NHS England

3. Mrs U complains that NHS England’s independent review panel (IRP) upheld the local integrated care board’s (ICB) decision that her mother, Mrs E, was not eligible for continuing healthcare funding in March 2023.

4. Mrs U disagrees with its decisions in the behaviour and altered states of consciousness (ASC) domains. She also disagrees with the IRP’s decisions in each of the four key characteristics. Mrs U says the IRP did not apply the well-managed needs principle as it should have done, did not consider evidence from a sufficient time period and ignored the significant extent of nursing care her mother needed. She does not believe the IRP applied the incidental and ancillary test appropriately. She is also unhappy the IRP did not keep any separate notes on in how it made its eligibility decision.

5. She says this means her mother has had to wrongly pay for her care.

6. Mrs U would like NHS England to reconsider its decision.

7. CHC is a package of care for people who have a ‘primary health need’. An integrated care board (ICB) will decide this by doing a CHC assessment and completing a decision support tool document (DST). If that shows the person has a primary health need and is eligible for CHC, it will fund all their health and social care needs. Decisions are based on a person’s needs, not their diagnosis.

8. If the ICB decides the person is not eligible for CHC, the person or their representative can appeal that decision, first to the ICB and then to NHS England. NHS England will hold an independent review panel (IRP) to look at the ICB’s decision and how it reached it. The IRP can review all the evidence and reach its own decision. Sometimes that is the same as the ICB’s. But sometimes the IRP overturns the ICB’s decision and says the person should have been eligible. Then the ICB should arrange and fund a package of care for the person, if that is still needed, or reimburse the costs of care they have already paid for.

9. Mrs E is in her late 70s. In 2022 she was living at home with her husband. She had a number of medical conditions, including osteoarthritis, osteoporosis, dysphagia (difficulty swallowing) and limited vision.

10. In late 2022 she was admitted to hospital after a minor stroke. She had a further, serious stroke whilst in hospital. The hospital discharged her to a care in February 2023, as she could no longer live at home.

11. ICB assessed Mrs E in March 2023 and did not find her eligible for CHC. Mrs U appealed this decision. The ICB upheld its decision. Mrs U appealed to NHS England. It held an IRP meeting in June 2025. It did not find her eligible for CHC.

15. Before we look at the individual parts of the decision Mrs U thinks the IRP got wrong, we will address her more general concerns. Mrs U says the IRP should have considered evidence from both before and after the point at which the ICB assessed her. She says this would have given the IRP a better understanding of the extent of her mother’s needs.

16. The ICB assessed Mrs E in March 2023. The IRP’s role was to consider whether the ICB made the right CHC eligibility decision that point. It could not consider evidence from after the point of the assessment. Mrs U says the ICB had not looked at her mother’s records from when she was in an acute ward in hospital before it discharged her to a care home in February 2023.

17. An IRP will usually draw on records from the few months leading up to the assessment, for context about the person’s needs. We can see the IRP did look at records from before the point the ICB assessed Mrs E to help it make its decision, including Mrs U’s submissions to the ICB about her mother’s needs.

18. There is evidence the IRP did consider records from Mrs E’s time in hospital and her care records up to the ICB’s eligibility decision. For example, it looked at these to make its decision on the altered states of consciousness care domain. We think this shows it considered the relevant information and made its decision based on that. We do not think it got something wrong in the timeframe of the records it considered.

19. Mrs U also says there is no legal definition of what the term ‘more than incidental or ancillary' means. She says she has asked various organisations responsible for CHC to define this and none has been able to do so. She thinks the IRP could not apply correctly something which such organisations cannot define. She says this means the IRP should not therefore have relied on this criterion to decide her mother did not have a primary health need.

20. We appreciate Mrs U’s concerns about the definition of this term. The National Framework does not define ‘incidental or ancillary’ but it says CHC decisions should be made in line with the Care Act 2014. It does explain this covers areas which are within what NHS England would expect a local authority to be able to organise and provide. The IRP does this by looking at the four key characteristics of the person’s needs. We can see the IRP did this. We consider its decisions on those later in this statement.

21. Mrs U says she asked NHS England to provide all the information it held on the IRP meeting. She says the IRP failed to keep notes or minutes and so cannot justify or explain how it made its decision. She says she has not seen evidence it considered written or oral evidence when making its decision on her mother’s overall eligibility for CHC. Mrs U says she therefore has not seen the IRP’s rationale for making its decision. She considers this to be maladministration.

22. NHS England says Mrs E’s relevant clinical and care records were part of the pack of information the IRP considered. It says the part of the IRP meeting where it considered Mrs E’s eligibility for CHC was a confidential discussion at which no notes were made, but what it discussed is captured in the IRP report.

23. The National Framework says an IRP can ask all parties to withdraw while it deliberates and considers its decision. It says NHS England may (but not must) be represented to keep a record of those deliberations. It does not say notes or minutes must be taken.

24. The National Framework says IRPs should produce a full record of the hearing, including its conclusions and recommendations. This is the IRP report. We can see the IRP produced this and NHS England sent it to all relevant parties. The report explains why the IRP made its decisions throughout.

25. We next look at the parts of its decision that Mrs U disagrees with.

26. The main CHC assessment tool is the decision support tool (DST). This looks at the person’s needs in 12 care domains. These are weighted from no needs, to high, severe or priority, depending on the domain. The DST sets out descriptors to explain what each weighting means. The DST also looks at four key characteristics – the nature, intensity, complexity and unpredictability of those needs.

Domains

27. Mrs U disagrees with how the IRP determined the behaviour and altered states of consciousness (ASC) domains.

Behaviour

28. Mrs U disagrees with the IRP weighting of this domain as low. She says it should be moderate and the IRP agreed that at the meeting. Mrs U says her mother was unable to assess basic risks and would put anything left near her in her mouth. She says carers did not always follow the clear table policy which caused risks to her mother.

29. The IRP said the clear table policy significantly reduced risks in this domain. It said it considered Mrs E’s emotional ‘meltdowns’ when looking at the psychological and emotional needs domain. It weighted the domain as low needs.

30. The descriptor for a moderate weighting in the DST document for this domain is:

‘‘Challenging’ behaviour that follows a predictable pattern. The risk assessment indicates a pattern of behaviour that can be managed by skilled carers or care workers who are able to maintain a level of behaviour that does not pose a risk to self, others or property. The individual is nearly always compliant with care.’

31. The descriptor for a low weighting is:

‘Some incidents of ‘challenging’ behaviour. A risk assessment indicates that the behaviour does not pose a risk to self, others or property or create a barrier to intervention. The individual is compliant with all aspects of their care.’

32. We are aware Mrs U thinks the IRP chair confirmed a weighting of moderate for the behaviour domain during the meeting. NHS England says the chair was simply confirming what another person had said. We appreciate this confusion has been upsetting for Mrs U and increased her concerns about what the IRP did. Our role is to consider whether it got something wrong in how it reached its confirmed decision on the weighting for this domain, which was low.

33. The ICB’s rationale for its decision in this domain is very brief. We can see the ICB’s representative at the IRP meeting said there was a clear table policy for Mrs E as she had a choking hazard. We can see the other references to this in the records were made by Mrs U or her representative.

34. We looked at what the records show about Mrs E’s behaviour needs. We could not see reference to a clear table policy in Mrs E’s care plans at the time of the assessment, or in her choking risk assessment. There were no examples of her putting strange objects in her mouth during that time. We did not see indications in the records Mrs E was verbally or physically aggressive. Her GP records did not mention her displaying challenging behaviour and she had not been assessed for this by either specialist teams or care home liaison services.

35. We asked our adviser about this. They said Mrs E did sometimes refuse medication, but carers leaving and coming back to her usually resolved this. They said Mrs E moving her blanket back and forth - and other behaviours raised by Mrs U and her representative - come under the cognition or psychological and emotional needs domains, and so would not be considered here. They said the evidence indicated a borderline weighting between no needs or low for this domain. We can see the IRP chose the higher of these two weightings, which in line with the guidance in the National Framework where there is some doubt between two.

36. We can see Mrs E had some needs in this domain. We understand why Mrs U is concerned about how these were weighted. When we weigh up the evidence, the records do not show what the IRP would have needed to say to decide on a moderate weighting. We think it made its decision in line with what the decision support tool says. We do not think it got something wrong here.

ASC

37. Mrs U disagrees with the IRP's weighting of this domain as moderate. She says it should be high.

38. Mrs U says her mother had had a severe stroke in late 2022 before moving to the care home and her GP started her on anti-depressant medication. She says her mother was not simply sleepy or drowsy but often could not be woken by using a loud voice, shaking or similar methods, indicating more serious ASC needs than the IRP acknowledged.

39. The IRP said it acknowledged Mrs [name redacted] had had a stroke but could not see any other recurrence of this or similar events in the records it considered. It said the risk of harm for Mrs [name redacted] was low. It said monitoring was important, but her needs here were easily managed. The IRP also noted Mrs U had said her mother’s needs were high if based on the three month period, but low otherwise.

40. The descriptor for a high weighting for this domain is:

‘Frequent episodes of ASC that require the supervision of a carer or care worker to minimise the risk of harm.

or Occasional ASCs that require skilled intervention to reduce the risk of harm.’

41. The descriptor for a moderate weighting is:

‘Occasional (monthly or less frequently) episodes of ASC that require the supervision of a carer or care worker to minimise the risk of harm.’

42. As we said earlier, the IRP looked at Mrs E’s hospital records when considering this domain. The chair said considering this indicated a weighting of moderate rather than low. The IRP considered Mrs E’s medication when it considered the drug therapies and medication domain. It could not consider the antidepressant medication because this was not prescribed until after March 2023.

43. Our adviser said the IRP was right to say the evidence supported a weighting of moderate needs. This recognised that Mrs E had a small stroke and then a severe stroke in December 2022. We recognise that Mrs U submitted that her mother had episodes that she felt were more than just drowsiness. We looked at the records and we could not see evidence of episodes after her discharge to the care home that would constitute ASC. The moderate and high weightings both capture occasional (monthly or less) episodes of ASC. The difference is the level of care needed to manage those. As there had been none during Mrs E’s time in the care home, there was no indication she needed skilled intervention to reduce the risk of harm to her.

44. We understand Mrs U’s concerns about her mother’s needs in this domain. She had had strokes which affected her ability to care for herself. When we weigh up the evidence, we have not seen indications in the records this made her care difficult to manage or required skilled interventions. The records do not show what the IRP would have needed to say to agree a high weighting for this domain. We think it made its decision in line with the DST guidance.

The four key characteristics

45. The IRP also applies an eligibility test to help it make a decision about a person’s CHC eligibility. This is called the four key characteristics – the nature, intensity, complexity and unpredictability of their needs. This test is used to establish if the quantity or type of a person’s care needs are more than what the local authority can provide. This indicates they have a primary health need, which in turn indicates they are eligible for CHC. This is not a reconsideration of a person’s specific needs in each domain.

46. The National Framework sets out questions for the IRP to consider helping establish a person’s level of need. It is clear the questions 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.

47. Mrs U says the IRP consistently understated the level of nursing care her mother needs, as she has daily care from a registered nurse whilst the majority of care is by two carers rather than just one. She says these points indicate her mother’s care is above the level of ‘incidental and ancillary’.

48. She says the IRP ignored the interaction of her mother’s needs, especially cognition and communication and their impact across the domains so understated how intense and complex these are. She says her mother’s needs are unpredictable, as demonstrated by her putting things in her mouth at any time.

49. Mrs U says the IRP did not understand how complex her mother’s needs are, as she has complicated signs of strokes. Mrs E does not recognise the right hand side of her body is hers and cannot see out of her right eye. Mrs U says this complicates all of her needs and nurses do not all understand this complex neurological problem. This includes some not understanding other issues with her medication, such as her coagulation problems due to her medication regime.

50. She said her mother’s care plans changed frequently and deprivation of liberty safeguards (DoLS) paperwork was not there when Mrs E was first at the care home. She says the IRP wrongly dismissed this.

51. For the nature characteristic, the IRP needs to 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.

52. We can see the IRP report explains the nature of Mrs E’s conditions and how the domains interacted with each other. It considers the needs his created and how her carers and medical professionals met those needs. This is what we would expect it to do.

53. We can see from the records Mrs E did not require any specialist care at that time. The IRP recognised she was vulnerable. It noted much of her care was provided by one person, but two were needed for some aspects of her care, including transfers. We can see it considered how Mrs E’s needs across the domains interacted and the level of care this involved. It recognised she had a registered nurse for aspects of her care.

54. The IRP said Mrs E’s care regime was straightforward and not above what a local authority could provide. When we weigh up the evidence, we have not seen indications the IRP got something wrong when making its decision on the nature of her needs.

55. 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’).

56. We can see the IRP considered the totality of Mrs E’s needs and the support she needed as a result in its report. It said she needed care across a number of domains and that she received active care support from several people in her care home, including the chef and laundry person. It also said her care was straightforward to manage and she did not need continuous oversight and monitoring.

57. We have considered Mrs E’s records and have not seen evidence the intensity of her needs indicated a primary health need at that time. When we weigh up the evidence, we have not seen indications the IRP got something wrong when making its decision on this characteristic.

58. 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.

59. We can see the IRP considered the complexity of Mrs E’s needs, including what her carers needed to provide for her. It discussed the interaction of her needs and what this meant for her care. It said her cognition prevented her from explaining her needs, feelings and wishes. It said these needs were consistent and followed a readily discernible pattern.

60. We appreciate Mrs U feels her mother’s needs were complex. When we weigh up the evidence, we have not seen indications Mrs E’s care needs were complex to manage at that time. There are no indications she needed specialised medical support or carers, or that her needs were beyond what the local authority could provide. The IRP appears to have described her needs thoroughly here. We do not think it got something wrong when it considered the complexity characteristic.

61. The National Framework says the unpredictability characteristic is about the degree to which needs fluctuate and thereby cause challenges in their management. It does not mean whether everything a patient does can be predicted. Therefore, whether a specific individual event can be anticipated is not in itself an indication of whether a person has a primary health need.

62. We can see the IRP said Mrs E’s condition had been precarious when she was in hospital, but had stabilised by the time she was discharged. It noted Mrs U’s concern that her mother’s medication needed to be administered correctly. It said Mrs E’s needs were easily identified and met within her care plan, which carers did not need to change rapidly or frequently.

63. As we explained above, the IRP had to consider Mrs E’s needs at the time, so it could not consider the incomplete DoLS application. We can see it had weighted her mother’s needs in the cognition domain though as severe. This shows it recognised the extent of Mrs E’s needs in this area.

64. We appreciate why Mrs U feels her mother’s needs were unpredictable. The IRP appears to have described her needs here in line with what the evidence shows. There were interactions between Mrs E’s domains which were influenced by her underlying conditions. But the records do not show her needs fluctuated unduly on a daily basis. Her care did not have to change suddenly. We have not seen indications of the things we would expect to see which would have indicated to the IRP that Mrs E’s needs were unpredictable.

65. We understand why Mrs U thinks her mother had a primary health need at the time the ICB assessed her. She has a number of needs which required 24-hour care. When we weigh up the evidence, we think the IRP report explained her 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. We have not seen any indications her needs or care plan to deal with these changed suddenly or unexpectedly or that her care was particularly difficult to manage.

Well-managed needs principle

66. Mrs U says the IRP did not apply this as it should. She says it underestimated the extent of her mother’s needs. She says her mother did not choke because she had good care not because she had no need. She says the IRP wrongly said she did not need specialist care when she was under a SALT (speech and language therapy) professional who gave guidance to her carers.

67. Mrs U says the IRP downgraded the complexity of her mother’s care. She says Mrs E had non-standard nursing care, for example, because of the low oxygen saturation in her blood (this can cause damage to organs and tissues). She says the IRP report got things wrong about this. She says her mother could not use an inhaler due to other conditions, so not having one was not relevant to how carers managed of her condition, and Mrs E could not communicate her concerns.

68. The IRP said it had not seen indications her care was beyond what it would expect a local authority to provide.

69. The National Framework says an IRP should not understate someone’s needs just because they are managed well by those caring for them. Mrs U’s main concerns about this part of the IRP’s consideration relate to her mother’s nutrition and breathing needs. So we have looked at those first.

70. We can see the IRP and Mrs U agreed Mrs E had a high level of nutrition needs, partly due to her risk of choking. The report shows the IRP did acknowledge she had needed input from a dietician and SALT, in both the nutrition domain and the four key characteristics considerations.

71. We can also see Mrs U agreed with the IRP’s weighting of the breathing domain as being of low needs. (The ICB had weighted this as no needs.) The reference to her not using inhalers was an important point to make because it is included in the descriptors. But the IRP acknowledged Mrs E did have some episodes of breathlessness.

72. We can see the IRP had considered all the family’s written evidence and submissions. This is what we would expect it to do. Our adviser said the IRP did not marginalise Mrs E’s needs. We can see the IRP increased the level of weighting in the behaviour and ASC domains from those decided by the ICB. This indicates it considered the evidence about Mrs E’s level of need in each domain thoroughly.

73. The IRP had to look at how Mrs E’s needs were managed to fully consider the four key characteristics. But 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. We have seen no indication of a failing in how the IRP considered the well-managed needs principle.

74. We recognise how stressful and upsetting this process has been for Mrs U, especially at a time when her mother clearly needs care. We hope our decision reassures her that the IRP made its decision in line with the relevant guidance and as it should.

1. We have carefully considered Mrs U’s complaint about NHS England. We have not seen indications it got something wrong when it made its decision her mother, Mrs E, was not eligible for continuing healthcare funding (CHC).

2. We appreciate Mrs E has care needs which cause her family a great deal of worry. We understand why Mrs U feels NHS England should have awarded Mrs E CHC. We can see it commented on things the ICB got wrong during the process, which added to her concerns. We hope our statement will reassure her that NHS England made its decision in line with the relevant standards.