight was maintained at this time and she had previously had speech and language therapy and dietician services support. The IRP said it was simple to give Mrs R the medication her GP prescribed and there was no record of recent changes to her prescription. It said Mrs R’s care was not difficult or problematic to manage.
80. Our adviser said the IRP had considered all the evidence presented when considering this characteristic. There were interactions between the domains influenced by Mrs R’s underlying conditions. There is no evidence her care was difficult or complex to manage or needed regular, intensive specialist support.
81. We appreciate this will be of concern to Rev R, who deliberately chose a home specialising in dementia care for his mother. But the records do not indicate Mrs R required complex care or care a local authority could not give. We can see the IRP considered the interaction of her needs with the knowledge and skill required to care for these.
82. We can see the IRP considered the prompt questions when describing the level of complexity of Mrs R’s care. It looked at how difficult her needs were to manage, how they interacted and how much knowledge and skill the carers required to meet her needs.
83. When we weigh up the evidence, we are satisfied NHS England reached its decision in line with the National Framework.
Unpredictability
84. The National Framework describes the unpredictability characteristic as ‘the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the individual’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’.
85. When considering this characteristic, the National Framework suggests an IRP consider these questions:
• Is the individual or those who support him/her able to anticipate when the need(s) might arise?
• Does the level of need often change? Does the level of support often have to change at short notice?
• Is the condition unstable?
• What happens if the need is not addressed when it arises? How significant are the consequences?
• To what extent is professional knowledge/skill required to respond spontaneously and appropriately?
• What level of monitoring/review is required?
• Did the carer’s good management of the patient’s needs veil their true extent as a ‘well managed need’?
86. Rev R believes the fact his mother’s condition was deteriorating indicates she had a primary health need. He says his mother’s decline was rapid and left her bedbound. We understand Mrs R’s health needs and her behaviours were distressing for her family to witness.
87. The IRP agreed his mother was in ‘gentle decline as would be expected from the nature or her disease’ (page 16). It said her care plans showed stability and there were no acute or unexpected health issues requiring spontaneous responses. It said her ‘condition was not rapidly fluctuating, unstable or rapidly deteriorating. Her care was not unpredictable’.
88. Our adviser said although there were interactions between the domains caused by her underlying conditions, Mrs R’s care needs did not fluctuate unduly, such as daily. Her care plans did not need amending and her care did not need to change suddenly. The records do not indicate unexpected or rapid changes requiring immediate specialist interventions or changes to her needs or care package. Our adviser said Mrs R’s care was following a natural format appropriate to her underlying conditions.
89. Changing needs are not evidence of a primary need, only that the person may need more (or less) care over time. There is no indication care staff had to regularly amend Mrs R’s care plans or could not meet her needs in line with those plans. There is no indication Mrs R required regular skilled intervention for her needs before then.
90. We can see the IRP considered the prompt questions when it made its decision on the unpredictability of Mrs E’s needs. It looked at the stability of her needs and whether the level of support she needed changed frequently.
91. It appears the IRP considered the unpredictability of Mrs R’s needs in line with the National Framework. We can see no signs it got something wrong.
92. We understand Rev R feels very strongly his mother should have been eligible for CHC. We hope our decision reassures him the IRP considered his appeal as it should have done.