NHS England Midlands and East

3. Mr Q complains that NHS England’s independent review panel (IRP) upheld the local integrated care board’s (ICB) decision that his mother Mrs B, was not eligible for NHS continuing healthcare (CHC) funding.

4. Mr Q disagrees with how the IRP considered the nutrition, psychological and emotional needs, behaviour and drug therapies and medication domains and the four key characteristics. He says the IRP did not properly consider the impact of what it says the ICB got wrong on the eligibility decision or the family’s views. He says it did not apply the well managed needs principle as it should have done.

5. Mr Q says this meant the IRP wrongly upheld the ICB’s decision. He says NHS England’s decision means his mother’s wrongly had to pay for her care.

6. He wants 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. 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.

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 B was admitted to a care home in January 2023 having been in hospital since September 2022. She was in her late 90s. Her medical conditions included her having had a mini-stroke (TIA), chest infections, urinary tract infections (UTIs), vertigo and vascular dementia. She was not able to bear weight.

10. The ICB did a full CHC assessment for Mrs B in August 2023. It said she did not have a primary health need. Mr Q appealed this decision. The ICB held a local resolution meeting in May 2024. It did not change its decision so Mr Q complained to NHS England. It held an IRP for Mrs B in November 2024. NHS England decided she did have a primary health need.

11. Mrs B died in October 2024.

15. 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.

16. Mr Q disagrees with how the IRP determined the nutrition, psychological and emotional needs, behaviour and drug therapy domains and the four key characteristics. We look at these in turn. Then we consider how the IRP considered the four key characteristics and well managed needs principles.

17. We also look at how the IRP considered the views of Mrs B’s family. Mr Q says the IRP did not consider the evidence it put forward. He says this led to it coming to an invalid and incorrect decision.

18. We have looked at the records. We can see the IRP considered the evidence it received before the meeting, including from Mr Q. We can see it looked at Mrs B’s medical and care records, as we would expect it to do. We can also see it considered evidence Mr Q, his family and their representative gave at the IRP meeting. We cannot therefore say the IRP did not consider evidence from Mrs Q’s family.

19. We looked at the disputed domains in turn.

Nutrition

20. Mr Q disagrees with the IRP’s weighting of this domain. He says it should be high, but the IRP weighted it as moderate. He says the ICB initially weighted this as high, and his mother was at risk of malnutrition because she had a high MUST score (a tool to see if someone is at risk of malnutrition) of 2. She had been prescribed a fortified diet by a dietician as a result and had a diagnosis of dysphasia. He says her GP referred her to a speech and language therapy (SALT) team and she often choked when eating food and had swallowing difficulties. He says the IRP mentioned the dietician had not prescribed his mother supplements, but that is not a criteria for this domain.

21. The IRP said Mrs B's weight fluctuated slightly during the period under review and it was not clear where or when she had been diagnosed with dysphagia. It said it could not find a record of her choking or of problematic coughing and the methods they had suggested carers were using to help would not have resolved choking. It said the MUST score indicated some risk of malnutrition, but it could not find further evidence for that.

22. The descriptor for a high weighting for this domain in the DST document is:

‘Dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.

or Subcutaneous fluids that are managed by the individual or specifically trained carers or care workers.

or Nutritional status “at risk” and may be associated with unintended, significant weight loss.

or Significant weight loss or gain due to identified eating disorder.

or Problems relating to a feeding device (for example PEG) that require skilled assessment and review’.

23. The descriptor for a moderate weighting is:

‘Needs feeding to ensure adequate intake of food and takes a long time (half an hour or more), including liquidised feed.

or Unable to take any food and drink by mouth, but all nutritional requirements are being adequately maintained by artificial means, for example via a nonproblematic PEG’.

24. We can see from the records Mrs B lost nearly 5kg of weight between mid-May and mid-September 2023. This was when she was given the MUST score of 2. Her weight was being monitored weekly but a dietician did not accept a referral to their services. They said her MUST score had dropped below 2 by autumn 2023. This was because she only lost under 1kg after March 2023. Her BMI records at the time indicate she was a healthy weight and we have not seen indications she was suffering from significant unintentional weight loss.

25. We asked our adviser about this domain. They said there was no formal diagnosis of dysphasia (swallowing problems) in Mrs B’s records. The use of thickened fluids happened during an episode of an acute illness, but they said there was no indication she needed skilled interventions to ensure she had adequate nutrition or hydration. We think the IRP’s reference to supplements was to in relation to the extent to which Mrs B needed further specialist treatments or care for this domain. We have not seen evidence which suggests it based its decision on this point alone.

26. We can see from the records Mrs B needed her food prepared for her, but was able to eat and drink independently. It took her up to 30 minutes to finish her meals.

27. We understand Mr Q’s concerns about his mother’s nutritional needs. She had lost weight and needed fortified drinks and soft food. When we weigh up the evidence, we have not seen indications Mrs B had needs which would have led the IRP to award a weighting of high for this domain. She did not need a feeding device, or have fluids given to her subcutaneously, for example.

28. When we weigh up the evidence, it appears the question here was whether Mrs B’s needs actually aligned with the low or moderate descriptor. In line with the National Framework where there is some doubt between two, the IRP chose the higher weighting. We think it made its decision in line with the DST guidance.

Psychological and emotional needs

29. Mr Q disagrees with the IRP’s weighting of this domain. He says it should be high, but the IRP weighted it as moderate. Mr Q says his mother had hallucinations, such as being kidnapped and that she was going out to get fish and chips at night. He says these were very upsetting for Mrs B.

30. The IRP said the family’s evidence she had anti-depressants referred to a time after her CHC assessment and so could not be considered as evidence of her needs at that time. It said Mrs B did appear to have some hallucinations, but these did not appear to cause a change in her care aside from her GP prescribing some medication to help. It noted she had low moods but could also be happy and the care records did not appear to record her suffering from depression or anxiety. She appeared to respond to reassurance and there did not appear to be a severe effect on her health and well-being.

31. The descriptor for a high weighting in this domain is:

‘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’.

32. The descriptor for a moderate weighting is:

‘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’.

33. We can see Mr Q suggested at the IRP meeting the weighting should be moderate/high, rather than simply high. We can see from her records, Mrs B had hallucinations when she was in hospital for a UTI. These continued when she was in the home, although care staff said these reduced as she became more settled.

34. Both the moderate and high descriptors refer to hallucinations. The difference between them is how much of an impact they are having on the persons health and wellbeing. So we have focused on this.

35. We can see Mrs B experienced tearfulness and distress. Our adviser said her carers were able to reassure her. We can see Mrs B did go into the lounge and garden at her home, and took part in activities such as music and seated exercise. The records say staff thought her mood was improving over time.

36. The records do not indicate Mrs B had a formal diagnosis of depression or had been referred to specialist mental health services at the time of her assessment. She was not prescribed medication for concerns related to this domain. We do not think the evidence indicates her hallucinations had a severe impact on her wellbeing, or that she had withdrawn from engagement with her care or activities. It shows she responded to reassurance.

37. We understand Mrs B’s presentation and hallucinations were very upsetting for her and her family. We think the IRP has acknowledged the impact of these in deciding a moderate weighting for her needs here. When we weigh up the evidence, we think the IRP acted in line with the DST guidance document here.

Behaviour

38. Mr Q disagrees with the IRP’s weighting of this domain. He says it should be moderate, but the IRP weighted it as low. He says his mother regularly refused to get out of bed or help with her moving and handling and occasionally refused medication. He says she sometimes got angry with his sister. He says her behaviour posed a risk to her health.

39. The IRP said the records indicated Mrs B did refuse care and medication on occasions but was usually compliant with care interventions. It says it was possible she was becoming more withdrawn over time, but there were no changes to her medication or care plans based on her behaviour and carers appeared to be able to deal with her easily through a retreat and return method.

40. The descriptor for a moderate weighting 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’.

41. 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’.

42. We asked our adviser about this. They said there was no indication in the records of Mrs B displaying challenging behaviour or causing a risk to herself or others. We have not seen any care plans or risk assessments for challenging behaviour for Mrs B in the records.

43. The records show Mrs B did sometimes refuse to get up in the morning. But there is no indication this prevented carers from completing all her care needs successfully. The records indicate she enjoyed being in bed, but would get up for activities and regularly spent time in the communal area without incident. The evidence indicates the question was whether the weighting should be low or no needs for this domain. But the IRP took into account her family’s concerns when it chose the higher weighting of low.

44. We appreciate Mr Q’s concerns about his mother’s behaviour. This was clearly upsetting for him to see. When we weigh up the evidence, we have not seen indications of what the IRP would have needed to see to agree a moderate weighting. We think the IRP considered Mrs B’s needs here in line with the DST guidance.

Drug therapies and medication

45. Mr Q disagrees with the IRP’s weighting of this domain. He says it should be moderate, but the IRP weighted it as low. Mr Q said his mother often refused medication, including spitting it out. She had a history of non-compliance and her pain was more than mild. He says the GP had reviewed this and increased Mrs B’s medication as a result. He says the low descriptor for this domain does not include non-compliance and her non-compliance also affected her moving and handling procedures, as it made these more difficult. He says the IRP did not acknowledge this.

46. The IRP said Mrs B’s overall compliance was good and her medication regime was straightforward. It said titration was not needed and her pain medication was simply paracetamol four times a day. It said it had not seen evidence her non-compliance affected any other domain or the provision of her care.

47. The descriptor for a moderate weighting for this domain is:

‘Requires the administration of medication (by a registered nurse, carer or care worker) due to: non-compliance, or type of medication (for example insulin), or route of medication (for example PEG).

or Moderate pain which follows a predictable pattern; or other symptoms which are having a moderate effect on other domains or on the provision of care’.

48. The descriptor for a low weighting for this domain is:

‘Requires supervision/administration of and/or prompting with medication but shows compliance with medication regime.

or Mild pain that is predictable and/or is associated with certain activities of daily living. Pain and other symptoms do not have an impact on the provision of care’.

49. There is a clear dispute here between Mr Q’s account and the IRP’s about whether Mrs B was compliant with her medication. So we have focused on this.

50. We can see the IRP considered Mrs B’s compliance with her medication regime. It acknowledged she was occasionally frustrated with how much medication she needed to take and refused it. It noted that when staff returned later, they could give her the medication. So we are satisfied the IRP thought carefully about the disputed information.

51. The records show Mrs B did need carers to give her medication, but our adviser said her medication regime was not difficult to manage. The records show a small number of times when Mrs B refused her medication. The evidence in her records would not suggest regular non-compliance, or a serious impact of the occasions when she did refuse.

52. Our adviser said her only prescribed pain medication was paracetamol, which is given for a low level of pain. There is no evidence Mrs B experienced uncontrolled symptoms, adverse side effects, or frequent medication changes or needed specialist input for her medication beyond her GP.

53. When we weigh up the evidence, we have not seen indications of the things the IRP would have needed to see to agree a higher weighting. We understand why Mrs B’s refusals to take her medication were concerning for her family. We think the IRP considered Mrs B’s behaviour needs in line with the DST guidance.

The four key characteristics

54. Mr Q also disputes the IRP’s decision on each of the four key characteristics. Practice guidance 3 (PG3) in the National Framework sets out how to consider the key characteristics. These are the nature, intensity, complexity and unpredictability of the person’s needs. PG3 includes some questions for each characteristic to help guide them in how to think about it. However, the National Framework does not expect an organisation to prescriptively answer each question – they are prompts.

Nature

55. 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.

56. Mr Q says the IRP did not comment on the skills required by her carers to manage her health needs and the consequences if her care was not provided in a timely fashion. He says it did not sufficiently consider her nutritional, behavioural and medication needs when considering this characteristic and the IRP’s comments on these areas were contradictory. He says it did not mention SALT team involvement or reflect his mother’s needs were health driven, not social (for example, the impact of Mrs B’s poor cognition and risk it caused across the domains).

57. We can see the IRP commented on Mrs B’s cognition and the impact of this in its report. We can also see it commented on her nutritional, behavioural and medication needs and looked at how her needs across the domains interacted with each other. We can see it considered the type and level of care she needed because of this. It mentioned SALT team involvement in this section of its report.

58. We asked our adviser about this. They said Mrs B was dependent on others for her day-to-day care. They said there is no indication her care involved complex medical treatment or specialist clinical decision-making on a daily basis and her carers gave her routine preventative care and supervision. This was mainly for social needs such as toileting, feeding, washing and getting dressed.

59. The term social care does not mean social activities or socialising, but areas which are not beyond what NHS England would expect a local authority to be able to organise and provide. That does include health and social care.

60. We can see the IRP considered the areas we would expect to when assessing this characteristic. The IRP said Mrs B’s care was not above what a local authority could provide. We can see it described how her care needs were met by local carers and existing NHS services. When we weigh up the evidence, we think the IRP considered all the relevant evidence and how this related to her needs as robustly as we would expect. We think the IRP acted in line with the National Framework when making its decision on the nature of Mrs B’s needs

Intensity

61. 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’).

62. Mr Q says the IRP did not consider the relevant prompt questions for this characteristic, including the frequency of his mother’s needs. He says Mrs B’s lack of cognition raised a high possibility of harm to others and herself (such as choking and malnutrition) and thus needed monitoring and intensive and lengthy interventions to sort out, but the IRP did not consider the quantity of interventions she needed. He says the IRP did not capture the extent of her needs, especially as she was non-compliant with medication and could not weight bear. Mr Q says these issues demonstrated his mother had intense ongoing care needs, rather than them being isolated incidents. He says IRP acknowledged there was intensity in several of its domain comments, so should have agreed she had a primary health need in this characteristic. He says it did not consider the severity and sheer quantity of her needs when considering this area.

63. We asked our adviser about this. They said Mrs B had frequent care interventions, but the evidence indicate these were routine, planned and predictable. The report shows the IRP discussed Mrs B’s choking risk, compliance with her medication regime and what carers had to do to provide her care. This includes them needing to monitor and cater for her continence needs closely. It said she needed 24 hour care in a care home.

64. Our adviser said Mrs B’s needs were stable during the period under review. There was no indication she had frequent acute episodes or needed specialist interventions as a part of her daily care programme.

65. When we weigh up the evidence, we think the IRP considered all the relevant evidence and how this related to her needs as robustly as we would expect. We think the IRP acted in line with the National Framework when making its decision on the intensity of Mrs B’s needs.

Complexity

66. 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.

67. Mr Q says the IRP did not address all the prompt questions for this characteristic and says Mrs B's care, especially regarding medication and her non-compliance, did introduce a level of complexity. He says the IRP report says his mother’s refusal of medication and food introduced a level of complexity to her care, so it contradicted itself when it said she did not have a primary health need in the complexity characteristic. He says the IRP did not consider fully the difficulties arising from the interaction of Mrs B’s needs or level of skill and knowledge needed to care for her. It did not look at how her poor cognition caused interrelated problems across all the domains, and therefore required high level of knowledge/skill from carers to meet her needs. He says his mother’s refusals to take her medication made her medication routine complex, and her inability to communicate her needs and concerns (in particular, when she was in pain) meant she had complex needs, as carers had to anticipate these for her.

68. The report shows the IRP considered how Mrs B’s cognition and continence issues affected her needs and how carers had to look after her. It explained how these interacted across domains, especially regarding her communication. We can see it discussed her nutritional difficulties and needs here.

69. We asked our adviser about this. They said Mrs B had interrelated needs across domains which were well understood by her carers, stable and consistently met through established care plans and routine care practices. They said carers were able to anticipate her needs and did not need to make dynamic or frequent reassessments of these and how to care for them.

70. The records do not indicate Mrs B’s care was difficult or complex to manage and she did not need specialist care, such as we would expect if her needs were complex. When we weigh up the evidence, we think the IRP considered all the relevant evidence and how this related to her needs for this characteristic as robustly as we would expect. We think the IRP acted in line with the National Framework when making its decision on the complexity of Mrs B’s needs.

Unpredictability

71. 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.

72. Mr Q says the IRP did not consider the relevant prompt questions for this characteristic, especially as they related to the monitoring needed regarding his mother’s medication and nutrition. He says the IRP did say there were elements of unpredictability in her care such as her weight changes and fluctuations in and the level of support she was needing changed too in an unpredictable manner. He says this means the IRP should have found she had a primary health need here. He says Mrs B’s risk of choking and its consequences and her non-compliance with care, food and medication were not predictable and the ways the carers cared for Mrs B could change on a daily basis.

73. We asked our adviser about this. They said Mrs B’s care needs were stable and predictable. The records did not suggest her condition was rapidly deteriorating, or that her needs fluctuated significantly on a daily basis. They said the risks associated with her needs – such as her weight – were well recognised, anticipated, and managed through established care plans and risk assessments.

74. The IRP appears to have described her needs in line with what the evidence shows. We have not seen indications of anything that would have indicated to the IRP that Mrs B’s needs were unpredictable. When someone has unpredictable needs, we would expect to see frequent or sudden changes in their care plans, or frequent need for carers to intervene outside of the care plan. There is no indication this was the case for Mrs B. We think the IRP acted in line with the National Framework when making its decision on this characteristic.

Well-managed needs principle

75. Mr Q says the IRP did not apply this as it should. She says it underestimated the extent of his mother’s needs. He says her risk of malnutrition shows not all of her needs were being managed.

76. The National Framework says IRPs should not understate someone’s needs just because they are managed well by those caring for them.

77. The IRP had to take into account how Mrs B’s needs were met when it considered the four key characteristics. We can see from the records it did that. There is no indication in the records the IRP suggested Mrs B’s needs were less because of how she was cared for. We can see she needed to be cared for, but the records do not indicate she needed more than routine, preventative and supportive care delivered by trained care staff or that her needs were hidden. We have seen no indication of a failing in how the IRP considered the well-managed needs principle.

78. We understand why Mr Q thinks his mother had a primary health need. She was clearly not well and needed a lot of care. When we weigh up the evidence, the records do not indicate she had needs beyond those which could be provided by the local authority. It appears the IRP considered the Mrs B’s needs in line with the National Framework and DST guidance.

1. We have carefully considered Mr Q’s complaint about NHS England’s decision not to find Mrs B eligible for continuing healthcare funding (CHC). We have not seen indications it got something wrong when it said she was not eligible.

2. We appreciate Mrs B had many care needs. This was clearly distressing for her family to see and caused them much concern. We understand why Mr Q feels Mrs B should have been eligible for CHC. We would like to thank her for bringing her concerns to us. We hope our explanations will reassure that NHS England made its decision in line with the relevant standards.